Survey
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
* Your assessment is very important for improving the workof artificial intelligence, which forms the content of this project
Patients Views of Homerton Hospital 2014 Appendices to Report Appendix 1: All comments from postcards by participants There are always some delays. Turkish or Kurdish interpretation is needed. Turkish/Kurdish speaking receptionist at the main reception area. More bilingual advocacy service. Homerton should provide language specific (Turkish) domestic violence services, such as drop-in. I would change the number of seats in waiting areas because in a previous occasion I was denied a seat and the staff did not have a positive attitude to patients. Staff should be supportive. Blood tests – long wait in mornings more staff AM or better planning (Waiting times 1-2 hours) AM Language code needs to be simple. Need for follow up on issues to be stronger and clearer and better reported to wider public. Need to put patient above costs. Time limits – Time with patients should be key to all care aspects, some need short some longer. Treat the individual properly and you will get better feedback. There should be cuts on staff and services, equipment and departments. Complaints = more work load to chase up = inadequate no. of staff = problems on after care, services provided, care while in hospital = lack of staff ; nurses, doctors, cleaners, clerical/IT staff etc = MORE SPENDING + (bonuses “earned” by the management for not doing enough). SOLUTION = Stop the cuts and unnecessary bonuses + spend what is necessary on equal level. Not enough attention/diagnosis problem/not expert enough, inexperienced staff. Not much attention to the patients. The food is very filthy. The staff are not polite. Even one of them swore at me. -Synchronisation of dispensing transport to provide a smooth personalised service. 1 I would change the bottleneck of communication that seems to be failing. There seems to be a real breakdown of communication between departments and this affects the QUALITY OF CARE that patients receive. There also seems to be a lack of communication between the wards (I had to repeat information too many times within a shift). Alteration about the following would be beneficial to the patients/carers/facilities and the public – will too have better communication better hospital staff and community staff and services. I had some very happy experiences with Homerton at A & E and also with pals. What I am interested to know really is about the code of practice and recording at their two services. MRSA patients should be in a side room, not in the middle of a ward, especially a ward like Cardiology. No smoking in the grounds – scrap the smoking sheds. Homerton Hospital is in the London Borough of Hackney not Turkey. Less emphasis on this minority there are other minority in this borough. Change the area of Anticoagulants. The quality of care and attention from staff towards elderly patients and their families on the wards. More staff! Management! Don’t know what’s going on. Facilities and cleaning staffing issues cleaning and medical. Admin: failure to send out appointments. Nursing! Attitude of nurses. Not good examination from the staff. Too much neglect. 2 APPENDIX 2: The Full Evidence, divided by theme Theme 1: Positive Themes The community thinks that Homerton Hospital is overall a good local hospital. The Homerton university hospital is one of the best in Hackney where you can find very good services for all. We must keep it going as it works hard for its well going. I had some very happy experiences with Homerton at A & E and also with pals. What I am interested to know really is about the code of practice and recording at their two services. Best hospital in London-it's the government that won't them money. People expect staff to see them immediately but they have things to do. Should have a support system- my daughter brings me to and from appointments. 10/10 Nice people in the Anti C clinic for morphine. (2013) Seen quickly, expected a long wait, on Saturday came to A&E and it was incredible how quickly we were dealt with, everyone was lovely and quick. (2013) I think the hospital does a wonderful job to help people. (2013) They were friendly, and reassured me. And did my mammogram for me. Neat and friendly environment. 10/10 My appointment had been reschedules but had not received letter due to move. Was given an appointment within one hour. Cute radiologist, lovely dentist. All good! 10/10 I was seen straightaway. The appointment letter I received told me to go to the wrong place. (The clinic has move room there a while ago). The general blood clinic needs more staff, queue is always very long. 9/10 One participant stated that she was happy with the services provided. The heart care and referral services are professional. Cardiology services are good, however no service was provided in terms of transport to the home. They just said “go”. The transition to Arriva had a few hiccups in the beginning but is now running more smoothly. After discussions with Homerton staff they are adding 1/3 additional transport vehicles. Homerton staff intends to be clearer about targeting transport vehicles to improve service and will focus on timely transport to those that really need it. ‘Security guards do a good job, in your face’ ‘Anti-coagulation clinic’ ‘People washing their hands is better’ 3 ‘Car parking is a lot better and safer. Car park wardens are professional. It is good that there is a crossing’ ‘Haley – good experience of getting medication and responding to the buzzer’ Day patient – gastroscopy very clean, efficient, covering all angles, good information, caring’ ‘Pain clinic – excellent’ ‘Porter service – excellent dropping you off but, because of size of hospital, stuck in department, once signed you off you are abandoned’ Sometimes department colleagues help out.’ ‘Asked me to go for an X-ray drop-in, go in on the day and that suited me, no waiting, checked names.’ Some of the staff (individually) is kind, hardworking and helpful. Although the interpreters are helpful there is not enough interpreters. This causes further problems which are hard and expensive to solve. Service is great. The website is well done and provides useful information in different language. Some of the staff (individually) is kind, hardworking and helpful. Diabetic center-good service. One woman in the group gave an account of her positive experience when she called an ambulance (due to severe dizziness) and was taken to the HUH. She received very good care and was positively impressed. One participant stated that she was happy with the services provided. The heart care and referral services are professional. Great staff, reassuring and kind. I have always found the service I have received to be first class. 10/10(Urology) I had a bad fall and fractured my ankle, knee and wrist, and had two operations on my ankle. The staff were very caring, the nurses helped when needed. Transport could be improved. (A & E) Homerton Hospital - First Class 10/10 (2013) Hospital services were the good ones, because I've been referred by my GP and I've been well checked. They've been able to identify my problem, they've fixed it and still now I'm better. (2013) 4 Treatment was very good for my hysterectomy; they gave me too many drugs though. (2013) Homerton phone & remind me which is good, always had a good experience. (2013) Operation at Homerton had a good experience. (2013) Had an operation at Homerton. Good experience, friendly staff, very quick. Only comment – Booking service didn’t book me in the first time even though I’d called, it was only when I rang to check that they said I wasn’t booked in. (2013) Praise for good service. I use the Homerton as an outpatient- HIV. The staff are supportive and professional and the recently re-opened facilities are excellent. (2013) From Cancer story: ‘(Being told you have cancer) is the worse news ever but for the want of a better word, it was made not the worst time in my life’, because, she said, of the good treatment in the Homerton. I had a broken shoulder - I received good care from carers and they were very nice. Hackney Council Adult Services ran the care scheme. Homerton Hospital was alright. Everything was done on time, and the GP kept in touch (Albion Practice) (2013) People nice and welcoming. 8/10 They did survey which enabled them to give me the right and correct treatment for my ailment. Can’t say much because I have only attended clinic here only six months. Perhaps from the reports of others who have attended longer than I, there may be needs for more improvement. 10/10 Good experience-better now than ever. The service for example in the x-ray dept is more efficient in the past x-ray taken and sent to GP. Now x-ray taken and you are given the results straight away but the doctor that you are seeing at the hospital on that day. Physio department is also very good. Only problem is am only given 6 weeks physio in hospital- I think I need more! I am just getting used to showing benefit from physio when it ends. Long wait at A&E but not the staff fault as there was lots of people waiting to be seen. Service ok once seen. 10/10 Experience was all good, have no complaints at all. Went on a Saturday and had to have transport home, only problem was Saturday night I had to wait quiet a long time for transport, about one hour. 10/10 It was good, everything about it. I had a root canal treatment. It was quick and efficient and it was quiet painless once I had the injection. That was the first time I went. 9/10 My experience in all the departments at the Homerton hospital has been very positive. The staff have been very professional, friendly and very efficient. The front desk/reception is always manned by patient, friendly, knowledgeable individuals. Booking office service excellent {also see section on serviced at Homerton hospital could be improved. The most noticeable thing is that any member of staff from porter to Dr will stop to give directions whenever I am lost. One of the things I really appreciate that staff involve me in my care by answering my questions and talk to me about what they have found or are thinking. Clean, bright, cheery surroundings. Sometimes the long waiting time. I do feel this is being 5 address with some of the things I have noticed below. However staff have always come out to apologize for the wait & actually come out of the department to speed up the waiting time for patients. Some department has a notice board with the delay time or information to say the particular consultant is running on time. To carry on doing what they are doing. Stop wasting stamp on confirmation letter, when I have said I have noted my appointment in my diary. That saving can be used elsewhere. 10/10 Clean environment, friendly staff, informative and helpful in preparation for operation. Am yet to have the operation (booked for 29/11/13) but hopefully there won’t be any bad experiences following the operation, but could answer this fully then. From my experiences at Homerton, recently and in the past, I haven’t had any complaints with regard to staff or procedures, it is the people who use the hospital that don’t look after it. For example, leaving toilets in a horrible condition - that is not a fault of the hospital, but of the disrespectful people that use it. I am due to have an operation on 29 November and on hearing Homerton came out as one of the worst I was concerned about this, but hopefully I will not find any fault or problems following my operation. 10/10 It’s a professional hospital that doesn’t lose sight of the caring aspects of its work. Long waits to have blood taken. [How could service be improved?] I don’t know- by being bigger? I consider myself fortunate to be in the catchment area of the Homerton Hospital. 9/10 (Gastroenterology, Fracture Clinic, Halley ward) Staff, registrars, consultants were always courteous, attentive, sensitive and thorough. I have always feel like my options were fully explained to me and my concerns considered and addressed thoughtfully. The care I received was good and pretty much worked. Do not always get to see a consultant, though if you insist you be will be allowed to after a wait. Perhaps the moving through of outpatients could be a bit more efficient, but it is not much worse than any other hospital I have used. The Homerton is a terrific local hospital that I have had to visit regularly throughout my life. I am sure this would be a far more unpleasant necessity had the staff and medical staff not been friendly, accommodating and entirely professional when dealing with me and my health concerns. 9/10 (Physio, Hypertension, Orthopaedics, Urology) I've no complaints about Hackney Hospital at all. I think they are marvellouos. They are so caring. I've been coming here for years. I worked here first of all, now I'm coming here because I am sick. You couldn't get any better treatment if you went private. I've been retired fro 19 years now. (2013) (Translated story from Kurdish) He has been at Homerton many times because of his health conditions. Last time he has fainted (fit) ambulance people the staff at Homerton were brilliant. They have done everything politely and professionally. His general assessments are very positive although there were a very few of staff rude and unfriendly. (2013) Excellent, although it was established I didn’t have a stroke Dr. Saastamonin afforded every service to assess my medical need. I would always choose Homerton for my medical care. 10/10 Well organized, take care as much as possible. No problems. 8/10 I was in the Homerton Hospital because I was on Walferin and I was bleeding from the back passage. I went to the GP and she called an ambulance and I went to hospital. 6 They cleaned the Walferin out and then when they were sending me out of hospital said I have to take Walferin again. But I said no, I'm not taking that anymore. So the hospital doctor said I only hope you don't get a stroke. My GP changed the tablets; I have a wonderful GP - Dr Husain at Fountain Road Practice. She is excellent, whenever there is anything wrong, she never stops until she finds out. She always listens and then explains in a way that you can understand. I really love my doctor. Since I have been off Walferin, I have been feeling wonderful. My children backed me up and said she’s not taking that anymore. She put me on aspirin. It does the same thing, but with less problems. (2013) What’s good is that I feel like I have been treated like a human being here. Everyone this morning has been kindness itself. I was in Queens earlier this year for 5 weeks, and was treated worse than an animal. I was sent because looking at Bariatric surgery. At Queens l was left lying in my own toilet for 15 hours, 7 hours, 5 hours - and I had bleeding bed sores. One day I asked at 7pm in the evening to be cleaned up, they said they were too busy and would tell the night staff. When I asked them they said they were too busy. At midnight I rang my buzzer, and they came and hung it up where I could not reach it. (They did this to all the patients). At 3am one of the nurses ran in the room, opened the window and ran out. I was left there with just a sheet - it was March, it was freezing..(2013) – comment being passed on to HW Havering My 9 month old boy was brought in with sickness and Diarrhoea and was seen promptly on Thursday night at the A & E. Nice staff, friendly. But brought in by ambulance at 9 pm and not put in a ward until 4:30 am, the waiting time is an issue. It is a great hospital and to be fair they are busy. 6/10 Best hospital in area- lesser of evils. Most staff was good but non-nursing staff have poor patient manners. Better access, it’s hard to get to Homerton. 7/10 15 min- the wait and the x-ray, very quick. It was a nice surprise. Not had a bad experience. It has already improved with waiting times. 10/10 I chose Homerton even thought I live in Leytonstone because I fear going to Whipps Cross. I don't feel like I was treated like a human being there. Their attitude was indifferent, put on. [Have you noticed the difference at the Homerton?] Yes the reception staff was very nice, if they don't know something they tried to find out. I've seen a podiatry consultant, and all the treatment was lovely - no problems - and I haven't had to wait we were seen on time. (2013) Homerton is very good - there's not really anything that could be better. I've been to outpatients - it’s just that the cab has been held up and that's not their fault. It's Monday morning traffic. Generally find the transport is OK (2013) Services were good, we arrived late because of traffic but called up and it was alright. They still saw us quickly. (2013) Good, much better than Whipps Cross. (2013) Nice personnel and fast service. (2013) Very good, happy with services (2013) 7 The service at the Homerton is really good. I had a stroke a few years ago and knee replacement 11 months ago. The nurses were nice and the physios were really good. Even the food was nice! The after service was really good. They came to the house for 3 months after the stroke (1 month after the knee). I don't know what I would have done without them. In every case it is the after service that is really good for me. There is nothing bad or could be improved considering the way things are. Rating 8. (2012) I go to the Homerton because I have cancer. The doctors are good, the nurses are good. I got a letter and went for an MRI scan, I got a ticket and waited to be seen and then I had the scan and then I saw the doctor again and he told me it hadn't grown. I don't take any medication. Everything is good I have nothing to complain about. (2012) The hospital is good, they looked after me - and gave me follow up to other hospitals, which is still going on now. They booked me in to other things, which led on to treatment. It was good, the staff were nice. I stayed overnight and had breakfast. (2012) Homerton Hospital is good - I have fits from time to time and I end up in A&E. But I've been there before for other things - generally I think its good - there's nothing I can think of that would make it better. (2012) My daughter is 7 she is disabled and we use the Homerton, Royal London, Barts and Moorfield. Everything about it is good - when I call an ambulance one comes, and they go out of their way to treat her. They treat her good. They look after my daughter good. [Is there anything that could be better?] One time my daughter had an appointment and it was a long time ahead. The school helped me, they rang up and explained that it was urgent, and then they gave me an urgent appointment. (2012) Patient transport could be improved!! As I visit Harriet Spencer and Dr. Luire my epilepsy, I would like to say many thanks for saving my life, also the way the doctors spoke to you as a person. Thanks for the way you helped my wife after her accident. Chris Barrick and the rest of the team and women’s outpatient are amazing, friendly, helpful, caring and head and shoulders above any other hospital or surgery department I’ve dealt with. Waiting times are often long. TV channel blasting out is a bit of a nightmare in the waiting room. Politer people in the switchboards. 9/10 (Women’s outpatient) My experience was good at this department, especially if my consultant is around because he listen and explained the next line of action to me concerning my daughter this is the kind of person I need in my situation not those that will add to my worries. (referring to Dr. Sagohenko). Sometimes I have to wait longer than expected, may be due to the nurse weighing the kids. Authorities should look into the waiting time not because of patients or carers but the children; you cannot have them in one place for longer times. 