Epilepsy

Baroness Hoey Excerpts

Tuesday 29th January 2013 Commons Chamber

[Kate Hoey (Vauxhall) (Lab)]

I thank Mr Speaker for granting this Adjournment debate, which serves to give the relevant Minister—who I am pleased to see has just arrived in the Chamber; perhaps I rose to speak a little too quickly—an opportunity to update us on how some of the changes to the health service locally and nationally, such as in respect of commissioning, will help to improve the lives of those who suffer from epilepsy.

My hon. Friend the Member for Birmingham, Selly Oak (Steve McCabe) secured a Westminster Hall debate on epilepsy in November 2011 and my hon. Friend the Member for Walsall South (Valerie Vaz) introduced an excellent ten-minute rule Bill on epilepsy in November 2010. I am pleased to see that the chair of the all-party group on epilepsy, the hon. Member for South Thanet (Laura Sandys), is present.

As is the case for all Members, hundreds of my constituents suffer from epilepsy, and I am grateful to many of them for their input into this debate. I am especially grateful to Ashleah Skinner, who has a great deal of knowledge of and interest in epilepsy and disability issues. No one understands the difficulties and challenges that face epileptics better than those who suffer from the illness.

For the record, I should point out that epilepsy is defined as a tendency to have recurrent seizures, sometimes called fits. The seizure is caused by a sudden burst of excess electrical activity in the brain, causing a temporary disruption of the normal messages passing between brain cells. Epilepsy is, of course, not one condition but a composite of about 40 different types of seizure and up to 50 different syndromes.

An epilepsy diagnosis can be a shattering blow to the individual concerned. All sorts of things that have been taken for granted are no longer automatic: they might lose their driving licence, for instance, or their employment, which might in turn lead to benefit dependency. Approximately 600,000 people have epilepsy, which is about one in 100 people, and every day about 87 people are diagnosed with it, which amounts to 32,000 each year.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this very important health issue to the Floor of the House. One other issue relating to epilepsy that my constituents raise with me is holiday insurance. Does she think we should be doing more about that, whether directly with the insurance companies, with the overall body or with individuals?

[Kate Hoey]

I thank the hon. Gentleman for his intervention, and I know of his continuing interest in this issue and the contributions he has made in the House. If we were to get into a discussion about insurance and travel, I could talk a great deal about the discrimination that some travel companies display, and obviously he has particular expertise in this issue. Such discrimination is all part of a lack of understanding and knowledge of epilepsy among the general public, which runs through this whole debate. That perhaps applies to travel companies as well.

About 1,150 people a year die from epilepsy, with three dying every day, and about 40% of all these deaths and 59% of the childhood deaths are potentially avoidable. However, the new research shows that the level of epilepsy mortality is rising. Achieving absence of seizure—freedom from seizure—is key to saving lives and saving money, as well over 100,000 people are living with avoidable seizures. Just last week, Epilepsy Action, one of the important charities within the Joint Epilepsy Council, which brings together all the campaign groups on epilepsy, published a new report “A Critical Time for Epilepsy in England”. Its launch was hosted in the House of Commons by the all-party group on epilepsy, which is chaired by the hon. Member for South Thanet. I recommend the report to anyone who wishes to find out more about what more needs to be done.

Between April and September 2012—the report is very up to date—Epilepsy Action carried out a survey of clinical commissioning groups, acute trusts, local authorities and people with epilepsy. I have read the report and it backs up a number of the trends that I have heard about and a number of the concerns that individual constituents have raised with me.

[Jim Shannon]

Will the hon. Lady give way?

[Kate Hoey]

I will. We have slightly more time tonight, although I know that perhaps not all Members here want to stay until 7 pm.

[Jim Shannon]

I thank the hon. Lady for her graciousness in giving way again. Some 20,000 people in Northern Ireland have epilepsy, which is one in every 90 people. Does she feel, as I do, that the immensity of the scale of epilepsy in the population is unknown? How can we raise that profile and make more people aware of what is happening?

