Epilepsy Services

Paul Burstow Excerpts

Tuesday 12th October 2010 Westminster Hall

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

I start by congratulating the hon. Member for Blackpool North and Cleveleys (Paul Maynard) on securing this debate and on the remarkable way in which he outlined a compelling personal case and posed some important challenges for the Government.

Before I respond to the hon. Gentleman’s points and to contributions made by other hon. Members, I would like to correct an error that I made in a debate on diabetes on 15 September. During that debate, I mistakenly stated that the Juvenile Diabetes Research Foundation supports the NHS White Paper. In fact, it has not taken a position either way, and I am happy to correct the record on that point at the earliest opportunity.

In introducing the debate, the hon. Gentleman gave a powerful account of why we must do better for the 450,000 people with epilepsy in the UK. He painted a compelling picture of the fear that the condition provokes and the fear of the aftermath—the “thief in the night”, as he put it. Many hon. Members have made powerful testimonies in this debate, and that is to be commended.

I also congratulate the hon. Gentleman on his recent appointment as vice-chair of the all-party group on muscular dystrophy and as vice-president of Epilepsy Action, an organisation that does excellent work to support and advise people with epilepsy. He asked me if I will meet him and other colleagues from the sector, and I would be happy to do that, together with his colleague, the hon. Member for South Thanet (Laura Sandys), who is chair of the all-party group on epilepsy. I hope that we can have further discussions about that.

I also welcome the hon. Member for Leicester West (Liz Kendall) to her new role. I understand that, in a previous incarnation, she worked as a special adviser to a former Secretary of State. I look forward to our exchanges in Westminster Hall and the main Chamber over the years to come. I hope that she will find the role as enjoyable and fulfilling as I do.

The debate has highlighted the many failings of the current arrangements for the design and delivery of epilepsy services. Those failings have been clearly articulated by many people, and in particular, the issue of stigma was raised by the hon. Members for Scunthorpe (Nic Dakin) and for South Thanet. I undertake to take that issue back to the Minister of State, Department for Education, my hon. Friend the Member for Brent Central (Sarah Teather), who is to meet colleagues in the sector soon, so that we can look at how to tackle that problem. It is not a matter solely for the Department of Health, but rather a wider societal issue and a challenge for the Government. We will discuss and look further at how to ensure clarity and proportionality in the regulatory burden.

Hon. Members have referred to the various statistics that make up part of the picture: 69,000 people are living with unnecessary seizures, and 74,000 people are taking drugs that they do not need. Nearly £200 million is needlessly spent each year on hospital admissions linked to poorly managed epilepsy. The 400 avoidable deaths per year—a tragic number—are largely the result of poorly controlled epilepsy.

The previous Government produced a string of policy documents designed to improve services and support patients with neurological conditions. The national service framework for long-term neurological conditions, and the NICE clinical guidelines on epilepsy, are both strong statements that the Government support. Plenty of sensible work has been done to improve support for people with all kinds of long-term conditions, such as setting out the need to have a more patient-centred approach to their care. The problem, which has been made clear in today’s debate, is that the words in those statements have often not been translated into practice. The failing is not of our shared intent, but of implementation. The previous Government’s top-down approach created a culture where only what gets measured gets done. That distorts priorities and, as the debate has demonstrated, leaves gaping holes in provision and lets people down in the ways that have been described.

The solution is not to publish more strategies or add more to the list of things that the NHS has to measure and account for. Instead, we should change the system entirely and record and value what really matters. That is what our proposed NHS reforms are about, and I welcome the opportunity to outline how those reforms will have an impact on epilepsy. We want to strip out unnecessary targets and bureaucracy and replace them with a system that recognises and rewards quality and overall patient outcomes.

We have already held a consultation on the new outcomes framework. I am pleased that a number of neurological organisations contributed to that process, including the Joint Epilepsy Council and Epilepsy Action. The framework will drive a better approach to service design and performance management across the NHS, including on issues of speed and accuracy of diagnosis. It will be the engine of change, giving us clear and coherent structures of accountability to drive radical improvements in standards from the bottom up, not the top down. My hon. Friend the Member for Southport (Dr Pugh) spoke about accountability, and I will say more on that later.

I am determined that specific issues to do with neurological conditions, and epilepsy in particular, should be appropriately reflected in the composition of the outcomes framework, and I will make that point to the NHS medical director, Bruce Keogh. I encourage other hon. Members who are concerned about this matter to ensure that they also make such representations. I undertake to look at precisely what contribution the Care Quality Commission can make; clearly there are potentially many thematic reviews that it could undertake—far more than it could carry out in any one year. It is a powerful tool for levering-up quality.

In his opening remarks, the hon. Member for Blackpool North and Cleveleys mentioned transition care. There must be significant improvement in that, because the transition from care in childhood to adult care is currently not good enough. We must ensure that we pick up and learn from the work carried out by the national director for children’s services, who has published guidance on improving the transition between child and adult services to ensure that everything possible is done to maintain people’s health and well-being. The subject of transition comes up more often that anything else, and we must ensure that we have a better, clearer focus on the transition between children’s services and adult services, and between primary and secondary care.

