Epilepsy

Paul Burstow Excerpts

Tuesday 29th November 2011 Westminster Hall

[The Minister of State, Department of Health (Paul Burstow)]

I, too, am pleased to serve under your chairmanship, Mr Scott. I congratulate the hon. Member for Birmingham, Selly Oak (Steve McCabe) on securing the debate and on being so persistent in applying for it week after week until, finally, being successfully in the ballot for Adjournment debates. The hon. Gentleman is right to bring the matter back to the House for a debate and I am grateful to all hon. Members who have contributed. The personal testimony and the testimonies we have heard on behalf of constituents speak to the devastation that the condition can bring to families and the people who suffer from it.

A lot of statistics have rightly been rehearsed to illustrate those points as part of today’s debate. They are undoubtedly very compelling and, as has rightly been said, quite depressing. They show that although we have known for a long time what needs to be done, it does not appear to be implemented as consistently as it should be across the country. There are places that follow the NICE guidelines and consequently make a difference, but over many years other areas have failed to invest or see the matter as an area of priority. That is not a comment on previous Governments’ records, but an acknowledgement of the difficulty in an organisation as large as the NHS of ensuring sufficient focus on something as important as this.

The hon. Member for Hackney North and Stoke Newington (Ms Abbott) paid tribute to the work of the all-party group on epilepsy. I come across many APPGs in pursuing my ministerial responsibilities; they are, truly, an important part of how this Parliament makes sure that the voices of many seldom-heard groups—or groups certainly not heard often enough—are heard by Ministers and the Government.

I will try to ensure that I respond to all the points that have been made. I have been encouraged to speak for as long as is necessary to do just that.

[Paul Flynn]

Will the Minister give way?

[Paul Burstow]

There is an objection to that point. I give way.

[Paul Flynn]

Members have, very generously, given the Minister 40 minutes to reply to the debate, which is rather longer than Ministers usually have. Will he find time in that 40 minutes to commit to the practical, affordable remedies that have been urged on him by the many charities involved in SUDEP?

[Paul Burstow]

I hope to do just that, and I hope to do justice to the points that the hon. Gentleman and other hon. Members made in the debate.

At least one hon. Member—my hon. Friend the Member for Blackpool North and Cleveleys (Paul Maynard), who initiated the debate we had about a year ago—has contributed to the debate on this issue again. The message I took from last year’s debate was clear, and I take it again today. There is a real sense that we need change in the system. We need change that delivers a real focus on issues such as epilepsy to ensure that clinicians and the service respond properly to the evidence, act on the evidence, and translate it into services that are fit for purpose. At the moment, the service continues to fail hundreds of thousands of people living with epilepsy, at a huge cost to them personally and to their families. When we debated these issues a year ago, there was some uncertainty about how the Government’s plans for reform would deliver improvements. I would like to spend a little time today setting some of them out.

[Ms Abbott]

Will the Minister give way?

[Paul Burstow]

In a moment, if I may. We have plenty of time. I just want to say something about the voluntary sector, and then I will happily give way to the hon. Lady.

The outlook for most patients with epilepsy is good—it is important to acknowledge that—but we know that more than 1,000 people die of epilepsy-related causes each year. Many of those deaths are due to accidents or status epilepticus, but a significant number of them are attributable to SUDEP—sudden unexpected death in epilepsy. The devastating effect of any epilepsy death cannot be overestimated and cannot be understated. I pay tribute to the many voluntary sector organisations that have been referred to in this debate. They work hard to highlight the challenge, and to ensure that the failings that have been described are identified and tackled.

[Ms Abbott]

In preparing for the debate, I was struck by how much higher our rate of sudden unexpected death in epilepsy is, compared with that in the rest of Europe. Do Ministers have any analysis of why that might be?

[Paul Burstow]

I will come on to outcomes and information in a moment. Understanding the performance of our health economies, compared with that of other systems around the world, is an important part of how to ensure that we focus on what matters most to deliver change and improvement. I will talk about outcomes, data and variation in a moment, if I may.

I particularly want to acknowledge the work of Epilepsy Bereaved, which since its foundation in 1995 has led cutting-edge work to establish major risk factors and ways to reduce risks and prevent deaths. The charity provides very well-regarded bereavement support, which helps to break the isolation that people experience following SUDEP, or other seizure-related deaths. I acknowledge the organisation’s concerns that failings in care and the commissioning of services have led to many avoidable deaths from SUDEP.

In the 12 months since we last debated epilepsy services in Westminster Hall, we have made significant strides in putting in place the necessary arrangements to level the playing field in commissioning epilepsy services relative to other services.

