Adult Social Care

Paul Burstow Excerpts

Tuesday 16th November 2010 Written Statements

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

We are today publishing the Government’s plans for adult social care services—“A Vision for Adult Social Care: Capable Communities and Active Citizens”. Alongside the social care vision, the Department has launched a consultation on “Transparency in outcomes: a framework for adult social care”—a new strategic approach to quality and outcomes in adult social care.

The vision sets the context for the future development of social care services. It is the first step, followed by the Law Commission’s work on reforming the legal framework next spring and the Commission on Funding of Care and Support next summer, towards the White Paper on care and support at the end of 2011. This will set out plans to establish a modern and financially sustainable framework for care and support, and the requirements for new legislation.

The vision sets out a new direction for adult social care, putting people, personalised services and outcomes centre stage and returning social care to its foundations of reciprocity and constructive action by individuals on behalf of the whole community. It sets a challenge for councils to provide a personal budget, preferably as a direct payment, for everyone who is eligible by April 2013. As councils devolve commissioning responsibility to individuals via personal budgets, we expect them to work with providers to broaden the market of care services, particularly small social enterprises, so that individuals can exercise real choice over care services. A consequence of personalisation is that people will increasingly take their own decisions about how to balance their new freedoms with a sensible approach to risk. The vision also calls for an increase in preventive activity in local communities, to keep people independent for longer and contribute to building the big society.

The vision includes examples of how councils, working in partnership with local organisations and people, can develop innovative, efficient services. It encourages people to look to themselves and their communities, not just the state, for solutions and in doing so to grow the big society. It alerts councils to their new leadership role in health improvement and health and well-being boards and the opportunities this offers.

Councils should use the solid basis for social care funding delivered by the recent spending review as a springboard to reform services. In recognition of the pressures on the social care system in a challenging local government settlement, the coalition Government have allocated an additional £2 billion by 2014-15 to support the delivery of social care. This means, with an ambitious programme of efficiency, that there is enough funding available both to protect people’s access to services and deliver new approaches to improve quality and outcomes.

Plans for service reform were outlined in the social care consortium’s partnership agreement, “Think Local, Act Personal” launched at the national children’s and adult services conference on 4 November 2010. Led by the Association of Directors of Adult Social Services and the local government group on behalf of 21 social care organisations, it describes the next steps for councils to personalise services and provide more comprehensive information for people who need advice on care and support services. In addition to this, the consortium has also produced a number of best practice guides.

The key principles for adult social care described in the vision are:

prevention: empowered people and strong communities will work together to maintain independence. Where the state is needed, it helps people to retain and regain their independence;

personalisation: individuals not institutions take control of their care. Personal budgets, preferably as direct payments, are provided to all eligible people. Information about care and support is available for all local people, regardless of whether or not they fund their own care;

partnership: care and support delivered in a partnership between individuals, communities, the voluntary sector, the NHS and councils, including wider support services, such as housing;

plurality: the variety of people’s needs is matched by diverse service provision, with a broad market of high-quality service providers;

protection: there are sensible safeguards against the risk of abuse or neglect. Risk is no longer an excuse to limit people’s freedom;

productivity: greater local accountability will drive improvements and innovation to deliver higher productivity and high-quality care and support services. A focus on publishing information about agreed quality outcomes will support transparency and accountability; and

people: we can draw on a work force who can provide care and support with skill, compassion and imagination, and who are given the freedom and support to do so. We need the whole work force, including care workers, nurses, occupational therapists, physiotherapists and social workers, alongside carers and the people who use services, to lead the changes set out in the vision.



Copies of the vision and the consultation document have been placed in the Library and copies are available to hon. Members from the Vote Office.

Lewisham Healthcare NHS Trust

Paul Burstow Excerpts

Friday 12th November 2010 Commons Chamber

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

I begin by congratulating the hon. Member for Lewisham West and Penge (Jim Dowd) on securing this debate and thanking him for his kind words of introduction. I, too, have fond memories of those days in the Health Committee, on which we served together, inquiring into a variety of issues.

May I take this opportunity to record the Government’s clear recognition of the hard work and dedication shown by NHS staff in Lewisham and beyond? The hon. Gentleman documented the many successes of the trust over a number of years, and clearly set out his concerns, analysis and interpretation of the events that led him to make these points in the House today.

I have to tell the hon. Gentleman that it is not appropriate for me, as a Minister, to comment on the appointment of the chair of Lewisham Healthcare NHS Trust—or, for that matter, any trust. The process for appointing NHS chairs is very clear and has not changed since May this year. The Secretary of State for Health, whoever they may be, currently delegates powers of appointment to the Appointments Commission. First, all vacancies are advertised publicly through appropriate channels. Selection panels then assess each application, with representations from the organisation and an independent public appointments assessor. The final decision is made by the Health and Social Care Appointments Committee. The Appointments Commission has responsibility for making sure that the process is fair, open and impartial, and that appointments are based on merit alone. It is not a process that politicians, on either side of this House, should seek to influence.

