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Patient Guide Information book and DVD for Patients and their Families 2241_Fres_PatientGuide.indd 1 7/4/11 08:14:01 2 2241_Fres_PatientGuide.indd 2 7/4/11 08:14:02 Information on your dialysis clinic Chapter 1 ������������������������������������������������������������������������������������� 5 Welcome to your dialysis clinic ������������������������������� 6 Your unit team ��������������������������������������������������������������������������� 7 Confidentiality matters������������������������������������������������������� 8 Your health and safety matters ��������������������������10 Smoking ����������������������������������������������������������������������������������������11 Fire Evacuation ����������������������������������������������������������������������11 Behaviour and Tolerance ��������������������������������������������11 Hygiene and infection control��������������������������������11 Your Unit is called: Your Unit Telephone no: Your Clinic / Unit Manager is: Your named Nurse is: (nurse responsible for overseeing your care) Your clinic’s opening hours are: Mon Tue Wed Thu Fri Sat Your Referring Consultant Nephrologist is: Your Referring NHS Trust is: Telephone contact details for referring NHS Trust: Contents Other relevant Healthcare Professionals (e.g. Dietician, social worker, diabetologist): Please note No clinic is open on Christmas Day or New Year’s Day. Your haemodialysis schedule will be altered during these two weeks to allow for this. For out of hours please contact your NHS Trust. Other Useful Clinic Information Chapter 2 ����������������������������������������������������������������������������������13 Understanding haemodialysis��������������������������������14 How does dialysis work?��������������������������������������������15 Access ��������������������������������������������������������������������������������������������18 Fistula������������������������������������������������������������������������������������������������18 Graft����������������������������������������������������������������������������������������������������18 Caring for your fistula or graft��������������������������������19 Haemodialysis catheter ����������������������������������������������20 Blood tests����������������������������������������������������������������������������������21 Chapter 3 ����������������������������������������������������������������������������������23 Living with haemodialysis�������������������������������������������24 Commonly asked questions������������������������������������25 Holiday dialysis and you ����������������������������������������������26 What do I do first?��������������������������������������������������������������26 Where can I go?��������������������������������������������������������������������26 Diet ����������������������������������������������������������������������������������������������������27 Sodium��������������������������������������������������������������������������������������������27 Protein����������������������������������������������������������������������������������������������28 Fluid Restriction ��������������������������������������������������������������������28 Potassium ����������������������������������������������������������������������������������29 Phosphate ����������������������������������������������������������������������������������29 Breads, Cereals and Potatoes������������������������������29 Fruit and Vegetables ��������������������������������������������������������29 Chapter 4 ����������������������������������������������������������������������������������31 Talk to us ��������������������������������������������������������������������������������������32 Patient Satisfaction Survey ��������������������������������������33 How to make a complaint������������������������������������������34 Sources of Information��������������������������������������������������36 3 2241_Fres_PatientGuide.indd 3 7/4/11 08:14:02 Foreword We want to make your dialysis journey with us as comfortable as possible. We have created this Patient Guide and DVD in close collaboration with long-term dialysis patients and our NephroCare® nurses who care for our patients on a daily basis. Fresenius Medical Care Renal Services is dedicated to providing patients who suffer from a kidney disease with the best level of care. Our NephroCare® Programme ensures that patients receive the best quality of care by employing the best staff and technology. Our organisation has worked in partnership with NHS Hospitals for over 20 years and is currently providing dialysis to thousands of patients throughout the UK. This guide is a thorough introduction for new dialysis patients as well as their families and carers. We want to help you come to terms with dialysis and this guide will provide answers to many of the questions you will have and encourage you along the way. It will also serve as a useful ongoing reference book for patients who are already being treated through NephroCare®. Christine Houghton Managing Director, Fresenius Medical Care Renal Services Ltd. 4 2241_Fres_PatientGuide.indd 4 7/4/11 08:14:03 Chapter 1 Welcome to your dialysis clinic NephroCare Reflections: “ No road seems long with a friend at your side” 5 2241_Fres_PatientGuide.indd 5 7/4/11 08:14:04 Welcome to your dialysis clinic you know you’re in safe hands Fresenius Medical Care Renal Services is the largest provider of renal care in the world. In the UK we have over 55 dialysis units, which can be found as far north as County Durham and as far south as Cornwall. In the UK, all patients receiving dialysis This statement includes the are NHS patients Your treatment company’s aims and objectives is free of charge and payment is and the services to be provided for arranged through a contract between patients It also provides an overview the NHS and