Self-help
organisations Epilepsy
The British
Epilepsy Association
British Epilepsy Association (BEA)
was set up in 1950, and since then the Association has changed
dramatically, but our aim is still the same - to raise awareness of
epilepsy. It is not too many years ago that people with epilepsy
were routinely locked away in institutions, barred from marriage and
generally treated as undesirable. Thankfully things have changed and
continue to change, but not quickly enough!
BEA is a membership
organisation and is one of the largest epilepsy membership
organisations in the world. Our members include people with
epilepsy, their families and friends and the health professionals
who care for them. Our members give us a voice - one which is
listened to with increasing respect by medical organisations,
government departments and service providers.
In recent years BEA has been
involved with campaigns to change driving law, to bring in
guidelines for education authorities when dealing with children with
epilepsy, to provide cheaper and fairer insurance schemes and many
more. BEA was actively involved at consultation stage for the UK
Disability Discrimination Act, ensuring that people with epilepsy
were represented and that their problems were addressed.
Changing the law is difficult
but changing attitudes is a real challenge. Myths are hard to kill,
and our members’ experiences demonstrate that, for some people,
epilepsy is still something to fear and avoid. Education is the
strongest weapon against this kind of attitude and BEA works
extremely hard to tell people the truth about epilepsy. Every week
thousands of publications are sent to people’s homes, their
schools and offices and to doctor’s surgeries and hospitals, all
aimed at destroying the harmful myths that have dogged people with
epilepsy down through the centuries.
People with epilepsy sometimes
say that other people’s attitudes are the hardest part of having
epilepsy. They learn to cope with having seizures. They get used to
taking daily medication. But nobody should have to get used to
losing friends, jobs, college places etc. just because other people
can’t handle seizures. BEA wants everybody to be able to recognise
epileptic seizures, to know what to do and what not to do. BEA wants
a world where those of us with epilepsy can get on with living our
lives, freed by quality health care and understanding.
BEA Sapphire Nurses
BEA’s Sapphire Nurse scheme aims to appoint epilepsy specialist
nurses in hospitals around the UK. The name Sapphire was chosen to
commemorate the British Epilepsy Association’s 45th Anniversary
year, 1995, the year when the first Sapphire Nurse was appointed.
All the nurses are H Grade - meaning that they have the skills of
clinical nurse specialists.
The aims of the BEA Sapphire
Nurses are:-
-
to act as a specialist
resource in the diagnosis, treatment and care of people with
epilepsy;
-
to promote good practice
in the diagnosis, treatment and care of people with epilepsy;
-
to establish and
participate in multi-disciplinary training and education
programmes for professionals and to promote a wider
understanding of epilepsy, particularly within the community;
-
to encourage the setting
up of specialist epilepsy clinics in GP practices;
-
to assist those people
who attend the Accident and Emergency Department of a
hospital, having had an "unexplained episode" and
referring them to the epileptologist as appropriate.
Initially, The Welcome
Foundation sponsored the scheme and other organisations and
individuals are now contributing. As National Health Service
Purchasing Authorities see the benefits, they take over the funding.
People with epilepsy are
recognising the opportunities they have for appropriate assessment
and treatment that has come about through the BEA Sapphire Nurses
and they are much in demand. Nurse managed clinics have been set up
and patients have improved opportunities for counselling and
discussion about the wider effects of their condition.
Consultants are now feeling
able to offer a wider service for their clients with epilepsy thanks
to the support of a BEA Sapphire Nurse, for example tertiary
referrals to psychiatrists are being considered in the knowledge
that the BEA Sapphire Nurse will be able to support the patient
during this time.
BEA Sapphire Nurses are
working between secondary and primary care, improving the knowledge
of General Practitioners and Practice Nurses, and supporting them in
their management of patients with epilepsy.