I checked with the trust and the Appointments Commission—I am sure that the hon. Gentleman would expect no less—and they both told me that they have clearly followed the processes laid down. If there are ever any concerns that due process has not been followed, this should be reported to the Commissioner for Public Appointments, who regulates and audits the process. Clearly, the hon. Gentleman needs to look again at the response he has received and consider the matter further. It is not, I am afraid, something for Ministers to intervene in or comment on. However, this debate is on the record, and I will ensure that all parties to the process are aware of the points that he has made. It is an important part of these debates that such matters are drawn to the attention of the relevant authorities.

By way of clarification, I remind the hon. Gentleman that it is, as he said, exceptional for chairs to be appointed beyond two terms. This is not a sacking. As he says, there is no right to automaticity in succession from one term to another when it comes to the end of the second term. In the year ending March 2010, only three chairs across the whole NHS were reappointed for a third term. That is equivalent to only 0.36% of all appointments made that year—fewer than one in 2,500 appointments. Securing a third term as chair is extremely rare, and the decision should not be seen as any judgment on the incumbent’s performance. As the hon. Gentleman rightly observed, the performance of the trust is exemplary.

I should like to take this opportunity to pay tribute to Mr Gnanapragasm for his work and his public service in his role as chair, and for the fact that he is maintaining that role during the ongoing transition. He has served Lewisham Healthcare NHS Trust well for eight years—the hon. Gentleman set out that record very clearly—and I wish him the very best with what he does next.

In the new year, as the hon. Gentleman said, the current chair of Bromley PCT, Ms Butler, will take up the position. I believe that she has an excellent reputation, and I know that she is looking forward to the opportunity that this new role presents. As the hon. Gentleman knows, it is an interesting time in Lewisham in respect of health care. On 1 August this year, the trust merged with Lewisham Community Health Services to create Lewisham Healthcare NHS Trust. This is one of the first integrations of its kind in the country, bringing into the trust 700 people working in the community. That will afford the people of Lewisham a seamless link between primary, community and hospital care. It will therefore be a busy time for the senior managers in building on this and continuing to improve health care for the hon. Gentleman’s constituents. A strong and well-supported chair is a key element in delivering that transformation.

I should like to put on record my best wishes to Ms Butler for every success in this new role. I am encouraged that the hon. Gentleman has been favourably impressed on the occasions he has met her. I am sure that on future occasions he will have the opportunity to develop the important good working relationships that hon. Members in all parts of the House need to have with those charged with managing NHS organisations.

In a debate such as this it would be inappropriate for me to comment on the detailed process. I hope that the hon. Gentleman will accept that I have set out the position as it stands. I undertake to ensure that his concerns are passed to those responsible for the process, and I thank him for raising these matters today.

Question put and agreed to.

Oral Answers to Questions

Paul Burstow Excerpts

Tuesday 2nd November 2010 Commons Chamber

[Ian Swales (Redcar) (LD)]

1. What recent discussions he has had on the likely effects on mental health patients of changes to health care provision arising from the comprehensive spending review.

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

The Government confirmed their determination to protect the most vulnerable in our society by protecting both the NHS and social care in the recent spending review. The Chancellor also announced funding to expand access to talking therapies.

[Ian Swales]

Can the Minister give assurances that the Department of Health is having full discussions with the Department for Work and Pensions about the problems that those with mental health problems experience in returning to work?

[Paul Burstow]

I thank my hon. Friend for that question. I can certainly assure him that those discussions are ongoing and regular, and that we work very closely with colleagues, both ministerial and official, in the DWP. Indeed, we are evaluating two of the Department’s collaborative projects on employment advisers working with people recovering from depression and anxiety disorders.

[Gloria De Piero (Ashfield) (Lab)]

The Rokerfield mental health day care centre in my constituency is under threat of closure. Does the Minister share my disappointment that the county council cabinet members responsible for making that decision have all ignored my invitation to speak to service users before coming to their decision? Will he urge them to visit users first?

[Paul Burstow]

I thank the hon. Lady for her question. I am sure she would agree that it is important that we ensure that there is adequate funding in social care so that it is possible to continue to support services of this sort. That is why I am sure she would join me in thanking the Chancellor for the statement he made two weeks ago, when he confirmed that an additional £2 billion will be invested in social care. On her specific question, I will look at the matter in closer detail and write to her.

[Margot James (Stourbridge) (Con)]

My hon. Friend will be aware of the number of people in the criminal justice system with severe mental health problems—they make up some 15%, according to the Sainsbury Centre for Mental Health. In my area of Dudley and Walsall, almost 2,000 people are on probation or in prison, yet only 40—just 2.5%—are in contact with mental health services. Will he discuss with his colleagues in the Ministry of Justice what we can do to improve that situation?

[Paul Burstow]

I am grateful to my hon. Friend for that question, which underscores the legacy that the Government have been left in terms of the paucity of these services as they are now and why we need to work closely with colleagues in the Ministry of Justice, as indeed we are doing, to ensure that we provide good quality mental health support for offenders, both in prison and when they leave it.

[Mr Tom Clarke (Coatbridge, Chryston and Bellshill) (Lab)]

Can the Minister assure us that he will encourage his departmental colleagues to ensure that, despite the influence of the comprehensive spending review, the confidential inquiry and the learning disabilities public health observatory will go beyond March and until the work is concluded?