Fresenius Medical of the complaints procedure and Care Renal Services We work in statement in respect of dignity, privacy partnership with your local hospital to and patient confidentiality deliver a high quality treatment and Through our NephroCare® Programme, care at your dialysis unit Fresenius Medical Care Renal Services A copy of the ‘Statement of Purpose’ will be on display in your unit Please is delivering the highest standards of The Fresenius Medical Care Renal feel free to ask a member of staff patient care through fully-managed and Services ‘Statement of Purpose’ should you require a personal copy fully-equipped dialysis units We give outlines to its patients and support the best possible individual treatment to service users the standards and over 60,000 patients, in 650 of our own conditions of care the company units, in 27 countries around the world will provide 6 2241_Fres_PatientGuide.indd 6 7/4/11 08:14:07 Di re c Regi o nal r to Clinic Services Dir ec to r Fresenius Medical Care Renal In the UK there are five Regional Services considers its greatest asset Directors, these people are responsible to be its employees We are the single for the overall management of their largest employer of renal personnel in dialysis units and ensure that each the UK and believe in the recruitment unit provides the highest level of care of high quality staff, whilst providing for its dialysis patients In achieving excellent training and development to this goal, the Regional Directors encourage career progressions within are supported by Regional Support the organisation Managers, who are then supported by individual Clinic or Unit Managers Reporting into the Managing Director ct or Your unit team ng agi Man re Di of the Clinic business is the Clinic The Clinic or Unit Manager is On a day to day basis patients are Services Director, she is responsible for responsible for the daily management cared for within teams of Registered the Regional Management, Training, of the dialysis unit This group of highly Nurses, each with a dedicated Nursing and Technical teams qualified individuals and his/her team Team Leader who is an experienced perform the dialysis treatment This Registered Nurse Each patient will treatment is provided in accordance with also be allocated a named nurse on the policies and procedures set out by admission to the unit Fresenius Medical Care Renal Services Although the named nurse will Your unit will have either a Clinic not deliver your treatment every Manager and Deputy Clinic Manager session they will be your direct or a Unit Manager and Clinical point of contact and responsible for Manager These senior clinic staff will assessing, planning, coordinating be supported by some or all of the and evaluating your care needs on following – Team Leaders, Registered an individual and ongoing basis Nurses, Dialysis Assistants, Healthcare Clinic Manager Assistants and a unit Secretary 7 2241_Fres_PatientGuide.indd 7 7/4/11 08:14:16 You will see your nurse with a handheld computer also called a PDA – this is the link between the information in the dialysis machine and the EuCliD5 system. At our Clinics Head Office in Birmingham we have a training centre that runs various educational sessions throughout the year for the development of unit staff. Training is coordinated by the Training Manager who is supported by a team of highly experienced Teacher Practitioners, who also provide clinical training within the units. We also have a Chief Nurse who works in conjunction with the senior management and training teams to provide leadership, support and guidance to clinical staff. Confidentiality matters It is vitally important that we keep your medical information private and confidential. When you begin your dialysis journey with us, you will be given a patient card where we will store data about your dialysis treatment. You will be given the card when you arrive at the unit and it will be used to record your weight. While you are undergoing dialysis, the machine is recording information about your dialysis treatment. In 8 2241_Fres_PatientGuide.indd 8 7/4/11 08:14:20 2009 we installed a new patient management system called EuCliD5, this system stores all the treatment EuCliD5 ® The European-wide database for optimal Dialysis and clinical data of all our patients You will see your nurse with a handheld computer also called a PDA – this is the link between the information in the dialysis machine and the EuCliD5 system This system allows information to be securely shared with your NHS Consultant Nephrologist and ensures a seamless transfer of data between ourselves and the parent hospital The nurse will record information on the PDA such as your weight, blood The EuCliD5® clinical database was set up in 1999 by Fresenius pressure, temperature and other Medical Care to collect anonymous clinical data, pinpoint general nursing information problems and find new solutions At the end of the session the card is Thanks to the positive results achieved, EuCliD5® is in use in Fresenius locked away until your next visit Medical Care centres in Europe and now even in Latin America It supplies precise information on the effectiveness of therapy – of course, encrypted to comply with strict data protection regulations EuCliD5® is a safe and unique resource to safeguard and continually improve the high quality of NephroCare treatment for each patient 9 2241_Fres_PatientGuide.indd 9 7/4/11 08:14:21 Your health and safety matters During your visit to the unit, it is important to us that you stay safe and any potential hazards are minimised so far as is reasonably practicable. Your unit staff are trained and regularly updated in a number of health and safety subjects but as a patient you can also help contribute to a safe environment. Here are some guidelines to assist you in further minimising the risks to your own health and safety and that of our staff. Slips, trips and falls are the most common of hazards within a healthcare environment, so please observe the following: 1 Never rush around 2 Take care when climbing any stairs that may be present in the unit always take your time when moving around the unit. always hold on to the handrail; always use lifts where provided (except in the event of a fire). 