[Kate Hoey]

I was pleased to see just how much discussion there had been in the House of Commons on this issue, and it is crucial that we, as individual MPs, raise it more with our local authorities, health acute trusts, hospitals and GPs, as understanding is so important in this matter.

[Laura Sandys (South Thanet) (Con)]

rose—

[Kate Hoey]

I of course give way to the chair of the all-party group.

[Laura Sandys]

It is excellent that the hon. Lady was able to secure this debate, particularly in the light of the recent report. As an epileptic, I find that one of the issues we face is that although the condition affects half a million people there is a stigma around it, and that has stopped clinicians and society in general addressing the underlying issues we face. It is incredibly important that we have this sort of debate and ensure that we are more public about what epilepsy is if we are to give it the right level of attention.

[Kate Hoey]

I thank the hon. Lady for that. She, along with the hon. Member for Blackpool North and Cleveleys (Paul Maynard), who unfortunately could not be here today and who has also raised this issue as an epileptic, has shown that it is very important that the public understand that people can have epilepsy and still carry on living a normal life—if being a Member of Parliament is indeed a normal life.

[Bob Stewart (Beckenham) (Con)]

I have dealt with epileptics who have collapsed in front of me and had a fit. Does the hon. Lady think that we are doing all we can to educate our children at school on how to recognise epilepsy and, just as important, what to do with someone who is suffering a fit?

[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.

--- Later in debate ---

[Kate Hoey]

I thank my hon. Friend, and I referred to her ten-minute rule Bill. As the Minister has slightly longer than he thought for the winding-up speech, it would be helpful if he referred to progress on my hon. Friend’s Bill. I appreciate that he is a Health Minister, but I want to raise some issues that relate to employment, welfare and benefit rights. If he cannot answer my questions, I hope that he will ensure that the responsible Minister does so.

There is no doubt that most people with epilepsy want to work, but many of them require additional support. Government schemes, such as Access to Work, can be beneficial to people with epilepsy by getting them off benefits and into work, which should always be a top priority.

I was surprised to learn from a recent parliamentary written answer that the Access to Work scheme in England and Wales between May 2010 and 30 June 2012 helped just 1,360 individuals with epilepsy. In my constituency no one with epilepsy was helped by the Access to Work scheme. There seems to be a lack of awareness of the scheme and inadequate information being given to people. I hope the Minister will continue to address the problem. Many constituents claiming sickness benefits want to work, but have ended up on benefits because they did not have the proper support when they were in employment. The Access to Work scheme could have prevented them from leaving employment. It is in the Government’s interest to take the matter seriously.

[Jim Shannon]

The hon. Lady has been very kind in giving way. I know she is trying to get as much time on the subject as she can. There is another important issue: disability living allowance for those who have epileptic fits and may need extra help. Does she think that one of the Minister’s colleagues in the Department for Work and Pensions may be able to do more for those with epilepsy to ensure that they get all the benefits that they are entitled to, particularly DLA?

[Kate Hoey]

That is an area that I am coming to. It is extremely important. I appreciate that the Minister responding to the debate is a Health Minister, but I know he can multi-task on some occasions.

I was disappointed to learn from another parliamentary written answer that between June 2011 and July 2012 only 20 individuals in receipt of employment and support allowance—incapacity benefit—whose reported primary medical condition was epilepsy received what is called a job outcome as part of the Work programme. There are cases in which individuals with epilepsy are unable to work, but it falls upon the Government to provide unconditional support through welfare, such as employment and support allowance.

The NICE guidelines on epilepsy make it clear that epilepsy may sometimes result in significant disability, social exclusion and stigma, which many Members have mentioned, and that people with epilepsy would commonly encounter problems in employment. According to the work capability assessment handbook, the Atos working group panel on epilepsy was clear that if a person has epilepsy which occurs less than once a month, that is unlikely to impact significantly on their ability to work. I urge that consideration is given to the effects of the disorder on each individual, rather than making such a blanket ruling.