[Paul Burstow]

The right hon. Gentleman does a lot of work in the area of learning disability. Indeed, we had a good debate in Westminster Hall earlier this year on this matter, in which I indicated the Government’s support for those observatories. We believe they play a very important role in our understanding of the issues.

[Kerry McCarthy (Bristol East) (Lab)]

2. What progress his Department has made in the provision of specialist neuromuscular care in Bristol; and if he will make a statement.

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[Julian Sturdy (York Outer) (Con)]

6. What assessment he has made of the likely effect on cancer survival rates of the implementation of his proposed reforms of the NHS.

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

Our health spending now matches European levels, but our cancer survival rates do not match European levels. If we brought survival rates up to the best in Europe, we could save up to 10,000 lives a year. Our updated cancer strategy will set out how our NHS reforms will improve cancer survival rates.

[Julian Sturdy]

Does my hon. Friend agree that local charity groups, such as York Against Cancer in my constituency, play a vital role in the fight against that disease? Can he assure me that the Government will continue to support and work with the voluntary sector to provide the very best cancer care?

[Paul Burstow]

The Government certainly work closely with the voluntary sector in many ways to promote and develop our approach to cancer services. We value the work of organisations such as York Against Cancer because of the support that they provide through information and support for people diagnosed with cancer and their families. It is very important that we continue to support such activities.

[Ms Diane Abbott (Hackney North and Stoke Newington) (Lab)]

Does the Minister agree that cancer survival outcomes are very closely linked to poverty and inequality? Although I concede that inequality widened under the previous Government, how can the present Government hope to bear down on poverty and inequality in the context of an overall policy framework that envisages a steep rise in unemployment, with all the poor health outcomes associated with that, and a commitment to protecting health spending, which is unravelling by the day?

[Paul Burstow]

I am grateful to the hon. Lady for her question, and particularly her acknowledgement of the previous Government’s failure to close the health inequality gap. The Office for Budget Responsibility identified that there will be growth in employment during the spending review period, and this Government are determined to make sure that we see that growth take place. When it comes to cancer survival, what we need to do most, and most importantly, is make sure that people are aware of the signs and symptoms of cancer, because if they are, they present earlier, they get a diagnosis earlier and their survival chances are greatly improved.

[Sir Alan Beith (Berwick-upon-Tweed) (LD)]

7. What mechanisms he plans to introduce for public access to financial information about general practices under his Department’s proposals for GP commissioning.

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[Jim McGovern (Dundee West) (Lab)]

10. What assessment his Department has made of the effect on cancer patients of changes to the maximum waiting period for cancer treatment.

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

I am grateful to the hon. Gentleman for his question, because it allows me to make it absolutely clear that the Government have not changed the waiting times standards for cancer services. The revision to the NHS operating framework for this year confirmed that the NHS is expected to continue to ensure that people with suspected cancers are seen within the agreed waiting times standards.

[Jim McGovern]

I thank the Minister for his response. I am sure that he agrees with me that the policy brought in by the previous Government to ensure guaranteed minimum waiting times for cancer patients made great strides forward, not only for patients but for their families. May I urge him to ensure that this is not changed by any Government policy changes and that guaranteed minimum waiting times remain at the forefront of treatment for cancer patients?

[Paul Burstow]

I am grateful for the question. The answer, of course, is yes, we are determined to maintain these targets because we believe they make a difference.

[Rehman Chishti (Gillingham and Rainham) (Con)]

Will the Minister ensure that patients who currently do not have access to a clinical nurse specialist will have such access? Research suggests that it considerably improves experiences and outputs.

[Paul Burstow]

The hon. Gentleman is right that we need to ensure that we invest in cancer specialists, and in the past six months the coalition Government have set out a number of steps that we will take, and are taking now, to improve cancer survival rates and cancer services. Raising awareness of signs and symptoms, new screening methods for bowel cancer and improving the number of specialist staff are just some of the things into which the Government have already started putting additional resources, in order to make a difference.

[Mr Dominic Raab (Esher and Walton) (Con)]

11. What steps he is taking to reduce administrative costs in the NHS.

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[Heather Wheeler (South Derbyshire) (Con)]

12. What steps he is taking to prioritise funding for dementia research from his Department’s research budget.

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

Dementia is a terrible disease that devastates the lives of thousands of people in this country, and research is clearly key. The coalition programme signalled the Government’s intention to prioritise funding for dementia research. The spending review confirmed that and committed to real-terms increases in spending on health research.

[Heather Wheeler]

Will the Minister expand on the future funding of mental health trusts? We all know the statistic that one in four people suffers from mental health problems in their lifetime, and it is a great problem in South Derbyshire.

[Paul Burstow]

The hon. Lady is absolutely right that it is important that we are clear about that. Currently, funding for mental health services comes via primary care trusts, and from 2013-14 onwards allocations will be provided via GP commissioning consortiums.

[Andrew Miller (Ellesmere Port and Neston) (Lab)]

I welcome the hon. Gentleman’s first answer, but may I ask him to go further and place in the Library a list of all the areas of principal research that the Government are to fund, both directly and through research charities? It would be incredibly helpful for the public to understand exactly how the Government intend to handle the research programme for dementia and all other areas of health.