[Mr Sam Gyimah (East Surrey) (Con)]

The National Centre for Young People with Epilepsy is in my constituency and it is interesting to hear the Minister mention transition care. Would he be open to considering a clinical standard for paediatric epilepsy?

[Paul Burstow]

The Government proposals include a national quality board that will be responsible for considering potential areas for quality standards, and NICE will take that work forward. There is already a number of standards in the national service framework, but I will certainly give further thought to the hon. Gentleman’s point.

A number of hon. Members have mentioned information, and the Government want to give patients and the public all the information that they need to make informed choices and hold the NHS to account. We will shortly be launching a new information strategy to improve radically the range and quality of information available to patients, professionals and the public, so that there is increased transparency and strengthened accountability in the system.

[Teresa Pearce (Erith and Thamesmead) (Lab)]

The Minister mentioned information for patients, but one area of concern that has not been mentioned today is that involving women of child-bearing age. Currently, such women are meant to be counselled by their GPs, but sometimes that counselling is patchy or non-existent. One successful drug creates a significant increase in baby malformations, so a woman who finds herself pregnant must decide whether to carry on taking the drug with a risk to the baby, or stop taking the drug with a risk to herself. The risk of maternal death is almost 10 times higher for women with epilepsy. What can be done to make GPs take seriously the role they have when women are facing that terrible decision?

[Paul Burstow]

I am grateful to the hon. Lady for raising that point. In the proposed quality and outcomes framework for 2011-12, NICE has recommended a new indicator to encourage more GPs to talk to women with epilepsy about the drug risk during pregnancy. I hope that that will focus on the point that the hon. Lady has rightly raised.

Patients should be able to check up on local services right down to the performance of individual consultant teams, so that they can, if necessary, vote with their feet. That not only gives patients more control, but it exerts pressure on different parts of the NHS to make continuous improvements. On a professional level, it is important to ensure that there is better recording and sharing of information about services.

My hon. Friend the Member for Southport and the hon. Member for Pontypridd (Owen Smith) talked about the lack of information about neurological services at local level. I can tell them that the Department has developed a reference data set for local commissioners to use. That will give them a standard set of information to request from local providers about the different stages of care for someone with a neurological condition. Reference has been made to a dearth of data. I can tell hon. Members that there are data relating to the primary reasons for hospital admissions, readmission rates, average lengths of stay, out-patients, first to review rates and programme spend for neurology through the payment by result rates. All that information is on NHS Comparators, which is part of the NHS website. It is an online tool that presents all that information in a way that is accessible not just to professionals, but to the third sector. One of the challenges that I pose to hon. Members and to organisations with an interest in this field is to make more use of NHS Comparators, because it is a valuable tool for challenging commissioners and holding them to account and for ensuring that there is competitive localism—a real sense of comparing one area to another to ensure that we drive up standards and learn from the best.

[Priti Patel]

We have heard in the debate that epilepsy is a very subjective condition—it affects people in many different ways. We have also heard about the data challenges, and the Minister has kindly given us some insight into what comparators are out there. The fact is, though, that if someone is a sufferer, is on their own and is in desperate need of care and access to information, hearing about data comparisons is not necessarily of practical help. What practical measures exist for sufferers and for organisations that can give genuine support and guidance to epilepsy sufferers?

[Paul Burstow]

The hon. Lady makes a very important point. I was talking about using the data to improve standards, but we also need to ensure that, through NHS information prescriptions, we provide better and more timely information to people. Further work is also necessary in that area.

A message that comes through strongly is that commissioning is key to better epilepsy care. We believe that placing decision making much closer to the patient through general practice consortiums will unlock new opportunities and lead to more sensitive and responsive decision making about care and treatment pathways. Some patient groups and some hon. Members in this debate have expressed concern about the experience and knowledge of GP commissioners in designing epilepsy services. Let me say a little more about that.

The NHS commissioning board will have a vital role to play in supporting consortiums. It will set commissioning guidelines based on clinically approved standards developed by the National Institute for Health and Clinical Excellence. In addition, the long-term conditions delivery support team will work closely with new directors of commissioning, their commissioning boards and GP consortiums to build skills and awareness. For example, the team has already developed a new commissioning pack, bringing together information that commissioners will need to design good epilepsy services.

My hon. Friend the Member for Southport has asked me, within about four days of the close of consultation on the White Paper, to describe in full and complete detail every aspect of the new accountability regime for the new system. I will not do that in the debate today, because that would not do justice to the 5,000 respondents to the consultation. The Department is in the process of properly considering the responses to the consultation and we shall give a considered and proper response. What we have done so far is set out clearly the direction of travel and reform. I think that my hon. Friend has conflated two or three things in his test of accountability: professional accountability, accountability to the public and accountability to other organisations. We will make clear, when we set out the next steps to the reforms that we have proposed in the White Paper, precisely how each part of the accountability conundrum that he posed is properly addressed.

