Epilepsy

Part of Culture, Media and Sport Committee – in the House of Commons at 3:32 pm on 26th February 2015.

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Photo of Dame Cheryl Gillan Dame Cheryl Gillan Conservative, Chesham and Amersham 3:32 pm, 26th February 2015

That is absolutely right—it is a national centre.

Under our new chair, Helen Pernelet, and the new chief executive, Angela Geer, the Epilepsy Society has an ambitious new vision to leverage its medical research strength to revolutionise how epilepsy is diagnosed and treated. Of course, there are issues facing the society’s specialised medical and research facilities, but sadly, with only eight minutes in which to speak, I might not get through them all. For the Minister, there are co-commissioning concerns. Under the Health and Social Care Act 2012, the responsibility and budget for specialised services were brought together in NHS England as the sole national commissioner of specialised services, but since May 2014, it has U-turned on national commissioning. Instead, the new proposals for co-commissioning would see responsibility for the vast majority of specialised services shared with local clinical commissioning groups.

The Epilepsy Society is opposed to the co-commissioning of specialised epilepsy services for several reasons. NHS England asserts that national service specifications will continue to apply to co-commissioned specialised services, but it is uncertain how that will be achieved, given that CCGs are independent bodies. If CCGs are allowed to reinvest savings from specialised commissioning in other areas of their budget, it might create an incentive to underspend on specialised services, raising questions about the level of investment. There is also evidence that CCGs are not in a position to engage with specialised commissioning in areas such as neurology. For example, the Minister will know that the Neurological Alliance’s recent report, “The Invisible Patients”, found that only 26% of CCGs had assessed the prevalence of neurological conditions locally and that only 14% had assessed the cost of neurological services.

I also wish to highlight the Epilepsy Society’s opposition in principle to the introduction of a marginal rate in specialised commissioning and its concern about the lack of clarity in neuroscience specification. There is an ongoing lack of clarity over the division of responsibility between NHS England and CCGs for commissioning neurological services, and there is continued confusion about precisely which services fall under the scope of specialised commissioning arising from inconsistent statements in the manual for prescribed specialised services and the neurosciences service specification. I hope that the Minister can respond to the society’s calling on NHS England to clarify this important service specification to ensure nationally applied standards for specialised epilepsy services.

I encourage the Minister to improve access to the Government’s flagship 100,000 Genomes Project. It is an exciting development that the Epilepsy Society strongly supports, but the project’s focus is largely on cancer and rare diseases, making it unlikely that more than a handful of epilepsy genomes will be sequenced as part of the groundbreaking initiative, despite the huge potential that genome sequencing has for transforming epilepsy. I would like to see the Government continue to invest in genetics research and its translation into clinical practice and to ensure that it benefits patients with epilepsy, but I would particularly like to see the genome project embrace epilepsy.

The need to reform the current system for accessing effective medicines will become ever more important in the context of increasing the availability of personalised medicines. I have been working locally with Daiichi Sankyo on patient access to novel oral anticoagulants, and there is a gap that the Department of Health needs to address across the board.

In my remaining minutes, I would like to draw attention to the issue of laser ablation surgery. I have recently dealt with a distressing case of a constituent who sadly lost a family member to epilepsy. The constituent expressed great distress that a surgical treatment known as laser ablation therapy had not been made available to her and her child as a treatment option. Laser ablation is a relatively new surgical technique that burns away accurately targeted tissue with a surgical laser. The technique is much less invasive than traditional brain surgery, and enables surgeons to operate deeper in the brain. It is also much more accurate and carries fewer risks of complication. Laser ablation can be a good choice for patients who have few other treatment options either because medication does not control their seizures or because the lesions in their brain that cause their epilepsy are deep and hard to reach using open brain surgery.

A significant minority of epilepsy patients—approximately 12,500 in the UK—would benefit from surgical treatment, including laser-guided surgery. In around 60% of these cases, surgery can be curative. Evidence shows that it also contributes to reducing premature mortality in epilepsy. Sadly, despite these benefits, only around 300 patients a year are currently given this treatment. I think that the Department of Health should urgently review the number of patients with access to neuro-surgery each year, particularly surgery that uses the new and less invasive techniques such as laser ablation.

Finally, I mentioned the connection with autism, to which my hon. Friend the Member for South Thanet responded during her opening speech. It is obvious that although we have made great strides on epilepsy since the days when epileptics were not allowed to marry, we still have a long way to go. I hope that the Minister will respond positively to the questions raised on both sides of the House about the future of epilepsy in the hands of the NHS.