[Paul Burstow]

I am grateful to the hon. Gentleman for his question, because I chair the ministerial group that is considering how we can improve and increase the supply of research. It is examining a number of matters, including how we can ensure that there is an increase in the volume of research, how we can engage the public—he is absolutely right about that—and how we can translate research into practice quickly. Next year we will set out more detailed proposals and publish the details of all the research programmes that are under way.

[Natascha Engel (North East Derbyshire) (Lab)]

13. What plans he has for future public funding for the hereditary breast cancer helpline.

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[Mike Freer (Finchley and Golders Green) (Con)]

T5. Occupational therapists are crucial in effective rehabilitation. Will the Minister advise me on what role he sees for occupational therapists in using the £70 million investment in reablement announced by the Government?

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

I am grateful to the hon. Gentleman for drawing attention to the Government’s commitment to develop reablement services, especially the win, win, win that they can deliver for the individual who gets back on his feet, gets his confidence back and leads his life independently; for the social services departments, which do not have to provide ongoing support; and for the NHS, which does not have to deal with readmissions. Occupational therapists have a vital role to play in providing good quality support following discharge and are therefore critical players in the development of reablement services around the country.

[Mr Barry Sheerman (Huddersfield) (Lab/Co-op)]

T9. Is it appropriate for my constituents in Huddersfield to be lectured about healthy living standards by a Minister who is out of condition, overweight and a chain smoker?

Suicide and Self-harm in a Recession

Paul Burstow Excerpts

Wednesday 27th October 2010 Commons Chamber

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

I congratulate the hon. Member for Bridgend (Mrs Moon) on securing the debate. I want to pay tribute to her, and to thank her for the work that she does in leading the all-party group on suicide and self-harm prevention. Her name sticks in my mind because, when I first became a Minister, I answered many questions that she had tabled on these issues. When I saw that she had secured this debate, I was conscious that she had been pursuing this matter vigorously and diligently for many a year. She brings that important issue to the House’s attention tonight. The fact that she has constituency experience of the matter, given the tragedies that have taken place there in recent years, lends added weight to her argument.

The hon. Lady was right to bring us back to the personal stories behind the statistics, and to recognise that, while strategies are important, they offer little consolation to those who are affected personally and directly by suicide and self-harm. She rightly paid tribute to the work of the Samaritans and other organisations. She was also right to highlight the need to share best practice and research; I entirely subscribe to that view.

There is plenty of evidence across the world that in times of recession and high unemployment, rates of mental illness and suicide tend to rise. In this country, Office for National Statistics figures tell us that suicides rose 6% between 2007 and 2008 when the recession began to bite. Tomorrow, as the hon. Lady said, the Department of Health publishes its “Mortality Monitoring Bulletin”, updated to include the data for 2009. I am unable to share it with the House now, but it will be in the public domain then. This will include new information on suicide rates, giving us the full picture of how the course of the recession affected the nation’s public health. The figures illustrate in the most dramatic way the human tragedies that took place in the economic downturn.

We now need to ensure that economic recovery is matched by psychological recovery from a long and painful recession. The 2010 Legatum Institute’s report, published earlier this week, showed that there is plenty of work to do. It gave a salutary warning that in terms of happiness and the general well-being of our fellow citizens, the UK is sorely lacking compared with other countries. In our services, too, across society, we have to ensure that we start valuing GWB, or general well-being, as highly as we do GDP. Specifically, as the hon. Lady argues, we must do everything we can to return to the pattern of declining suicide rates that we saw for most of the last decade.

To help us do so, I can first confirm for the hon. Lady that we will publish a new suicide prevention strategy in the new year. As the old strategy comes to an end, we need to update it and make sure that it is fit for purpose. We will certainly take into account the points she has made. I will want to look at the studies to which she referred and ensure that suicide prevention is referenced in the forthcoming mental health strategy, too.

The new prevention strategy for suicide will include new measures, particularly those to support high-risk groups. I will ask officials to discuss the hon. Lady’s suggestion of how best to collaborate with the devolved Administrations to ensure that we share learning and best practice across the countries. The strategy will also look at how we can restrict access to some of the methods people use to self-harm or commit suicide. The hon. Member for Pendle (Andrew Stephenson), who talked about a particular constituency example, illustrates why we need to erect barriers, quite literally, to deal with suicide hotspots. I am shocked and appalled by the attitude that the business in his constituency adopted to that necessary investment in prevention. The strategy will also involve working with all forms of media to ensure that we get responsible reporting to prevent copycat suicides.

Let me say something about the issues raised about the internet and how it can be used to promote suicide and provide information about methods. There is now greater clarity in the law. Section 59 of the Coroners and Justice Act 2009 simplified and modernised the law on encouraging or assisting suicide by online means. The Government continue to work with internet service providers through the UK Council for Child Internet Safety to remove harmful or illegal content. We continue to work with search engine providers, encouraging them to link only to appropriate, supportive websites when somebody uses “suicide” as a search term.

There is clearly a difficulty in how to strike the balance correctly, which does not really lend itself to arbitrary Government action. Banning all discussions and content on suicides from sites popular with young people risks driving them to parts of the internet that are far less safe and certainly not moderated, so more harm could be done. There is a need to update existing guidance, and we plan to publish updated guidance for technology providers to keep children safe online. We expect internet providers to follow that advice and remove harmful content as quickly as possible. I will certainly look at the hon. Lady’s points about the provision of helpful advice on the Department of Health and associated websites.

