Epilepsy

Debate between Valerie Vaz and Baroness Hoey

Tuesday 29th January 2013 Commons Chamber

[Kate Hoey]

Although things may have improved, the position in education authorities across the country is patchy. I hope that the Minister might refer to that in his speech.

I am pleased that my hon. Friend the Member for Walsall South, who introduced a ten-minute rule Bill on this matter, is now in her place. I know that she will want to say something at some stage.

I referred to the Epilepsy Action report, and it is important that people look at it because it showed some worrying results. I am sure that the Minister will have read it. Two thirds of the clinical commissioning groups—66%—do not have or do not intend to produce a written needs assessment of the health and social care needs of people with epilepsy. Only 27% of the 113 out of 149 local authorities that replied included a section in their joint strategic needs assessment mentioning the care of people with epilepsy. Only 17% of the clinical commissioning groups have appointed a clinical lead for epilepsy and only 20% of acute trusts stated that the average waiting time for an adult with suspected epilepsy to see an epilepsy specialist consultant was two weeks or less.

Crucially, only half of the people interviewed by Epilepsy Action told the interviewer that they had seen an epilepsy specialist nurse. I cannot overestimate the importance of specialist epilepsy nurses, and I am sure that other hon. Members will agree. Specialist nurses are vital and there is still concern that there are not enough of them. In its guidance, the National Institute for Health and Clinical Excellence said that they should be an integral part of the medical team providing care to people with epilepsy, but it seems that in 2013 half of our acute trusts and primary care trusts in England still do not have that provision.

The report contains many more worrying statistics, but I shall not go through them all. All in all, however, there seems to have been no major improvement in services although I stress that, as with so many other matters, the provision is patchy, with some excellent services in some parts of the country. My local trust, Guy’s and St Thomas’, does an excellent job with the resources it has. Dr Michael Koutroumanidis leads the team and as well as running the tertiary clinic runs a first-time seizure clinic once a week. Much more could be done, however, with more resources and if greater priority were given to those services.

I have some questions for the Minister. If he has read the report, perhaps as his bedtime reading last night, he will be aware of some of them. Will he ask the Secretary of State for Health to refer the whole of epilepsy services to the National Audit Office and invite it to conduct a value-for-money inquiry? That is one of the key requests from Epilepsy Action. Way back in 2007, the all-party group estimated that the avoidable cost of providing the current poor NHS service was £189 million a year based on the NICE figures. The main reason that such money could be seen as wasted is the shocking misdiagnosis rate, which is 20% to 30%, and the poor access to specialist skills. The financial consequence is that patients receive inappropriate, costly and ineffective treatment at the expense of the NHS and the public, never mind the personal consequences of their true condition not being treated. I hope that the Minister can say that that might be a useful piece of work for the Audit Commission.

I ask the Minister to ask the NHS Commissioning Board to include outcomes indicators in the NHS framework. I hope that people can get to the bottom of what all these terminologies mean. The hon. Member for Beckenham (Bob Stewart) has previously referred to the NHS using terms that mean little to the average member of the public, but it is important that we have the statistics to address the unacceptable number of avoidable deaths and the still unacceptable rates of seizure freedom.

Another issue that I want to ask the Minister about is the revised NHS constitution, where the word “pledge” will be used. We want to give people the right to involvement in discussions about the planning of their care and the right, as opposed to a pledge, to be offered a written record of that agreement. Again, published research shows that only 14% of people with epilepsy have a care plan. All those things are important. If the current review of the NHS constitution recommends making care planning a pledge from the NHS to patients, that should be toughened up to encourage a programme of care planning and by making it a right for people.

The Minister could ensure that as a matter of urgency the chief executive of the NHS raises the lack of engagement by the clinical commissioning groups in assessing the needs of people with epilepsy. It seems that that has been ignored by many of them, or lumped together with a number of other health issues that do not necessarily cover epilepsy’s particularly special nature.

There is a whole debate to be had about children with epilepsy, and not just in relation to their school education. There is a long history of children with epilepsy not achieving their full educational potential, yet with the right support there can be huge improvements. Epilepsy can affect the child’s education either because of the underlying cause or because they might have to miss lessons or interrupt them to take medication.

[Valerie Vaz (Walsall South) (Lab)]

I thank my hon. Friend for securing this debate, and I congratulate Epilepsy Action on producing the report. This is a wonderful opportunity to remind the Minister of my ten-minute rule Bill, in which I ask for two simple things. First, immediate referrals from GPs to specialists are needed. That is where the costs arise—both monetary costs and the cost in lives. If people can be referred directly to a specialist, they need not go through an interim stage to someone who is not a specialist. This covers a wide range of conditions, although it manifests itself as epilepsy—other related conditions might not manifest themselves at all—so anyone might have absences, and they need to know why. Secondly, we need an action plan for children in schools that is similar to that under the Autism Act 2009.