3 Never enter prohibited areas 4 Take care when getting on and off your dialysis chair 5 8 After treatment always take your time when leaving your dialysis chair 9 Pay attention and take your time when standing on and off the weighing scales 10 Never overreach to get something 11 If you accidentally spill something such as a drink if an area is off limits to you, it is for a reason. ensure your clothing is not caught on anything before you stand up. Ideally you should put the chair in the upright position and lower to a comfortable level before getting off. Never leave items on the floor they are a trip hazard to yourself, other patients and the staff; always keep personal belongings on the tables provided alongside your dialysis chair in the treatment area, or on your knee in the waiting areas. 6 Do not walk around the unit without wearing shoes 7 Observe and follow any hazard warning signs ensure your access to them is clear. If in doubt ask for assistance. always ask for assistance, our staff are always happy to help. please inform a member of staff immediately in order that it is cleaned up quickly to prevent anyone slipping. 12 If you wish to report any hazards 13 If you feel there are aspects of your treatment where additional assistance may be required you are more likely to slip in stockinged feet. they are there to inform you of any hazards, which may be present. sometimes standing up too quickly can lead to light headedness, which could potentially make you lose your balance and fall. which you see during your time within the unit, please inform a member of staff who will ensure that it is dealt with. please inform a member of staff. 10 2241_Fres_PatientGuide.indd 10 7/4/11 08:14:21 Smoking Hygiene and infection control Smoking is not permitted on any part of the premises, entrances or grounds of Fresenius Medical Care Renal Services at any time. Where units are located on NHS premises, local agreement and designated areas apply. Just as health and safety is important so is hygiene and infection control. There are many ways in which you can help to minimise the risk of infection when you are at the dialysis unit. • Always use the hand rub when you arrive and leave the unit Fire Evacuation • If you have a fistula, always wash your access arm before your dialysis The possibility of a fire occurring is highly unlikely; however it is important that you are familiar with the evacuation procedure and location of emergency exits. You should receive information about the fire evacuation procedure when you begin your dialysis with us. • If you bring in any food with you, keep this at your own station and Behaviour and Tolerance • Always ask the nurse for gloves if you are handling your own access site Fresenius Medical Care Renal Services has a statutory obligation to provide a safe and secure environment for its staff and others as well as a moral duty to take all reasonable steps to protect and support its staff. Any form of violence, abusive, racist or sexist behaviour against its staff, patients or visitors will not be tolerated. Protecting and safeguarding individuals treatment begins, sinks are located close to your station don’t share with other patients • Keep bags away from the top of trolleys and bins and always ensure your hands are clean on leaving your dialysis station • Understand the difference between the waste bags – black is general waste and the coloured bag (yellow or orange) is clinical waste such as used dressings and lines. The yellow boxes are for the disposal of sharp items • Finally, remember to always use the foot pedal to open the bin not your hands Nursing staff have a responsibility to act on any suspicion or evidence of abuse and to pass their concerns on to a responsible person. • Do not place anything on top of any bins or boxes. What is abuse? Abuse can be physical, sexual, verbal, financial, and psychological or an act of neglect or discrimination. Anyone can be an abuser e.g. relatives, professional staff, friends or other service users, and it can take place in any setting. If you or another person are being abused Signs of abuse Examples can include: • Unexplained injuries, multiple bruising, abrasions or finger marks • Withdrawal, mood changes, extreme anxiety, low self esteem • Deterioration of health for no apparent reason • Inadequate clothing, hygiene needs not being met • An unwillingness to be alone with a particular carer • Unwillingness of a carer to allow access to a person or suspect abuse Tell someone you can trust as soon as you can e.g. relative, friend, member of nursing staff, social worker. Your unit staff can give you a list of useful local contact numbers on request e.g. social services, police, age concern, NSPCC. You do not have to tell them the reason for your request. What happens next? • If you tell a member of unit staff they will inform their line manager. • They will document what you have told them. • Advice will be sought from the local social services who will help and support you to stop the abuse from happening. 11 2241_Fres_PatientGuide.indd 11 14/4/11 11:41:44 12 2241_Fres_PatientGuide.indd 12 7/4/11 08:14:21 Chapter 2 Understanding Haemodialysis NephroCare Reflections: “ Take good care of yourself and each day can be a gem” (from Laos) 13 2241_Fres_PatientGuide.indd 13 7/4/11 08:14:22 i NephroCare Info: A kidney is made up of around 1 million mini filters called nephrons. 