From another parliamentary question I discovered that in February 2012, 12,510 people in England with epilepsy as their primary medical condition claimed ESA, which equated to approximately 30 people in my constituency, and during the same period 32,090 people in England with epilepsy claimed either incapacity benefit or severe disability allowance, which equates to 70 people in my constituency. Finally, during the same period, 59,070 people in England with epilepsy claimed disability living allowance, which equates to approximately 100 in my constituency. There is concern that such figures are not always based on knowledge of the person and of epilepsy.

There are obviously cases where an individual who may drive as part of his job, for example, subsequently has a seizure. Under current Driver and Vehicle Licensing Agency regulations that person would be prohibited from driving for 10 years without medication. That sometimes means that he would lose his job and end up on benefit. The whole employment and support allowance system is insufficiently sympathetic in such scenarios and ends up worrying the individual with numerous mandatory schemes, sanctions and loss of benefits. It is one of the flaws in the system that needs to be dealt with to show that people are taken seriously and treated as individuals.

[Laura Sandys]

I welcome this debate, because the hon. Lady is covering a very wide spectrum of issues. She said at the beginning that a third of people with epilepsy do not have the right treatment, are not on the right medicine or have not seen the right specialist, and that is the Minister’s responsibility. Some of the other problems she mentioned, such as seizures at work and people not being on ESA or DLA, might become less prevalent if, right at the beginning of the process, we make sure that people get the right diagnosis and see the right people at the right time.

[Kate Hoey]

The hon. Lady is absolutely right. The earlier the true diagnosis is made and the person is referred to a specialist, the sooner they are seen as having an illness that can be treated and have the chance of a positive future. I am sure that everybody in the Department of Health feels like this. However, something more needs to be done at the local level among clinical groups and PCTs, and even GPs, to create this sense of understanding. The hon. Lady heard the very moving testimony from Jemma, who spoke at the launch about the difference between having a good doctor who understands and gets someone the right referral immediately and another doctor who perhaps does not understand and does not take the time to do so.

The hon. Member for Meon Valley (George Hollingbery) asked me to mention that he has a constituent who has very mild epilepsy but has not lost their job because the company they work for, Hambleside Merchandise, a business in Meon Valley, has been understanding about the situation. It is keen for the Government to change the law so that it complies with the European Union change on whether people with mild epilepsy can drive again. It was confirmed in a ministerial answer last year that these changes would happen. I ask the Minister to follow up on that to see what can happen and how quickly.

Someone in London who cannot drive because of their epilepsy may be eligible for the disabled person’s freedom pass. The Epilepsy Society, backed by other disability organisations, is campaigning for the Government to make changes to the pass in London and to the disabled person’s bus pass offered by the national Department for Transport under the English national concessionary travel scheme. In particular, the organisations call for the pass to include travel during peak hours, which is very important if someone is trying to keep a job. In some cases, a free companion pass may be necessary, as is already possible in Scotland and in Wales. If the hon. Member for Strangford (Jim Shannon) were still in his place, I would ask him whether that also applies to Northern Ireland. The Epilepsy Society also says that regional variations are confusing. People move around and it would be much better if there were an overall, agreed way of doing it.

All this comes back to a lack of awareness about information on many of these schemes. There is a lot of help and support around, but people need to be very savvy or to have a very savvy parent, or to have a link into one of the organisations that provide support, to find out all the information. Government cannot do everything, but there may be ways in which they can ensure that local authorities and others with responsibility do a little bit more. For example, people with epilepsy who get continuous anti-convulsive therapy may be eligible for the NHS medical exemption certificate. They have to fill in a form at their GP surgery to get this, and it allows them to get free prescriptions for five years. One would think that anybody in this position would automatically know about that, but it is amazing how many people do not. Perhaps GPs do not always think that they have to tell people about these things. Where it is useful to do so, we can continually raise these issues in a cross-party way within Parliament regarding our own areas.

I will conclude by thanking all the agencies and campaign groups involved for helping people with epilepsy and their carers, who do so much to help their relatives or friends. I also pay tribute to the Joint Epilepsy Council, which continues to provide information and guidance for those affected by epilepsy. Finally, before the Minister responds, I pay tribute to our own all-party group on epilepsy for the valuable work that it has undertaken over the years.