9/10 (Starlight Unit) Homerton Hospital is very good. On point. When I went for my tonsils, I was also weighed. The nurse asked me if there was anything else – and I said what about these white spots under my eyes, and she was able to immediately say – don’t worry and explain to me what it was. (2012) I went to Homerton Hospital for a scan, and I cannot tell you what a brilliant experience. A young Asian woman did the scan, she was absolutely amazing. My only complaint is that the gel they used for the ultra scan stained my shirt. (2012) 8 I went for a breast scan – I thought they were amazing, and so quick. They said you will hear from us within 2 weeks, and I did. (2012) At my breast scan they told me that 40% of women don’t turn up. The woman who did the scan couldn’t have been nicer. (2012) Homerton is OK - the appointments are on time, I don’t find I am waiting. (2012) They sent me an interpreter when it was important, when it was a repeat it was OK without. When I needed one, there was one. (2012) The heart place is brilliant [at the Homerton] – I can’t fault that – if that is what you are going in for, it’s the best. (2012) Homerton Hospital has greatly improved over time. From Quality of Care workshop group: Homerton has improved greatly over time, one participant says that it does seem as though Homerton is trying to accommodate the community’s needs and address the many different needs of the community. Participant B was a representative for a larger voluntary group for woman’s immigration advocacy. Participant B was expressing the views and opinions of their community base. “Over the years I can definitely see real improvements in Homerton. I’ve been working in Hackney for the past 15 years and I’ve definitely seen some real improvements. I hear this from my clients too. What they tell me now is so different from what they told me a few years ago. Homerton is dealing with the growth in the community well, the expansion of the hospital was really necessary, and they’re working more to address the different needs of the community. They’ve done a better job at improving how they address ethnic minority needs and sensitivity towards these groups. There are projects now for the interpretation of healthcare paperwork. This project is meant to assist those who do not speak/understand English fluently understand and complete medical paperwork. Homerton also has started volunteering projects that are meant to be more inclusive of Hackney’s diverse population. Good experience-better now than ever. The service for example in the x-ray dept is more efficient in the past x-ray taken and sent to GP. Now x-ray taken and you are given the results straight away by the doctor that you are seeing at the hospital on that day. Physio department is also very good. Only problem is am only given 6 weeks physio in hospital- I think I need more! I am just getting used to showing benefit from physio when it ends. Long wait at A&E but not the staff fault as there was lots of people waiting to be seen. Service ok once seen. 10/10 ‘Concerned about cleaning but, now it is much better…in the A & E not the waiting room, a year ago it was filthy in the lifts’ Maternity services Quality of Care group noted that what works well at Homerton is the Maternity ward: Participant A has birthed all her children at Homerton, the first in 2008. She received excellent support, emotionally and logistically. She received frequent emails and 9 information regarding her appointments, the reasoning for them, and additional resources she can seek out as a mother to be. She was given emotional advice as well, something that is outside of traditional roles of hospitals. She emphasized how much this meant to her, that the time they took out to understand her needs and help her. The emotional investments that the maternity ward showed her made her want to return to Homerton for every birthing. “The maternity facilities are excellent; it is the one thing that Homerton does right. Not just right mind you, but wonderfully.” The hospitals location is central and easy to get to.: Participant C was a representative for a larger voluntary group for immigrants. Participant C was expressing the views and opinions of their community base. Homerton’s location is central to Hackney, making it accessible in regards to time. The service is “alright”, additional emphasis was placed on the Maternity Ward. I gave birth at the Homerton. The staff was very supportive. They helped me bath and feed my daughter and showed me what to do. Sometimes though the nurses can be really busy and they are not always around. Sometimes they take their time to answer the bell. [Rating 8] (2012) I gave birth at the Homerton, the nurses and doctors were good, very supportive and nice, like sisters and brothers. (2012) Maternity service Interview 1: What was good about the service? Nice new unit, water birth, own rooms, buttons everywhere, new technology, nice feel. You think you are really supported, you are reassured that all will be OK. Maternity service Interview 2: What was good about the serivce? What’s good is that at Lower Clapton they are very caring and efficient and the records are up to date. All the doctors care at the GP, they are fantastic. Maternity service Interview 3: What was good about the service? What is good is that the baby was delivered successfully and the standard was OK in terms of hygiene and the staff being helpful and friendly. We've come in for ante natal scan - very good service, very happy. Appointment was on time, happy with the way things organised, the staff were all very friendly and polite (2013) They were friendly; waiting was short/maybe because I was pregnant. Reception staff is very good at emergency unit. I feel that some nurses at Maternity are rude. However my midwife is great. And also maternity helpline is great. 8/10 Neonatal care - nurses were supportive and explained procedures (2013) From a longer story: 2012/2013 antenatal care also excellent, midwife led care, I could not have asked for more. The Antenatal service is very good. Its just the waiting can be poor. I had an appointment at 9.30 this morning, and I was seen at 11am. When I came for my scan, the waiting was fine - just 10 minutes (2013) 10 I had a knee surgery at the Homerton, it was very good. They were very nice to me. I appreciate the time I was there. My daughter had two children there, it was very good. 10/10 [First language Yoruba] (2012) The nurses respected my views and they took care of me. Every thing was good in there in Homerton Hospital. I don’t have any comments to make about Homerton Hospital. To my opinion everything was perfect in there. 10/10 (Mother and Baby units) Rheumatology department and Blood Clinic ‘Blood clinic works well in the mornings, not good in the afternoon as people standing and it’s crowded, very little space’ Am able to attend blood clinic at 7:00 am which allows me then to be able to go home and have breakfast and then attend the Sharp End. Am under the Rheumatology department who are very good- I see the specialist named Diane Paul- she is beautiful and Dr. Gorman who is good. I don’t know how is could be improved- always being cleaned and painted, staff very friendly – in the receptionist department in main hall and Rheumatoid department. 10/10 I find the blood testing clinic efficient and friendly- seems well run. I go to an annual Rheumatic Clinic for checking on osteoporosis and find that efficient too. Reception seems competent and always manned. (Excerpt from another comment) And then I went for a blood test. I went at 8 o’clock and got in about 9 o’clock. Very nice staff, very helpful. I asked what time people started coming, and they said sometimes they come at 6am to make sure of the first appointment. They described being abused by a woman last Friday who expected to be seen straight away. (2012) I find the blood testing clinic efficient and friendly- seems well run. I go to an annual Rheumatic Clinic for checking on osteoporosis and find that efficient too. There was gentle and quick. I often go for my M.O.T. in October. When I have my cardiac, they told me to report to my GP in 24 hours. I did so but the result never reached. 10/10 (Cardiac, Blood Tests) The nurses and doctor is very friendly. 10/10 (Rheumatism, Blood Test) Fair queuing system and quick service. Too many people sitting close together in a small space. Bit more room and more phlebotomists. I have always found my experience at the Homerton very satisfactory. 9/10 (Blood test) ‘Blood clinic works well in the mornings, not good in the afternoon as people standing and it’s crowded, very little space’ Although department was closing staff took my blood, very quick and efficient. NB- have since heard department opens at 7:00 am, publicity needs to go to GP practice information and management of opening hours. Had to have MRI scan, was very upset that it had to be done by private company wanted it done by NHS- lack of liaison between private and NHS. Friend has an MRI when he went to see consultant, results of his MRI the consultant had not been sent them. Waste of doctor and friends time. Also MRI scanners in very 11 unsuitable position for patient. Car park John Scott Centre and in the grounds St Anne’s hospital- difficult for people to find it. 8/10 (Blood test) I find the blood testing clinic efficient and friendly- seems well run. I go to an annual Rheumatic Clinic for checking on osteoporosis and find that efficient too. Reception seems competent and always manned. I had a very bad experience in December 2011. A wrist fracture which needed pinning, taken to a ward and shown a bed and left there. Couldn’t undress self because of arm- was not offered tea or spoken to. Husband found me eventually, helped me undress etc. During the night elderly woman in next bed called constantly for help, no nurses came. I got out of bed to find a nurse for her. Attention was perfunctory. Later she cried again and fell out of bed re-breaking a hip. I offered to her relative to complain but they asked me no to intervene. My initial care was poor/indifferentmy neighbours care was very bad. I think they need to look at the appointment system. I never, ever get an initial date/time. That isn’t changed very quickly or at least one if not 2-3 times. Each time a new letter, stamp sots etc. I hope my bad experience about was a one off as I find the other clinics good. I think the Homerton has improved since I’ve lived in Hackney for the last 20 years. I have also used the walk-in GP surgery which fantastic for out of hours accident and illness. I also had a good experience at A & E. 5/10 (Fracture clinic, Blood clinic, A & E) Reception staff busy but friendly very little delay in appointment time, consultant very thorough and pleasant, nurse was friendly. Too many TV screens in waiting room. I know there are long waits at times for blood tests, is it not possible for GP practices to take on more routine tests? My practice does my regular blood tests (don’t know how practical this is). I visit the hospital regularly and my experience has generally been good. I think its really important that departments and staff not be farmed out to private agencies or companies. This inevitably lessens commitment to an institution and can only give poorer service. 9/10 (Rheumatology) Extra: Enter and View to Neurological Rehab Unit Good Points: 1. The patients in general spoke highly of the care they are receiving, particularly the rehabilitation. One said “The activities are good, they are all helping with rehabilitation” and another “When they said I would be here for 4 months, I didn’t think it would be enough to get me walking and going upstairs, but in fact it’s been less time” “This place has such a good reputation, and I can see why”. 2. The patients in general spoke highly of the staff, for example “The therapists here are miracle workers” and “The nurses do a marvellous job, whatever they are paid it’s not enough” 3. The staff we spoke to felt they were well supported both within the team and by the hospital. The impression we had was that staff thought this was a good place to work, if “knackering”. 4. We were in the unit at lunch time, and saw a calm atmosphere with patients being helped to the dining room where they needed help. Some relatives were present, and they too seemed comfortable and calm in the unit. 5. We noticed and heard about camaraderie between patients – and staff reported that patients supported each other. 12 6. We heard 2 examples where issues had been raised with senior staff and sorted out. One from a family member and one from a patient. The patient said “the matron is excellent”. 7. Patients were generally happy with the food Theme 2: Quality of Care Attitude of Staff Staff sensitivity training: Homerton Staff need more training in bedside manner, ethnic diversity and general sensitivity training. Participant A recently went to Homerton for a set of broken ankles and torn ligaments in her knees. She spent 12 days in Homerton for her surgeries. She was admitted into Homerton Friday night but was not in surgery until Monday. By Tuesday night she was in a hypertonic shock from a loss of blood and fluids and her kidneys were failing. In the time between her surgery and Tuesday night she had repeatedly told nurses that she did not feel well but her complaints were ignored. By the time her health collapsed and she was in hypertonic shock the staff began taking action without talking her through 1) what was wrong and 2) what they were doing to remedy it. Furthermore, no one explained why such a severe loss of fluid went unnoticed until the point where her life was in danger. She felt this was an egregious misconduct and blatant example of Homerton’s poor patient care. She said there was such poor communication between staff and such little concern for patients that she is sure her failure in health was on Homerton’s hands. After her injection she was given a blood transfusion, but still, no one would tell her what was wrong and what was being done to her to improve her health. There were no doctors readily available to address her concerns and her requests for understanding went ignored by nurses. She also continuously requested that her catheter be removed however the nurses were unable to make this decision as it has to be ordered by a doctor. Eventually after consistent pleading a nurse took it upon herself to remove the catheter herself, despite not having a doctor’s approval. Participant A emphasized how much this meant to her because she understood that the nurse was risking their job in doing that and that it was such a relief to finally find someone who took her pain seriously. However, Participant A also noted that the fact that it was a failure in communication that made this risk necessary. “The doctors weren’t around to give approval, they never came round to check on me, and they never cared to see. So the nurses can’t do anything, I don’t even know if most of them were actually telling the doctors I wanted the catheter out.” ‘A nurse shouldn’t have to risk their job to help their patients.’ She was in Homerton for a total of three weeks, and the whole time she felt there was poor communication between staff but she felt this more so during her post-op appointments. ‘I came in after my surgery to get the plaster removed and check-ups and what not and I find out they lost my file. It was gone. And no one could tell me what happened to it. So I go on for weeks with appointment after appointment and each time it’s a different diagnosis because each doctor says something different. I go in expecting to get the plaster off and they say no and I go again and it’s someone else and he says come back to get it off but then I’m told no again by a different doctor. So the whole time I have to be dependent on the memory of nurses who have seen me in between doctors. My whole experience it’s all just been very unsympathetic, there’s been no apology for any of it.’ Empathy: The staff is not aware and/or prepared (lack of in-depth training) to deal with some sensitive issues such as domestic violence and mental illness; often presents lack of 13 empathy, humanity, compassion. Participants stated that the reason for the lack of care is due to training but also the culture of the hospital is one that obviously lacks care. Not much attention to the patients. The food is very filthy. The staff are not polite. Even one of them swore at me. Management! Don’t know what’s going on. Facilities and cleaning staffing issues cleaning and medical. Admin: failure to send out appointments. Nursing! Attitude of nurses. If you're really sick the GP refers you to the hospital but it takes ages. I went to A and E and they just gave me a painkiller. Then I went to France and had an operation because that's what I needed. I went back to the hospital and told them I'd had the operation and they didn't apologise or anything or offer me any care. I was losing blood and had to make it clot with coke and tomato puree. They should treat people in A and E properly, not just sends them home with painkillers. 1/10 (2012) Quality of care and treating all patients equally. If care is not satisfactory patients should be able to discuss or complain without delay. Some things are important and cannot leave. Sometimes care has really or has cost likes including my own. Not good examination from the staff. Too much neglect. Male participant on medical ward: felt dismissed and ignored by staff. No coordination – felt bad for asking for help. Wouldn’t want to go back there again. [Kurdish/Turkish speaking patient] The nurses- attitude and training [Comment card in response to “If you could change 1 thing about the Homerton..] Attitude of some staff, rudeness/arrogant, unwilling to provide information appropriately. Lack of thought- my son needed blood tests twice daily whilst inpatient on Starlight Ward, he was very distressed by this, was an 8 year old, went in for 3 days and was transferred to another hospital and they put in a vent straight away and it saved him a lot of distress Got a diagnosis, tidied up well, it’s cleaner, it’s more tidy. More people you can ask to help. Drug addicts no longer walk on the wards. Moved beds at 12:45 pm. didn’t get antipsychotic, asthma, diabetic medicine for 2.5 days. Woke up every 2 hours. If they communicate between departments and listen to patients a bit more. Happy patients makes happy ward. Someone should come under cover and see what it is like. 4/10 Not a great deal was good about my experience. Lack of passion in their work. Not treating patients as numbers and a thorough follow up of treatment medication. 2/10 (Orthopedic) I did not have to wait very long-staff were polite and efficient and appropriate tests were carried out. An ongoing experience of patients, including myself, is doctor’s inability/unwillingness to engage with us on an equal basis. Communication skills are often sadly lacking. I don’t think the manner of staff, especially doctors, is peculiar just to the Homerton. I think it is an issue for training that patients should be treated with dignity and respect. As a former public service worker- I know how difficult it can be 14 when working on the front line, but listening to peoples concerns etc. is essential for delivery of a good service. 7/10 (ENT) The staff are not so good at A&E. The receptions don’t want you to be there. They are not friendly like at the GPs. There is no ‘smile for the customer’ ever. I have been there loads because we live really close – so I usually go there if it is the weekend and there is a problem with the kids. But I don’t go there if I cant get an appointment with the GP. It’s a big thing to go to A&E; otherwise I would deal with it myself. When you go to A&E it’s a really long wait – you are better of dealing with it yourself. The care is OK at A&E; it’s just the attitude at reception. They make you feel really uncomfortable when you are telling them the problem. You feel like they’re thinking you shouldn’t be there – that you should just go home. Some people go there for the slightest thing, but I don’t, but I guess I am just feeling like they think that. I do call the NHS Helpline sometimes. I don’t use the pharmacy or the GP out of Hours. Like when I go there [Homerton] for other things – maternity deliveries and appointments for myself been all fine – in other departments – its just when I go to A&E. I would rate A&E at 4 out of 10. (2012) My friend had gall stones, her daughter brought her into Homerton. She had a trolley and had to wait a while, she had to wait over an hour so she dressed herself and walked around the corridor to find her daughter who also had not seen any medical staff so they went home. When she reported it, the hospital said they had sent someone to see her. She had to take 30 something pills; now she is not taking any medicine because they can’t operate because she is too old. (As told by friend) Man on bus with walking aid (black man in his 60s), said he went to Homerton because his knee kept collapsing. He was given steroids for his knee. He got very angry because he felt there was no diagnosis and because he was have reactions to the steroids. He was sectioned. Having no family in this country, had to wait for his brother to come over to help him get out, and in this time lost his housing. Then went to Whitechapel to get right treatment. Got temporary accommodation through Peter Bedford. (2012) My recommendation would be that rather than us taking part in OT and other staff training, is that as part of their training they come for a day and see my life - 1 to 1. Comments on Nurses I had TB as a child, and I have asthma now - it can be very serious. I feel that in the NHS it is treated as "just asthma" and it is not seen as urgent. I recently had a crisis and went to Homerton A&E - I waited 3 hours - then I went out for 1 minute and missed when they called me - and I had to wait another 3 hours to be seen. This was a weekday in the day time. When I was seen by the nurse I had no confidence in what she was doing as she kept going to and fro asking for advice. Now even if I am very sick I don't go to the emergency - I just wait for a proper GP appointment. I was an in-patient at the Homerton. Everything went quite quickly and smoothly but the aftercare in the wards wasn't good. I don't think the staff was helpful enough; it seemed to be too much trouble for them to help. Sometimes there was no one around on the ward, they were never at hand. I think there should be more experienced staff on the wards. We could go back to the old days where you had a matron on the wards. 