1.2 litres of blood flow through both kidneys every minute – that’s about 1,700 litres a day. The kidneys are high-performance, vital organs Understanding haemodialysis You probably already know what the kidneys look like and where they are in your body It’s important to also know what the kidneys do for the body Once you know this, you’ll understand what the NephroCare nursing team and you yourself must do to ensure you continue to feel well far into the future The kidneys are bean-shaped, about the size of the fist, sitting beneath the lowest rib They perform many vital tasks for the body, these include: • Theyexpelexcesswaterandmetabolicend-products(waste) out of the body as urine • Theyplayacentralroleinregulatingbloodpressure • Theyplayanimportantroleinbloodformationandthe development of bones 14 2241_Fres_PatientGuide.indd 14 7/4/11 08:14:22 How does dialysis work? It replaces some of the functions your kidneys normally perform, such as the removal of extra water from the body and the removal of waste products that build up in the blood stream Q What does Haemodialysis do? Haemodialysis is a treatment that replaces some of the functions your kidneys normally perform, such as the removal of extra water from the body and the removal of waste products that build up in the blood stream. When your kidneys are not working properly, waste products and fluid build up in your blood and can cause: • Sickness and vomiting • Loss of appetite and weight loss • Hiccoughs • Anaemia • Trouble sleeping • Tiredness • Itching • Leg cramps at night • Swelling, often of your ankles • Difficulty breathing Dialysis will help you manage these problems. However if you are not receiving enough dialysis this will show up in your blood results and you may still suffer some of these problems. Getting the right amount of dialysis is important as it has been proven to make you feel better and live longer. 15 2241_Fres_PatientGuide.indd 15 7/4/11 08:14:24 Healthy kidneys work 14 times longer than “artificial kidneys” 8760 hours/year Q 624 hours/year How does dialysis work? When a person has kidney failure the haemodialysis Throughout the haemodialysis treatment your blood is then machine and dialyser, (also known as an artificial kidney) pumped by the machine from your access through the work together to take over some of the work that the bloodline circuit and dialyser The dialyser is made up of a kidneys can no longer manage This work includes the semi permeable membrane – toxins from the blood pass removal of toxins or waste products and excess water through this semi permeable membrane in the fluid that from the blood You may hear clinic staff referring to these flows through the dialyser This fluid is called dialysate processes as clearance and ultrafiltration Pressure inside the dialyser ‘squeezes out’ any excess To enable these processes to happen your nurse will fluid The toxins and excess fluid then go down the programme the dialysis machine according to your dialysis drain whilst the blood is returned to you This process is prescription This will include your treatment time and continuous during treatment but only a small amount of amount of excess fluid to be removed You will then be your blood is in the circuit at any one time connected using bloodlines and your ‘dialysis access’ which may be a fistula, graft or catheter Your nurse programmes the machine according to your Consultant Nephrologist’s prescription, this ensures you receive the correct haemodialysis treatment Your individual prescription is based on your blood results 16 2241_Fres_PatientGuide.indd 16 7/4/11 08:14:27 Q How much dialysis do I need? It is found that to live longer and stay fit and healthy most people need haemodialysis three times a week. Each dialysis session should last at least four hours making a total of 12 hours of dialysis each week. Fit on Dialysis – it is possible! Q What are the complications associated with haemodialysis? Between treatments the levels of toxins in your blood The symptoms described are commonly due to hypotension rise. During dialysis these levels can drop quickly and (low blood pressure). This can be caused by taking too much can affect people in different ways. Haemodialysis fluid off you during your dialysis or by removing it too quickly. patients can experience some or all of the following: Your nurse can adjust your treatments to minimise these • Dizziness occurrences but carefully adhering to your fluid restriction will • Feeling sick help reduce the risk of these symptoms occurring. • Headaches • Muscle cramps Blood pressure medication can also make a difference to Many patients do not experience any of these how you feel on dialysis and along with the fluid removal complications and dialyse with no ill affects at all. can cause your blood pressure to fall. If this happens your The nurses will be monitoring you closely during your Consultant Nephrologist can discuss your medication with dialysis treatment. If you experience any of these you and make any necessary alterations to your prescription. complications or feel unwell during your treatment it is very important to alert a member of the nursing team Muscle cramps are again related to the fluid removal but immediately. also the removal of salt. Your nurse can adjust your dialysis to help alleviate these symptoms. 17 2241_Fres_PatientGuide.indd 17 7/4/11 08:14:28 Access Access in this context, means access to your blood so we can perform dialysis. There are different types of access – fistula, graft or haemodialysis catheter – and the Consultant Nephrologist at your renal unit will advise on the best option for you. A fistula or graft is usually formed a few weeks before you need to start dialysis. Fistula (also know as an AVF or Arterio Venous Fistula) A fistula is the best form of access for most patients because it lasts longer and has fewer problems such as clotting or infection. It requires a small operation to join an artery and vein together, usually in your arm. A large vessel will then develop over a 4-6 week period and this will then allow for dialysis needles to be inserted each dialysis session so you can be connected to the dialysis machine. Graft A graft is the second best choice to a fistula. This requires a small operation where a soft synthetic tube is attached to an artery and vein, joining them together. This type of access is often made if your own blood vessels are too small to make a fistula. Patients with a fistula or graft can use a local anaesthetic spray (Xylocaine), cream or injection to help reduce any discomfort that may be associated with insertion of the needles. We can provide the injection and your GP can prescribe Emla cream or Xylocaine spray. 