Response From Epilepsy Voluntary Organisations To New NHS Initiative On Long-Term Conditions, UK

Main Category: Epilepsy
Article Date: 10 Mar 2005 - 0:00 PDT


UK - Epilepsy voluntary organisations welcome new UK Government plans to establish quality standards for services for people with long-term neurological conditions, but call for an urgent rethink on funding to address the serious gaps in service provision and improve the health of people with epilepsy.

Epilepsy is the most common serious neurological condition in the UK, and has been highlighted as a national priority for action since 2001. The single biggest stumbling block to better service provision is the access to specialist care.

Epilepsy charities representing 460,000 people with epilepsy have welcomed the focus that the government's new National Service Framework (NSF) for Long Term Conditions brings to this under resourced area of the health service. The charities also acknowledge that the proposals within the NSF for improving the care and treatment of people with long-term conditions certainly appear to address many of the problems faced in accessing appropriate and timely health and social care needs.

Nevertheless, with only quality requirements that lack the support of ring fenced funding, no plan to address the serious shortage of neurologists and nurses, no apparent way of measuring progress and a 10 year implementation plan, the charities are concerned that it is difficult to see how the NSF will bring about real change.

Simon Wigglesworth, deputy chief executive for Epilepsy Action, comments: "The NSF for people with long-term neurological conditions sets out a plan for improved services for people with long-term neurological conditions. However, the quality requirements will not be achievable unless there is a huge investment in more specialist nurses and doctors, and clear ways of monitoring progress across all quality standards."

10 million people in the UK are living with a neurological condition that has a significant impact on their life but the UK only has 358 consultant neurologists, which is one for every 177,000 people. France has five times as many neurologists and Italy 22 times as many.

Jane Hanna, director of Epilepsy Bereaved, comments: " Long-term planning needs to start now in order to increase the number of neurologists in this country by nearly five fold to cope with the demand on services. In the short-term, specialist nurses can help bridge the gap, but only if a significant number of new posts are created now."

Recent research shows an average waiting time of 8-10 weeks from the first GP appointment to the first specialist appointment, and average waiting times for diagnostic tests of between 5 weeks (for an EEG) and 24 weeks for an MRI. The recent National Institute for Clinical Excellence (NICE) epilepsy guideline specifies that people with suspected epilepsy should be seen within two weeks by a specialist and that tests should be available within four weeks of a specialist asking for them.

1. The National Services Framework on long-term conditions can be seen on the Department of Health website - http://www.dh.gov.uk/longtermnsf - from 10th March.

2. The consensus statement, including the findings of patients and neurologists, is available on Epilepsy Action's website- http://www.epilepsy.org.uk - or Epilepsy Bereaved's website - http://www.sudep.org.

3. In May 2002 a National Sentinel Audit into Epilepsy Related Deaths was released by the Department of Health. The report, called 'Death in the Shadows' found that up to 400 of 1000 deaths a year from epilepsy are potentially avoidable through timely access to specialist services. More information about the report and its findings is available on the websites of Epilepsy Action and Epilepsy Bereaved.

4. Epilepsy is the most common serious neurological condition affecting 1 in every 133 people in the UK. Epilepsy is the tendency to have recurrent seizures and can affect anyone, at any age and from any walk of life. On average 81 people every day are diagnosed with epilepsy and 1 in 20 people will have a single seizure at some time in their life.

5. Epilepsy Action offers confidential advice and information to members of the public and professionals on many aspects of epilepsy via the Freephone Helpline - 0808 800 5050 - and website http://www.epilepsy.org.uk.

6. For access to spokespeople and human interest stories, please contact Ingrid Burns or Lucy Rollinson: 0113 210 8800 (main line) or email press@epilepsy.org.uk.

7. Epilepsy Bereaved provides information on SUDEP and other epilepsy-related deaths, and supports families who have experienced epilepsy related death: Bereavement Contact Line - 01235 772 852.

8. For access to people who have experience of sudden unexpected death in epilepsy please contact Sally Gomersall: 01636 682888 or Jane Hanna: 07932 735479. Email sally.gomersall@ntlworld.com or janehanna@dial.pipex.com.

9. This press release is also available in Adobe Acrobat PDF and Microsoft Word formats at http://www.epilepsy.org.uk/press/releases.html

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