7/10 (2012) Case 1: Men’s medical ward a couple of years ago – hip replacement. General banter on the ward was good amongst patients. Operation not a great success. Problem is with nursing staff – constipation – no bed pan for when he needed to go – had to go to the toilet – didn’t make it on time. Nurse brought soiled clothes to him in a plastic bag & asked what 15 he wanted to have done with them – didn’t ask how he was. Felt it was typical of nursing attitude. Only one or two were bearable. People of a certain age need to be handled with dignity – a man on his own – no comfort offered. Very isolating experience. Aftercare – no support – District Nurse came in every day but wouldn’t do anything practical to help i.e. shopping. Regarded as a bit of a pain at this age. Consultants don’t want to know. Wants to see a change and make a difference. Attitude of Staff: The caretakers and nurses are rude towards the patients. This is a risk to the safety of the patients. In an example the rudeness of the caretakers caused a patient to fall from her bed, break her hip and die. This occurred 2 years ago. The coroner made his inspection however no legal support was given to his wife. This was left to the initiative of the relatives of the patient. However as this is a public crime there should have been an automatic complaint procedure. Reception seems competent and always manned. I had a very bad experience in December 2011. A wrist fracture which needed pinning, taken to a ward and shown a bed and left there. Couldn’t undress self because of arm- was not offered tea or spoken to. Husband found me eventually, helped me undress etc. During the night elderly woman in next bed called constantly for help, no nurses came. I got out of bed to find a nurse for her. Attention was perfunctory. Later she cried again and fell out of bed re-breaking a hip. I offered to her relative to complain but they asked me no to intervene. My initial care was poor/indifferent- my neighbours care was very bad. I think they need to look at the appointment system. I never, ever get an initial date/time. That isn’t changed very quickly or at least one if not 2-3 times. Each time a new letter, stamp sots etc. I hope my bad experience about was a one off as I find the other clinics good. I think the Homerton has improved since I’ve lived in Hackney for the last 20 years. I have also used the walk-in GP surgery which fantastic for out of hours accident and illness. I also had a good experience at A & E. 5/10 (Fracture clinic, Blood clinic, A & E) I went to Homerton Hospital on Christmas Eve 2012 with pneumonia; it was not a good experience. I would press the buzzer at my bedside, for example for help to go to the toilet, and no-one would come. Especially after 9pm at night. I had to go to the toilet in my bed, and it stayed dirty until Boxing Day. I was in the hospital for 16 days. I was given medication. (2013) I came in Wed for an overnight procedure. On that night they fitted the attachment and half hour later when the fluid started draining I felt faint and nauseas so they turned it off until Friday afternoons. No one checked to see if it was off, so it did not drain for two days which was a waste of time. In Lamb Ward there are 2 or 3 people who are always making noise and throwing tantrums and they get the most attention. Other patients do not get attended to, I feel left out, there are not enough resources for everyone it does not seem fair. The nurses do not have time for the rest of the patients. More resources are required, more staff is needed and the attitude of the staff is like a gangster attitude, nurses have different attitudes to different patients. They can be unfair for things such as visiting hours. The rules vary between patients. The price of food in the hospital is too high, it is one of the poorest boroughs in London, and the price of food should reflect this. (2013) At A & E no good experience. It was night time visit. Nurses preoccupied with chatting to police officers at desk. Very dismissive attitude to all patients, after 2 hours I asked when I would be seen, she spoke to be in such a way I would either have credit or shouted (I cried feeling humiliated). I asked for a complaint form. She gave me a blank piece of paper. I left at 2:30 am went to London hospital next day. At out of hour’s appointment doctor saw me 16 within 20 minutes of appointment. She would not help me and referred me back to my doctor who was on holiday. A more sympathetic manner, treat each person as an individual, keep people away of approx. how long they would have to wait and update it, a more professional approach would promote more. 1/10 (A & E, out of hours) Consultant surgeon very good, operations successful. Ward sister very good. Individual consultants in diabetics department friendly and efficient. Some nursing staff. Eg. Those dealing with public had poor attitude, gave out wrong information to relative, causing concern. Lack of motivation/poor attitude in dealing with simple things such as Signing. 1. Systems should be reviewed plus knowledge of systems. 2. The management should get out of their offices/meetings and walk around the hospital more acting where necessary. 3. Better management of junior staff. 8/10 (Surgery, Diabetes) I had an operation; they told me that after the operation I might need a stomach bag. So I spent from Wednesday when I had the surgery to Saturday really scared about having this bag and not being able to go to the toilet. The nurse was not reassuring and no one told me anything until Saturday when they said I wouldn't need the bag. I've made a complaint to the head nurse. They need to be clear and tell you what is happening and how the operation went so people aren't left worrying. I was surprised that they didn't come round to tell me. 5/10 (2012) On RHRU Unit: Only nursing staff are allowed in the kitchen at the RNRU – patients have to be accompanied by staff. This means my friend has been in the kitchen once or twice in 4 months – and so is not being rehabilitated to be able to cook and use equipment when he returns home (2012) On RHRU Unit: Because staff are in a hurry in the morning (at the RNRU) they dress the patients rather than enabling them to dress themselves, so when I took my friend home, he wasn’t able to put on his T shirt or his coat. He just can't do it. He's not getting basic skills in looking after himself. (2012) Better post-op care. Better choice of food. Reintroduce basic nursing care. Bring back matron. (2013) Night Nurses Night staff have to be aware of patients needs, not their own, i.e. not to open windows in a ward in winter when the patients are only covered by a sheet, not a blanket When the shift of nurses change they get confused about patients needs. I went to the Homerton hospital. The doctors are ok and it was alright getting an appointment. The day nurses are ok, but the night nurses are very unpredictable. At night you ask for medication and they say they'll come round in two minutes but then its two hours later and you have to ask again. The children's bit of the hospital is filthy. In my ward there was an 87 year old Indian woman who was lovely and she couldn't get up- she had night nappies. She said she needed to be changed and they said they didn't have any nappies left. This was on the Lamb ward. They left her there until the morning and by that time she was soiled. About four of them were left the whole night. They need to clean the hospital more and have better service from night nurses. (2012) 17 A + E long waits if not "urgent" and send you home in the middle of the night. Comments on Doctors I think from what I know about Homerton are wards are a great place to get well but I think that sometimes patient views are heard and the “Doctor is always right” stigma still prevails this needs to be changed as sometimes the patients know best. There are some rude people among staff, not all are rude but some of the doctors can be very mean. I went to the Homerton, the staff doesn’t treat patients well, they are sharp and tell the patients off- they don't give the patients food on time. The patients are in the wrong wards which aren't to do with their illness. The doctors are all students; they don't know how to treat you. They have sex on the patient's beds. There should be officer control of the wards and hidden cameras. Skilled doctors are needed. I had a follow up appointment there but I refused to go back. 3/10 (2012) Another member of my family aged 72 recently has a hip replacement when to the Homerton as she has a problem with her dressing. When she went into see the doctor he told her 'what are you her for', did not see and sent her away (2012) The hospital was ok, but I was on a waiting list for a year and referred to a lot of different doctors. I was seen ok in the end and the community nurses were good- I was referred to them after my operation. But my operation did not go well and I needed a lot of care afterwards, but the community nurses were good. 8/10 (2012) (Translated story from Kurdish) Although she has been taken to the Homerton 3-4 times because of fits but the doctors haven’t taken her conditions seriously, they couldn’t diagnose her epilepsy. Now she has been transferred to UCL at near Holborn. She is happy with treatment and attitude of staff over there. She doesn’t want to think about her experiences in Homerton. (2013) The Physiotherapist did come out and get me. 12 year old female said the treatment was OK. Out of hours on Friday 8th November my daughter was seen by a male doctor, he didn’t have time to give a proper appointment because he was the only one on duty. It wasn’t until the patient told the Doctor that she had surgery twice recently that he took what she was saying seriously. The Doctor should have more time, he was a decent person. He should have gone through her medical history. Implications are that if someone is ill, had recent surgery, the doctor didn’t pick up on her illness because he was on his own. The patient had to encourage the Doctor to help her. 8/10 Participant F immigrated to the UK about three years ago. She describes her own experiences at Homerton as well as those of her family. ‘Two years ago my cousin lived on Stoke Newington, she was pregnant. She went to Homerton and was admitted on high blood pressure but eventually that was preeclampsia. She goes in the afternoon and at 1am I get a call that she is near a coma. How does that happen? Her English was not good so we tried to tell the doctors what she was saying, that if felt like knife was stabbing at her life and they just ignored us. They didn’t listen, they said “How can a knife stab at her life?” At this point the facilitator steps in to ask her elaborate on the situation. He asks 18 how else the doctors reacted and she describes how they brushed off her family’s translation and reiterated how they were going to observe her. He asks what else they tried to translate and Participant F describes other translated idioms regarding pain that are not grammatically the same in English. Participant F says that the doctor’s power let him get away with ignoring her. Essentially, it was implied that the doctor’s ethnocentrism prevented him from valuing the interpretation of the family. ‘The next day she is in a coma and we begin asking if we can get the baby out, if the baby is in danger to save it. The doctor’s tell us no that they want to focus on her, and then the baby is in danger. The doctors didn’t listen and then they see the baby was sitting in her blood. They did an emergency c-section and see that the baby had died, it had choked on the blood. For five months she was still in a coma. Just so much wrong, so much neglect.’ Participant F describes how she and her family would try and talk to the doctors but ‘they had that power, they ignored us. They were so dismissive.’ She describes more idioms for kinds of pain that are roughly translated because of colloquial differences and the group translates them to phrases like “stabbing pain”. However Participant F explains that this was not done by the doctors. She then begins describing her own experience where when shortly after she immigrated she went to Homerton because her (perhaps self-diagnosed) thyroid problem was preventing her from sleeping. After not having had any sleep for two nights she went into Homerton where her suggestion was dismissed, she also had language barriers with those who saw her. She explained that no one tried to get a translator for her and they sent her along with a referral without any explanation that she could understand. She was told to go to another health office which she when she arrived she realized was a mental health office. Because of her language barrier she did not understand that it was a mental health office and that they were treating her insomnia as an issue of mental health as opposed to the thyroid problem she had previously experienced. She was given a prescription for what the group surmised was antidepressants. The prescription was not explained to her as she did not know how it would affect her or what exactly it was treating. She described having hallucinations on the medication and was bedridden to the point that she could not take care of her son. After two days a social worker visits her home and begins helping her by finding resources to translate what had happened to her. Palliative medicine When I was on the ward [at the Homerton] they gave me 5 tablets instead of my usual 1, I was delusional – I was seeing things I shouldn’t. Then I was nauseous one night, and I asked the nurse for a bowl, and she said I would have to wait. Then I vomited all over the sheet. Some of the nurses don’t seem to care, some of them are brilliant. The thing is that they don’t even say sorry. (2012) Participant D had three separate visits of five days each, and a separate visit to London Whitechapel Hospital. Participant D went into the Homerton A&E with severe pain, and was diagnosed with an infected gallbladder. She was released five days after her operation with extremely high blood pressure which was what brought her to the London Hospital. At that A&E she was told her blood pressure was 220/100, which she specified is the beginnings of a heart attack (or stroke?). At that A&E she was told “[she] should never have been released, that [she] was in no condition to be out of the hospital.” She was transferred to Homerton where she was ‘…loaded up on painkillers, given no real treatment. They just chucked me full of morphine until I stopped complaining. They really just seemed to want to keep my quiet, so they handed me and Participant C (they were in the same room at Homerton) and gave us any number of painkillers.’ Participant C begins confirming this saying that they freely gave out morphine but never took the time to actually listen to what was ailing her. She emphasized that it was very unnerving how 19 much morphine they gave her, that she eventually began refusing it along with Participant D. ‘Once I started refusing my morphine things just got worse. Nurses began telling outright lies about how I was refusing food but taking the medication. Which makes no sense, surely that’s a danger to my health. The doctors wouldn’t see me because I was a “problem patient”, and I had to agree to both the food and the medicine. Not like I could even eat the food. It was the worst thing I’d ever seen. I had a pudding once, well they called it pudding, the thing was as hard as a brick. I have pictures of it too! I brought those issues up to the head matron but it went no where. And PALS is a waste of time. They’re not on your side, not at all. They’re looking out for the hospital. There was no bedside manner either. The nurses would come in and continue on with their conversation with no regard to who they were talking about. The things I heard them say about patients. You’d think it was an issue of confidentiality! They would complain and gossip about other patients right in front of me. It was just plain rude, and unprofessional too!’ Both Participant C and Participant D were in the Thomas Audley Ward of Homerton. The Chief Nurse of Homerton took down this information after the session ended. I had a stroke in May now my mobility is coming back, but the issue is I am gaining weight, and I have other health issues - like my heart and angina. The medical care I had was very good - in London Chest Hospital, Barts and Homerton. They all did their best; the appointments and the treatment were good. I did not have after care support because I live with my family...... While I was in hospital I saw that the staff is overstretched particularly in Homerton. You have to wait a long time to be attended to. There was few staff on the ward. I think some training needs to be updated - including dispensing. When the patient is given medication and told "take as necessary" it does not mean you have to take it. I was prescribed [antipolene?] to help me sleep, the prescription was "take when necessary" but staff insisted that I take it. I saw other people not being attended to - there were a few people in my ward that were not attended to when they needed to go to the toilet, or needed something like a drink, or propping up. I saw it happen in Homerton and Barts, but more in Homerton. I was in Homerton for 21 days and Barts for 11 days. Overall I would give the treatment 9 out of 10 and the care 6 out of 10. (2013) Treatment was very good for my hysterectomy; they gave me too many drugs though. (2013) If you're really sick the GP refers you to the hospital but it takes ages. I went to A and E and they just gave me a painkiller. Then I went to France and had an operation because that's what I needed. I went back to the hospital and told them I'd had the operation and they didn't apologise or anything or offer me any care. I was losing blood and had to make it clot with coke and tomato puree. They should treat people in A and E properly, not just sends them home with painkillers. 1/10 (2012) Staffing levels District nurses should improved both in number and quality Lack of staff My last bad experience was when I fell and broke my coxic, I went to A&E and the nurse was really rude to me because I had waited all day to come to A&E. She didn't listen to what I was trying to say. I think this happened because she is overworked. (2013) 20 I went to the Homerton hospital. The doctors are ok and it was alright getting an appointment. The day nurses are ok, but the night nurses are very unpredictable. At night you ask for medication and they say they'll come round in two minutes but then its two hours later and you have to ask again. The children's bit of the hospital is filthy. In my ward there was an 87 year old Indian woman who was lovely and she couldn't get up- she had night nappies. She said she needed to be changed and they said they didn't have any nappies left. This was on the Lamb ward. They left her there until the morning and by that time she was soiled. About four of them were left the whole night. They need to clean the hospital more and have better service from night nurses. (2012) I had a stroke in May now my mobility is coming back, but the issue is I am gaining weight, and I have other health issues - like my heart and angina. The medical care I had was very good - in London Chest Hospital, Barts and Homerton. They all did their best; the appointments and the treatment were good. I did not have after care support because I live with my family...... While I was in hospital I saw that the staff is overstretched particularly in Homerton. You have to wait a long time to be attended to. There was few staff on the ward. I think some training needs to be updated - including dispensing. When the patient is given medication and told "take as necessary" it does not mean you have to take it. I was prescribed [antipolene?] to help me sleep, the prescription was "take when necessary" but staff insisted that I take it. I saw other people not being attended to - there were a few people in my ward that were not attended to when they needed to go to the toilet, or needed something like a drink, or propping up. I saw it happen in Homerton and Barts, but more in Homerton. I was in Homerton for 21 days and Barts for 11 days. Overall I would give the treatment 9 out of 10 and the care 6 out of 10. (2013) Case 3: Using HUHFT for 4 years had a bad accident in 2010 – four knee surgeries and awaiting fifth. Thomas Audley Ward – heating on full in May, everybody was thirsty. Lack of staff, 4 or 5 staff for 30 patients. The sister was good. Best thing was getting out. Injections every day at discharge by District Nurses. 12 days before the hospital physio follow up came for him. Waited a very long time for pain management. Rarely sees his consultant. Hospital discharge not properly arranged. Booked an appt in the afternoon and waited ages. Wants to see the consultant who did the surgery. Wants the District Nurse to be present when they’re supposed to be. No one seems to know what they’re doing. Have to use PALs. More staff, more compassion. Case 2: Father (72 years old) stayed at HUHFT twice – heart murmur via A&E/ Cardiology. Has previously had two strokes (May). Acute care unit – large ant crawling on the floor, worried about hygiene. Dad’s recall/disorientated. Equipment worked well. Mum wanted to be contacted to come if he was discharged. Only rang the house phone, not her mobile. The second time she wasn’t contacted at all. Got home to find him there. Attended A&E with a neighbour and spotted her husband wandering. How did he get out? How was he able to leave? Took two days to see a senior member of staff to get update on what was happening then eventually spoke to doctor. Needed bottle but nurse took ages. Mum had to change sheets & clean husband herself. Not enough staff and communication not good. Apathy from nursing staff when family raised concerns. Attitude problem as well as not enough staff. People not being heard or having to make a fuss to be heard. Not expecting to have to challenge a doctor or a member of staff. You expect to be looked after. 21 Comments on non-medical staff Most of the hospital staff wasn’t kind and helpful, even rude. A female member of staff threw something at the man in the store (at Homerton), I hope they aren’t working with patients. Best hospital in area- lesser of evils. Most staff was good but non-nursing staff have poor patient manners. Better access, it’s hard to get to Homerton. 7/10 I found the right department easily. I was seen fairly promptly even though there was no appointment system (I went early). Staff fitted 24hr blood-pressure monitor and clearly explained function. When I returned the readings were clearly explained to me. Main reception somewhat ‘bored attitude’ direction giving. Customer Service training with follow up on the job monitoring of reception staff. Training is not enough, they need to apply it and think how it is experienced ‘in the customer’s shoes’ and managers need to know what is going on. I am a qualified customer service assessor and also had a staff of 400 including some working in London prisons – not the best environment for being positive about the public! So I am speaking from a base of sound experience including over the years: Investors in People, CharterMark and Customer First. 3/10. The Clinical aspect was fine. 9/10 1. Physio department offered a new treatment (shock wave) which was successful. Staff very friendly and helpful. 2. Visit to A & E lasted 1.5 hours which was relatively quick. Triage nurse friendly and helpful. 