We urge UK visitors to our site to tell their Member of Parliament (MP) how inadequate epilepsy services currently are and how they can help improve the lives of the one in 131 people in the UK who have epilepsy.
The following briefing outlines the key issues, which you may wish to use when contacting your MP:
Action you can take:
Contact your local MP and let them know the main points of this briefing and ask them the following questions:
1. Will you join the All-Party Parliamentary Group on epilepsy to help push epilepsy up the agenda and achieve positive change?
2. Will you lobby the minister for more concrete proposals to deal with the issues that are raised in the briefing?
3. Will you call for an injection of funding to kick start the essential training of epilepsy specialist consultants and nurses?
Epilepsy Action welcomes new government plans to establish quality standards for services for people with long-term neurological conditions, but is calling 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. It is not acceptable that epilepsy-related deaths in 39 per cent of adults and in 59 per cent of children are potentially or probably avoidable. Only 52 per cent of patients achieve seizure freedom when around 70 per cent could be seizure free with appropriate management. This equates to around 80 thousand patients or approximately two per general practitioner’s list.
The single biggest stumbling block to better service provision is the access to specialist care.
We welcome 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. We 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, we are concerned that it is difficult to see how the NSF will bring about real change.
Recent research shows an average waiting time of eight to ten weeks from the first GP appointment to the first specialist appointment, and average waiting times for diagnostic tests of between five weeks (for an EEG) and 24 weeks for an MRI. The recent National Institute for Health and 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.
With these long waits for diagnostic tests and referrals from GP to specialist, patients are being put at risk; some are not being referred at all or are being lost between primary and secondary care.
NICE also states that misdiagnosis rates for epilepsy in the UK are between 20 and 31 per cent, underlining the importance of access to epilepsy specialists.
What are the solutions?
We want the government to ensure the following:
In the short term (next two years)
- A national plan to increase the number of epilepsy specialist nurses from 140 to 600 across all epilepsy disciplines (adult, paediatric, learning difficulties).
- A clear and comprehensive personal care plan (as recommended by NICE) that is shared by the specialist and GP.
- A national plan of epilepsy training for GPs, accident and emergency doctors and other general paediatricians and clinicians to increase their epilepsy knowledge base to the appropriate level required for them fulfil their respective roles.
- All GPs to actively identify the two patients with epilepsy within their practice who are currently experiencing seizures but who could, with optimal treatment, be seizure free, and to ensure they are appropriately referred to specialists for a more thorough review.
In the medium term (next five to ten years)
We are calling for the government to immediately put in place a programme to increase the number of adult neurologists from 352 to 1,400; paediatric neurologists from 75 to 150; learning disability specialists from 340 to 500; and neuroradiologists from 110 to 160, all within five to ten years.
Implementation requires funding
We recognise that this will require serious investment – as much as £150 million per year, equivalent to only £340 per person with epilepsy. We want the government to commit to this investment. Investment now will help address years of under investment, as money spent on increasing numbers of qualified health care professionals, diagnostic equipment and improving education will reduce the costs of misdiagnosis, both direct and indirect costs, not to mention improve the lives of people with epilepsy.
The Joint Epilepsy Council, in its recently published manifesto for epilepsy, has shown how improvements in epilepsy care could realise savings estimated at £160 million per year, the annual cost of epilepsy misdiagnosis based on figures from the National Institute for Clinical Excellence, and £66 million per year through reduced cost of Disability Living Allowance for people with epilepsy. Together this is more than enough to fund the improvements being called for.
Epilepsy Action is also a member of the Partnership for Long-Term Conditions, a group of 22 organisations, which has recently published 17 Million Reasons - a manifesto calling for a change in the way that services are delivered to meet the changing needs of those who use them.