Epilepsy Services

Owen Smith Excerpts

Tuesday 12th October 2010 Westminster Hall

[Owen Smith (Pontypridd) (Lab)]

I thank the hon. Member for Blackpool North and Cleveleys (Paul Maynard) for securing this debate, and for speaking so eloquently and passionately. I do not hope to speak with his expertise, but I do have some expertise, inasmuch as I have a close family member—a brother—who has suffered with epilepsy over the past 15 years. I have some insight into the nature of the difficulties that he has encountered, the problems in the current NHS system, and the issues that emerge in dealing with this chronic but particular condition in that system.

My brother is one of the 500,000 people in this country who have epilepsy. They are a minority, but a significant one—that is a lot of people. He is also one of the 50% of the 500,000 who are not seizure free: he has had a seizure every month, if not every week, for all of the past 15 years. That has had a dramatic impact on his life in terms of what work he is able to do, the energy he has, and the fear that he lives with, which the hon. Gentleman described so eloquently and which all people who have epilepsy have to contend with on a daily basis, of sudden unexplained death as a result of the condition.

That is my interest. It has given me an insight into issues that have already been raised today about the postcode provision, to use the vernacular, that exists across the NHS. We have a fragmented NHS, particularly in respect of epilepsy. That is the case for many other conditions, but it is particularly true for epilepsy. The phrase “Cinderella condition” is rather overused in the press these days, but epilepsy is one of those conditions. We can genuinely say that it does not have the high profile that it ought to have and therefore does not receive the concentration that it should.

There is clearly fragmented, unequal distribution of expertise in the NHS in terms of general practitioners, who, as the first point of call for anyone suffering with epilepsy, are critical, and nurse specialists. I believe that that is widely recognised. Like the previous Government, the current Government recognise that specialist nursing for epilepsy is under-resourced in this country and, equally, that it is an extremely important means of redressing the problem of insufficient provision of expert GPs.

It is clear that there are few centres of excellence for epilepsy in this country, and, therefore, that people such as my brother, who lives in Wales, have to travel long distances to hospitals or other centres of excellence for prolonged examinations to monitor brain patterns. He, too, suffers from nocturnal epilepsy, and therefore needs to be studied in clinical conditions in hospital to try to determine the nature of his condition and what resources might be brought to bear to alleviate it.

I, too, have some fears about the extent to which the creation of the new GP consortiums will exacerbate the problem of fragmentation and inequality of provision across the country. I can accept that, in areas where there are GPs with a special interest or particularly strong centres of excellence, there may be a beneficial effect in massing GPs together and spreading their expertise through a wider network. Equally, I can see significant potential for unintended dangers if we do not have GPs in those consortiums and we have a diminution of control over, and certainly insight into, their activities. It is unclear what the sources of commissioning will be, and who exactly will be commissioning specialist services. That has yet to be clarified, and I look forward to the Minister’s giving us some greater insight into that.

Another thing that I worry about in respect of consortiums is data. We have poor data on epilepsy: how many people suffer, the nature of their condition, how often they attend hospital, how often they are treated for acute episodes. Perhaps if their condition had been managed more effectively, it would not have reached that point. I have tabled numerous parliamentary questions about that recently, and all the answers confirm that we do not gather enough data.

There will be a further danger that we will not gather data if we fragment the NHS to the extent that is proposed with the creation of the consortiums. I hope that the Minister will give us some reassurance that information gathering will be a priority, whatever the structural make-up of the NHS, and that we will continue to see that critical piece of the jigsaw applied in respect of epilepsy care. In recent years, we have seen data gathering become an important tool for tackling other chronic conditions, notably cancer.

I worked in bioscience before coming to this House, and therefore have some insight into the science around epilepsy and the economics around the production of medicines. Prescribing of epilepsy medicines seems to involve a form of Russian roulette because our understanding of this neurological condition is deeply imperfect. For example, my brother has been through 11 or 12 medicines and combinations of medicines. Doctors still employ what is pretty much a hit and hope strategy. Perhaps I am being slightly unfair, but I believe that many epilepsy experts recognise that they do not really know which medicine will work, and therefore they try various drugs until they find the one that works for their patient. In my brother’s case, and in the case of 50% of sufferers, they often do not find the one that works, and we get into the more complicated issues around whether surgery is required.

Generic substitution is clearly an issue. We all understand that we need to make savings, and the importance of substituting generic medicines for the original brands when they are available.

[Dr Pugh]

The hon. Gentleman made a good point about data, which is worth repeating. However, there must be data on every episode dealt with through acute hospital care. His Government introduced the tariff system. Therefore, in some shape or form, the data are there—they just do not appear to be available for clinical purposes.

[Owen Smith]

The hon. Gentleman is absolutely right, and I have recently had answers from the Government about that. It is not simply a question of gathering the data. The NHS is a wonderful sponge, soaking up data. The critical thing is wringing it out and employing data to improve services. Epilepsy is a condition that has not been concentrated on, and therefore there is no emphasis on garnering data.

We must be careful about generic substitution of epilepsy drugs. I know that many sufferers agree with that. Another point is that genericisation of a market in medicines leads to changes in the economic incentives for research and development companies to produce them. There clearly are not incentives for companies to produce new epilepsy drugs. That is inevitable because of the large number of epilepsy medicines, many of which are effective, and many of which have been genericised.

Part of the answer in fixing markets that are not working has to be Government intervention to try to improve incentives. The previous Government were making effective inroads through the innovation fund and the innovation pass that they were negotiating with the pharmaceutical and biotechnology industries, which would have encouraged and incentivised further R and D into more recondite diseases and the production of medicines where there is not an immediate economic incentive.

I was therefore discouraged to hear that the innovation pass is being abandoned by the Government—it will not be taken forward. I would like to hear some reassurance from the Minister that he is aware of the issue and interested in looking at how he can work with the pharmaceutical industry to incentivise further R and D into those areas where this country does not perform well. Epilepsy is one of them. We have a higher incidence of unnecessary death from epilepsy, and, bluntly, we do not prescribe terribly well for it. It is an area where we could produce more and take advantage of the great skills in the pharmaceutical industry, and where the Government could have a positive impact.