That leads me on to the NHS outcomes framework. The hon. Member for Hackney North and Stoke Newington referred to the NICE guidelines and the role of specialists. One role that the NHS outcomes framework can play is to ensure that commissioners, providers and others are better able to identify those things that can drive up performance in the NHS. The publication of the first NHS outcomes framework marks the start of a journey for greater transparency and accountability for the outcomes that the NHS achieves for patients. It demonstrates a move from traditional input and output targets towards a focus on delivering better health outcomes for all. The framework includes a focused set of national outcome goals and supporting indicators that patients, the public and Parliament will be able to use to judge the overall progress of the NHS. A number of those goals and indicators are relevant to epilepsy. They will, of course, inform the Secretary of State’s mandate to the NHS commissioning board and, in turn, to the NHS commissioning framework.

Let me give a few examples of the relevant indicators. In domain 1 of the NHS outcomes framework—preventing people from dying prematurely—the overarching indicator is about mortality from causes considered amenable to health care. This debate demonstrates graphically that epilepsy is one of the conditions where there is plenty of room for significant progress. The hon. Member for Hackney North and Stoke Newington rehearsed the statistics, which are compelling. They point, very powerfully, to commissioners having to look at this if they are to deliver measurable improvement against that indicator.

Domain 2, enhancing quality of life for people with long-term conditions, speaks directly to the issues addressed in this debate. The overarching indicator is health-related quality of life for people with long-term conditions. It addresses such specific issues as the proportion of people feeling supported to manage their conditions. That speaks directly to issues such as care planning and case management. That indicator is not just in the NHS outcomes framework; it also sits within the adult social care outcomes framework, to try to align more joined-up thinking and commissioning on these issues. Improving functional ability in people with long-term conditions relates to ensuring that more people are able to stay in employment.

There are many other indicators. The aim of domain 3 —helping people to recover from episodes of ill health or following injury—is to capture information on patients’ journeys through the system. Domain 4—positive experiences of health care—will look at such things as patients’ experiences of primary care. My hon. Friend the Member for Blackpool North and Cleveleys described the conversations that should happen, and they should be captured.

The emerging commissioning landscape will contribute to improving not just epilepsy outcomes but outcomes across the board. In the past, commissioning has been too remote from the patients it is intended to serve. Commissioning decisions made by clinical commissioning groups will ensure that they are underpinned by clinical insight and knowledge of local health care needs, and, importantly, the perspective of the patient and family carers. Clinical commissioning at its best is a collaboration of professionals. The NHS commissioning board and clinical commissioning groups will be required to obtain clinical advice from a broad range of professionals with expertise in the

“prevention, diagnosis or treatment of illness”—

and in the—

“protection or improvement of public health”.

There is a real pull in the framework that we are putting in place to make sure that that happens. As well as promoting effective clinical leadership and multi-professional collaboration around specific conditions and pathways, we expect doctors, nurses and other professionals to come together in clinical senates to give expert advice from a variety of health and social care perspectives.

NICE has rightly been alluded to a lot. The Government intend to build on its strong track record by re-establishing it as a statutory body. It will continue to play a key role in the NHS through the production of robust, evidence-based advice and quality standards. I will address the issue of quality standards specifically. The hon. Member for Birmingham, Selly Oak asked about surgical interventions in the context of the work being done to produce quality standards covering epilepsy services. They have already been commissioned by NICE and will cover children and adults separately. I will pass on the point that was made about the need to address issues of transition, so that that is not overlooked in producing two separate quality standards. In the children’s quality standard, there is a specific need to address access to surgical interventions, and it will be addressed.

HealthWatch has its part to play, and will better enable people to help shape health and social care services, at both a local and national level, by providing a strong forum where the views and experiences of patients, carers and the public can influence the commissioning process and improve the quality of health and social care services. There must be a clearer split of responsibility—a sense of joined-up access across the care pathway to deliver a less fragmented and more person-centred approach to planning. We accept that care and support for those with long-term conditions is a particular area where we do not get it right often enough. Not only are patients confused but their care and quality of life are compromised, and it leads to inefficiencies and duplications in the system.

The hon. Member for Birmingham, Selly Oak asked me specifically about prisoner health. One of the opportunities that arises from the establishment of the NHS Commissioning Board is that it will be the commissioner of prisoner health. With it leading on such work, we are in a much better place to assure ourselves that the NICE guidance on prisoner health and epilepsy is properly and consistently applied throughout the prison estate. I shall certainly pass on any further information that I can to the hon. Gentleman.

[Ms Abbott]

I have listened with great attention to the Minister and, naturally enough, he has started with generalities, but the nature of Westminster Hall debates lies in the opportunity for Members to get replies to specifics, so I have three questions arising from the speeches today. First, do the Government intend to appoint a national clinical director for epilepsy? The hon. Member for Blackpool North and Cleveleys (Paul Maynard) asked specifically about people being able to talk about sudden unexpected death within a couple of weeks of diagnosis, but am I to take it that the Minister has no means to direct that and will leave it to commissioning groups to decide what is appropriate? Finally, are the Government prepared to commit to the explicit inclusion of epilepsy mortality in the outcomes frameworks?