[Andrew Percy (Brigg and Goole) (Con)]

If the organisations that we are trying to get to remove content refuse to do so, will the Minister name and shame them?

[Paul Burstow]

I will certainly consider that, and we will discuss with colleagues across Government the approach and tone we should adopt with ISPs.

In reducing suicides, we have a specific focus on the health service, but we need a much broader programme of work across Government to improve general well-being while ensuring that the right services are in place for people who experience mental illness.

Everything that we know about the pattern of suicide rates demands a twin-track approach covering both clinical and societal issues. On the clinical side, we will do more to ensure that the NHS gives people the support that they need, and a new outcomes framework should make clear that the NHS must give mental health services the same priority as physical health services. There should be no difference in the esteem that we attach to those services. That approach will help us to shift cultures and priorities, ensuring that accident and emergency and hospital staff are trained to deal with self-harm or other indications of poor mental health, and are able to refer patients to the appropriate services rather than creating the revolving door to which the hon. Lady referred. GPs also need to be properly trained to help them to identify those at risk of suicide, and to provide appropriate drug treatment and psychological support in line with National Institute for Health and Clinical Excellence guidelines.

The hon. Lady was right to say that talking therapies are a critical part of the onward journey for those at risk. In 2009, the last Government initiated the Improving Access to Psychological Therapies programme. Where they exist, IAPT services work extremely well, but coverage around the country is still patchy. Earlier this year, I was able to announce additional investment of £70 million in the current financial year to ensure that we could continue the roll-out of IAPT, in order to deliver a commitment in the coalition programme. I am pleased that the Chancellor confirmed last week that we are now committed to investing more additional resources to allow the continuing expansion of IAPT up to 2014, including its extension to cover people of all ages rather than just those of working age.

However, we must not over-medicalise what is also a social and cultural issue. The Foresight report from the Office of Science shows that mental health problems are closely linked to a range of social problems. Debt and unemployment are key triggers for suicide, as are social isolation, family breakdown and substance misuse. Those are best addressed and best prevented in the community, not in the clinic. In developing our new mental health strategy, we will also consider how we can change cultures and develop resilience and relationships in communities to prevent mental illness and suicides.

We will, for instance, target those with alcohol or drug problems, and create better links between treatment services and mental health services. We will support vulnerable families by providing more health visitors and family nurse partnerships to give children the stable upbringings that provide a basis for good mental health in later life. We will also address the stigma associated with mental illness. It is that stigma—that reluctance to express emotions and accept help, advice and support, especially among men—that can be such a serious cause of the problems in our mental health services and, ultimately, even a cause of suicides. We also need to harness the expertise and experience of the third sector and voluntary groups to create local grass-roots plans and action to support better public mental health.

One of the biggest priorities will be returning more people with mental health problems to employment. We know that long-term unemployment has a hugely corrosive effect on a person’s mental health. Those who are unemployed for an extended period are 35 times more likely to commit suicide than those in stable employment. The sad legacy of the last decade has been the huge rise in the number of people trapped on benefits, along with all the damage that that does to a person’s self-esteem and self-worth.

We will build on the good links that have been established in some areas between IAPT and employment services. Many primary care trusts are already making connections with their local Jobcentre Plus, and I want to ensure that such relationships are formed in all IAPT centres as the roll-out continues. However, we also need businesses and organisations to invest in the good mental health of their staff, particularly during times of anxiety and change. Research shows that employers who invest in staff well-being receive a ninefold return on their investment in terms of increased productivity and reduced sickness absence. We want to drive that message home in the context of the employers’ occupational health responsibilities.

The human effect of dealing with the deficit crisis is not something that the Government can take lightly. I know that many in the public sector will be feeling anxious and concerned as a result of the spending review, and that demands the utmost vigilance from us in our support for people’s mental health in the months and years ahead. We are committed to mending the psychological as well as the economic scars of the past recession, improving mental health services, promoting greater community resilience to mental illness, and doing much more to help unemployed people regain their confidence and return to work.

I am grateful to the hon. Lady for securing the debate, and for the leadership that she provides in this regard. I hope that we shall be able to deliver the changes that we all want to see, and ensure that we have good-quality mental health in this country.

Question put and agreed to.

Rarer Cancers

Paul Burstow Excerpts

Wednesday 27th October 2010 Westminster Hall

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

I am grateful for the opportunity to respond to the debate. I congratulate my hon. Friend the Member for Manchester, Withington (Mr Leech) on securing it and I particularly thank him for giving me notice of the focus of the debate, because, as he rightly says, the range of issues that could be covered in a debate on rare cancers is very wide. I hope that my remarks will therefore address his particular concerns.

The argument that my hon. Friend makes about the iniquities facing people with rare cancers is a clear riposte to the challenge posed by those who say that the NHS needs no reform because it works perfectly. That is often said to me, but my hon. Friend has set out a compelling case why there are areas in which scrutiny, change and reform are undoubtedly necessary. In fact, there are significant failings in the current system of drug pricing and access. The Government are determined to put them right so that we can help more people to get fair access to drugs and treatments that will help them.