[Dr Pugh]

I thank the Minister for that response. He has spoken about frameworks and about commissioning standards. I hope that he will go on to speak about what happens when the frameworks are not in application and when the commissioning standards are not observed, for whatever reason. The only thing that I have heard him say so far is, “We’re going to have a competitive local environment. People can vote with their feet.” That is an awfully London-centric view, because in many areas of the country, that is not a realistic option.

[Paul Burstow]

I think that my hon. Friend perhaps needs to reflect a little further on the White Paper proposals and what I have said in the debate, because what we are actually talking about is not competition in terms of people always choosing to go somewhere else, but in terms of the ability to see what somewhere else looks like and make a comparison and to ask commissioners locally why they are not commissioning to the same standard. It is as much about that as about being able to move around the country, and certainly that is what we are determined to deliver.

[Mr Gyimah]

Will the Minister give way?

[Paul Burstow]

Only one more time, because I want to ensure that I have done full justice to the debate.

[Mr Gyimah]

I thank the Minister for his comments on commissioning. In that context, I understand that there will be 150 clinical standards against which commissioning will be judged. It would be helpful for people who suffer from epilepsy to know what weighting and priority will be given to those clinical standards as GPs deal with commissioning.

[Paul Burstow]

The 150 quality standards that NICE will be responsible for producing will make up a key document that the NHS commissioning board will use to draw up the clinical standards that it will use to drive commissioning activity and hold GP consortiums to account for delivery. They will be rewarded against the outcomes that they achieve. That is an important part of the accountability mechanisms that will be in place.

Hon. Members on both sides of the Chamber talked about the need for early diagnosis and correct diagnosis. Where epilepsy is suspected or where there are issues about the management of the condition, patients should be swiftly referred to specialists to confirm the diagnosis and agree treatment options. I am very sympathetic to the calls made today for more specialists and good access to appropriate diagnostic equipment.

A number of hon. Members rightly mentioned specialist epilepsy nurses, who are particularly vital to providing patients with a stable presence in their treatment and ongoing care. I pay tribute to their work in supporting and advising patients and helping them to manage their condition effectively. However, it is not for me, as a Minister, to make decisions on how local NHS organisations spend their money. I hope that I have satisfied my hon. Friend the Member for Southport, who thought that I might say that. Centralised, top-down management is the problem, not the solution. The new system is quite clear. GP consortiums and NHS trusts will have outcomes to meet for their patients. They must consider, in the light of their own circumstances, whether recruiting more specialist staff or investing in new equipment is the best way to achieve those outcomes.

However, on the question of research and whether we need to test whether the evidence is robust, the evidence is clear, and it is clear in the guidance from NICE itself, that specialist nurses are important for helping people living with epilepsy. The guidance is clear and should be taken into account by those commissioning services. The long-term conditions delivery support team has developed a guide to help commissioners to make the strong business case for the very important investment in specialist epilepsy nurses.

I want to say something about innovation and efficiency, because that is not just about how many consultants and nurses are in a hospital; it is also about how well they are used to support people in the community. The best neurology departments are adapting, evolving and improving their working practices to meet their populations’ needs in the context of financial constraints and the need to increase productivity. There is a particular role for neuroscience networks in bringing specialist teams together with general practice and wider sources of support. A lot of work is under way in relation to, for example, the QIPP—quality, innovation, productivity and prevention—programme, whereby teams of clinicians are working together to promote innovation and drive out inefficiencies.

I shall give a couple of examples of where things are changing on the ground. In Dorset, there is a county-wide service whereby a consultant neurologist and specialist epilepsy nurses work with GPs and community teams across the region to give better support. In east Kent, networks of GPs with a special interest are joining forces with specialist nurses and local neurology services to deliver community-based epilepsy care. Those are highly effective models and they are the type of models that should be followed in the rest of the country; I certainly question why they are not.

Generic substitution was raised by the hon. Member for Witham (Priti Patel), the hon. Member for Pontypridd and others. As has been said, that is subject to consultation at the moment and I cannot pre-announce the conclusions, but I certainly share the concerns about consistency of supply that the hon. Member for Blackpool North and Cleveleys expressed.

Appointing a national clinical director is certainly something that we need to consider, particularly in the context of the implications of the reforms that the White Paper proposed, and we will consider that carefully.

Our proposals for the NHS will create the building blocks for real and positive change: a new transparency and consistency of purpose, built around an outcomes framework; a more responsive approach to commissioning led by GPs and local government; and much greater influence for patients through better information and choice and control over their care. I look forward to discussing these matters further with hon. Members through the all-party group and with the various organisations that represent the interests of people with epilepsy. I also look forward to taking the White Paper proposals forward, because I genuinely believe that they will transform services from the bottom up, making a real difference to the quality of life of people with epilepsy.