18 2241_Fres_PatientGuide.indd 18 7/4/11 08:14:29 Caring for your fistula or graft Our Chief Nurse gives you some tips for caring for your access. It’s really important to look after whichever type of access you have carefully so please follow the instructions you receive from your nursing team. • Do check the buzz at least once daily. If you can’t feel the buzz, you must contact the renal unit immediately as your fistula/graft may have stopped working. Do not wait until your next dialysis treatment. • Do keep your fistula/graft area clean by washing it with soap and water every day • Do report any increased pain, swelling, bruising, bleeding or increased heat over the area to the nurses on the dialysis unit • Do remove old dressings from cannulation sites when it is safe to do so (nursing staff will advise) • Do check the buzz if you feel dizzy or if your blood pressure is low • If possible, wash your fistula or graft site when you arrive at the unit for treatment or ask for assistance to do this • Do not wear restrictive clothing and jewellery over the access site • Do not carry heavy objects with a fistula or graft arm • Do not expose to extremes of hot and cold temperature • Do not allow any blood samples, injections or blood pressure readings to be carried out on your fistula or graft limb • Do not allow yourself to become dehydrated • Do not sleep on an access arm 19 2241_Fres_PatientGuide.indd 19 7/4/11 08:14:30 Haemodialysis catheter Haemodialysis catheters are usually only used as a temporary access as they carry more risks of infection A small plastic tube (the haemodialysis catheter) is inserted into a large vein, usually in the neck or in a vessel running alongside your collarbone Caring for your Haemodialysis catheter • Ahaemodialysiscathetermaybereferredtobydifferentnamesincludinga line Permcath or central venous catheter (CVC) • Theexitsitereferstowherethecatheterentersyourskin • Tohelpkeepthecathetersecureandtoreducetheriskofinfectionadressing should cover the exit site at all times • Thecathetershouldalwaysbekeptdryasadampcatheterprovidestheideal environment for bacteria • Anyoneusingthecatheterortouchingthecatheterexitsitemustfirstwash their hands this includes the patient, or healthcare staff • Contactyourdialysisunitimmediatelyifyounoteanyswelling,pain,redness, or oozing from the exit site or if you have a temperature • Ifthereisbleedingfromtheexitsiteapplypressureandcontactthedialysis unit for advice If bleeding is heavy or doesn’t stop when applying pressure call 999 to obtain prompt medical attention • Do not pull/tug the catheter as it may become dislodged If playing sports tape the line securely to your chest Contact sports are not advised • Yourdialysiscathetershouldonlybeusedfordialysisunlessthereisa medical emergency 20 2241_Fres_PatientGuide.indd 20 7/4/11 08:14:30 Blood tests Blood tests are performed routinely and show how effective your dialysis is and It is a standard safety procedure in all UK how you are responding to your diet and medications. A group of blood tests haemodialysis centres to test for a number of are taken every month to monitor certain substances in your blood. Your Nurse, infections (viruses) that are transmitted in the Consultant and Dietitian review the results each month. The results, and any change in your treatment will also be discussed with you. Monthly blood tests usually include the following: blood. These include Hepatitis B Virus (Hep B), Hepatitis C Virus (Hep C), and HIV. These tests are taken when you first commence haemodialysis treatment and thereafter approximately every 3 months for Hep B and • Urea – measures how well you are dialysing and gives an indication of the amount of protein you are eating. • Calcium & Phosphate – monitored to enable you to be prescribed the right dose of phosphate binders. Getting those levels right will help reduce or correct renal bone disease. • Potassium – too high or too low can have an adverse affect on your heart. • Sodium – low levels can cause cramp; high levels can cause thirst, fluid gains and high blood pressure. C and annually for HIV although this may vary depending on your own unit’s specific schedule. Should you go for holiday dialysis abroad the frequency of these tests is also likely to increase for a short time on your return. Your Consultant Nephrologist may ask for other blood tests to be taken from time to time, these will be explained to you by the doctor or your nurse. • Albumin – an indication of how well nourished you are. • Haemoglobin – Hb is the level of red blood cells in your body. Too few (a low Hb) means you are anaemic. Your Consultant Nephrologist will prescribe your Erythroprotein (EPO) dose dependant on this result. 