In that regard, my hon. Friend rightly draws attention to today’s launch of the cancer drugs fund consultation. It is an important moment for the 27,000 people diagnosed with rarer cancers each year. The £200 million a year investment that we shall be making from 1 April 2011, on top of the £50 million that started to go into the system from 1 October this year, means that the NHS will be in a position to provide more support than it has been able to in the past. We will ensure that more patients get drugs and treatments not otherwise available on the NHS.

The Rarer Cancers Foundation has said that our interim funding for the cancer drugs fund will benefit more than 2,000 cancer patients this year alone. Clearly, the £200 million investment that we are making from next April will benefit thousands more. My hon. Friend—

[Emily Thornberry (Islington South and Finsbury) (Lab)]

Will the hon. Gentleman give way?

[Paul Burstow]

I am afraid not, because in these debates one has to have obtained the permission of the hon. Member who secured the debate and then the Minister. For that reason, I cannot give way.

[Emily Thornberry]

Please excuse my inexperience. I have just one question—

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[Paul Burstow]

I would be more than happy to discuss it with the hon. Lady after the debate.

My hon. Friend is right to stress that we need to ensure that the fund and the eventual value-based pricing approach are accessible and intelligible. He is right to challenge all of us to test our own understanding of QALYs and technology appraisals. My officials did supply me with a plain English version of what QALYs are, but I will not detain hon. Members by reading it out today. My hon. Friend is right to say that MPs need to understand the detail of how the new cancer drugs fund will work in practice, so that they can advise constituents effectively and their constituents can make the maximum use of it.

The rarer cancers toolkit, which my hon. Friend described, contains a lot of useful information to help MPs to understand cases brought to them by their constituents. I place on the record my gratitude to MDS UK for taking the time to develop it. I hope that it is a successful toolkit that is widely taken up and used by colleagues in the House.

In addition, today’s consultation launch is an ideal opportunity for hon. Members to interrogate the proposals, offer constructive challenges and add their own thoughts on how we can take the issue forward. I certainly encourage my hon. Friend and the hon. Member for Gillingham and Rainham (Rehman Chishti) to consider it in more detail and be prepared to comment in more detail. I will ensure, however, that the comments made about it today are fed into the consultation.

I was asked a specific question about the role of clinical nurse support. Every cancer patient should have access to appropriate care, support and information. We are considering the evidence to see whether one-to-one nurse specialist support can improve care for cancer patients, as well as ensuring that there is efficient use of NHS resources. We shall say more about that as we publish our NHS cancer reform strategy review later this year.

My hon. Friend rightly highlighted value-based pricing as one of the ways in which we can address a number of the issues. The cancer drugs fund provides us with a bridge to that more sustainable system, which we hope to have in place from 2014, when the current pharmaceutical price regulation scheme ends. Our intention is to develop a system that makes a much closer link between the price that the NHS pays and the value that a new medicine delivers. That is the key to securing better access to medicines for patients and a better deal for the taxpayer.

Developing a new medicines pricing system is clearly not a simple task. It is important to ensure that when the new system comes in, we get it right. There is international experience on which we can draw, but it will be groundbreaking work and we shall want to engage with stakeholders to ensure that we get it right. I agree with my hon. Friend that the new pricing system must be carefully designed so that it provides fair outcomes for all patients, including those with rarer forms of cancer.

There is, though, a balance to be struck, as I am sure my hon. Friend would acknowledge. The pricing model needs to support innovation in the pharmaceutical sector; it needs properly to reward research and development in respect of new treatments. We need to ensure that the incentives are there to encourage firms to invest in the future treatments that will fulfil unmet needs and save and improve people’s lives. However, we also need to deliver better value for the taxpayer. In the current financial climate, that is even more the case.

My hon. Friend makes valid points about the unit costs of drugs for rarer conditions and how we tally up the development costs with the relatively low sales of those drugs. I will ensure that his comments about those matters are fed into the future discussions about the design of and consultation on value-based pricing of drugs. Later this year, we shall publish a consultation document, setting out our plans in detail. I hope that he and people from the many charities representing those with rarer cancers take part in that consultation and help us to shape the system in a way that makes a difference for those whom they represent.

My hon. Friend made comments about the treatments available for MDS; indeed, he said that none was available. I am informed by officials that some people with low or intermediate-risk MDS and no symptoms may not need treatment, but they will be monitored. Most MDS patients will have treatment to control or improve the symptoms. That is called supportive treatment. Chemotherapy may be helpful for some people, depending on the type of MDS that they have. A small number of patients may benefit from stem cell transplants, and the aim in those circumstances is to cure the disease. There are things that are done, but I accept my hon. Friend’s general point about the need to have access to appropriate drugs as well.

Let me answer the points that my hon. Friend raised about NICE. NICE performs a very difficult but essential job. Its independence is a key strength in the system. It should not be subject to micro-management and meddling by Ministers on a case-by-case basis. For that reason, I will not be able to give my hon. Friend the comfort that he wants—a ministerial intervention to direct NICE to behave differently with regard to the particular treatment under discussion. However, I note my hon. Friend’s criticism of the way in which the appraisal has been handled. That is the very reason why we have to have within it the appeal mechanisms that exist. That appeal mechanism has allowed some of those issues to be flagged up and reconsideration to take place.

