Provision of Epilepsy Services

Lord Patel Excerpts

Tuesday 30th November 2010 Lords Chamber

[Lord Patel]

My Lords, it is a privilege to take part in this debate. I thank the noble Baroness, Lady Ford, for initiating it even though the time is now late. Epilepsy is defined as a tendency to have recurrent seizures, commonly known as fits, caused by a sudden burst of excess electrical activity in the brain causing a temporary disruption to the normal messages passing between brain cells. As has already been mentioned, it affects about one person in 130 in the United Kingdom. If the quality of the services provided to people with epilepsy were measured on the basis of outcomes—that is, measured by appropriate diagnosis, appropriate and timely treatment, the education of the patient and carers, and avoidable deaths—the services currently provided would be regarded as a total failure. The cost of this poor care is estimated at £190 million per year. Health outcomes for people with epilepsy are poor.

I shall confine my comments to the care of children and young people with epilepsy and the care of mothers with epilepsy during pregnancy. As an obstetrician I have looked after many women whose pregnancies were complicated by epilepsy. Epilepsy is the most common neurological condition among children and young people, affecting around one in every 200 in the population; that is, approximately 60,000 young people in total in the UK. On average, there is one child with epilepsy in every primary school and five in every secondary school. Although the national numbers can be calculated, local and regional numbers are not. For example, a recent Epilepsy Action survey found that only 18 per cent of primary care trusts could even estimate how many children and young people in their area had the condition, making it very difficult for them to plan appropriate services for this important group.

As has already been mentioned, formal clinical guidelines from the National Institute for Health and Clinical Excellence exist, but they are not implemented in many areas. This means that children who have had seizures are typically referred to general paediatricians rather than paediatricians with training and expertise in epilepsy. From the very beginning, that makes the outcome for these children poorer. Misdiagnosis is an issue. Up to 40 per cent of children referred to a specialist clinic do not have epilepsy when fully assessed. As the noble Baroness, Lady Ford, has said, this compares with 20 per cent to 30 per cent misdiagnosis in adults.

Children and young people with epilepsy have a poorer quality of life than children with other long-term conditions, such as asthma and diabetes. There are 365 avoidable deaths per year of children and young people with epilepsy. Sixty per cent of children and young people with epilepsy have complications. Too few children are offered, or referred early enough for, the surgery which could cure their epilepsy or reduce their seizures.

A campaign conducted by the National Centre for Young People with Epilepsy suggests 10 “levers” which would improve services for children with epilepsy. NHS commissioners should know: the number of children and young people with epilepsy in their area; the level of resources they have in place to support these children and young people; the waiting times faced by children and young people with epilepsy for initial appointments, diagnosis, treatment and tertiary assessment; and the current perceptions of children, young people and their parents of the epilepsy services. NHS commissioners must adopt: one or more care pathways for children and young people with epilepsy, ensuring that they are seen by paediatricians with training and expertise in epilepsy; and an easy to use and efficient process for referring children and young people to specialist epilepsy services. NHS commissioners must ensure: that every child or young person with epilepsy is offered a care plan, and that there is a high adoption rate; and that every child or young person with epilepsy has their case reviewed at least once a year by a health professional with expertise and training in the epilepsies. There is very good evidence that, if diseases and chronic conditions in children are managed well, followed up regularly and assessed for outcomes regularly, their outcome is optimal. Children and young people should have easy access to high-quality, multidisciplinary services, such as speech and language therapy, and psychology.

As has already been mentioned, a survey of trust services provided showed that more than 90 per cent of trusts were failing to meet the two-week deadline for a specialist appointment. Most trusts do not employ a neurologist with a specialist interest in epilepsy. More than 50 per cent of trusts do not employ a single epilepsy specialist nurse, who, as has been said, can make a lot of difference in the care of these children.

I turn to the care of women with epilepsy, which the noble Baroness, Lady Ford, summarised extremely well. The risk of a mother with epilepsy dying in pregnancy is nine to 10 times higher than in those mothers who do not have epilepsy. As the noble Baroness mentioned, nearly 5,000 women with epilepsy become pregnant each year, but a survey found that only 20 per cent receive optimum care. That includes care from an obstetrician and pre-pregnancy counselling. Such counselling is extremely important for these women because it makes the difference in housing an uncomplicated pregnancy and delivering a baby with less risk of complications developing. It is important that their drugs are changed to those that pose less risk to the foetus. These women are often on risky drugs, one of which, as has already been mentioned, is sodium valproate.

Care from an obstetrician with a specialist interest in looking after women with epilepsy working together with a physician with an interest in epilepsy in pregnancy is extremely important. However, this is currently not available to 80 per cent of women with epilepsy in pregnancy. It is not surprising therefore that their risk of maternal death and complications such as spina bifida in the foetus is so high. Failure to provide appropriate care in terms of the right drugs administered at the right dosages, as well as close monitoring of drug levels, adjuvant therapy with folic acid and other treatments increases the risk of maternal complications and death, foetal abnormalities and so on.

My questions for the Minister are simple. Why are trusts not adopting the NICE guidelines and why are so few performing to the standard of the guidelines when they are assessed? What will the Government do to make trusts adhere to these guidelines?