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Epilepsy Services

My hon. Friend is absolutely right—there are important and serious issues concerning the coroner service. I know that he welcomes, as do I, the draft Coroners Bill, which allows for a proper full-time professional service. That will make a great difference to any family dealing with a sudden or suspicious death. My hon. Friend is also right to refer to families, because another issue that needs to be addressed is the non-implementation of NICE guidelines for health professionals on communicating essential information about SUDEP and referring families affected by it to SUDEP support services. The NICE clinical guidelines note that all adults and children with a recent onset suspected seizure should be seen by a specialist within two weeks. Generally, such specialists are adult or paediatric neurologists, but they also include neuropsychiatrists, learning disability or other specialists, and occasionally even general practitioners. An epilepsy services survey this year by Epilepsy Action suggested that only 14 per cent. of people with a recent onset suspected seizure who were referred to a specialist saw one within two weeks. Access to specialist neurologists is too limited, and a postcode lottery applies to access to neurological services. England still has one of the lowest numbers of neurologists of any European country. The Royal College of Physicians has called for a target of 909 whole-time equivalents in the UK by 2012. In addition, the Joint Epilepsy Council believes that GPs with a special interest in epilepsy are key in delivering services closer to patients’ homes and are a vital link between primary and secondary care. It is clear that such professionals, who are easier for patients to access and do not have long waiting lists, can play an important role, specifically in making accurate diagnoses and performing effective annual reviews, as recommended in the NICE guidelines. Epilepsy specialist nurses are also a crucial source of care, support and advice for patients with epilepsy. They enable many to manage their epilepsy effectively and remain independent in the community. Their vital role has often been recognised by the Government, including in recent NICE clinical guidance on the diagnosis and management of epilepsy, which stated:"““Epilepsy specialist nurses should be an integral part of the network of care of individuals with epilepsy.””" However, despite the chronic shortage of ESNs in Britain, recent reports suggest that the current work force is under threat. The JEC feels that it is now being forced to defend the status quo, rather than focusing on expanding the excellent services that ESNs provide. I hope that the Minister will clarify the position. There are approximately 152 ESNs in England, and epilepsy organisations have long campaigned to increase that number to about 920. Epilepsy Action also recommends that ESNs have a case load of no more than 250 patients with active epilepsy. However, the Government have made it clear that decisions affecting ESN services are made by local health trusts, and that they cannot intervene. The JEC believes that they should do more to prevent local health trusts from seeing ESNs as soft targets when seeking to balance budgets. I welcome the recent dialogue on specialist nursing between voluntary organisations and the then Minister with responsibility for long-term conditions, my hon. Friend the Member for Bury, South (Mr. Lewis). I look forward to the draft guidance on specialist nurses that will be published in early 2008. Ready access to high-quality, responsive primary and secondary care is crucial for those with epilepsy and would meet the needs of most. However, only 52 per cent. of people with epilepsy have their seizures successfully controlled. The 48 per cent. with seizures not controlled by anti-epileptic drugs should be referred to tertiary care clinics. Unfortunately, there is some indication that it is usually well-educated, assertive and articulate individuals and families who succeed in gaining access to tertiary services. There is concern that many with epilepsy who are less articulate are dissuaded or refused, or give up the struggle with the system, and are therefore denied the opportunity for optimal advice and care. Between 2002 and 2006, the Government published five reports on the provision of epilepsy care—including the 2002 chief medical officer’s report—along with the 2002 national sentinel audit of epilepsy-related death, the 2003 action plan for epilepsy, the 2004 NICE clinical guidelines on epilepsy, the 2005 national service framework on long-term neurological conditions, and the 2006 White Paper ““Our Health, Our Care, Our Say””. All drew much the same conclusions about fragmented and poorly co-ordinated service provision, but provision of services in England for people with epilepsy has not substantially improved over the years. However, the all-party group recognises that the Department of Health has taken initiatives regarding the care of people with epilepsy. The NICE guidelines were described as groundbreaking in setting standards. However, their effective implementation and that of the action plan remain in question. The all-party group believes that lack of funding is a significant reason for the serious gaps in service provision for people with epilepsy. Funding for epilepsy is low compared with funding for other conditions affecting similar numbers of people, such as insulin-dependent diabetes. Funding must be urgently rethought to address the gap in service provision.