[Paul Burstow]

The hon. Lady needs to be patient, because I still have quite a lot of sheets of paper and quite a lot of answers to give. Before I took her intervention, I had answered a specific question on prisoner health from the hon. Member for Birmingham, Selly Oak. I am trying my best to cover the ground.

I will deal with the national clinical director proposition. As part of the transition—the hon. Lady alluded to this—from a command-and-control system in which the NHS is directed from the Department of Health to a model in which the service is at arm’s length and directed through goals and objectives set to a mandate, the NHS commissioning board will be where national clinical directors sit. The national commissioning board will make the decisions on the precise configuration of those appointments. Clearly, that will be modelled on the approach taken on an outcomes framework, so that there is proper coverage of all its domains. That is as much as I can say today, and perhaps we need to have a further debate, but if she wants more information, I will happily write to her with more detail. I cannot say today, however, that there will be a DH-appointed epilepsy national clinical director, because that is the old world and we are moving to a new world, whether we agree about that or not, and in that new world the responsibility for making choices about the appointment of national clinical directors will sit with the NHS commissioning board. That is as clear an answer as I can give to her question. I will answer the others as we move on.

Assessment of need was mentioned in the debate and goes to the heart of a challenge for the charities. My experience over the past 12 months of talking to many non-governmental organisations that advocate on behalf of patient groups is that some see huge opportunities in reorganising themselves to get much closer to the new commissioners and to those who will shape priorities for local services at a local level, and they are looking to organise themselves accordingly. Others are finding it more difficult to think through how to organise themselves to do that, and are therefore looking to how they can use the old levers, encouraging the Department of Health to proceed through central fiat and direction. My job is to say that that is not how it will work and, if they expect that that is how things will happen, they will be sadly disappointed. The Department and I as a Minister are only too pleased to work with organisations to ensure that they can realise and exploit the full potential of the new arrangements such as the health and wellbeing boards, the clinical commissioning groups and their duty to engage with their public, their patients and carers. Organisations, including some of the epilepsy charities, need to think that through carefully.

Health and wellbeing boards will be the local system leaders and will drive joined-up health and social care services. They have a key role, with joint strategic needs assessment and joint health and well-being strategies, in which they understand the population need and future population need, and that in turn drives commissioning for populations and outcomes. Simply said, to ensure that those joint strategic needs assessments are rich and informed, charities in the sector have a part to play in the conversation, to ensure that their input is not lost. NICE clinical guidance and quality standards play their part as well.

The hon. Member for Birmingham, Selly Oak asked about research. Who could disagree—I certainly do not—that the case for more research is strong? Again, however, directing more research through ministerial instruction is not how we should proceed. That might get more research but it does not guarantee quality, which is why we have for a long time had the Medical Research Council leading, with independent peer review as the process for allocating research resources. As in many other spheres, the key is to ensure the crucial infrastructure to support quality bids in the first place—the better the quality, the better the chances of an increase in the resources. We saw that with dementia; the Government had a priority to invest more but did not achieve that simply by putting up a quantum and stating that “This is what we must now spend.” Simply, it is about putting in place the steps to ensure quality research bids in the first place.

The information revolution is another important part of delivering the agenda. Today’s challenge in providing high-quality care services cannot be met without effective use of information. At present, many people who use our health and care services do not get the information that they need and expect as part of the care process, which we have heard described graphically. We sometimes fail to meet the information needs of our clinicians and care professionals, so information is critical to our ambition to put people in the driving seat of their services and their care. Through the work of the NHS Future Forum so far, we are examining how to ensure that the information strategy that will be published fully reflects the various concerns expressed.

The hon. Member for Hackney North and Stoke Newington asked a specific question about whether the information provided in Scotland and Wales is available. The answer is yes. There are comprehensive information sources available on NHS Choices, including a guide to epilepsy that contains information about SUDEP and minimising risk. The use of things such as NHS information prescriptions and, as we develop more of them, tools to help patients and clinicians make decisions are ways of further strengthening that important notion of “no decision about me without me”.

The hon. Member for Newport West (Paul Flynn) talked about his constituents Gwyn and Gill Thomas, the tragic death of their daughter from SUDEP and how they felt bewildered and, I suspect, outraged that they did not get information on which they could have acted at the time. That has spurred them on, and we can probably find echoes of that in every constituency surgery throughout the country—people motivated by personal experience to ensure that it happens to no one else. The hon. Gentleman’s example of the case of Christina and the lack of knowledge of risk underscored the as-ever exceptional contribution of my hon. Friend the Member for Blackpool North and Cleveleys to today’s debate. By talking about his own experience, he illuminates a much wider and more important picture about the frailty of human beings and their reluctance sometimes, even when professionally trained, to engage in the conversation that they are paid to have, which ultimately is a conversation about life or death. We know that NICE has set out clear guidance on care planning and case management, which provides good evidence of how they can make a difference.

