Download patient participation

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