I appreciate what my hon. Friend has said and his frustration, which I suspect is shared by many hon. Members and, more importantly, by those hoping for access to the drugs, about the length of time that it can take to get an appraisal through. NICE has attempted to streamline its appraisal process in recent years and, in many cases, is now able to start work before a new drug is licensed. For the majority of new cancer drugs, NICE aims to publish draft or final guidance within six months of licensing.

The process tends to be more protracted when there is an appeal against the decision, as there was in that case, or when there are particularly complex issues surrounding the drug in question. While we would welcome greater speed, none of us would advocate dispensing with the vital features of NICE’s work, such as public consultation and an independent appeal stage.

It is worth pointing out, however, that people can access the new funding for cancer drugs before NICE makes a final decision. Let me be absolutely clear: in other words, people do not need to wait for NICE to say no before they can apply to the cancer drugs fund. We have also made it clear to primary care trusts that they should not refuse to fund a drug locally simply because no NICE guidance is yet available.

I am also aware of the problems about providing drugs for which there might be limited evidence of effectiveness. Again, today’s consultation is asking about and seeking comments on that, to see how the fund is developed and what advice we give to the members of the panels that make the decisions. We are open to ideas and, through this debate, I put to my hon. Friend and others the idea of participating in the consultation.

Turning to orphan status drugs and drugs appraisal, my hon. Friend rightly drew attention to the fact that NICE has recommended only three of the 50 orphan drugs licensed by the European Medicines Agency. I understand his point, but we need to put his point into context. NICE has issued final guidance on, I believe, only seven drugs that have a current orphan designation, recommending only three of them, including one drug for more than one indication. NICE also issued positive guidance on the drug Sutent, which was an orphan drug when designated, but has since had that designation withdrawn.

My hon. Friend asked why NICE approval processes could not be adjusted to take into account orphan status. I point out, as he rightly mentioned, that the end-of-life criteria give NICE flexibility in appraising life-extending drugs for patients with terminal cancer. One of the criteria that must be satisfied for NICE to apply those extra flexibilities is that the treatment must be licensed, or otherwise indicated, for small patient populations. He suggested that such flexibility has not been helpful with orphan drugs, but it has helped make a number of drugs available to patients, including orphan drugs such as Yondelis for soft-tissue sarcoma and Revlimid for multiple myeloma.

I know that NICE is always open to ideas and I encourage my hon. Friend to engage directly with it, along with MDS UK, about their concerns. I will certainly ensure that a transcript of the debate is passed to NICE, so that it can see for itself the concerns of my hon. Friend.

To sum up, such issues are incredibly difficult and emotive. I know that from my own constituency mailbag and from constituents who come to see me, battling to get the medication that they think is appropriate for them on the advice of clinicians. The cancer drugs fund begins to transform and unlock new opportunities in that regard. Decisions concerning treatments often affect patients’ chances of beating their cancer. That and the possibility of patients having more time with their families are the very motivation behind the drugs fund.

The Government are clear. We need a system that treats people with rarer cancers in a fairer way, as my hon. Friend said today. He offered us a helpful and insightful spur to ensure that we have a clear focus as we progress in developing policy in the area. The fact is that many thousands of people have lost out over the years, owing to how cancer drugs are priced and funded. Starting with the £50 million already made available this year, and continuing with the £200 million cancer drugs fund from next April, we want to end that unfairness. More people will be able to get the drugs that they want to extend or improve their lives.

I hope that my hon. Friend has found the debate useful. We must ensure that the system works around the needs of patients and is evidence-based and properly accountable. I look forward to continuing the discussion. I hope that he and others will respond properly to the cancer drugs consultation and our work around designing the value-based pricing system to come.

Learning Disabilities and Mental Health Services

Paul Burstow Excerpts

Thursday 14th October 2010 Written Statements

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

I am today laying before Parliament the 14th report prepared pursuant to section 11 of the Disabled Persons (Services, Consultation and Representation) Act 1986 as amended by the Health and Social Care Act 2001. The report sets out the main developments in mental health and learning disabilities services that have taken place since the 13th report in 2003. It also provides the statistical data required under section 11(1)(b) of the Act.

A report under section 11 has not been published since 2003. We have published information about service and policy developments, but this information has not been laid before Parliament. The Department apologises unreservedly to Parliament for this oversight by the previous Government.

“Development of services for people with learning disabilities or mental illness in England—14th report” is in the Library and copies are available to hon. Members from the Vote Office.

Six Lives: The Provision of Public Services to People with Learning Disabilities

Paul Burstow Excerpts

Thursday 14th October 2010 Written Statements

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

I am pleased to announce that I have today published the Department of Health’s progress report in response to the recommendations of the parliamentary and health service ombudsman and local government ombudsman in their March 2009 report “Six lives: the provision of public services to people with learning disabilities”.

The report provides an assessment of progress made in health and social care services to fulfil the recommendations of “Six Lives” and improve health care and treatment for people with learning disabilities. This follows a series of reports that highlighted failures in adequately meeting the needs of this group of people. The report has been placed in the Library and copies are available to hon. Members in the Vote Office. The report is also available at:

http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_120251

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.

