29. Evidence submitted by Epilepsy Action
(PPI 36)
Epilepsy Action is the UK's leading epilepsy
charity. Our aims are to improve the quality of life, represent
and promote the interests of the 456,000 people living with epilepsy
in the UK.
In what circumstances should wider public consultation
(including under Section 11 of the Health and Social Care Act
2001) be carried out and what form should this take?
1. Epilepsy Action considers that wide public
consultation should play a fundamental role in the decision-making
process. Wider public consultation should take place in ongoing
service planning, in the development and examination of new proposals
and when decisions are being taken on general service delivery
and major changes.
2. It has been widely acknowledged that
there is a significant shortfall in the provision of epilepsy
services in the UK. The Chief Medical Officer has confirmed that
epilepsy has suffered historical neglect and lack of investment
compared with other long-term conditions.[15]
As a result there is a serious treatment gap for people with epilepsy.
3. Epilepsy specialist nurses play a crucial
role in supporting people with epilepsy. They enable many patients
to manage their epilepsy effectively and to remain independent
in the community. Guidelines have been produced in recent years
which state the importance of having Epilepsy Specialist Nurses.
These include the National Institute for Health and Clinical Excellence
(NICE)[16]
and Scottish Intercollegiate Guidelines Network (SIGN).[17]
4. NICE acknowledges the importance of the
role of specialist nurses. In its epilepsy guideline, NICE says
that epilepsy specialist nurses should be an integral part of
the network of care of individuals with epilepsy.[18]
Their key roles are to support both epilepsy specialists and generalists,
ensure access to community and multi-agency services, and provide
information, training and support to the individual, families
and carers.
5. Epilepsy Action is committed to supporting
epilepsy specialist nurses. The Sapphire Nurse Scheme reflects
Epilepsy Action's commitment to improving health care services
for people with epilepsy, working in partnership with funders
and health care providers. A Sapphire Nurse is an epilepsy specialist
nurse whose post was funded initially by Epilepsy Action. Epilepsy
Action provides pump prime funding for a Sapphire Nurse post for
either one year for a full-time post or two years for a part-time
post.
6. Since the Sapphire Nurse Scheme began
in 1995 Epilepsy Action has provided pump prime funding for 83
Sapphire Nurse posts, investing £2.5 million into the UK
health service. Epilepsy Action never commits to pump prime fund
a nurse post without assurance that the post will continue to
be funded by the acute trust or primary care trust after the period
of pump prime funding has ended.
7. In November 2004, a consensus group of
expert clinical epileptologists and representatives of the epilepsy
voluntary sector met to review various survey findings characterising
the current state of epilepsy care and to compare against standards
outlined in the (then) recently published NICE guideline on epilepsy.
[19]
8. The expert consensus was that current
services fall well short of the standards set out by NICE in terms
of waiting times for specialists and diagnostic tests, and research
findings indicate that little is likely to change in the next
four years. The expert consensus group called for a number of
changes to be made to improve the shortage of neurologists and
other epilepsy specialists.
9. In the short term the expert consensus
calls for a national plan to increase the number of epilepsy specialist
nurses from 140 to 600 across all epilepsy disciplines (adult,
paediatric, learning difficulties.)
10. However, despite the acknowledgement
of the consensus group that there should be a significant increase
in the numbers of epilepsy specialist nurses, current epilepsy
specialist nurse posts are under threat across the UK. At present,
10% of epilepsy specialist nursing posts are threatened with redundancy,
working reduced hours and being reassigned to non-specialist duties,
or epilepsy specialist nurses are leaving their posts and not
being replaced.
11. Epilepsy Action considers that wider
public consultation should take place in such circumstances where
health trusts are considering cutting specialist services. This
should take the form of consulting with patients, doctors, the
general public and other relevant bodies, including the voluntary
sector. Epilepsy Action believes that it is crucial that the people
who are using these services are involved in the decision-making
process and that consideration is given to the viewpoints of people
who are benefiting from the service.
Michaela Miller
Campaigns & Policy Officer, Epilepsy Action
8 January 2007
15 The Annual Report of the Chief Medical Officer of
the Department of Health 2001, Department of Health 2001. Back
16
NICE, Clinical Guideline 20, The epilepsies: diagnosis and management
of the epilepsies in adults in primary and secondary care, October
2004. Back
17
SIGN Guideline No. 70, Diagnosis and management of epilepsy in
adults, Quick Reference Guide. April 2003. Back
18
To be confirmed. Back
19
http://www.epilepsy.org.uk/campaigns/lobbying/consensus/index.html,
November 2004. Back
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