21 2241_Fres_PatientGuide.indd 21 7/4/11 08:14:30 22 2241_Fres_PatientGuide.indd 22 7/4/11 08:14:30 Chapter 3 Living with Haemodialysis NephroCare Reflections: “To rule the moment is to rule life.” (Marie von Ebner-Eschenbach) 23 2241_Fres_PatientGuide.indd 23 7/4/11 08:14:30 Living with haemodialysis Having kidney failure and needing to be on haemodialysis means adapting your lifestyle. How you handle the changes and your feelings are important factors in maintaining your health. The staff at your dialysis unit can offer you advice and support through difficulties you and your family may be experiencing. The staff can also put you in contact with other support workers such as a social worker should you request it. You are encouraged to lead as normal a life as possible whilst maintaining your dialysis diet and regime. This will help you cope with the changes your illness has brought to your life. 24 2241_Fres_PatientGuide.indd 24 7/4/11 08:14:33 Commonly asked questions Here, we answer some of the common questions we receive about living with haemodialysis. Q Q Can I work or go to college as normal? Can I still do regular exercise? Yes. A regular exercise programme has many continue with your education. Every effort will be made benefits for a dialysis patient. Physically it can to arrange your dialysis around your work or college increase red blood cells and as a result increase schedule. The nursing staff will advise you as to any your energy levels. It may also lead to improved particular care that should be taken with your access. muscle strength and a lower level of blood fats. Psychologically, exercise can lower anxiety, improve Will my sex drive be affected? self-esteem and give you a sense of control over Possibly, many patients experience a decrease your body. in sexual activity due to changes in physical and emotional health. Impotence may occur. If you have Q Q You are encouraged to return to your occupation or Q Can I still go on holidays? any problems please do seek advice. You can, if you Yes. Being a dialysis patient doesn’t mean you wish, choose to talk to a member of staff who is the cannot travel for business or pleasure. It does mean same sex as you. There may be medical intervention you will need to make plans to receive treatments that might be of help to you or you could ask to in a dialysis centre near where you are visiting. Your discuss your problems with a trained counsellor. nurse can help make these arrangements. Am I able to eat out? (for more information about holidaying while on dialysis, please see overleaf) Yes. You can eat out even though you are on a renal diet, by following the advice given to you by your dietitian and nurses. If you are eating out for one meal you can always adjust the amount of other food eaten at home on that day. Be especially careful with drink and food containing fluid for example sauces, gravy and custard as this can often be your biggest temptation when socialising. 25 2241_Fres_PatientGuide.indd 25 7/4/11 08:14:34 Holiday dialysis and you What do I do first? The first thing you need to do is decide where you would like The EHIC also covers any treatment you need for a to go and then find a dialysis centre in that area, which can chronic disease of pre-existing illness. You need to make provide you with holiday dialysis. Do not confirm any bookings arrangements in advance for kidney dialysis and or pay any holiday deposits before this has been done. oxygen therapy. Where can I go? It is also important to take out travel insurance, which covers Your local unit or kidney patient associations should be able to you for a pre-existing medical condition. Most standard advise you of dialysis units in other areas both in the UK and policies do not provide this cover. The National Kidney abroad. Many of the Fresenius Medical Care Renal Services Federation website has a list of companies that may be able units will offer holiday dialysis. If you are going on holiday to help if you have problems getting insurance. It is advisable within the European Union e.g. Spain, France, Canary Islands to sort out insurance before you book your holiday. etc., you will need a European Health Insurance Card (EHIC). Information on where to find this form is given below: Q How long does it take to arrange? You are responsible for arranging your holiday, the Online: www.ehic.org.uk clinic staff will help you by ensuring that the correct Telephone: 0845 606 2030 documentation is sent to your holiday clinic in Or collect a form from your local post office. good time. You need to give your clinic at least two months notice to enable them to do this. The EHIC is normally valid for three to five years and covers any medical treatment that becomes necessary during your If you have any queries your clinic staff are only too happy trip, because of either illness or accident. The card gives to help you. Happy Holidays! access to state-provided medical treatment only and you’ll be treated on the same basis as an insured person living in the country you’re visiting. Remember, this might not cover all the things you’d expect to get free of charge from the NHS in the UK. You may have to make a contribution to the cost of your care. 26 2241_Fres_PatientGuide.indd 26 7/4/11 08:14:34 Diet Haemodialysis patients require a special diet, which helps reduce waste products building up in your blood stream between dialysis sessions The dietary information you are given has the potential to reduce complications associated with your treatment and therefore has the benefit of improving your overall health You will see a dietitian at regular times either at your regular Consultant Nephrologist appointment or at your clinic Your dietitian will give you advice on what foods you may eat and what drinks to take and to avoid Some of this advice is general to most patients on dialysis while some will be tailored to your individual needs as determined by your blood results We have focused on the nutritional areas which are of relevance to all patients – sodium, protein and fluid restriction Sodium Salt Sodium (salt) is a mineral found in nearly all foods and helps the body What is HIGH per 100g over 1.5g Eat occasionally or as a treat maintain its water balance and regulate blood pressure Too much sodium can cause thirst, water retention and high blood pressure The main source of sodium comes from adding salt to your meals and in processed foods and ready meals This means you should What is between MEDIUM 0.3g and per 100g 1.5g not add salt to your food We do not