Select Committee on Health Written Evidence

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, November 2004. Back

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