3. Staff carrying MRI scan explain process carefully. A & E receptions was somewhat dismissive as my injury seemed minor, but I needed a tetanus jab that day. 9/10 (A & E, Physio, MRI scan) They don’t listen when you have complaints. Last time I asked for a complaint form, they said they would photocopy one for me, but I didn’t get it. They get annoyed with you if you keep asking questions. We might need to check how many complaints they have had recently. I think at one point the PALS person in Hackney was off for months and I’m not sure if they’ve sorted it out. This is an important issue (2012) A & E ambulance for pain. I phoned the ambulance because I had a haemorrhage that I could not stop. But I saw an ambulance near by and asked to take me to hospital but they said they had no instruction to take any patients. I told them that whatever your job is you are going back. Please take me because as you can see the blood is not stopping, eventually they did Accessibility: Patients need to have accessible communication to those in management positions. Older people care Last stages of dementia ward are not good. Parkinson ward is not good. The quality of care and attention from staff towards elderly patients and their families on the wards. More staff! 22 Recommendation: Care for the elders while in hospital. Increase the number of qualified nurses on the wards on top the care of elderly people wards. Homerton nursing staff in the ward I was in, didn’t seem to understand how to care for someone with Alzheimer’s (2013) “All elderly people seem to be treated as if they have dementia” (men’s medical ward) they speak to you as if you were a child. He said he had nothing positive to say about the care on the ward (he was in there a couple of years ago). He said it felt that older people were low down in the priority as they were going to die soon anyway. There was no effort to help and no coordination. It was often other patients who helped each other out. But in general our experience is that when one of the residents needs a procedure the staff [at the Homerton] are unsure how to interact with someone with Dementia. Then I’ll get a call to say that he/she is non compliant to letting themselves be cleaned or fed. We’ll go there and the resident will be unkempt and in a dreadful state. We get the backlash of what happens in the hospital. Comments from Care Home Managers about Dementia care and their relationship with local hospitals (January 2012) We have noticed that the Elderly Care Unit at the Homerton has got better. My best experience has been with UCLH, we’ve had a few residents from there, and they have been really good. I think relatives have grown to accept that they [residents] won’t be washed or fed when they go to hospital. They may complain but staff will say the resident is non compliant. So staff go from here, who know the resident, and will do personal care. They’ll wash the resident and make sure they are fed. And we are happy to do that as we want to make sure that they are OK. Families have great concerns when we send someone to A&E when they have a fall and we suspect a fracture and they sit there for 6 – 8 hours with dementia, cold, confused, thirsty, shoved in a corner and ignored because they have not been to triage. We won’t accept residents after 4pm or at the weekend, because they so often arrive with half their medication, and we have no access to go and resolve it. They arrive under-dressed, with a Tesco bag, having been waiting hours for transport. Their level of distress and confusion is off the scale. They are not always given the full SP about where they are going when they leave hospital, so they are disorientated. Sometimes the only way to get them into the ambulance is to tell them that they are going home. Then they want to know where their belongings are. Out of ten that arrive, only one will have arrived here having been to their flat to sort things out. The other nine will probably never see their belongings again. Their flat will be terminated, and all their belongings disposed of. The first four weeks here are seen as interim. Social Services at the Homerton then hands over to the Community Social Work team, and that’s when the termination happens, and where everything gets lost. We get the fall out, and we have the residents saying please help. Then we battle and battle to work out where their belongings are, who has the keys. They won’t let 23 you go there without a social worker, then you suddenly hear the flat has been terminated, and they say they have got rid of all the stuff. We are actually more like social workers. One of our increasing distresses is that we find we send residents to A&E, and the invariably junior will make generalisations like “it’s lucky you came now, an hour later and they would have been dead” because they are dehydrated. They give them a quick fix IV. What do they think is going to happen in the longer term? They come back here and the same happens again. But the relatives are concerned and distressed. The family may have accepted that their relative is dying, but one incident like this at the hospital and this is all undone. But one phone call from the hospital, and we could fill them in on the background. As the doctors get a bit better, they move on and the next batch come in, and we start all over again. Our experience is that it all comes down to management – they are coming here for the rest of their life so we need their medical file. We used to be given a hard time about this, but we don’t accept that now. The Jewish Orthodox faith says life should be preserved by all means. The Liverpool Care Plan – seen reluctance because residents and their families think that End of Life drugs counter to their religious grounds. Make sleepy or unaware. Here the number of hospitalizations is quite high – everyone asks for resuscitation regardless of their condition. So if their condition can’t be treated here they go to hospital regardless of the prognosis, or some go to St Joseph’s. The gist of our experience is that when we send someone to the Homerton we send a carer from here with them, with food, and to help them with continence management etc – at our expense. We do this because of complaints from residents about the lack of care and attention of detail about their needs when they have been in the Homerton And because of concerns about resuscitation and consultants not regarding patients wishes. With the inpatients [at the Homerton] half the residents have expressed the request that if they need to go to the hospital it should not be the Homerton The hospital of choice is the Whittington The outpatients [at the Homerton] is OK, though some residents have said they don’t want to go there either One manager described a situation where they had taken and elderly resident to the Homerton “upright and fine” and come back to find he had not eaten for several days even though he was able, and was now not well enough to leave hospital. Long Stories on Quality of Care Story 1: My dad, 84 and living alone, was admitted to the Homerton on Aug 29 2013 suffering from acute stomach pains. They performed an exploratory operation the next day (general anaesthetic) where they found he had peritonitis, possibly from an erupted cyst on his intestine. He was put on intravenous antibiotics, and spent the next 8 days in the Thomas Audley ward until his discharge on Sept 12 . He had diarrhoea until the last two days, and was incontinent. He is diabetic, has no feeling in his feet and has had five falls in the last year, so at no point during his time at the hospital was he able to get himself to the loo. He is also deaf and needs hearing aids in both ears. The first thing to say is that all the doctors who saw him were very good, from junior level to the consultant surgeon who operated on him. Also, the ward was clearly understaffed and overstretched, especially at the weekend, and my dad is indeed a very difficult patient. Because he is deaf, he often doesn’t hear what people have said, or misunderstands them, and then gets 24 confused and stressed. He also has sudden, wild mood swings – up one moment, down the next. So he is quite a handful at the best of times. That said: 1. Deafness: We tried repeatedly without success to get the nurses to register that he was deaf, and that they needed to talk to him face-on, so he could lip-read – which he does well. This never happened and he repeatedly got upset at not understanding what they were saying to him. 2. Basic information: They told him once, immediately after his operation, where the buzzer was to call a nurse. He was extremely confused at the time, because he was coming round from the general anaesthetic, and didn’t even know where he was. So he then told us firmly that there was no buzzer. It was only after three days that one of my sisters established where it was, hidden away behind the bed. Yes, we should have acted sooner, but shouldn’t they have an easy-to-read list of useful info by the patient’s bed e.g. here’s the buzzer, there’s the loo, the ward is on the 1st floor, etc? 3. Diarrhoea: He needed a commode, which was brought to him. But: a) On one occasion, the male nurse brought the commode and some loo paper, but didn’t bring a bowl of water and soap for him to wash his hands. I had to go and fetch the water from the nurse, who told me that he’d assumed my dad would go to the ward loo to wash his hands (sic!). b) The next night, my dad was left stranded for 90 minutes on the commode without any loo paper. He didn’t know there was a buzzer to call the nurse, and when he tried to catch the attention of other nurses walking by, they simply ignored him. He has a tendency to dramatize stories, but I’m sure this one is true – he was actually very stoic about the whole experience. c) He was in an open ward for six days with chronic diarrhoea, needing incontinence pads, before they moved him to his own off-ward room as a preventive measure to stop infection spreading. This was despite us telling them from the first day that he had diarrhoea. Apart from the male nurse I mentioned, I don’t think the nurses were callous and some of them were genuinely kind and caring with my dad. But there was a collective lack of common sense and good management which we all found fairly alarming. (2013) Story 2: Yesterday I was informed by a doctor in the Urology department that the Vasectomy operation I had in Oct 2011 was unsuccessful because the surgeon had cut the wrong tube i.e. had cut a ligament rather than the vas deferens on my right side. As you can imagine I was horrified to find out about this blunder and that I may well have been having unprotected sex over the last few years. I was told by the doctor yesterday that in the two years he had served at the Homerton only 3 operations had not proved successful. Whilst this was reassuring I was certainly not reassured by the fact that a simple vasectomy operation could be bungled in the way he had described. He was very apologetic and offered me a repeat procedure. However I wanted to take time to consider whether the Homerton was the right place for me to have surgery again. When I remembered the actual operation, it reminded me that I felt uneasy at the time that something was not right. When the operation was underway I hadn’t been given enough anesthetic and was in extreme pain during the surgical procedure. (2013) Story 3: In February this year, my uncle sadly passed away under the care of Homerton Hospital. I feel really strongly that the level of care he received, or did not receive was partly to blame for him giving up. I visited him on several occasion, and three days before he passed, my aunty informed me that the hospital had lost his test results and that they took further samples again. I wanted to enquire about this with the nurses on duty and went to the nurses station only to discover my uncle's test samples on the reception desk 25 with a bit of tissue over them. Understandably I got angry as to why they were there in plain sight and not delivered to the people who analyse them. The nurses were unapologetic and I felt helpless at this situation where no one would listen to my concerns about leaving tests lying around like that (there was no one at the nurses station when I approached, so the samples were unsupervised). My aunt doesn’t have strong english skills, so she was understandably at a disadvantage, and felt equally if not more helpless about helping her husband of 30 years. While I am still angry and frustrated at not knowing the processes of complaining or dealing with the passing of a close family member, in a weird sense I can see how this oversight has happened. It was clear that this ward was under-staffed and I feel for the nurses who went in to this profession to help not being able to for the failings of management and the people at the top making policies and planning budgets, where the moral and human values don’t count - it's efficiency savings and reforms and IT system reboots, that continually plaugue the institution that is the NHS. This was an intensive care ward, and my uncle did not receive intensive care because there was not the capacity for the ward to so. I won't ever be able to speak to my uncle again and that is painful. With this feedback, I hope that no other family has to go through an ordeal like this. I hope that this feedback demonstrates the under funding of what are vital services that are matters of life and death. I hope that this feedback will be a positive step towards improving care, capacity and showing successive governments that health services are not politicians play things when lives are at stake. (2013) Story 4 :I went to the Homerton for an operation to straighten my little finger. I had my right hand done a couple of years ago. My left hand I had the operation done earlier this year [2013] but the lack of after care was so appalling that the operation was ineffective. For example the waiting time to be seen for dressings after the operation was up to 3 weeks - it was very unpredictable. I told the nurse who was dealing with the dressings that no-one was calling me back to be seen again - it was the consultant and the nurse doing the splints - they should have rebooked dressing change appointments, but they didn't. The physiotherapy you couldn't book until a month ahead, and I needed it immediately. Then the physio went on holiday without referring me to anyone else. I could be sitting there waiting for up to 3 hours, and they refused to see me more urgently because of my epilepsy. None of the clinicians seemed to be talking to each other, and none would refer [patients] to each other. The result was that I had to have the operation done again. It seemed to be easier to let the operation happen again, than put in the after care. I wrote a letter of complaint, but due to the stress while I was at the hospital, because I needed things that didn't happen, I have had a lot of epileptic seizures. One time I was forcibly injected with Diazepam while I was unconscious. I carry a card saying not to touch me. The result of having the Diazepam was that I had another seizure as soon as I came round. I wrote all this in the letter to the hospital. The response from the chief executive was to blame me because I had signed myself out of hospital every time. They didn't want to look at the issues about injecting me, and the poor after care. Theme 3: Communication Accountability Accountability: There needs to be more accountability for staff as well as transparency of accountability. Otherwise patients don’t see if or how issues are resolved. Someone needs to take responsibility for mishaps, not just a blame game. 26 Participant A recently went to Homerton for a set of broken ankles and torn ligaments in her knees. She spent 12 days in Homerton for her surgeries. She was admitted into Homerton Friday night but was not in surgery until Monday. By Tuesday night she was in a hypertonic shock from a loss of blood and fluids and her kidneys were failing. In the time between her surgery and Tuesday night she had repeatedly told nurses that she did not feel well but her complaints were ignored. By the time her health collapsed and she was in hypertonic shock the staff began taking action without talking her through 1) what was wrong and 2) what they were doing to remedy it. Furthermore, no one explained why such a severe loss of fluid went unnoticed until the point where her life was in danger. She felt this was an egregious misconduct and blatant example of Homerton’s poor patient care. She said there was such poor communication between staff and such little concern for patients that she is sure her failure in health was on Homerton’s hands. After her injection she was given a blood transfusion, but still, no one would tell her what was wrong and what was being done to her to improve her health. There were no doctors readily available to address her concerns and her requests for understanding went ignored by nurses. She also continuously requested that her catheter be removed however the nurses were unable to make this decision as it has to be ordered by a doctor. Eventually after consistent pleading a nurse took it upon herself to remove the catheter herself, despite not having a doctor’s approval. Participant A emphasized how much this meant to her because she understood that the nurse was risking their job in doing that and that it was such a relief to finally find someone who took her pain seriously. However, Participant A also noted that the fact that it was a failure in communication that made this risk necessary. “The doctors weren’t around to give approval, they never came round to check on me, and they never cared to see. So the nurses can’t do anything, I don’t even know if most of them were actually telling the doctors I wanted the catheter out.” ‘A nurse shouldn’t have to risk their job to help their patients.’ She was in Homerton for a total of three weeks, and the whole time she felt there was poor communication between staff but she felt this more so during her post-op appointments. ‘I came in after my surgery to get the plaster removed and check-ups and what not and I find out they lost my file. It was gone. And no one could tell me what happened to it. So I go on for weeks with appointment after appointment and each time it’s a different diagnosis because each doctor says something different. I go in expecting to get the plaster off and they say no and I go again and it’s someone else and he says come back to get it off but then I’m told no again by a different doctor. So the whole time I have to be dependent on the memory of nurses who have seen me in between doctors. My whole experience it’s all just been very unsympathetic, there’s been no apology for any of it.’ Clear Information between patients and medical staff Participant G described how a member of the Homerton staff encouraged and even pushed her to be a whistleblower and raise issues that were problematic. The staff member told her “You have to cover your own back here.” Participant G said they have ‘no faith or trust in Homerton, its simply just not dependable enough’ mainly because of severe communication issues where staff did not inform her of appointment changes for her medical procedures (including a hysterectomy). Acessible information: Often there is no physical person available at the hospital to provide the needed information; PALS are not always available. There is also a lack of easily 27 identifiable appointed staff to deal with specif issues the public may have (e.g. domestic violence). Language code needs to be simple. Need for follow up on issues to be stronger and clearer and better reported to wider public. Need to put patient above costs. Time limits – Time with patients should be key to all care aspects, some need short some longer. Treat the individual properly and you will get better feedback. Another time I was seen by a nurse who took my height and weight on a machine. She said hold your breath, hold your nose - and it wasn't very pleasant. [Did they explain why they were doing this?] No. [Why do you think they were doing this?] I don't know, it might be to do with my epilepsy. (Patient with a Learning Disability 2013) Furthermore, hospital records do not indicate that an individual has a learning disability therefore they are not given priority or the right support during health visits/appointments. Not enough preparation for the service-user before attending health appointments or appointment times were not long enough - causing distress, agitation, unsuccessful outcomes. (2012) Really good experience of not being well at Homerton, a suggestion would be that the surgical centre needs to be clearer on the process; they say you can’t take a friend but they make allowances for some people, they need to be absolutely clear on the system. The nurses are fantastic. (2013) Lack of communication about what was being done at the walk-in. X-ray for example scans radiology, felt unsafe as not knowing what to do – stressed. My friend went in the acute Gynea ward at Homerton hospital. She had an ovarian cyst and the operation to remove it failed. After this they gave her an injection, and she later found out that this injection could make her infertile, she was not informed at the time I don’t think we should be carrying DVDs/CDs with X-rays – they should be transferred using the internet. It’s not just X-rays, lots of tests are repeated over and over again, each time you go to a different hospital – like weighing and taking blood tests. If they stored all this data on a national computer then it could be shared. X-rays and blood tests are expensive. Being able to share results between hospitals would also be an efficiency saving. Sometimes different departments in the same hospital repeat X-rays and blood tests, they don’t seem to be able to share results [parent of disabled child] GP/Doctor need better communication. A good thing for us would have been a way of exchanging X-ray results. If you have an X-ray done in one hospital, another hospital wouldn’t have a copy. Some gave us copies on a CD or they would pass on results – but the next hospital wouldn’t be able to read the data. If there could be a national method of reading data –It damages child to keep doing X-rays over and over again. [parent of disabled child] Adminstration- appointment letters, not correct info, poor communication Out patient waits too long (2 hours) appointment system "up the creek" invites times 3 for the same day. Reminder calls and texts [would help] 28 Excerpt from a longer story: I had to go to the assessment until several times for antenatal care, waiting times were long and there were times that a doctor was not on site. This is a shame after all the money invested in the unit. I was in early labour for 4 days so was in and out of hospital. The only thing I would complain about is that sometimes you would hear/see midwives chatting away whilst patients are waiting to be seen, which is rather irritating. I was left standing/managing my contractions on my own for over 45 minutes which was disappointing while waiting to go to the birthing centre. There was a lack of communication between the team that was looking after my epidural so when I have my emergency c-section there were issues. Post-natal ward was good but lacked staff. ‘I think the new mark downs are shocking. The new shift in management seems to have just a really poor delegation of work roles. Everyone says it’s not their job to do that, well then whose is it? The A&E is getting worse too, the time you have to wait to be seen and the time they actually take to diagnose you are ridiculous. It’s completely inadequate how long they take when looking you over, you’d expect after waiting for hours to actually be given a real amount of time with a doctor, but no. Nothing.’ Coordination There is a lack of communication between the nursing staff who is discharging patients and the transport services who arrange the vehicle appointments. Patients often have to sit through hours of waiting time between their releases and when the vehicle arrives. This becomes especially problematic when these hours overlap during meal times, leaving patients to go hungry. Communication: There needs to be a better system of communication between staff members. Homerton needs to make more efforts to keep patients in the loop of diagnoses, appointments, treatments, et cetera. There is also a lack of communication for necessary accommodations in outpatient homes. Patients are discharged without hospital staff thoroughly going over the necessary lifestyle changes (e.g. staff installation). The databases do not appear to be connected up. I was referred from urology to the physiotherapy department and the Computer data in one department was not accessible in physiotherapy department. An intensive management effort to improve communication between teams (including shift changeovers) to ensure that patients experience co-ordinate care: -Proper reading and action on patient notes -Synchronisation of dispensing transport to provide a smooth personalised service. I would change the bottleneck of communication that seems to be failing. There seems to be a real breakdown of communication between departments and this affects the QUALITY OF CARE that patients receive. There also seems to be a lack of communication between the wards (I had to repeat information too many times within a shift). 29 Alteration about the following would be beneficial to the patients/carers/facilities and the public – will too have better communication better hospital staff and community staff and services. Hospital Departments, not talking to each other Pharmacy dispensers, transport and social work teams need to be fully integrated for safe hospital discharge Got a diagnosis, tidied up well, it’s clearer, it’s more tidy. More people you can ask to help. Drug addicts no longer walk on the wards. Moved beds at 12:45 pm. didn’t get antipsychotic, asthma, diabetic medicine for 2.5 days. Woke up every 2 hours. If they communicate between departments and listen to patients a bit more. Happy patients makes happy ward. Someone should come under cover and see what it is like. 4/10 The x-ray was taken more quickly and accurately than last week, as I had about 7 last week for one hand, today’s was 4. The waiting time at minors as I had appointment at 9:30, I arrived at 9:15, wasn’t seen until around 10 am. Would have been more happier if given some leaflets or written descriptions on how to exercise hand after injury rather than quick demo as bound to forget. Notice boards about waiting periods. Apologize for being late. As last I emphasized on getting out as easily as possible despite being there for a long time as i had therapy which I can’t miss, I ended up missing half of it because they didn’t bother to tell me they would be long again. 5/10 From Maternity Interview: How could it be better? My GPs are really working hard, but the hospital system – especially about information transfer and management, and human resources – I think it is a shambles. They need to invest in this instead of beautiful surroundings. Like nurses scrambling because they don’t know what they are doing. I think they have invested in making it beautiful rather than efficient. Medical Records I was referred to physiotherapy at St Leonards. I saw a Grade 6 physiotherapist who was working on his own with no supervision. He said he was going to refer me on and he just didn’t do it. When I did see someone senior then I did get proper treatment – I had 8 appointments. There was really poor supervision, not referring on and just dumping the person. They said they were going to consult the senior consultant but there was no way of checking if they had. When I asked them if there had been a mistake in my referral they just didn’t say anything – they should’ve admitted that there had been a mistake. I have a sense that they destroy evidence. They say that emails are deleted from the server. It wasn’t the admin they were fine, the junior person just didn’t make the referral. Summary notes provided to patients-what has been done, why and the outcome From a Maternity Interview: If there was another hospital that I could go to I think I would prefer that. Records are important, doctors can only do so much if the records are not updated. So they start asking a sick person what they should have on their record from the GP practice. From a Maternity Interview (not the same as above): What was not so good? 30 The problem is the Homerton not running in parallel with them [regarding maternity services]. For example: the midwives come from the Homerton – the doctors at the GP will have made the appointment, booked it and sent the info in advance. So when you get to see the midwives, the records have not been updated. The GP is then updating them verbally, saying this was sent to you – maybe a week ago. And sometimes appointments get cancelled and you have to rebook because Homerton haven’t picked up the booking. Translation/Interpretation Turkish translation is good - when you get the Kurdish translator I don’t feel they help so much. I had fertility treatment at the Homerton - I had a problem with the translation and the medication. I believe it is because of the Kurdish translation. But the fertility treatment was successful. My husband had a stone in his liver [translation?]. He was referred by his GP to the Homerton 4 times. When we got here the consultant said "why are you here?" We thought it would be in the notes. Each time the consultant wrote down the treatment but nothing happened. The last time we went to the GP we explained the problem, and the GP sent us to Whitechapel hospital and everything was OK. My son was born with his tongue rolled back. No-one spotted this when he was born. When the GP sent us to the hospital they said they could not operate until he was much older, maybe 5 years old. We didn’t want to wait that long because he could not speak. So we went to Turkey and had the operation there. We came back and went to Whitechapel hospital and he had one more operation. Now he is fine, his speaking is fine, just a problem with "L"s and "R"s. (2013) Translation Services: There needs to be a stronger emphasis on translators at Homerton. These services need to be advertised and readily available at all hours. Language barriers: There are no services in the patients own languages about their health issues. When the patient requires additional information this is not taken seriously. The linguistic skills of the nurses are not sufficient, especially those from EU countries. Although the interpreters are helpful there is not enough interpreters. This causes further problems which are hard and expensive to solve. Interpreting mistakes led to wrong diagnosis and there were surgical complexities. There are always some delays. Turkish or Kurdish interpretation is needed. Turkish/Kurdish speaking receptionist at the main reception area. More bilingual advocacy service. Homerton should provide language specific (Turkish) domestic violence services, such as drop-in. Its difficult to find interpreter at hospital When I went to hospital they couldn’t find interpreter for me, then they suggested I should bring an interpreter myself. I am unemployed, I wouldn’t be able to afford a private interpreter, I suggested that they take my blood and send it the results to my personal GP but they never understood me. They couldn’t understand I have epilepsy. They should’ve diagnosed my epilepsy and have treated me properly. They found out about it when I 31 fainted at the GP’s health centre and had a seizure. They took me to University College London Hospital (urgent services) now they treat me there. It will be good if there were bilingual people at reception. Not enough interpreters. There aren’t enough interpreters. After I was discharged they didn’t offer me any support or resources on how to take care of myself. They finally tried to call to check in but no one could actually talk to me because no one spoke Turkish. They need someone who speaks languages other than English. Homerton Hospital should provide language specific domestic violence services such as drop-in More bilingual health professionals would be helpful Provide culturally sensitive services Bilingual advocacy provision needs to be increased Employ bilingual health professional Comments from Halkevi Support Worker: Most of work is reading the letters and the appointments details. Our clients ask the hospital to communicate by post, because they can't understand on the phone. The most common issue people raise is waiting times from when they are referred by a GP until they have an appointment. If it is a busy department like cardiology, you assume will take that long, but when it is dermatology, or something like that, I will ring up to try to find out why. And if their condition has got worse I will ring up to try to bring the appointment forward. But in general I say to the clients that if this is the date you have been given, it is because there is no earlier date. It would make a big difference if Homerton could send the letters out in Turkish. I used to work for a Housing Association where my job was to do translate letters going to their clients. Over all I have never heard of someone having a really bad experience at the Homerton - the things that people raise are more general - things that they think could be changed. Otherwise they could go to another hospital - they have a choice, when they go to the GP they could ask to be referred somewhere else. Excerpt from a longer story: Because of her language barrier she did not understand that it was a mental health office and that they were treating her insomnia as an issue of mental health as opposed to the thyroid problem she had previously experienced. She was given a prescription for what the group surmised was antidepressants. The prescription was not explained to her as she did not know how it would affect her or what exactly it was treating. She described having hallucinations on the medication and was bedridden to the point that she could not take care of her son. After two days a social worker visits her home and begins helping her by finding resources to translate what had happened to her. Using A&E 32 Youth research- attitudes to using A & E – Healthwatch Hackney Youth Survey August 2013 11% of the 100 young people interviewed said if they were sick their first point of contact would be the hospital, but they said for 18% of the young people they knew, the hospital would be the first point of contact. When asked why young people would go to A & E rather than GP this is what they said (freeform responses): Lack of information Because the GP don’t really help The GP takes too long to get through to A lot quicker Better service If its major Its quicker Easy point of access Fastest way to find out what’s wrong Because they want to get help straight away They deal with you straight away Easy option They believing it will be dealt with quicker Because they assume the A&E will always help them even when they’re sickness isn’t serious enough. Not realizing that the A&E is only for serious emergency Over reaction Over reaction Over reaction More major Over reaction Depends on the situation Much more serious Because its quicker and easier Because its quicker and easier Yes quickest way to get treatment Feels more confident in doctors, they know what they are doing Emergency Doesn’t know what else to do GP takes long GP takes too long Because it could be serious Because GP are useless Over- reacting Because it quicker and better Too much alcohol They find it hard to go to parents or family members. Some don’t feel comfortable If they believe it is an emergency or their doctor’s is closed They see difference doctors to get advice Easy free They might not want to waste time 33 They many not have family, close friends that they can contact, or talk to Cause they’re very sick But if they are its because they have no option Don’t have to wait too long They don’t have time to waste They can be unwell over weekend their surgery is closed or they are not bother to call the GP No appointments required this quick minimizes potential long term risk Easy choice Its quicker Its quicker and faster They are always available 24 hours Because they feel they would get help more quickly Not being taken serous Over-react, not informed on illness. At night the service is slow, everyone seems tired Don’t know, slow service? Always giving paracetamol, not taking anything serious Because the doctors may not be open Because they are paranoid They can be seen directly and given a proper diagnose rather than over the phone and they can tell them their feeling None A&E is quicker than GP as you don’t need to book an appointment Something really dramatic could have happened Maybe they don’t have a GP They have little knowledge as to where to go and they think A&E is quick They think is a better option Doctors not open at certain times- close at 6 pm have to wait to see doctor- some many send you to A&E Young people find it quicker to get access to treatment rather than going to the GP and have to wait Big illness Depends on the situation Take it more serous Over react Because its quicker and easier Theme 4: Complaint System PALS Complaints process at HUHFT: Case 1- Participant did not feel that their complaint was taken seriously re physio care concerning a junior member of staff who didn’t follow through on care required by specialist. Concerned that there wasn’t a proper explanation for failure to refer the patient on. What supervision & advice was the junior physio getting –there were no records. Ignored requests from the patient to make the referral. Case 2- Male participant on medical ward: felt dismissed and ignored by staff. No coordination – felt bad for asking for help. Wouldn’t want to go back there again. PALS not responding to complaints 34 Complaint process: P.A.L.S. is not user friendly and many people do NOT know what it stands for or how to use it. Complaints are often not dealt with or addressed in a timely fashion; there is a lack of responsability and accountability. Homerton pal customer service could be improved. Not had answers to complain. Better feedback would be great. Proper response to complaints. Unavailability of PALS officer so patchy Getting no response to complain on NHS or PALS service of hospital Need to improve complaints procedures. It is as thought the person dealing with the complaint makes up a story and try to make the facts fit When my friend went into RNRU they lost all his stuff [belongings]. I went to PALS and they said they couldn't act unless they received a written complaint, even though several people had been in to tell them about this. I did a written complaint, and they sent back a letter saying they were looking into it, and asking me to make a list of what was missing. I said to them 'Why don’t you ask him?' and they said that they didn’t know if he could speak - but they hadn’t even tried to speak to him. (2012) They don’t listen when you have complaints. Last time I asked for a complaint form, they said they would photocopy one for me, but I didn’t get it. They get annoyed with you if you keep asking questions. We might need to check how many complaints they have had recently. I think at one point the PALS person in Hackney was off for months and I’m not sure if they’ve sorted it out. This is an important issue (2012) The consultant at the ENT hospital was very good - its just that it was very difficult to make an appointment. They don't give you the proper contact number, but put you from one section to another. Several times I rang and rang all day but never got through. I was very ill in August- my GP referred me to ENT, they sent 2 letters, but nothing happened. The GP admin called and couldn’t get through on the phone. While we were waiting for an appointment my symptoms got much worse. I called an ambulance and was taken to Homerton ENT because I was so ill. They diagnosed me with Minerea disease, and I was given medication. The Homerton doctor also tried to get through to the ENT hospital and couldn't get through. In the end I went to UCH PALS and I told them the problem. They said they could make me an appointment, but that if I wanted to make a complaint I would have to write it down (which I don’t have the time or energy to do). I got an appointment 2 days later. The ENT hospital rang to confirm the appointment - they gave no-one's name and no contact phone number. I have hearing loss, and I believe that my hearing has been permanently damaged because of the delay. Also there was no need for me to have come to Homerton ENT department for this treatment, it was just a waste of NHS resources, and it also made me unnecessarily very anxious about my health @@@@ not homerton? From a Maternity interview: I didn’t see any complaints forms – not even the place for good comments. I didn’t want to complain, I told the doctors what I thought – I said I don’t want you to touch my child anymore. 35 At A & E no good experience. It was night time visit. Nurses preoccupied with chatting to police officers at desk. Very dismissive attitude to all patients, after 2 hours I asked when I would be seen, she spoke to be in such a way I would either have credit or shouted (I cried feeling humiliated). I asked for a complaint form. She gave me a blank piece of paper. I left at 2:30 am went to London hospital next day. At out of hour’s appointment doctor saw me within 20 minutes of appointment. She would not help me and referred me back to my doctor who was on holiday. A more sympathetic manner, treat each person as an individual, keep people away of approx. how long they would have to wait and update it, a more professional approach would promote more. 1/10 (A & E, out of hours) Misdiagnosis ‘The next day she is in a coma and we begin asking if we can get the baby out, if the baby is in danger to save it. The doctor’s tell us no that they want to focus on her, and then the baby is in danger. The doctors didn’t listen and then they see the baby was sitting in her blood. They did an emergency c-section and see that the baby had died, it had choked on the blood. For five months she was still in a coma. Just so much wrong, so much neglect.’ Maternity Department: mother to be told she will have a healthy baby, but the baby was born with a lump in his head and other defects. Another wrong diagnosis – first they said cancer and took out the uterus, then they said they made a mistake, and sorry… A woman took her son to the A&E for an eardrum infection. He was seen by 3 different doctors throughout the morning and then was NOT given the necessary amount of drugs to treat the infection. As the GP wouldn’t prescribe such drug, the woman had to take her son back to HUH the next morning to get more drugs. The same woman had previous first hand negative experiences with the HUH: she received a wrong diagnosis that made her condition worsen and was rightly diagnosed later that day at a different hospital. Not enough attention/diagnosis problem/not expert enough, inexperienced staff. A & E- How can you speak to someone senior if medication is incorrect and nurse insists not? The hospital meant to book him in [my friend in RNRU] to replace the missing bone in his head, which was removed in an operation following his stroke. It hasn’t been booked, and won't be done before he goes home, by which point it will be 6 months since his stroke. So he will be going home with a piece of bone missing from his skull, and he is very vulnerable to falls anyway. I don't feel safe about him going home. (2012) Participant A recently went to Homerton for a set of broken ankles and torn ligaments in her knees. She spent 12 days in Homerton for her surgeries. She was admitted into Homerton Friday night but was not in surgery until Monday. By Tuesday night she was in a hypertonic shock from a loss of blood and fluids and her kidneys were failing. In the time between her surgery and Tuesday night she had repeatedly told nurses that she did not feel well but her complaints were ignored. By the time her health collapsed and she was in hypertonic shock the staff began taking action without talking her through 1) what was wrong and 2) what they were doing to remedy it. Furthermore, no one explained why such a severe loss of fluid went unnoticed until the point where her life was in danger. She felt 36 this was an egregious misconduct and blatant example of Homerton’s poor patient care. She said there was such poor communication between staff and such little concern for patients that she is sure her failure in health was on Homerton’s hands. After her injection she was given a blood transfusion, but still, no one would tell her what was wrong and what was being done to her to improve her health. There were no doctors readily available to address her concerns and her requests for understanding went ignored by nurses. She also continuously requested that her catheter be removed however the nurses were unable to make this decision as it has to be ordered by a doctor. Eventually after consistent pleading a nurse took it upon herself to remove the catheter herself, despite not having a doctor’s approval. Participant A emphasized how much this meant to her because she understood that the nurse was risking their job in doing that and that it was such a relief to finally find someone who took her pain seriously. However, Participant A also noted that the fact that it was a failure in communication that made this risk necessary. “The doctors weren’t around to give approval, they never came round to check on me, and they never cared to see. So the nurses can’t do anything, I don’t even know if most of them were actually telling the doctors I wanted the catheter out.” ‘A nurse shouldn’t have to risk their job to help their patients.’ She was in Homerton for a total of three weeks, and the whole time she felt there was poor communication between staff but she felt this more so during her post-op appointments. ‘I came in after my surgery to get the plaster removed and check-ups and what not and I find out they lost my file. It was gone. And no one could tell me what happened to it. So I go on for weeks with appointment after appointment and each time it’s a different diagnosis because each doctor says something different. I go in expecting to get the plaster off and they say no and I go again and it’s someone else and he says come back to get it off but then I’m told no again by a different doctor. So the whole time I have to be dependent on the memory of nurses who have seen me in between doctors. My whole experience it’s all just been very unsympathetic, there’s been no apology for any of it.’ Yesterday I was informed by a doctor in the Urology department that the Vasectomy operation I had in Oct 2011 was unsuccessful because the surgeon had cut the wrong tube i.e. had cut a ligament rather than the vas deferens on my right side. As you can imagine I was horrified to find out about this blunder and that I may well have been having unprotected sex over the last few years. I was told by the doctor yesterday that in the two years he had served at the Homerton only 3 operations had not proved successful. Whilst this was reassuring I was certainly not reassured by the fact that a simple vasectomy operation could be bungled in the way he had described. He was very apologetic and offered me a repeat procedure. However I wanted to take time to consider whether the Homerton was the right place for me to have surgery again. When I remembered the actual operation, it reminded me that I felt uneasy at the time that something was not right. When the operation was underway I hadn’t been given enough anesthetic and was in extreme pain during the surgical procedure. (2013) Long Cancer Story on Misdiagnosis I am a Hackney resident, I am a 48 year old woman. I have been until now an active healthy person who works in the community with a passion for people and life. This is my story of being diagnosed with a rare hard to treat cancer, and how I have been badly let down and left to suffer unnecessarily along the way by the medical profession. February 2012 37 On the 21st of February 2012 I was cycling my usual route to work from Hackney to Edmonton, my back wheel slipped on a hill and I had a bad fall. For the next few days I was too bruised and battered to go to work, but when I did I went along to the Chinese acupuncturist, who had a surgery in Edmonton and who I had been seeing for two years, because of my accident, she did a different set of needles , which meant for the first time I lay on my back to be treated, she was inserting the needles when suddenly she stopped, 'What's this' she said, there was real shock in her voice which transferred to me in a wave of panic. She was touching my uterine area and there was a lump, I said, 'I don't know I said, I just thought it was fat', 'no, no she said that's not fat, it's sticking out. 'Go get a scan' she said, 'as soon as you can, don't wait'. I went to my GP as soon as possible, it is a shared practice I saw, Doctor D. She examined this lump, quickly diagnosed a fibroid and organised a scan for me at the local hospital, Homerton, the very next day, so far so good I thought, I am getting this sorted out quickly. March 2012 I went to the hospital for an ultrasound scan, the woman examining me went quiet, I was scanned externally and internally, she called a colleague, they whispered together, again I felt the fear, 'what is it?' I asked, 'oh, it's a fibroid but it's a bit of strange shape, it could be because it's already degenerating'. On the form they gave me regarding this scan, they described this 'fibroid' as 'atypical', a word that haunted me from then on. So at that early stage in the proceedings, this growth was considered not a normal looking fibroid, even though it was in the usual place for a fibroid. As they liken the size of the fibroid to the size of a growing foetus it was said to be sixteen weeks in size. It was the 2nd of March. The very next day after the scan, my abdomen had started to hurt, it was alternately throbbing and then stabbing, I couldn't ignore it, I consider myself a pretty tough woman, if I say something hurts, it really hurts and once again I was worried, so worried, I went to A&E the next day, Sunday 4th March. I saw a Doctor quite fast, he examined me and once again, said, 'it's a fibroid', I said, 'but why does it hurt so much – do fibroids hurt so much?' 'Oh yes he casually said, they can do' he also discovered I had a urinary infection, 'that hurts too' he said. I was sent home with painkillers and antibiotics, from that day on, more than ever before, I noticed this 'fibroid' starting to grow, on a daily basis. The anti-biotics helped the pain to some extent, but it didn't go away. At this point I started to have to take time off work, due to the pain and fatigue, I think that this contributed to me being made redundant at the end of March. On Monday 19th March 2012 I went back to the GP to see Dr. D due to the pain and the rapid growth of the fibroid, I was referred back to the Homerton and told to take stronger painkillers, (though I was not prescribed any), I rang the GP again the next day because I was not convinced and I only had over the counter medication at home and asked 'are you sure this is just a fibroid – I am in so much constant pain, I was told 'yes' and then rather brusquely, that, 'it is just a question of pain control'. I put up with the pain, fatigue, and the fear of the rapid growth of this thing for the next few weeks, believing that it was a fibroid, looking up all information about them, this meant I read many stories direct from women who had suffered fibroids, I never read a story from a woman who had constant pain or the rapid growth rate I was experiencing – by now this 38 growth, the pain and everything involved in it was taking over my life, I was having to dress as if I was pregnant to hide this huge growing lump. The fact the lump looked like a pregnancy was something I found really distressing. It was like being pregnant with an alien. April 2012 I went to the Gynae dept on Tuesday 3rd of April @ 3.10pm. I saw one of the doctors, I believe it was a specialist registrar, I told her about the acute pain and the how scared I was because of the rapid growth. I asked many questions, I was not offered a scan or any test whatsoever despite my persistent questioning. Extract from my diary at this time: I went to the hospital gynaecology department yesterday to see about this fibroid – even the doctor there described it as 'huge', she doesn't need to tell me I know it is, it protrudes so much now, I look 5 months pregnant – I feel this big hard lump in me all the time, it hurts to lift my right leg, I don't like lying on my back because I feel it pressing, I have to go for a wee all the time, I need to defecate about 6 times a day, because it's pressing, I feel it as I walk about, cycle, lie on my front, any kind of exercise. My right knee is still very sore too from that fall. I feel vulnerable and fragile, like I don't want to be touched, or that touching me will hurt or something like that, I also feel very emotional, I've been crying all morning. We went through a range of options at the hospital and none of them are much fun, with a hysterectomy being the worst case scenario. OK, so I haven't got a terminal illness or anything but it's bloody uncomfortable. On the 24th April – I had another appointment at the saw Gynae department. On either this or the previous occasion at the Gynae department I told the doctor how much pain I was in, I thought that I was in such a bad way that they would admit me. I was losing weight, was having palpitations, sweating, scared, in constant acute pain. This doctor said the only way that she would admit me to hospital was, 'if my stomach was so tender that I would not let her touch it and if I was vomiting”. Finally I wrote to the head consultant of the Gynae department, via email, I told her my story and how distressed I was and how much pain I was in. She invited me in to see her. I broke down in her office after she had examined my huge stomach, she said, 'I don't think it's cancer' but did not test me or offer me a scan, she bought my operation forward by two weeks, I begged her to do something before but that was it. I was grateful the op was being bought forward but I still had two and a half weeks to wait. Because I felt so bad and so ill I feel that if my operation had been postponed any longer, that I might have died, I felt like I was dying. May 2012 On the 4th May I went back to A&E again because I was in so much pain, and again I was turned away, being told that I had fibroids. On May 28th, I had the operation at the Homerton which was intended to remove the fibroid, but turned out extremely traumatic. When I turned up at the hospital the 39 anaesthetist was shocked at the way I looked, by now, my pallor was grey, I could not stand up straight, I could barely walk, my tongue was black, the tumour was the size of a 9 month pregnancy. I was due to go first but he cancelled it and made me have tests to see if I was well enough to be operated on. During the operation on they quickly realised this was not a fibroid but probably a malignant growth which had attached itself to my bladder, abdominal wall and bowels all of which needed emergency surgery, I had a subtotal hysterectomy and I lost 6.5 litres of blood needing a complete transfusion. I had a horizontal cut and an unexpected vertical cut up to my navel as they tried to remove the tumour, which disintegrated leaving cancer cells in my abdomen. I was in intensive care for a day, in hospital for over a week, they were amazed at my recovery rate, the whole gynae team at one point or another came to visit me. June 2012 One week after leaving hospital I got a call asking me to come in to the hospital and then I had my worst fears confirmed, I had cancer, a rare, hard to treat, cancer, what I had suspected all the time and they were too complacent to test me, too ready to accept it was a fibroid, they ignored my repeated requests for help, ignored the pain and distress that I was in, it is to my eternal regret that I did not go to another hospital. It was the easy option for them to think 'fibroid' , I have often wondered if this was a money saving exercise not to ever scan me again or test me again. Following my operation I was referred to Barts for further treatment. On meeting my consultant Doctor [K…] I was immediately reassured and comforted by her warmth, humanity and professionalism. I also met Nurse [P…] a specialist nurse who was assigned as my caseworker. Dr [K…] made the time to speak to my sister and myself clearly and in detail regarding my cancer and my impending treatment which involved another major abdominal operation to remove my cervix and remaining ovary just six weeks after the first. I was assured that this operation would not be in any way as traumatic as the first as it would be meticulously planned. I had examinations, minor surgery with cameras, three scans, PET, CT and MRI. I thought I was getting good treatment. I was advised that I would have an epidural as my main painkiller during surgery, it was explained how effective it could be,how patients recovered quicker when an epidural was used. July 2012 I had the surgery at Barts on the 19th of July, I woke up in ITU at 2pm with pain in my left side and a dead right leg even though I could move my toes. The nurses moved me, propped me up to lean on my left side hoping the epidural would take effect, it didn't. Hours later, and after the shifts had changed I had been moved into a small ward and I was still in pain. There was a female doctor in charge, she came to see me once, I complained that I was still in pain and didn't understand why I had to be in pain, she insisted that the epidural would work but it hadn't worked, my left side was in pain and my right leg was still dead, which after 8 or 9 hours was not a nice feeling. I begged for more painkillers but the Doctor refused, in fact the whole night shift that she was on duty she only came to see me that once. She seemed irritated that I was complaining about the epidural and asking for other pain relief, which was specifically the patient controlled analgesia which they gave me at Homerton post operatively. Finally she agreed to change the pain control to a PCA, it didn't' work either, later, in the morning, I overheard the nurses saying that she had set it up to give me a 1 that is ONE 40 milligram dose. That Doctor also failed to inform me that the epidural would stop working immediately and the PCA would take hours to take effect. If I had of known that I would have stuck with the half working epidural. During the time when they took out the epidural and changed me to a PCA, they also tried to move me which was excruciating, the worse pain I have ever had. Later they also insisted on giving me a bed bath, by then I was so distraught and tense that I couldn't even bear for someone to come near me, I had not slept for one minute the whole night. My saviour nurse [S…] came back on shift at 10am next morning and was clearly horrified to see that I was still in pain. She called another Doctor who took one look at me did everything she could to help me, they then called the pain team who sorted my medication until within half an hour I was comfortable. Twenty hours that night shift Doctor let me suffer, at times some of the worse pain I have ever felt. I don't know what her name was but I have often thought of her and her callous uncaring attitude. I found out via Doctor [K…] that the anaesthetist had left detailed instructions as to what to do if the epidural didn't work and no-one read them or saw them or acted upon them. Clearly by the actions of the humane Doctor who appeared in the morning there were all sorts of things the night shift Doctor could have done to ease my pain and anxiety but she decided not to, she decided the best thing to do to was to let me suffer. This has left me feeling very angry and very upset. I was moved into the new wing Rahere Ward, which was very comfortable and clean, (though the food was awful). I had good care there on the whole while I was there. After five days it was decided I was doing well and I was discharged. On that day two members of the pain team came to see me and told me what medication I was going to have which was similar to what I had been given after the first operation at Homerton. It included a slow release strong painkiller as a baseline, Liquid morphine for breakthrough pain and morphine as standard painkillers, they also said I could have diazepam as I am prone to anxiety. There was lots of other medication too, i.e. anti clotting injections, gastric protection etc but when I left I didn't have any of the strong painkillers or diazepam I complained at the time but the pharmacy was shut then. Within two days of leaving I was feeling really bad, I live on my own, I had friends looking after me but I was constantly in pain (always on my left side). Twice I had serious emotional breakdowns/ anxiety attacks because I was so upset and just didn't know what to do. Most of the rest of the time extremely unhappy, anxious and unwell. August 2012 It took numerous phonecalls and visits to the Rahere ward, GPs and Pharmacy to try to sort out my medication, awful to try to sort out when I was feeling so ill – also just about every Doctor or nurse voiced their opinion on what sort of medication I should or shouldn't have. It actually took two whole weeks after leaving to get what I was originally prescribed! Clearly the pain team had forgotten to write down what they recommended or else it was lost somewhere. Sometimes I rang the ward and spoke to doctors who promised to call back but they didn't. On a visit to my GP to try to get more painkillers 6 days after discharge it was discovered that I had a urinary infection which I now I think I left hospital with. Finally Nurse [P….], who was meant to be my caseworker, who hadn't been to see me, hadn't called me to see how I was, organised a district nurse for me as I couldn't bear to inject myself anymore, by then I had lost my appetite, was losing weight rapidly and my wound was infected. She sent an urgent fax to my GP but I must say that I took some offence to what she wrote about me, which I quote..' If pain is increasing then it may be more appropriate to stay with morphine sulphate and rather increase the morphine 41 rather than use Tramadol. I think that [my name…] finds this concept difficult and is muddled at times probably due to being anxious. She needs much reassurance as she does not always understand explanations initially'. It just seems quite strange and patronising that a nurse would write that after she knows that I have had two major surgeries and I have a stage 3 cancer diagnosis? What a difference it made to have a district nurse come and see me, they expressed astonishment that no-one had organised one for me before, that I was basically left to fend for myself and then have to try and sort out all my medication and health care when I was so unwell. The district nurses were consistently wonderful and really made a difference to my wellbeing, I cannot commend them enough. My final complaint regarding care is going back for my post operative results on Monday 6th August. Cancer cells had been found in the biopsy they had done during surgery. In every scan and blood test I had been clear, these results were told to me so positively that as a layman I believed that we had caught the cancer in time and I had a very good chance of recovery. As much as I like and respect Doctor [K…] I do feel she was remiss in warning me not to be too excited by good scan results. I must be fair and say that she had given me the information regarding the chances of cancer spreading but my sister who had always accompanied me agrees that it was not highlighted correctly for us understand that it was the result of the biopsy that was the important thing. I was so unprepared I went for the results on my own, I so did not expect bad news. When she told me,the atmosphere was so different and clearly I was in a state of shock, later Nurse [P…] joined us, they must have seen the state I was in – I had gone from thinking that my cancer had been caught in time to now realising it was a stage 3 really rare and difficult cancer to treat. Neither of them offered me one scrap of comfort, they just let me go, I could hardly walk, I was alone, I called a cab and couldn't tell him where I lived. Getting this diagnosis was many times worse than the first time. I have been a social worker, a carer and a youth worker in my time, I would never have let someone leave with such bad news without offering them some crumb of comfort, a glass of water, a cup of tea, maybe an arm around their shoulder or an offer to call a cab. On reflection I feel that they were embarrassed and just keen to get me out of the way, I bet if I had of had an escort/observer they would have treated me differently. September 2012 After that I was transferred to Doctor [M….] and her team at Barts who I met on Thursday 9th September. I had now learnt more about my cancer and I knew it's extremely resistant to radiotherapy, I was unimpressed with that team how cold they were, they could not offer me one positive tiny grain of something hopeful to cling onto – I am realistic and I wasn't expecting them to say they could 'cure' me, BUT they were unhelpful, uninformative, I felt they had no interest in my care at all. I had had enough bad treatment by now and had no confidence in them. Barts offered me radiotherapy, to start immediately, but I resisted taking that treatment up because I felt strongly that I wanted to recover from another operation again before being blasted with more treatment that would cause me fatigue and other side effects. I went along and got tattooed and measured up, but did not start the treatment. 