Part of Culture, Media and Sport Committee – in the House of Commons at 4:41 pm on 26th February 2015.

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Photo of Andrew Gwynne Andrew Gwynne Shadow Minister (Health) 4:41 pm, 26th February 2015

I, too, congratulate Laura Sandys on securing this debate. I pay tribute to her outstanding work to advance the cause of those who suffer from epilepsy. She will certainly be missed from this place.

There have been 11 Back-Bench contributions to this debate. I thank my hon. Friends the Members for Vauxhall (Kate Hoey), for Erith and Thamesmead (Teresa Pearce) and for Walsall South (Valerie Vaz), my right hon. Friend Mr Howarth, my hon. Friend Grahame M. Morris, Mrs Gillan and the hon. Members for Wycombe (Steve Baker), for Leeds North West (Greg Mulholland), for Southend West (Sir David Amess) and for Cheltenham (Martin Horwood) for their considered contributions.

Advocates such as the hon. Member for South Thanet and the others who have spoken today are crucial because of the stigma around epilepsy, which is almost unique. Epilepsy is portrayed on television as somebody falling to the ground and foaming at the mouth, as we have heard in this debate, with the treatment invariably involving an ambulance with flashing blue lights. Somebody with epilepsy may suffer a seizure only once or twice a year, if that, but will live with the stigma of epilepsy all year round. Sufferers would probably prefer to focus on talking and on tackling the stigma.

I find appalling and completely discriminatory the case that was raised by my hon. Friends the Members for Vauxhall and for Easington of the Transport for

London employee who was sacked. I hope that action can be taken to rectify that situation.

I, too, looked online at Epilepsy Action’s very useful tool. I found that my local clinical commissioning groups, Tameside and Glossop CCG and Stockport CCG, had not produced a written needs assessment for people with epilepsy, or appointed a clinical lead for epilepsy to take charge. That point was made eloquently by my hon. Friend the Member for Walsall South, the hon. Member for Southend West and others. I ask the Minister to consider how we can ensure that CCGs undertake adequate needs assessments of people with epilepsy. It is increasingly important that local plans are drawn up for local provision.

It is important to recognise that epilepsy care has moved from predominantly secondary care to being based more and more in primary care. That has positives and negatives. Clearly primary care is more accessible, and therefore easier to access on a regular basis, but on the other hand it is less specialist. Some professionals operating in primary care might not have the expertise needed to recognise things that would be significant to a specialist. Some things can be done only in secondary care, as we heard from the hon. Member for Wycombe.

I particularly want to press the Minister on the issue of brain surgery. It is estimated that about 5,000 adults could and should benefit from brain surgery, which is the only cure for epilepsy. To put that in context, only about 3,000 adults have that life-changing surgery each year, so there is clearly more that can be done. Are there any plans to direct NHS England to increase the number of operations undertaken, to produce an adult epilepsy service similar to the one that, to be fair, has been created for children’s epilepsy?

According to Epilepsy Action, there are about 30,000 accident and emergency attendances due to epilepsy each year. According to the national audit of seizure management in hospitals in 2014, 18,000 of those could be prevented by the implementation of a better care pathway for people with epilepsy. What is being done to ensure that all A and E departments have a clear referral pathway for patients presenting with a suspected seizure?

There is a clearly a welcome focus on research and development in policy terms. The 100,000 Genomes Project is a good example of the potential for genetics research to change lives. It would be nice to see the project encompass more specialist research into epilepsy, because genetics research could have an untold impact on epilepsy treatment.

A number of Members, most recently the hon. Member for Cheltenham, mentioned SUDEP. This week I, too, heard from the family of Emily Sumaria, who are in Westminster today. As we have heard, Emily died in her sleep while at university. She was bright and funny, with a lifetime ahead of her. Her epilepsy was to all intents and purposes under control, and she lived a relatively normal life. Emily was never told of the risk of sudden unexpected death in epilepsy, which primarily affects young people. The worst that she feared would happen if she had a seizure was that she would have her driving licence removed. Her mother is certain that if she had been told of the risk, she could have taken the necessary precautions and made the necessary adjustments to her lifestyle.

Emily was simply given a regular prescription, and basic mistakes in the moving of her medical records from her home GP practice to her new one at university resulted in her new doctor halving her dose without her knowledge. In preparing for the debate, I found that some medical schools do not include SUDEP in their curriculum in any great detail. It is asking a bit much for young people to research the risks of SUDEP and precautions against it, given that their doctors will themselves often not be fully aware of the details. I suspect that the inclusion of SUDEP, epilepsy deaths and epilepsy risks in the programme at medical schools would help to change that. Perhaps the Minister will give his thoughts on whether that could be brought to the attention of medical schools.

The Opposition have said that we will give every patient full ownership of their medical data; they would be able to share the data with whichever organisations they saw fit. We hope that with more people taking control of their data, we will be able to establish more data-driven research projects. I doubt that a patient suffering from epilepsy would object to their data being used to develop a cure, but the point is that they would have to give consent for the data to be used in that manner. Data would be more free and research would be immeasurably improved, but the final say would go to the patient.

Let me finish on a positive note, because I am optimistic about the future. Epilepsy research is going from strength to strength, and we are making improvements in treatment, with pharmaceuticals and surgery providing hopeful prospects of a cure. I looked at the NHS Choices website before this debate, and 17 clinical trials are recruiting now in the UK with the aim of advancing our knowledge about the condition. I thank hon. Members who have contributed to the debate, especially the hon. Member for South Thanet whom I wish well for the future.