recommend that you use salt An OK choice substitutes as these contain potassium Your dietitian will be able to give you very clear advice on what foods to avoid or limit When you are shopping, check the label to see much salt is in the food per What is LOW 0.3g A healthier choice and per 100g below 100g Then you can work out if the food is high, medium or low in salt using the figures below 27 2241_Fres_PatientGuide.indd 27 7/4/11 08:14:39 Protein Protein is required for the growth, maintenance and repair of body tissues. The kidneys normally remove the breakdown products of protein from your body. When the kidneys fail this function is lost. Haemodialysis removes this waste protein (urea). It is important for you to eat protein but too much can make you feel sick, tired and itchy. The protein intake you need is very specific to you and the dietitian will discuss with you exactly what amount is right for you. Fluid Restriction Controlling your fluid intake is an important consideration when you are having haemodialysis. The amount of fluid you are allowed differs from person to person and depends how much the kidneys are making and the amount of urine you are passing each day. This may decrease over time. Fluid removal is therefore a vital part of your treatment, however the dialysis machine can’t remove as much fluid as the kidneys would naturally remove. Watching your fluid intake is important as fluid overload may put a strain on your heart. As a general rule, the amount of weight you can gain safely depends on your body size. Between dialysis sessions try not to exceed a weight increase of 2-3kg above your dry weight. Your fluid allowance includes everything that you drink including tea, coffee, milk, squash, fizzy drinks and alcohol. Remember that fluid is also found in food such as yoghurt, ice cream, gravy, soup and jelly. 28 2241_Fres_PatientGuide.indd 28 7/4/11 08:14:42 1 2 3 DIETARY TIP: Eat regular meals including breakfast; don’t skip meals 3 DIETARY TIP: Eat more fruit and vegetables – just check with your doctor or dietitian about your blood potassium levels DIETARY TIP: DIETARY TIP: Eat less fat and fewer fatty foods – this will help control your cholesterol, which is important in reducing the risk of heart disease 4 DIETARY TIP: Drink alcohol in moderation Eat foods rich in fibre – eating fibre-rich food helps protect against heart disease and cancer Potassium Potassium can be very important for some renal patients provide a constant energy supply Higher fibre choices such Potassium helps the nerves and muscles in your body as wholemeal, granary and rye breads, oats and wholegrain function properly and extra potassium is normally removed cereals such as weetabix, are recommended rather than by your kidneys Too much potassium can have an affect more refined choices such as white bread, rice krispies etc on your heart You may need additional information on this depending on your blood results, however your doctor or Higher fat, lower fibre options such as chips, roast potatoes, dietitian will advise waffles, hash browns, sugar or chocolate coated breakfast cereals, fried rice, and pasta with creamy sauces should be Phosphate eliminated where possible, or kept to a minimum Phosphate can also be important for some renal patients Phosphate is a form of the mineral phosphorous and is Fruit and Vegetables needed to make, maintain and repair bones The kidneys All fruits and vegetables are low in phosphate If you are control the amount of phosphate in the body, however on a potassium restriction, remember to follow your low as kidney failure progresses, the kidneys lose their ability potassium advice regarding fruit and vegetable intake to do this Most people on dialysis will need to eat less and limit to no more than 5 servings per day Most phosphate in order to control the level in their blood fruit and vegetables contain some potassium, however however your doctor or dietitian can advise you on this potassium is lost if they are boiled when cooked To retain the potassium content of your vegetables when you Breads, Cereals and Potatoes cook them you may wish to steam, bake or microwave Bread, cereals and potatoes contain carbohydrate (starch) them (with minimal water) Fruit and vegetables provide which provides us with energy, fibre and some vitamins and protection against heart disease from the antioxidants and minerals These foods should be included in each meal to the soluble fibre they contain 29 2241_Fres_PatientGuide.indd 29 7/4/11 08:14:43 2241_Fres_PatientGuide.indd 30 7/4/11 08:14:43 Chapter 4 Talk to us NephroCare Reflections: “ Some wait for time to change, others seize the moment and act.” (Dante Alighieri) 2241_Fres_PatientGuide.indd 31 7/4/11 08:14:43 “I think the unit is wonderful. The surroundings are perfect and the unit itself is very bright, clean and airy, it cannot be faulted. The machines are marvellous and very modern. You never have to wait for your treatment and find it really good that you can come straight in for your dialysis when you arrive. The staff are always pleasant, helpful and kind, and there is a brilliant Clinic Manager. The unit is a lovely environment to have your dialysis treatment.” Patient at our Woodgate Dialysis Unit Talk to us For new patients we want to reassure you about your forthcoming journey at one of our NephroCare dialysis units. For patients who have been dialysing with us for some time, you will have already developed a relationship with the nursing staff and other patients. 