42 October 2012 I discovered that the Royal Marsden had a sarcoma unit, on the internet, and that Prof Ian Judson is the leading expert on sarcomas in the UK, so I was trying to get to see him. So I asked my GP and he referred me to the Royal Marsden. When I was there I met the Senior Registrar from the Sarcoma department, and asked if they would take me on as their case, and they said yes. They said that Radiotherapy, which was what Barts was proposing, would have been completely the wrong treatment for me. I had a scan, which was clear, and they decided that the treatment I needed was chemotherapy. February 2013I have had 6 cycles of chemotherapy and it finished on Feb 1st 2013. They call it “belt and braces” because I have got cancer on a cellular level in my body, so I don’t have any tumours, or mestases at the moment – they found it in the biopsy. Radiotheray would have only targeted my uterine area, it would never have covered the area that could have cancer cells – chemo therapy goes through all your body and attacks all cancer cells. I have just had a scan which has been clear, and I now don’t have a hospital appointment for 3 months until my next appointment. Summary The things I feel most put out and most angry about are that no one really listened to me, and that I was expected to put up with incredible amounts of pain for months on end. Noone accepted how much pain I was in, and they all sent me home. When I was sent home from Gynae for the third time, I was a hermit, I could not leave the house, I could not do anything anymore. For the last 6 weeks before the operation, I was on my own in terrible pain, and then I wrote to them and said I can’t believe that I am supposed to put up with this level of pain. Each time I went to A&E I thought they would whip me in and do an operation, but they kept sending me home. Yet I had a growth growing at an incredible rate – from me not noticing it in March to the size of a 9 month pregnancy by the time I had the operation in June I think if it had been left much longer I think I would have died. I felt like I was dying. By the time I had turned up for my operation, I had lost 2 and a half stone, I was grey, and my tongue was black. I lost 11 lbs during the operation – which tells you how big the tumour was. The Homerton were completely unprepared during that operation – they went in expecting to take out a fibroid, to find a gigantic tumour, which had attached to bladder and bowel – both of which needed re-sectioning – they had to cut out part of bladder and intestine, because the tumour was attached and sow them back together again. All the time I had been waiting, the tumour had been growing and had been attaching itself to internal organs for its blood supply. I had total blood transfusion. I was in Intensive Care when I came round, and stayed there for 24 hours. I came round with the surgeon, gripping my arm, telling me that they thought 43 it was cancer. I feel sorry for her, she just got landed with me, she didn’t know anything about me During the time before I had the first operation I went Three times to GP Twice to A&E at the Homerton Four times to Gynae department at the Homerton I explained that I was in extreme pain, I explained that whatever was in me was growing rapidly, I explained that I was very concerned and did not think this was a fibroid. I was terrified, embarrassed about how I looked when I went out– and near the time operation was so debilitated I could not walk. And yet each time I was sent home. They make you feel like you are exaggerating, like you are a wuss and that you should just put up with it. If I had anything wrong with me I would not go to Homerton or Barts by choice. I will never go to the Homerton again under any circumstances for anything. My consultant surgeon at Barts was great, I would really recommend her, but what she wanted to happen didn’t happen. What she said would happen in terms of my care post-operatively didn’t translate to the rest of the doctors and the care team. Especially the pain control. It also concerns me that Barts plan was to give me radio therapy, and that when I went to the specialist unit at the Royal Marsden, they said that this was the worst thing for me. To express some good experiences; I rate The Marsden very highly, they have treated me so well and every nurse and Doctor I have met has been kind and helpful. Waiting times are kept to a minimum usually and I have a caseworker nurse who I am still able to call if I have any worries. Macmillan cancer charity gave me some well needed money £200 to help with care costs; they have been wonderful and supportive on the phone when I have been upset and needed someone to talk to. St Joseph's hospice have given me free treatments massage and reflexology, and I see a very good counsellor there who helps me, I think they are a wonderful organisation. My major reason for writing this is that they didn’t listen to me, the patient. I want my story to be there to help improve cancer services for others. Theme 5: Discharge Process Discharge: There is a lack of communication once discharge has taken place. The social services located within the hospital have no links with the social services out of the hospital. The issues patient has when they are discharged from the ward back into the community you are disconnected from support networks. When discharged you need to be put in touch with these support networks to prevent re-admission. (2012) 44 When you are discharged with your care plan you are responsible for contacting the locality team. The locality teams need to educate about not cancelling clients appointments. This can affect their client after being discharged if their not seen quickly and stop providing a poor service. (2012) On being discharged patient have social and no contact for 24-48 hours. The patient on discharge is responsible for calling their social worker. However, the might visit you to check you're taking your medication. (2012) Discharge service is not a good service; they should be ready for when the patient comes out of hospital, they wait until they come out. (2013) Homerton not doing a great job when they discharge a patient; Contract Health Service has not got their care plan together. (2013) We should forget about ‘discharging’ someone with MH needs. Instead we should substitute this with referrals to some pathways. Some valuable pathways have however been closed e.g. E9 where people could just drop-in and wind off.’ (2013) He had a recent operation only a day ago as a follow up from a surgery he had 4 months ago. He was wheeling himself around very slowly; he obviously had not recovered yet. He had just returned from outside in his wheelchair shivering with a light blanket around him and hospital clothing. He commented that “discharge takes forever”, his previous discharge was delayed by a full day because they didn’t have an ambulance for him despite having told him there would be one for him. Additionally he commented that “They let me go without talking to me, I wasn’t prepared at all. I couldn’t live in my home comfortably because they hadn’t made the changes they said they would. I had even paid for the services too but no one ever came. They never talked to me about how to take care of myself or how to adjust my living.” The pharmacist was also not notified of his prescription in time to pick up his medication prior to leaving the hospital so he was without medication for a day. He said that “the day before is not enough time to discharge me” and suggested that all discharge arrangements should be made days before hand to leave time for adjustments. His recent operation was not due to poor post-op care, he did have medical check-ups after the original surgery but he had to take the initiative to set up his discharge care. He also added that “Ward wise things are good; I mean some specialist doesn’t show up on time or at all but I understand that they’re busy.” (2013) Transport The transition to Arriva had a few hiccups in the beginning but is now running more smoothly. After discussions with Homerton staff they are adding 1/3 additional transport vehicles. Homerton staff intends to be clearer about targeting transport vehicles to improve service and will focus on timely transport to those that really need it. There is a general disconnect between discharge and transportation services.: o There is a lack of communication between the nursing staff who is discharging patients and the transport services who arrange the vehicle appointments. Patients often have to sit through hours of waiting time between their releases and when the vehicle arrives. This becomes 45 especially problematic when these hours overlap during meal times, leaving patients to go hungry. o There is also a lack of communication for necessary accommodations in outpatient homes. Patients are discharged without hospital staff thoroughly going over the necessary lifestyle changes (e.g. staff installation). Stories: Disconnect between discharge and transportation ‘…it was really upsetting was it was tea time (6pm) and a nurse went to him and told him how he is being discharged and how he should get his stuff together. The nurse didn’t offer him anything to eat, he packed everything and then he was ruled downstairs into a room. He had to wait one hour and a half. There were 2-3 people who were getting their wheelchair strap down that took 15min he didn’t get home till 9 and he was really hungry. It seemed like…the nurse thought he will be sent downstairs and the transport will be there in 10mins but that wasn’t the case.’ ‘…she went into the hospital had the operation, it was successful, full recovery ready to be discharged. But there were certain things that needed to be put into place. Her mother was ready to be discharged however she had to wait for a staff to be installed at home to enable her mother to have commode, wheelchair, rails and so on, that took 3 months.’ After operations and being discharged, patients need to be monitored at home as well. However there isn’t such a service, only follow up appointment is given which is at least 2 months after operation. Been transferred from one hospital to another, got back to (Huttstell ward?) at 10 pm – everyone had gone home, it was mid-summer 2013. Transport is not available after 5-5.30 pm, since has Arriva taken over the control room is in Birmingham, no help offered’ Hospital discharge: sometimes done late at night (from the observational ward), without ensuring that the patient has the means to get home safely including money for travel or someone to accompany them home. One woman, was feeling unwell in August- for a month she has been in and out of the doctors. Then she called A&E at Homerton. Two nurses looked after her. They were very polite and diagnosed her. She had venereal disease. Was quite impressed. But then when the discharge happened- no one arranged anything and she had to call a taxi. Wards- discharge hurried. There should be discharge committee prior to discharge and encourage, to allow the staff, carers, friends or relatives to attend and provide relevant information and instructions. If the GP is involved they should attend also. Relative to be provided with full information about the things which have been carried out prior to discharge except if the patient do not want this to happen Pharmacy dispensers, transport and social work teams need to be fully integrated for safe hospital discharge Hospital transport systems need to be systematically more sensitive to the needs of frail and older people 46 Hospital discharge: better communication between the community services and hospital prior to discharge Waiting for transport: get something to eat or drink mainly in case of long wait Poor discharge- not ready to go, told you couldn’t stay. Said I am not well enough to go. I had a hernia operation. The nurse said ok you can stay but you cannot have breakfast (Not taking into consideration as this happened 20 years ago) Patient transport could be improved!! As I visit Harriet Spencer and Dr. Luire my epilepsy, I would like to say many thanks for saving my life, also the way the doctors spoke to you as a person. Thanks for the way you helped my wife after her accident. My dad, age 84, is due to go back to the Homerton on October 16th for a colonoscopy. For various reasons, none of us can drive him there, so my sister phoned to book hospital transport on the day. She had to make 7 calls, on six of which she eventually hung up when she was put on hold for up to 15 minutes. She finally got through to someone on the seventh call. (2013) There is a issues when using patient transport is that you have to wait such a long time, in fact sometime you just London transport or ordinary taxi to get to your appointment to endure that you will arrive on time and be seen (2012) A year before diagnosis we started giving my son the injections he needs [of an enzyme to help him break down glycogen] at home. We opted to do this ourselves because the nurses at the hospital who do this work 9 – 5. They were happy for us to do this, and helped out with training. We were having problems going to the Homerton. At first we were having a hospital ambulance. Then the Homerton asked if we could bring him ourselves as the ambulance is expensive – we were told it cost £100. At the time this was ok as we could park outside the hospital. Then they changed the parking restrictions – and our son was too young to have a blue badge. We tried using a taxi-car, but it was taking us too long to get back. Getting there was ok, but often the nurses were inexperienced so we could be there for hours and finishing really late – like 11pm. Sometimes we were there more than 24 hours (2012) A member of my group aged 92 attended an out patient's appointment recently after the appointment she did not feel that well and asked the nurse if she call a cab. The nurse refused to do this are bring the women to the reception or take to the transport office. (2012) (Daughter translated for mother who spoke in Turkish) I went into hospital and I was there for two days- the treatment was ok. I went in to A and E and I had to wait 2/3 hours but it was ok. But I needed transport to get home because I couldn't walk up stairs. I waited nine hours on the bed; no one came to take me home. Every 2/3 hours my daughter asked the nurse how long it would be and they kept saying 2 hours, it was going to be 12 midnight or 1am before the ambulance would come, so we had to get a taxi to my sister's house because her flat is on the ground floor. 2/10 (2012) With hospital transport, for medical services, the drivers turn up late; it makes us late for appointments. Once the driver went off without collecting me. Another time, they came to 47 the Homerton and went to outpatients, and the driver was nasty and took the appointment letter out of my hand so quickly that it tore in my hand. (2013) The Homerton is good, they look after us. The only thing is the transport - we've been waiting for an hour. I don't know if it has been that long before. (2013) When you phone the Homerton you can't get through to them. It’s OK if you are phoning the individual ward, but if you phone transport or anything like that - you can't get through (2013) I had an appointment on the 1st July for 10am at the Homerton. The transport came at 10 to 10 and we didn’t get there until 10.30/11. I didn’t know if I would be seen. I was seen, but not until 12.30. (2013) The transport is very good, the ambulance men are so kind. (2013) We're waiting for hospital transport - over half an hour, it's terrible, it happens all the time. Our longest wait is an hour and a half. They are alright picking up - it's going home- its pot luck. I've come in to outpatients - they take my blood, they thin it with Walferin, because I have a pacemaker. The service is very good - in and out in no time. (2013) Transport patient, I was not successful in getting a car booked, I came in for injections and rang sometime ago to book transport but the computers were down so I rang back later in the day. They still couldn’t book the car so I called a few days later but couldn’t get through. Then Friday I booked a taxi, then could not go home because I had been given an anaesthetic and needed someone to accompany me. At UCL you can book transport 6 to 7 months ahead. Now I can’t get a taxi because they won’t let me go home without someone with me. Last visit, they told me I could not have a person in the ambulance with me. (2013) There needs to be more coordination between people looking after us. More specific coordination. Waiting for transport takes too long. (2013) The wait is too long for ambulance services to get back home. They leave you out in the cold; if they are busy you have to wait even though there are a lot of ambulances. But today has been better, and quicker. (2013) ‘I’ve been going to Homerton for nine years now, since 2004. I’ve had all my major operations here, some for weight loss some for complications from other things. I’m here for aftercare now, and it’s the first time I’ve ever been disappointed. I can’t tell you how disappointing it was, this was the first time I’ve had anything less than wonderful here. I had a surgery done and they just left me as I was. There was no wash, the tape was still all over me, and I wasn’t clean but they didn’t offer me a wash or water, towel, anything. I wasn’t given a new dressing gown either; the same thing I went in with was what I came out in. Last time I was here there was an issue with transport; it wasn’t that bad only because my daughter and carer were there to help. There were all these miscommunications with the hospital and the transport service, they said that since I wasn’t 70 I didn’t qualify for transport which is ridiculous because I’m in a wheelchair – I’ve been using the transport service for years now. They know me here, the boys at the transport desk they spoke up for me and said that I’ve been using the ambulances for years of course I’d need it now. I ended up waiting for a good five hours before my daughter called into the hospital and squared it all away. But really, the service here is 48 phenomenal, Homerton is the best. Much better than any other hospital I’ve been to. (2013) It’s been nothing but trouble with Arriva. This is the third time this has happened to me. I call in and say I need transportation to Homerton and the ambulance comes, doesn’t tell me the route, I just take it on good faith that we’re all going to the same place and I end up here instead of St. Leonards where both my appointments are today. I’ll probably lose my appointments, they still have to see me regardless, they can’t turn me away because transport. If there’s traffic or this sort of mess up they can’t turn me away because the transport service made me late. But this happens to a lot of people, the transport system is unreliable, they’re either late getting you or they take you to the wrong place entirely. It’s because the service isn’t localized anymore, Arriva is somewhere completely outside of Hackney so they don’t know the hospitals, they don’t know the area, and they don’t communicate to learn what is where. These poor boys, the controllers here end up frustrated in the end too because their hands are tied, they’re the middle men in all of it, it’s not their fault. They have to deal with me and others who are frustrated with not having transport. It was excellent before, it was localized, they still have most of the same drivers but the service organization is completely different now….There is no complaints line. I’ve never been told who to call or how to talk to someone to fix this. It leaves the hospital with the problems and they can’t do anything about it. There’s just poor communication between the hospital, the driver, the patients, everybody. I needed transport the day the shift to Arriva happened (July 1st, 2013), I was here until 10 pm waiting for an ambulance. The poor boy working that night stayed past his shift to make sure I found a way home. There were 10 other people waiting for transport until 10 that night. It’s the proportion of patients to vehicles that’s an issue too. It doesn’t match at all….They don’t involve you either, I mean you call and say you need transport this day but when they pick you up they don’t tell you what the route is going to be like, or where everyone is going. You don’t know unless you bother them. (2013) I've come here today with my brother who is having a process in the day centre. I've come here a couple of times and I always find as long as you explain yourself properly its fine. I've been to the Walk In Centre, and I've come with my mother many times - I am her full time carer. The worst thing is the transport waiting system. You come in and give your name, but they don’t give you a timescale. If you knew the wait was going to be an hour or so you could go and get a cup of tea. But because you don’t know, you think that if you go away for even a minute or two, they will call you and you will miss the transport. And the transport is frustrating because you see ambulance drivers sitting around - I know they work hard, but they could say "back in 5 minutes". I don’t feel anyone has overall responsibility. Other than that, I have never had any reason to complain Hospital Transport – Wouldn’t mind the wait so much if you knew how long the wait was going to be so you could go and get a cup of tea. District Nurses Case 1: Men’s medical ward a couple of years ago – hip replacement. General banter on the ward was good amongst patients. Operation not a great success. Problem is with nursing staff – constipation – no bed pan for when he needed to go – had to go to the toilet – didn’t make it on time. Nurse brought soiled clothes to him in a plastic bag & asked what he wanted to have done with them – didn’t ask how he was. Felt it was typical of nursing attitude. Only one or two were bearable. People of a certain age need to be handled with dignity – a man on his own – no comfort offered. Very isolating experience. Aftercare – no 49 support – District Nurse came in every day but wouldn’t do anything practical to help i.e. shopping. Regarded as a bit of a pain at this age. District nurses, or other staff in the community to take over once the patients are discharges should be present at the discharge committee District nurses should improved both in number and quality Theme 6: Environment Food The food in the hospital is not always appropriate for the patients. Eg it is not suitable to provide rice to diabetic patients. The problems of the catering continue although we have complained. The hospital needs training on food safety. Helpful offering a chair, took me to the desk, took me to see the specialist nurse, and made arrangements for my transport, waited between 15 to 30 minutes that’s OK with me. Sometimes as an inpatient, the food is bad for a patient, the canteen is fine, and Costa coffee shop is expensive. League of Friends should come back. Worked as a nurse for until I was 78 years old; now volunteers for St Joseph’s hospice. Last night was at London Hospital on Night Watch with someone who had been diagnosed with advanced HIV. 8/10 The hospital is kept clean. Staff are friendly, easy to talk too and helpful. It is helpful to have volunteers who point people in the right direction. The Costa coffee shop is too expensive. It would be helpful if the medical staff could answer one’s questions on a medical condition and suggest a place to go in connection with one medical condition for support or advice. Disabled. 