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
PATIENT PARTICIPATION Epilepsy Focus Group at Caen Medical Centre on Tuesday 26th June 2012 Attendees Dr Brian Bennett Dr Mark Fresch Nurse Robertson Julie Tanton Susan Piercy Alice McCarron Peggy Milner Sarah Holland Bryan Ansell Deborah West Bryan Dove-Dixon Kathleen Warburton The practice had invited 24 patients who appear on our epilepsy register to attend this focus group meeting. Nine patients accepted this invitation but only eight managed to attend the meeting today. Welcome/ Introduction Dr Bennett started the meeting by thanking everyone for taking the time to attend. He explained that we hold patient focus group meetings on a quarterly basis inviting selected groups of patients with particular needs or conditions to discuss how we are doing at meeting their needs, the experiences they have encountered and how we might improve our services by asking them for feedback. Everyone around the table introduced themselves to the group. The following topics were raised for discussion. Appointment Availability All the patients present today did not have any problems to report with the appointment system or availability of appointments at Caen. Some patients stated that they do not gain much by attending for an annual review of their condition when called by the practice. They said that if their condition is controlled at this time they feel it is a waste of their and our time. These patients said that they tend to book an appointment with their usual GP if and when they are having problems with their condition. Dr Bennett explained that it is important to have a good relationship with a regular GP who you can see when you have a problem but it is also important that we keep in contact with those patients who are not good attenders and annual recall helps us to achieve this. Understanding your Condition Some patients explained that they are aware of a pending seizure and others have no notice at all of a seizure. They all said that their condition does impact on their lives but most of those present do not let it control their lives. Some of the patients present stated that when their condition was first diagnosed, some many years ago, that their GP appeared to have little knowledge and most were referred directly to secondary care. Dr Bennett explained that this is the usual route to take at the onset of epilepsy as it is a specialised area and it is important for patients to be seen initially by a specialist consultant to have their symptoms 1 controlled. Once stable most patients will only be seen occasionally by secondary care and monitored by their GP. Most of the patients present today said they are now more open about their condition and try to let new acquaintances know and what to expect, they all felt there was still a taboo around epilepsy but that this has improved over the years. All hoped with more education and knowledge about the condition it would become easier for everyone to accept and handle. It was suggested and agreed that a waiting room display might be worth considering to raise awareness of this condition and what to do if someone has a seizure. One lady present says that she carries a laminated card, which she created herself, which explains her condition and what to do if she has a seizure. Others present said they have an ID card with similar information, some carry nothing. It was agreed that the practice should investigate ID cards which patients could be issued with at annual review to consider carrying. Not being able to drive had been a big impact on the lives of many present, and those who are able to drive are desperate to remain fit free so that they can continue to hold a licence. One of the patients made the group aware that if they are unable to drive due to seizures that they are entitled to a free bus pass. Most of the patients present remain under secondary care review, some regular and some less frequent. Not all patients were under review of NDDH and some travel further afield as they felt the need to consult with particular consultants with specialist knowledge. When asked, Dr Bennett explained that patient choice means they can request a referral to a consultant other than those at our local hospital. One patient explained that he is required to attend for monthly monitoring blood tests, which he comes to Caen for, but when he goes to see his consultant they never have the blood test results in his hospital notes. Nurse Ann-Marie Robertson advised the patient to always tell the blood taker that his consultant requires a copy of the test results, they will then tick the necessary box on the request form and add the consultant’s details, and this should ensure that a paper copy is always sent to the consultant as well as the GP. The gentleman involved was happy to know this information and will do this in future. Understanding your Medication The patients present today were on a variation of different medications, some controlled by these others not so controlled. No problems were reported when using our repeat prescribing process but some stated that they need to order their medication in plenty of time as the pharmacy usually needs to order their medication and this can sometimes cause a delay. Others stated that they must always request the same brand of medication as different brands do not necessarily control their seizures. Drs Bennett and Fresch agreed that it is important to always take the same brand of medication and that this information can be added to the patient’s repeat prescribing list if needed. One of the group asked if everyone was aware that patients with epilepsy are entitled to free prescriptions, all present were aware of this but some had not known at the onset of their condition. 2 Link with other epilepsy services Some of the patients present said that they had been involved with the Epilepsy Action Group which is based in Barnstaple and some subscribe to a magazine. It was suggested that the Epilepsy Action magazine might be a good read for the waiting room and would help raise awareness of the condition. Service at Caen in comparison to other medical centres Only a couple of the patients present had been registered at other practices and those that have always been registered at Caen felt that the service and review we offered was adequate and accept that most of their care, when not controlled, needs to be performed in secondary care by a specialist. One lady who had been registered elsewhere asked why we only issued 2 months supply of medication as her previous surgery would issue her with 3 months. Dr Bennett explained that this is governed by our Local PCT to a certain degree, who in fact would like us to reduce to 1 months supply, but suggested she should discuss this with her regular GP who might be happy to increase the supply of medication providing her condition is well controlled. Outcome/Changes Practice to contact Epilepsy Action and investigate information packs, ID cards, magazine subscription and display material Practice to consider creating information leaflet to issue to patients at annual review, this should include information on ID cards, free prescriptions and bus passes etc Practice to produce waiting room display and article in practice newsletter, to include details about the condition and what to do if someone has a seizure. Summary All the patients present were thanked for attending and for their input into the meeting. The patients present said that they appreciated being invited to participate and being given the opportunity to discuss their condition and needs. The practice team felt the meeting had been positive and would try to put the suggestions discussed in place. 3