Epilepsy Services

Paul Maynard Excerpts

Tuesday 12th October 2010 Westminster Hall

[Paul Maynard (Blackpool North and Cleveleys) (Con)]

It is a pleasure to serve under your chairmanship today, Mr Streeter. It is also a pleasure to see so many Members in Westminster Hall, which shows how important the topic is to so many people.

I am very pleased to have secured this debate at what is a crucial time for people with epilepsy—crucial because of the uncertainty about how the Government intend to deal with the condition in the future. We are going through a period of structural reform in the NHS, which I strongly believe will lead to substantial benefits for many patients, but there may well be a temptation during this period of reform for the Department of Health to concentrate more on structural reform than on individual conditions such as epilepsy. I want to use this debate to try to explain to the Minister why he should focus on particular chronic conditions and not just on the bigger picture of structural reform. In particular, I want to explain why I think that epilepsy is quite different from many other chronic conditions.

I have epilepsy myself, as well as another chronic condition, cerebral palsy. The cerebral palsy is part of my life, day in and day out; it never goes away, it is always there and I know that it is there. Epilepsy is qualitatively different. I often liken it to a thief in the night, because it creeps up unexpectedly. I have nocturnal epilepsy, so epilepsy affects me when I fall asleep and the chemicals in my brain do whatever they do such that a fit occurs. In my case, fits are triggered by alcohol, so I now have to avoid alcohol continually everywhere I go.

What is important to stress, and what many people without epilepsy may not realise, is the fear that accompanies epilepsy. I do not fear my cerebral palsy, because it is predictable; I know that it is there and I know what is occurring as a result of it. With the epilepsy, however, when I wake up the morning after a fit, I do not know who I am, or even necessarily where I am. My short-term memory has gone and I cannot quite put together what I did the day before, including where I was. Even now, when I have a fit I am not really sure where I am in the country and I fear what has happened to me overnight. Have I soiled myself? Is there a mess on the floor? Will I have to call for help and have to deal with the embarrassment that that might cause? It is therefore very important to stress to those who do not have epilepsy the fear that accompanies a fit, or rather the fear that accompanies the aftermath of a fit. It is not the fit itself that is the unpleasant experience for those of us with epilepsy, because we do not experience it; we are not there during a fit. It is the aftermath—dealing with the consequences of a fit—that is often the problem.

For many people with nocturnal epilepsy, perhaps the biggest fear is something called SUDEP. Those without much familiarity of epilepsy may not be aware of SUDEP, but it stands for sudden unexpected death in epilepsy. Almost 1,000 people die from epilepsy every year, many of them in the younger age groups, and two thirds of those deaths are avoidable. As I say, SUDEP particularly affects young people, yet one survey by Epilepsy Action found that 33% of primary care trusts lack a transition plan for the transition of individuals from childhood to adult care. I think that such a plan is vital, because when an individual moves from childhood to adult care, that is their period of greatest vulnerability. Many of the tragic cases that I have received letters about—I know that many other Members here today have also received such letters—involve young people who one minute were living a happy, normal life, and then suddenly one night they went to sleep and did not wake up. To me, such cases are great tragedies. A focus on the provision of better-quality data on children’s epilepsy and transition care is needed, to see whether we can prevent such cases from occurring. If we could only match the median death rate for the 15 original EU member states, for example, we would prevent a quarter of the current deaths from SUDEP in Britain. If that number of deaths was caused by a single transport accident, we would have a public inquiry tomorrow. These days, calling for a public inquiry has become something of a cliché, but I am talking about a substantial number of deaths, and I believe that we can make progress in reducing it.

The issue is not only the human cost, but the financial cost. In particular, I want to focus on misdiagnosis. Epilepsy Action says that between 20% and 30% of cases of epilepsy are misdiagnosed, at a cost of £140 million to the NHS. I know from personal experience that misdiagnosis happens. When I first started having fits at night, when I moved down to London in my early 20s, I did not really know what was happening to me. I just thought that I was falling out of bed, but there was blood everywhere and I could not quite put two and two together. One evening, I threw myself out of bed sufficiently hard that I banged my head against my bedside table and had quite a deep cut between my eyebrow and one eye, missing taking my eye out by the narrowest of margins. My next door neighbour said, “I really think that you ought to go and get that seen to.” I did not want to get it seen to, because I could not really explain to the nurse what had happened. Nevertheless, I pootled down to the hospital, where the attitude of the nurse was to say, “You’ve been drinking, haven’t you?” To my mind, that is a classic example of misdiagnosis. A chance to diagnose me with epilepsy and to start me on a treatment plan was missed because there was a presumption that I had been drinking and that the cut I had suffered was caused by drunkenness.