32 2241_Fres_PatientGuide.indd 32 7/4/11 08:14:45 Patient Satisfaction Survey One way you can give us your feedback is through our annual Patient Satisfaction Survey This is handed out to all our patients in all our units and is your opportunity Th e 20 r leading p arrangements and the staff th si s annive rsary vi ly de r of dia o ser ces vi to give us feedback on your dialysis unit, your dialysis 2010 Patie nt Sa Your c tisfac hance tion S to let u urvey s know what you thin k Talk to me about the Survey We’re listen ing We’re listening 33 2241_Fres_PatientGuide.indd 33 7/4/11 08:14:49 How to make a complaint Should any patient, relative or visitor wish to make a complaint or a suggestion the following guidelines, which have been based on the National Health Service procedure should be followed: Should you wish to make a complaint regarding your care you should initially refer it, in writing or verbally, to your Clinic or Unit Manager who will acknowledge receipt within two working days of receiving the complaint. All complaints will be sympathetically dealt with within two weeks or where an investigation takes longer a letter of explanation will be sent. Once the complaint has been investigated you will receive written confirmation of the investigation and actions taken. If you are not satisfied with the explanation and want the matter investigated further, you should write to: Clinic Services Director Fresenius Medical Care Renal Services Ltd Facet Road Kings Norton Birmingham B38 9PT 34 2241_Fres_PatientGuide.indd 34 7/4/11 08:14:54 You are also entitled to make a complaint to the Care Trust (PCT). PALS are not part of the complaints procedure Quality Commission (CQC) who will investigate any issues. itself but they might be able to resolve your concerns The address for complaints to the CQC is displayed on the informally or can tell you more about the complaints notice board in the waiting area. procedure and independent complaints advocacy services. Staff will be happy to provide you with a full copy of the The PALS or complaints manager at the NHS organisation company complaints procedure should you request one. you are complaining about can provide advice, including Your family members/carers may also make a complaint. In about local independent complaints advocacy services. this case the above procedure should be followed. Should you or your family/carer wish to make a complaint the staff at Your local PCT can also advise if you have a complaint your clinic will provide support in how to follow the process. about a primary care practitioner. A copy of all complaints will be sent to the Clinic Services The Independent Complaints Advocacy Service (ICAS) Director and where necessary will engage the involvement provides advice and support to people who want to complain of the Care Quality Commission. about the NHS. Details are at www.dh.gov.uk. Call NHS Direct on 0845 4647 or your local Citizens Advice Bureau. As you are a NHS patient you can also use the NHS The Department of Health’s website also has information complaints procedure. If you are unhappy with the on the NHS complaints procedure – www.dh.gov.uk. treatment or service you have received from the NHS you are entitled to make a complaint, have it considered, and If you or your family/carer wish to make a suggestion, receive a response from the NHS organisation or primary please speak to a member of staff from the unit or put care practitioner concerned. it in writing and address it for the attention of the Clinic Manager. Fresenius Medical Care Renal Services Ltd., The NHS complaints procedure as previously mentioned value the comments and suggestions from patients and applies to the NHS in England, except for NHS Foundation their families as we are continuously striving to improve our Trusts. A Patient Advice and Liaison Service (PALS) has services to you. been established in every NHS Trust and Primary Care 35 2241_Fres_PatientGuide.indd 35 7/4/11 08:14:54 Sources of Information There are many national and local organisations that provide information and services to local kidney patients and their families. Your local Kidney Patient Association (KPA) or a member of your clinic National Kidney Federation (NKF) British Kidney Patients Association (BKPA) The National Kidney Federation is the only UK charity run Founded in 1973 by Elizabeth Ward, whose son Timbo was by kidney patients for kidney patients. diagnosed with kidney failure at the age of 13. The BKPA is concerned with helping the material and physical needs of Its aim is to promote, throughout the United Kingdom, the patients and their families. It also lobbies for improved facilities, best renal medical practice and treatment, the health of increased Government funding the need for kidney doctors. persons suffering from kidney disease or renal failure, and to support the related needs of those relatives and friends Tel: 01420 472021/2 who care for kidney patients. www.britishkidney-pa.co.uk A list of all the KPAs can be found on the National Kidney Other organisations Federation website. You may find the following organisations useful: Tel: 0845 6010209 Diabetes UK – www.diabetes.org.uk www.kidney.org.uk Royal National Institution for the Blind – www.rnib.org.uk British Heart Foundation – www.bhf.org.uk Blood Pressure Association – www.assoc.org.uk Independent Healthcare: National Minimum Standards Regulations (2002) As independent providers of health care we are regulated by the Care Quality Commission (CQC). From October 2010 we must comply with the Health and Social Care Act 2008 (Regulated Activities) Regulations 2010 and the Care Quality Commission (Registration) Regulations 2009. These regulations describe the essential standards of quality and safety that people who use health care services have a right to expect . Our compliance with these essential standards is continuously monitored by the CQC. fmcrs uk 04/11 104 Date of preparation: April 2011 © Copyright 2010 Fresenius Medical Care Deutschland GmbH. staff can help you with contact details. Fresenius Medical Care UK Limited · Nunn Brook Road · Huthwaite · Sutton in Ashfield · Notts · NG17 2HU · England · Phone: +44 (0) 1623 445100 · Fax: +44 (0) 1623 550807 Head office: Else-Kröner Straße 1 · 61352 Bad Homburg v. d. H. · Germany www.fmc-ag.com 2241_Fres_PatientGuide.indd 36 7/4/11 08:14:56