3/10 From two volunteers experience doing the Homerton outreach stall: 1) There was no kosher food for her or her son to eat while they were waiting for their appointment. Upon asking staff the only kosher food available was in a staff only room. (2013) 2) The food and drink offered at Homerton does not seem to match the community needs of Hackney. Much of what is offered is a bit pricey, and may consequently be out of reach for Hackney residents. Furthermore, given the diverse communities that go to Homerton, I wonder if dietary needs are being met (i.e. Halal & Kosher foods). One person asked us where they could get Kosher food. Better post-op care. Better choice of food. Reintroduce basic nursing care. Bring back matron. (2013) Food- £1.38 per head a day per bed! Crazy. Cleanliness and Hygiene The only other thing about Homerton I’d mention is that the downstairs toilets aren’t kept very clean. I can get to them fine in my wheelchair, but they’re often dirty.” (2013) 50 The lifts are dirty, complained a year ago. In A & E it is OK but, the rest dirty ledges above eye level its dirty’ The lighting in A & E is very dim, accident problem, one cubicle was not lit at all – need to have regular checks so it is sorted out quickly – maintenance’ Toilets not regularly checked in waiting areas’ Drain grills outside the hospital are missing’ ‘Cleaners left floor wet, no sign put out to warn people of the slippery surface’ Housekeeping: There is a lack of cleanliness, particularly of public areas (e.g. lifts). Concerning maintence, nothing is actually done and employees need to do more to keep the hospital clean. Cleaning problems, the entrance of the hospital and the waiting area for day patients is very dirty. All the filth goes to the rest of the wards because of trailing it along. I have been in the cardiology department, it wasn’t hygienic at all. Everyone was very loud there as well, that ward was so loud you could never rest. I saw older people were suffering because of the noise and everyone was just so rude. I thought about how that would be if I were older, and the prospect of being in their position is terrifying. They were suffering so much. General unawareness of physical environment, RATS I went to the Homerton hospital. The doctors are ok and it was alright getting an appointment. The day nurses are ok, but the night nurses are very unpredictable. At night you ask for medication and they say they'll come round in two minutes but then its two hours later and you have to ask again. The children's bit of the hospital is filthy. In my ward there was an 87 year old Indian woman who was lovely and she couldn't get up- she had night nappies. She said she needed to be changed and they said they didn't have any nappies left. This was on the Lamb ward. They left her there until the morning and by that time she was soiled. About four of them were left the whole night. They need to clean the hospital more and have better service from night nurses. (2012) Infection control: One patient gave an account of getting an infection after surgery while she is still in hospital care [gynaecological ward]. Excerpt from a longer story: I have had mainly an excellent experience at Homerton. I suffer from chronic pain, endometriosis and depression. I had diagnostic surgery in 2011 for endometriosis; this was not a good experience. I felt like I was in an abattoir, lead through stages and poked and prided, no care whatsoever. As well as mistakes made with medication. Infection control was awful, pretty much non existent. Volunteer observation: There was a man who was having his lungs drained after having TB in the reception of the hospital. TB is spread inhaling droplets from an infected person, 51 why was this man wandering around with lung drainage? Even if he is not an active TB patient, walking around a hospital where people could be immune-suppressed and there are many children and elderly does not seem safe. [December 2013] Security Case 2: Father (72 years old) stayed at HUHFT twice – heart murmur via A&E/ Cardiology. Has previously had two strokes (May). Acute care unit – large ant crawling on the floor, worried about hygiene. Dad’s recall/disorientated. Equipment worked well. Mum wanted to be contacted to come if he was discharged. Only rang the house phone, not her mobile. The second time she wasn’t contacted at all. Got home to find him there. Attended A&E with a neighbour and spotted her husband wandering. How did he get out? How was he able to leave? Took two days to see a senior member of staff to get update on what was happening then eventually spoke to doctor. Needed bottle but nurse took ages. Mum had to change sheets & clean husband herself. Not enough staff and communication not good. Apathy from nursing staff when family raised concerns. Attitude problem as well as not enough staff. People not being heard or having to make a fuss to be heard. Not expecting to have to challenge a doctor or a member of staff. You expect to be looked after. Health and safety is poor within the hospital. There were people in the ward who are around without control, and nobody is asking them why they are in the ward [gynaecological ward] When I was in there [Homerton] with my hip there was a woman I was next to who thought she was in the war. She got up with her Zimmer frame and cleared everything off the desk. Then she hit me on my hip with the Zimmer frame. The doctor saw the bruises and asked what had happened – I told him – and he asked why he hadn’t been told. (2012) Two girls in their mid 20's stated they did not feel safe in the area of the hospital. Specifically in between the mental health until and the entrance to the hospital. They told each other to walk quickly into the hospital. “Wards are safer at night-security locks” “Nobody here monitors who is going where, how long people stay” “Be aware that homeless people sleep in the waiting room; move them to a Homeless Shelter.” Access ‘For disabled people not well designed – stink’ ‘Not enough disabled toilets’ Not user friendly appointment booking and lack of accessibility in hospital, specifically ENT Homerton Hospital needs to undertake a full accessibility consultation and assessment or face getting sued to failure to comply with the Equality Act 52 The external design is not meeting the needs of disabled people - particularly wheelchair users or those with visual impairment. Eg handrails, labeling of edges of stairwells, random and inappropriate textured pavements [Patients’ summary, Place Survey 2013] Dignity issue about disabled people not able to use toilets independently [Patients’ summary, Place Survey 2013] The blood unit at the Homerton needs to have more wheelchair spaces. (2013) I went to see my friend in the Homerton rehab neurological unit (RNRU) and the washing machine was jumping (as it has been for some time) so that people in wheelchairs cannot use it. The staff say it is faulty and not safe for them to use). This means that since he has been in the unit (4 months) I have to do his washing. (2012) In the hospital, when you are waiting - if you ask they say "Go back and sit down" and that can be difficult if you have learning disabilities. (2013) Signs The talking signs at the Homerton - I miss them - they went when they redeveloped the coffee shop at the Homerton, at least a year ago. They were a very useful tool - especially at first. Especially for anyone visually impaired. (2013) From a volunteer reflection: Many people were incredibly confused as to where they should be going to either visit patients or for their appointment, if possible could include a map with letters or emails about appointments, or make the signs easier to read (see comments). Many people were trying to figure out where the signs actually were so they could follow them. The one volunteer who was directing people was really helpful and did an amazing job identifying people that seemed lost and directing them. “Put up wet floor signs in the Homerton” “Improve signage” We wanted to emphasise the need for Braille. And not enough picture signs for people with a Learning Disability or who use other languages. Asked that think about people not speaking English who also have a literacy issue. Asked what happened to the audio map/help? And noted that toilet signs should say "accessible toilet" not "disabled toilet" [Patients’ group summary feedback, Place Survey, Homerton 2013] Other Environment Comments Temperature - big variations noticed by some. Not too cold or too hot - just big variations. Day rooms - generally there was a lack of day rooms on wards. Where does the parking revenue go? 53 Comments from Healthwatch Hackney Outreach Volunteers collecting comments in Homerton Hospital Reception Area 11th November 2013 Volunteer 1 The building was well-kept and inviting, however the temperature was a concern given that the waiting area for transport (populated mainly by the elderly) was directly by the door, leaving them near the cold and sudden flows of wind. . Staff seemed friendly and eager to see what our stall was offering; many came and asked questions about Healthwatch and our event, almost all took flyers and leaflets to give to their patients. Given the seeming abundance of staff, I was surprised to see so many patients wandering about on their own. At least three patients seemed to be in a vulnerable state either mentally or physically, all identifying themselves as having just recently undergone surgery. These patients were either in dressing gowns or hospital pyjamas in the main corridor, directly in the path of the cold breeze coming in through the front door. One patient was so weak he could hardly wheel himself to and from the corridor, and not once did a staff member stop to see if he needed help. It did not seem to align with the friendliness and eagerness to help that hospital staff showed us at the stall. Many people did seem hesitant to share their comments, often saying ‘It’s fine really, I know they’re busy” but would later on become visibly agitated at the wait time. It might be beneficial to begin pitching the idea of a “discharge packet”, with a FAQ handout concerning discharge or out-patient care and resources like complaints lines, pharmacies, carers, etc. Volunteer 2 Many people were incredibly confused as to where they should be going to either visit patients or for their appointment, if possible could include a map with letters or emails about appointments, or make the signs easier to read (see comments). Many people were trying to figure out where the signs actually were so they could follow them. The one volunteer who was directing people was really helpful and did an amazing job identifying people that seemed lost and directing them. There were patients that needed help that were wandering around the front of the 54 hospital. The first example was a woman, who when approached for commenting said “I’ve just had an operation.” And was walking in circles waiting for someone to collect her. The second example was a man who has surgery on his leg was going in and out of the hospital after stating he needed to go upstairs for his wound to be dressed. Third, a man in a wheelchair who had an operation was barely able to wheel himself around and had just come from outside where his thin nightgown and wheelchair were completely wet. There was a lot of hospital staff but more business/policy not being helpful to those who were lost or needed assistance. Are there designated roles with strict boundaries that prevent them from helping patients? Some More Longer Stories covering several areas Story 1 Pleasant and very professional consultant and surgeons, easy to deal with in person. Helpful secretarial staff, when inappropriate appointments and inaccurate reports had to be changed. Day stay unit mostly very impressive (except for some windowless rooms). Too many appointments for quite simple procedures! Waiting area for pre-surgical assessment was very cramped and airless. Being required to turn up at 10am on a Sunday morning for pre-operative treatment ordered by the surgeon, only to find that noone knew what treatment was needed, then didn’t start it until late lunchtime – so I had very little sleep before having to waste several hours in a half-empty, auxiliary ward with other patients’ noisy families, all eating smelly food, while I was fasting before a gastrointestinal investigation. Being bullied by one of a neighboring patient’s many simultaneous visitors, out of sight of staff. No access to fresh air on either ward; no daylight in the side ward where I had to spend the night and recovery time. Such a noisy overnight environment that I had to ask for earplugs to get any sleep. Lack of competent weekend nursing staff. No warning on Sunday night or overnight of how early I was due for surgery: the surgeon arrived while I was in the shower. Being inaccurately informed about the findings of the investigation by a registrar who was hurrying to attend another procedure. Discharge papers, including post-operative prescriptions, being prepared by another registrar who didn’t understand the IT system and saved them where no-one could retrieve them until after the hospital pharmacy had closed. Inadequate information in advance about the day stay unit. The general assumption that every patient has someone to accompany and take them home afterwards –untrue of single patients. Not being told until I saw the surgeon that I had any option to have anesthetic rather than sedation for a day procedure. Being unsupported, I had to come back for the procedure on a second occasion, after arranging specially for a friend to pick me up afterwards. Malfunctioning camera meant no film was made of the separate throat investigation, so that the only person to see evidence of what turned out to be apparently chronic gastritis was the surgeon. My GP is now having to treat, long-term, something she cannot see! Patient support service failed to note what I actually said and interfered, going way beyond what they had told me would be done to sort out a complaint. Please radically improve the written information available in advance for any patient due to attend for any procedure – whether in the day stay unit or overnight on a ward. I had to visit both to ask elementary questions for myself, which reception desk staff were not unable to answer effectively. Get the draft information sheets read by a lay person – someone from right outside the hospital, who is not on NHS staff. Full, effective IT training is essential for all prescribing and reporting staff. Having to come back to collect post-operative prescriptions after being sent home to recover following general anesthetic made recovery much slower. 55 Hospital procedures must NOT assume that every patient has supportive friends and family to run errands for them, accompany them to hospital and drive them home afterwards. Many single people live alone and have no such support system. Make hospital transport available to patients who have had operations. Story 2: Maternity Services at Homerton. Black Male 37. What was good about the service? Nice new unit, water birth, own rooms, buttons everywhere, new technology, nice feel. You think you are really supported, you are reassured that all will be OK. What was not so good? What was not so good was the service that people delivered. My wife has had 3 kids before. She has spontaneous births. We had timed the contractions, because we have been through this before. When we got there, they carried out a quick examination and said she was not dilated enough and told us to go and walk round the car park. But we had been monitoring the contractions, and we tried to explain about the spontaneous births from when the contractions are every 4 – 5 minutes. Once my wife had put her clothes on, the contractions were coming really fast. The nurse had left. I went outside and said to people call the nurse back, we’re not going out, but it went over their head. Within a few minutes the waters had broken. I pulled the cord and about 10 of them came running in. They stood around looking shocked. Only 1 midwife acted – she said what do you want, bath or water. Then she said get in, get in, this is happening now. The others cleaned up the mess and went. We tried to get my wife into the pool, as soon as she was in that was it. Basically 25 minutes from when we entered the hospital the baby was born. The midwife took the baby out of the bath and said she is a lovely healthy baby. But it seemed that the nurses were worried that because she had come so quickly they hadn’t done the right thing. So they said they were not going to let us go now. So what ended up happening was that one doctor came in and did tests and said everything was OK. Then 2 more doctors came and did checks and said she was OK – one of them was very rough. But because the air conditioning was on and they kept coming in and taking the baby’s clothes off she started shivering. Then after about an hour, the head doctor came in and started saying there was something wrong, blood or sugar or something. So we had to wait until 10 or 12 hours later. Our midwife […., who had delivered the baby] went home, and came back again – and said ‘what are you still doing here’? Then the original nurse came in, who had told us to go down to the car park. She felt bad, she apologised – saying anything could have happened. But the baby was fine. That’s thanks to one or two midwives who had the confidence in themselves to do the things they are meant to. How could it be better? The facilities were bang on smack, but the facilities don’t matter at all if the staff don’t do the one thing they are meant to do. One of the nurses too said we just want people to come in and go out. Even though Homerton is one of the best birth hospitals, still need 56 training, and for nurses to consult with other nurses, not just the co-ordinator, when they feel they are going against their instinct. It was an empty night – it wasn’t that there were loads of people. It was 1am, we could have just stayed there. We gave them all the times of the contractions during the day, and told them that the previous births had been spontaneous. Then of all the nurses that were there, 1 responded [to the emergency]. The nurses weren’t bad, they just were following rules and regulations and walked into a brick wall. Overall I would have to say 10/10, because my daughter was born fine – and as parents we were able to cope – we had emergency buttons etc. I didn’t see any complaints forms – not even the place for good comments. I didn’t want to complain, I told the doctors what I thought – I said I don’t want you to touch my child anymore. Story 3: Woman Black British/Nigerian 30’s - Maternity What was good about the serivce? What’s good is that at Lower Clapton they are very caring and efficient and the records are up to date. All the doctors care at the GP, they are fantastic. What was not so good? The problem is the Homerton not running in parallel with them [regarding maternity services]. For example: the midwives come from the Homerton – the doctors at the GP will have made the appointment, booked it and sent the info in advance. So when you get to see the midwives, the records have not been updated. The GP is then updating them verbally, saying this was sent to you – maybe a week ago. And sometimes appointments get cancelled and you have to rebook because Homerton haven’t picked up the booking. The midwives, because they are not based at the clinic, they come from the Homerton – individually they are OK. They are variable depending on the individual practitioner. The Homerton phone number is not reliable at the maternity clinic. It’s rubbish – you are better walking in and booking yourself than phoning and trusting that all this info will be on your record. What I mean is that they don’t pick up the phone, and if they do, they say it’s done, but nothing will be done. If there was another hospital that I could go to I think I would prefer that. Records are important, doctors can only do so much if the records are not updated. So they start asking a sick person what they should have on their record from the GP practice. There are a lot of potholes – potentials for things not being so good. How could it be better? 57 My GPs are really working hard, but the hospital system – especially about information transfer and management, and human resources – I think it is a shambles. They need to invest in this instead of beautiful surroundings. Like nurses scrambling because they don’t know what they are doing. I think they have invested in making it beautiful rather than efficient. I would give the GP 8 out of 10, and the Homerton 1 out of 10. Story 4: Woman White British 21 - Maternity What was good about the service? What is good is that the baby was delivered successfully and the standard was OK in terms of hygiene and the staff being helpful and friendly. What was not so good? The process went alright but I was sent home and then called back in because something went wrong. I knew something was wrong but I wasn’t listened to. I went in [to the Homerton] because something felt not right. I had a lot of pain and tightening. They said that was normal, but I felt sick and I knew something wasn’t right. I spoke to the midwife who said that I was not dilated enough. Even though I said that something wasn’t right she still send me home. A few hours later [at 11am] I had to call an ambulance to come back in. Everything with the baby went normally, but when my son came out, the cord was tied in 2 knots, but thankfully everything went well and I was released after 2 days. How could it be better? When I went back, I explained to the midwife what had happened, and she said to put in a complaint. I didn’t because it was too much to follow up with having a new baby. Also I couldn’t remember the midwife’s name and they had taken my blue book. 58