Misdiagnosis affects the treatment of epilepsy at every stage of the process. Apparently, some 74,000 people who are diagnosed with epilepsy do not actually have it. Not only does that misdiagnosis have a cost in terms of the cost of the drugs that those people are put on, but it has a human cost in terms of the stigma that those people feel that they have to bear and the worry that they face in their daily lives. If they could only be diagnosed with what they actually have, rather than with what they do not have, that would improve their lives.

There are also 69,000 people who have the wrong type of epilepsy diagnosed. I have gone into quite some detail about the type of epileptic fits that I have. I gather that there are some 40 varieties of epileptic fit that can affect an individual and they all require slightly different treatments, so it is important that people are given the right diagnosis. That is why specialisms matter. Epilepsy is special and I want the Minister to regard it as a special type of chronic condition. That is not to say that other chronic conditions do not matter or are unimportant, but epilepsy is quite different from many other chronic conditions and it needs to be treated in a special way.

That special treatment means having special GPs to deal with epilepsy. I was fortunate that, when I was first diagnosed with epilepsy, I had a GP who was interested in the condition. When I moved house, my next GP was not quite so interested in epilepsy, so the nature and quality of my treatment and care changed. With the formation of local commissioning groups, I hope that we will have the opportunity for GPs to develop those specialisms and to build on those interests, not just in the treatment of epilepsy but in the treatment of the other special conditions that people regularly go to their GP about. I think that local commissioning groups offer an opportunity to advance that agenda and I urge the Minister to explain to us how he thinks the groups can help GPs to develop those specialisms.

It is worth highlighting a report by the all-party group on epilepsy back in 2007—three years ago now—which contained a fantastic quote from Dr Hannah Cock, a senior lecturer at St George’s hospital, who said

“Unless patients with long-term epilepsy at general practice level are in crisis, they do not get referred.”

That is a very important point. People should not have to wait for a crisis to occur before they get the treatment that they most need. I know that President Obama’s recently retired chief of staff is known for saying, “Never let a good crisis go to waste,” but when it comes to epilepsy care, we do not want to get to that crisis point. We want to have consistency of care and that consistency of care is itself very important.

In particular, I want to raise the issue of generic substitution, which again might sound rather arcane to those who are not familiar with it. Like many other people, I take a regular dose of medicines and tablets. I go down to my pharmacy every six or eight weeks to pick up my new set of prescriptions. I have no problem with the idea of substituting generic medicines—it is important that we get value for money and effective medicine. What I am concerned about and what I ask the Minister for reassurance on is consistency of supply. Although the name on the packet might be the same, if the drug comes from a different manufacturer that uses a slightly different compound—if it is altered in ever so tiny a way—it can have a massive impact on how my brain reacts when various things occur in it that might lead to fits. Consistency of supply, not generic substitution itself, is my concern. I know that the Department has engaged in a consultation on the matter, but for the sake of the many people like me who are worried about it, I ask for some reassurance.

The other issue involving consistency on which the Minister can offer some comfort is specialist nurses. They are a wonderful idea. Epilepsy Action has been campaigning to promote their virtues, referring to them as “sapphires”, and they have an important role to play. We have about 250 at the moment, but the best estimate of how many we need is 1,100. There is clearly a gap, and those who are retiring or leaving are not being replaced, so the shortage will continue to worsen. The previous Government recognised the importance of sapphire nurses and was going to study their effectiveness. Will the Minister reassure me that the current Government will proceed with that study and recognise the importance of such nurses? Specialist nurses are a cost-effective means of providing consistent low-cost care that monitors a patient’s condition over time, ensuring that any blips on the radar are picked up early and preventing the need for costlier intervention further down the line.