The guidance also talks about the role of epilepsy nurses, and the hon. Member for Hackney North and Stoke Newington asked how the Department helps with their availability. One of the ways we help is by ensuring that good tools are available for local business cases to be put to commissioners locally. We do not mandate from the centre a certain number of such members of staff, but we make it clear through the regulatory framework and other ways that the skill and staff mix of organisations has to be appropriate to the services that they are providing. There is as well a strong economic case for epilepsy nurses to be commissioned, because of how they can have that honest conversation with the individual concerned.

Another way we can play our part at national level in raising the profile of these issues and making commissioners think through how they commission services effectively is through the development of outcome strategies. We have outcome strategies for respiratory and mental health conditions, and I recently announced the Government’s intention to develop a cross-Government outcome strategy for long-term conditions. The purpose of the strategy is to take a life-course approach. It will draw on the Government’s approach in developing our mental health strategy. Shaping it will involve a wide range of stakeholders beyond the Government.

The hon. Lady rightly rehearsed the Prime Minister’s enduring interest in these issues, which spans the whole health sphere. That is why he continues to pursue and to follow closely the key work of Health Ministers in taking forward the legislation to reform the NHS. I will inquire about the correspondence and find out what has happened about that.

Reference was made to the Joint Epilepsy Council and its activities. I applaud its work, but I must make it clear that the future of our public services is in a local rather than a national context. For the NHS, it is not about running commissioning services for specific conditions from the Department of Health; it is about local clinical commissioning groups working locally with patient groups and others better to understand local needs and to ensure that they structure services with those in mind.

[Steve McCabe]

I accept the case that the Minister is trying to make for the new commissioning arrangements, but, like many of us, charities and help groups that work with epilepsy are not entirely clear about how the new arrangements will work. Does he have any plans to meet the epilepsy groups so that he can better explain his ambitions and how those groups will be able to play a central role in the new world that he envisages?

[Paul Burstow]

It was kind of the hon. Gentleman to intervene, because it allows me to answer his final question. The Department continues to work with the charities and to discuss their concerns, and I am happy to arrange a meeting to have such discussions.

[Paul Flynn]

rose—

[Ms Abbott]

rose—

[Paul Burstow]

I will give way to the hon. Gentleman while the hon. Lady frames her questions—she clearly has one or two—and I will then give way to her.

[Paul Flynn]

I have listened with great attention to the Minister. I am aware of his record in opposition as a doughty campaigner for many causes. The Government are obsessed with change and upheaval in health service structures. Can he provide some practical assurance that by the end of their term of office, if they go to 2015, there will be fewer sudden unexpected epilepsy deaths?

[Paul Burstow]

I have referred to the focus on outcomes and the establishment of an outcomes approach not just to commissioning services, but to how we measure the performance of services. That provides hope of an improvement. The issue is not just a high-level one. I have not talked about specific statistics today, but sitting behind each and every indicator in the outcomes framework for the NHS are hard metrics that are being used to identify variations between parts of the country. We have seen in other services—for example, cancer services—how powerful the publication of atlas data, which shows performance in different localities, is at challenging clinical teams and challenging commissioners to commission differently and better. I genuinely believe that that approach and the focus on outcomes and data are key drivers to improving future performance.

[Ms Abbott]

I have listened with great care to the Minister, who has been at pains to outline that we are moving from a world of command and control health provision to a world in which individual clinical commissioning groups will make decisions for their locality. Should the groups that are lobbying on epilepsy take from this debate a message that the days of lobbying at national level are effectively over, and that they must mobilise themselves to lobby commissioning group by commissioning group?

[Paul Burstow]

They must certainly be prepared to engage a lot more at local level. That is an important part of commissioning to fit the needs of postcodes rather than by prescribing from the centre and having postcode lotteries. It is not possible from so far away to be clear about the specific needs of a population. That is why the change is so important. However, the Department of Health expects and Ministers want to have a relationship with those organisations, because they can inform the shape of the mandate that the Secretary of State will set for the NHS. They can inform the way in which NHS outcomes framework, the adult social care outcomes framework and the public health outcomes framework operate, and their priorities. There will still be a rich conversation at national level about action, but there will be an even richer conversation about outcomes, performance and commissioning, which need to be local.

In conclusion, I am grateful to the hon. Member for Birmingham, Selly Oak for calling this debate and his perseverance in applying for it. He has rightly rehearsed a matter that has been neglected for too long. I believe that the Government’s changes, particularly our focus on outcomes and greater respect for clinical judgment at local level, will deliver improvements in services and quality of life, and indeed will save lives through improved commissioning at local level.