Health: Neurological Services

Lord Patel Excerpts

Tuesday 20th November 2012 Lords Chamber

[Lord Patel]

My Lords, I am pleased to take part in this debate initiated by the noble Baroness, Lady Ford. She should be congratulated; I think that every patient with epilepsy would wish to congratulate her on her perseverance in ensuring that she holds the Government to account on services for patients with epilepsy.

As the noble Baroness, Lady Ford, mentioned, we had a similar debate more than two years ago, so the Minister is in a good position to have prepared her answers. The Question for Short Debate today is:

“To ask Her Majesty’s Government what progress has been made in improving neurological services, and in particular the provision of epilepsy services, in the United Kingdom”.

The last time we had this debate, the Minister ran out of time. It was late at night and she was unable to answer all the questions. I have adopted a different tack today: I shall put the same questions to her again. No doubt her assistants have read the Hansard of the debate then and they have had two years to try to address the issue of poor-quality care for patients with epilepsy. To remind her of what was said, I shall pose the same questions again.

To give some background, if the quality of services provided for people with epilepsy were measured on the basis of outcomes—that is, measured by appropriate diagnosis, appropriate and timely treatment, the education of patients and carers and avoidable deaths—the service currently provided would be regarded as a total failure. The Minister may contradict me by citing hard facts—not processes, because it is easy to say that progress is made by citing processes, such as that the Government have asked NICE to develop quality standards. That is good, but, as the noble Lord, Lord MacKenzie, said, quality standards will take some time to produce, be implemented and be audited, only to find that there has been no change. She may suggest that the mandate given to the commissioning board has within it a mandate to improve services related to neurological conditions but that, again, is a process.

I shall confine my comments to the care of children and young people with epilepsy. Epilepsy is the most common neurological condition among children and young people, affecting about one in every 200 of the population; that is, approximately 60,000 young people in total in the UK. On average, there is one child with severe epilepsy in every primary school and five in every secondary school.

Although those national numbers can be calculated, local and regional numbers are not available. If those numbers are not available, how are the commissioning groups to commission services for those children? Clinical guidelines from the National Institute for Health and Clinical Excellence exist, but they are not implemented in many areas. Where they are implemented, it is patchy. That 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 outcomes for those children poorer. Misdiagnosis is an issue. Up to 40% of children referred to a specialist clinic are not fully assessed as having epilepsy. If a child is branded as having epilepsy, they carry that diagnosis and treatment for life, so the outcome for those not fully assessed is worse than if they had been assessed as having epilepsy.

About 365 avoidable deaths occur per year of children with epilepsy. The Minister may correct me and tell me what progress has been made, because that is the number that I cited two years ago. If there is progress, that number should have come down—I know the real number, by the way. I look forward to hearing that.

I come to the five questions that I raised. They related to the campaign conducted by the National Centre for Young People with Epilepsy, which suggested 10 levers that could improve services for children with epilepsy—so two and a half years ago there was already help for the Government to have some idea of how to improve services. They were that NHS commissioners should know the number of children and young people with epilepsy in their area; the level of resources that 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 epilepsy services. They also include the need for NHS commissioners to adopt one or more care pathways for children and young people with epilepsy; the need to ensure that they are seen by paediatricians with training and expertise in epilepsy; an easy-to-use and efficient process for referring children and young people to specialist epilepsy services; the need to ensure that every child or young person with epilepsy is offered a care plan; and the need for children or young adults with epilepsy to have their case reviewed at least once a year by a health professional with expertise and training in the epilepsies.

Those levers were based on National Institute for Health and Clinical Excellence guidelines and were therefore mandatory, so it ought to be easy to measure the progress against those indicators. I very much look forward to the Minister answering this time, because she will not run out of time today.