That is the crucial point: better care and treatment are more cost-effective. We are all, I hope, looking for ways to save money, and that is one way to do so. We do not want inadequate care at the primary care stage to lead to more expensive tertiary care later. We do not want crises to occur. Cheaper care occurs in a primary setting and helps individuals to manage their condition, putting the patient in charge. However, to use the word “special” again, we need more specialism at the tertiary level as well. Neurological consultants are thin on the ground, but neurological consultants with an interest in epilepsy are even scarcer. They offer one way to help to prevent and correct misdiagnoses and to get it right the first time, but I gather from another Epilepsy Action survey that 90% of primary care trusts are not meeting the recommended two-week deadline for seeing a consultant.

I say that with a degree of caution, because I am no fan of two-week deadlines. They can be artificial, lack clinical sophistication and rob clinicians of their own clinical judgment. I have never been a fan of the two-week deadline. However, in my view, it has slightly more than a decorative role, if only because a lot of people present to their GP when the sort of crisis that I mentioned has occurred. Some degree of urgency in referral is needed, particularly because I hear many stories of cases where patients have died after referral but before having seen a consultant. That is an avoidable tragedy. We do not need artificial deadlines or targets, but there needs to be some way to ensure that urgent cases are referred promptly and reasonable confidence that they will see a consultant within a reasonable period.

I also ask for a bit of special treatment on the national level. I would be interested to hear whether the Minister might consider creating the post of national clinical director for epilepsy, which has been a long-term demand of many organisations in the Joint Epilepsy Council. One can commission successfully at regional level—it has been done in many parts of the country for many chronic conditions—but a degree of national oversight is needed to ensure that standards are set and adhered to. I realise that the National Institute for Health and Clinical Excellence has set clinical guidelines, but I have concerns.

In 2005, I was fortunate enough to be the parliamentary candidate for Twickenham, not far from the Minister’s constituency. I wrote a letter to the local paper during national epilepsy week because I wanted to highlight the issues, and someone wrote in the next week to say that clearly I was possessed by evil spirits. I had thought that Twickenham and south-west London were a particularly liberal, enlightened part of the world. That is what I was always told; they were so sophisticated that they had discovered liberal democracy a few years earlier than the rest of us. Blaming evil spirits was perhaps a bit unfair to me, but for many patients, NICE clinical guidelines are a bit like spirits. They have no real substance or tangible meaning, because they are not mandatory.

I know that there is always a big discussion about whether clinical guidelines should be mandatory if we do not want to take clinical power away from consultants, but clinicians are frustrated that they cannot implement the guidelines, and patients are equally disappointed that the guidelines do not mean anything in reality. There is a perhaps more philosophical question to be dealt with. If we are to have clinical guidelines for any condition, how can we deal with the fact that clinicians need to be reasonably confident that they are supposed to implement them and patients need to be confident that they will mean something? There is no point having clinical guidelines as decorative features. They are not Christmas trees; they are meant to help clinicians give better treatment.

The last Government met the Joint Epilepsy Council. I pay immense tribute to the then Opposition spokesman, Earl Howe. I know how much he has done on epilepsy and I have worked with him for many years. He is a good man, and I more than anyone am delighted to see him a Minister at last. He told the conference of NHS commissioners to go away and make a difference. How, specifically, does the present Minister think that NHS commissioners are making a difference? In particular, I make a plea to him to meet with me and representatives of the epilepsy charities—the Joint Epilepsy Council, Epilepsy Bereaved, Epilepsy Action—and senior clinicians to discuss some of the sector’s fundamental concerns. As I said, better treatment and better care will lead to bigger cost savings for the Department, but more importantly, they will improve quality of life of the 400,000 people in this country who have epilepsy.

I was surprised to read that the primary care trust for my Blackpool constituency has the highest incidence of epilepsy in the country. I had not realised that. We are talking not about a small group but of a large group of people who must deal with an immense stigma in their lives, as I know some of my hon. Friends will describe. We must deal with it day in, day out. Epilepsy is unlike any other chronic condition. I thank the Minister for listening and my colleagues for attending. Can we please hear some good, positive news about how the Minister intends to take the agenda forward?