Epilepsy

Part of the debate – in the House of Commons at 6:25 pm on 29 January 2013.

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Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health 6:25, 29 January 2013

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 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 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.

House adjourned.