Epilepsy

Laura Sandys Excerpts

Tuesday 29th January 2013 Commons Chamber

[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.

--- Later in debate ---

[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.

--- Later in debate ---

[Norman Lamb]

I am very grateful to my hon. Friend for that intervention. Whether it is provided by the Government or at a local level by primary care general practices, he is right to highlight the importance of much better guidance on how people can self-care. The role of expert patients can also be powerful. It can be of great value to somebody who is diagnosed with epilepsy to get guidance and support from somebody who already has the condition.

I am aware of the historical problems in this area and acknowledge that the services have not always been good enough for those living with epilepsy. Indeed, I acknowledge that the services are still not good enough in some parts of the country. There was some uncertainty, and perhaps some scepticism, over whether the coalition Government’s reforms would deliver the improvements that were so desperately sought. That was understandable, given that epilepsy has rarely found itself in the same starting position as other long-term conditions.

I am pleased to report that the Department of Health has taken a number of steps recently to improve the diagnosis and treatment of epilepsy. It will work with the NHS Commissioning Board, which takes on its full responsibilities from April, to drive further improvements for those living with the condition.

[Laura Sandys]

As the Minister rightly recognises, epilepsy has been a Cinderella condition. It has been ignored and has not received the profile that the numbers warrant. He is saying that there will be a step change in how the Department looks at the condition. Will he ensure that there is an understanding of what outputs we expect and that there are barometers to measure them, particularly given that the report states that only a third of commissioners currently put in place programmes for people with epilepsy?

[Norman Lamb]

I am very grateful to my hon. Friend. Clearly, the role of the Commissioning Board will be central in holding clinical commissioning groups to account. The register that Epilepsy Bereaved is calling for could, combined with action from the Commissioning Board, be powerful in helping us to understand more about the condition and in driving better practice.

I understand that there are no specific tests for epilepsy and that it can be difficult to diagnose. The hon. Member for Vauxhall talked about the problem of mis-diagnosis. Some people are diagnosed as having epilepsy who do not have it, and some people who have epilepsy are diagnosed as having a different condition. Such mistakes result in poor or substandard care. Increasing the awareness of the condition among health care professionals is a key factor in improving its early diagnosis and treatment. Detailed advice on epilepsy has therefore been made available on the NHS Evidence website. That is supported by the updated clinical guideline on the diagnosis and management of the condition that was published last year by the National Institute for Health and Clinical Excellence.

The treatment of long-term conditions is one of the NHS areas prioritised by the Secretary of State for Health, and it has featured prominently in the mandate to the NHS Commissioning Board and the NHS outcomes frameworks. The hon. Member for Vauxhall mentioned the awful jargon with which we all have to deal. I have my own personal war against jargon in the Department of Health, confronted with it as I am on a daily basis. As a quick aside—given that we have a bit more time than usual—we need to use language that people understand, rather than jargon that too often excludes people.

The mandate and outcomes framework set out the Government’s objectives for the NHS, and highlight the areas where we expect to see the biggest improvements. The mandate sets an objective for everyone with a long-term condition to be offered a personalised care plan by 2015 that reflects their preferences and agreed decisions. There is a legal requirement for the Commissioning Board to seek to meet the terms of the mandate, and it is potentially powerful to say that everyone with a long-term condition should have a personal care plan that they have been involved in designing and drawing up. Too often, whether for epilepsy or mental health—another area I have great interest in—people simply do not have such a plan and have never been asked for their views on their care and treatment. If we can effect the transition so that everyone with a long-term condition benefits from it, we can make a real difference. Epilepsy Action and other voluntary sector organisations have been requesting such a plan for some time now, and it should be seen as a positive step.

The NHS Commissioning Board has responded to the mandate and the outcomes framework by incorporating long-term conditions into the structure of the organisation with

“enhancing the quality of life for people with long-term conditions”

as one of its five areas of focus. Strong national leadership for epilepsy services has been raised time and again in the House, and I am pleased to announce that, as part of this work, the NHS Commissioning Board is appointing a national clinical director for chronic disability. They will not deal specifically with epilepsy, but having such a director for chronic disability, including epilepsy, is a positive step.

The NHS Commissioning Board is setting up four strategic clinical networks, which is important. We have seen the benefit of such networks with cancer, and those benefits are now being spread to other areas, including neurological disorders. The networks bring together groups of health professionals to improve services for neurological disorders and other specific conditions. They will receive an investment of £42 million and play an important part in driving up quality and consistency in treating those conditions. If everyone within the service is linked into expert networks, the chances of improving treatment on the ground become greater. Health and well-being boards will play an important role in driving up standards locally, given their role in agreeing local priorities and influencing commissioning decisions.

This year will see the publication by NICE of new quality standards for children and adults with epilepsy—that has been called for repeatedly in this House. Those quality standards, which are expected to be published in February and March, will help clinicians make informed decisions about referrals, tests and ongoing care, and ensure a more consistent application of NICE guidelines in that area.

The Department also understands the importance of providing the best possible information to people with epilepsy and promoting better self-care—the point correctly raised by my hon. Friend the Member for Beckenham (Bob Stewart). GPs have an important role to play in that, and in ensuring that those living with epilepsy have their condition kept under control with correct medication. Ultimately, however, responsibility for self-care lies not with health professionals, but with patients. Through NHS Choices, the expert patients programme, and support from health professionals and voluntary sector groups, people with epilepsy can receive the information they need to stay safe and independent, and to manage their condition on a day-to-day basis.

On the wider Government response, the hon. Member for Vauxhall referred to the role of education and schools. I understand that the Department for Education is working to support children and young people with epilepsy, as some are not reaching their full potential in school and further education. For example, the Department has issued guidance to schools on how best to manage medicines for pupils diagnosed with epilepsy and other conditions. For those pupils who cannot attend school because of their condition, the Department has provided guidance on what alternative provision should be made.

In addition, the forthcoming children and families Bill will introduce a duty on local authorities and clinical commissioning groups to commission services jointly—a much more integrated approach than we had in the past—to meet the needs of young people with special educational needs and disability, including those with epilepsy. The Bill will introduce a streamlined, single assessment for the young person. It will also inform an education, health and care plan for the individual. The plan will enable families and young people to buy services through direct payments—we are putting the individuals in charge and giving them real power—thus extending their choice and control. That approach is currently being piloted across 20 pathfinder sites. I understand that the lessons learned will inform the development of secondary legislation and codes of practice, and help with implementation.

For many adults with epilepsy, employment is a major quality-of-life issue—the hon. Lady rightly raised the importance of employment. Studies have shown that people with epilepsy are up to twice as likely as people without the condition to be at risk of unemployment or under-employment relative to their skills and experience. The Department for Work and Pensions has confirmed that, although it does not target employment programmes exclusively at individuals with particular conditions, its programmes, including specialist disability employment programmes, aim to identify and meet the needs of the individual, including those with epilepsy.

The Department for Work and Pensions also recognises the important role that cash benefits can play in supporting people with a disability or long-term condition to remain independent. Entitlement to disability living allowance, and to its planned replacement, the personal independence payment, is not based on a specific health condition. However, my understanding is that people with epilepsy may be eligible for support, depending on the severity of their condition. The hon. Lady mentioned the Atos-conducted work capability assessments and made the legitimate point that they should concentrate on the individual. We can have guidelines to help to steer assessors, but the individual’s needs should be properly and fully assessed. That is outside my departmental responsibilities, so I will refer her remarks to the right place.

The Department for Work and Pensions has advised that, throughout the development of the new personal independence payments policy, it has engaged and consulted with a wide range of disability organisations. That includes a discussion with Epilepsy Action on the assessment criteria for the new policy. For those who face barriers to work because of their condition, financial support may also be available under the employment and support allowance—that, too, is subject to eligibility.

I should refer to some of the hon. Lady’s specific questions—I will ensure I give her a full reply later. She mentioned bus passes. I understand that some local authorities in England have implemented their own bus pass concessions and extended the hours of free travel to include peak times, but the majority have not. Ultimately this has to be a matter for local decision making. I recognise that such variations are not ideal, but the local authority has the power to do this, and pressure can be put on the local authority in any particular area to do what others have already done.

I was slightly confused because the hon. Lady referred to both the National Audit Office and the Audit Commission. The point is that we should focus on the important issue. She argued the case for some sort of inquiry into epilepsy care to see where we can improve its quality. The right approach is probably through the work that NICE is doing. If we can establish what good care looks like, we can encourage all clinical commissioning groups to seek to deliver that quality of care.

The hon. Lady also talked about outcome indicators, and I will look at that and come back to her. We need to try to understand the jargon, but the important point is that we should, as far as possible, be seeking to focus on the results for individuals. Too often in the past we have focused on processes and not enough on what we seek to achieve through health care. If we can, through the outcomes framework, identify things that we are seeking to achieve for patients—improving their quality of life—and that can then drive the system, that would be a good thing. We will look specifically at that.

The hon. Lady talked about the constitution and the right of involvement. We have been updating the constitution and putting patients’ rights much more centre stage—focusing on the personal rather than a more paternalistic approach. That is the right approach, and through the combination of what the constitution will say with what the mandate will require of the NHS in providing the personalised care plan—with the involvement of the individual and based on their priorities, not just presented to them—we can make real progress in putting the patient centre stage.

The hon. Lady talked about the lack of engagement of CCGs. That point has been heard, and it is good that she has had this opportunity to make the point. The Commissioning Board will do what it can to ensure that the quality of care is improved at local level, and it will be the board’s responsibility to engage with CCGs on that.

The hon. Lady also mentioned children and the fact that they are not achieving their full potential. I think that I have addressed that point already, but I will come back to her if I have missed anything. She and others referred to the absolute importance of a speedy referral from GP to specialist, and the hon. Member for Walsall South (Valerie Vaz) also mentioned the action plan for children in schools. She is right to raise both those issues, which were addressed in her ten-minute rule Bill.

I hope that I have addressed the key issues that were raised in the debate and I apologise if I have missed any. I thank the hon. Member for Vauxhall for introducing this debate, which has given me an important opportunity to highlight some key concerns, as well as the fact that much work remains to be done to improve the quality of care across the country. The Government are working to support people with epilepsy and to keep those living with the condition as safe and independent as possible.

Question put and agreed to.