Tourette Syndrome

Paul Burstow Excerpts

Tuesday 12th October 2010 Westminster Hall

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

I congratulate my hon. Friend the Member for Peterborough (Mr Jackson)on securing this debate and on bringing the attention of the House to a rare and poorly understood condition. He has done a good job of outlining the scope, scale and cost of the condition and the personal impact that it has on many children and their families.

I will set out some of the changes that the Government are making in the NHS that we think will have a significant impact on and will benefit people with Tourette’s. My hon. Friend talked about education, which I will briefly mention, too, particularly in the context of the difficulties that can be faced by children suffering from the condition, which can be, as he said, misinterpreted by teachers. He is right to describe the sheer feeling of exhaustion in children who are trying to suppress and hide the condition. Socially and emotionally, Tourette’s can lead to ridicule and bullying and can often cause difficulties in forming relationships. Although some children grow out of the condition, it is a barrier in many ways, particularly to employment in later life. We need to ensure that we have a psychosocial-physical approach: we need to look at the whole person when designing services around the needs of individuals and their families.

My hon. Friend is right to mention stigma: that is a big challenge that we have to tackle. Today’s debate is a helpful starting point. I welcome his demolishing some of the myths that surround Tourettes syndrome, most notably his confirming that, despite the popular caricature, involuntarily swearing is only present in a tiny minority of cases.

I join my hon. Friend in commending the work of Tourettes Action, which is doing excellent work to build awareness and skills in health and children’s services. As he says, that work demonstrates that better awareness, timely diagnosis and good access to specialist care are critical in improving people’s quality of life. Of course, early detection makes it less likely that the child gets blamed for what might otherwise be mistaken for bad behaviour. Indeed, the condition is stress-sensitive and the relief a child can get from teachers and their classmates understanding their condition can actually improve their symptoms.

The NHS has not always got diagnosis right. My hon. Friend is right to mention the range of services that are provided and their patchiness. The Government have to grapple with that inheritance and ensure that we build on those services and improve them significantly in the coming years. It is clear that young people and children affected by Tourette’s have not always had the right support and services. We need to get better at identifying the condition, referring children to specialists and providing the long-term, integrated support needed to reduce the wider effects. I cannot promise a dedicated strategy specifically for this condition, and I do not think that that is what my hon. Friend is asking for, but I am keen to see that the issues he raised are properly fed into our future plans for the NHS, particularly into developing our thinking on child mental health. In addition to the reassurances that I hope I can give in the time left, I will ask officials to meet Tourettes Action and my hon. Friend to continue this conversation and discuss in more detail the issues he has raised. This debate is not the end of the discussion, but just the beginning of a process leading to the sort of improvements that he has been talking about.

The proposals for the NHS set out in our White Paper give us a powerful opportunity to improve the care and support received by children with Tourette’s. First, patients will have much greater power in the reformed system. We want to give people more information about services, more choice about their treatments and more influence over how health care is shaped in their community. Local health watch organisations will ensure that views and feedback from patients and carers feed into future decisions about shaping local health and social care. By devolving responsibility for commissioning to GP consortiums, decision making will be closer to patients and more responsive to their individual needs. Of course, we have to ensure that GP commissioners are ready and have the skills and awareness that they need to take these decisions. The NHS commissioning board will work with a range of expert organisations to ensure that GP leaders get the right support. There are certainly opportunities for Tourettes Action to contribute to developing family doctors’ understanding of the condition and how to commission for it effectively.

Secondly, there will be a much bigger role for local government in promoting integration and partnership working between the NHS, social care, public health and other local services and strategies. In particular, local government will take on the function of joining up the commissioning of local NHS services, social care and health improvement, and providing greater local democratic accountability for the community.

My hon. Friend mentioned identification and planning of care for children with Tourette's. Under our plans, councils will ensure that GP consortiums and their local partners work together on joint strategic needs assessments for local populations, looking not just at who is on the patient list, but at the wider needs of the population in the locality. That will mean that councils and health organisations will become much better at identifying children's needs, and putting the services in place to meet them. Our proposals for health and well-being boards will provide a place where children’s services, health services, social care and other agencies may come together to ensure that we are better at planning services and dealing with some of the issues that my hon. Friend mentioned.

The third key point is that the new NHS will focus on outcomes, not on processes. The trouble with a top-down and target-driven system is that it creates a culture in which, as my hon. Friend said, what gets measured gets done. If it is not measured, it seems to be neglected. He described perfectly what we have seen and how services have developed over several years. Our proposals will create a level playing field in the NHS between mental and physical health, and will encourage a much more constructive relationship between health and other public services. That is important, and my hon. Friend rightly said that we must ensure that we do not treat mental health services as a poor relation of the NHS. The Government are determined to ensure that that does not happen.

Health services will be judged and, increasingly, paid not just according to the number of procedures or consultations that they carry out, but on the value that they bring to patients’ health and their wider life—my hon. Friend made that point well. That will be a powerful catalyst for bringing services much closer together around the needs of the individual. A child with Tourette syndrome often has multiple and complex needs, as he said. More often than not, they will also have symptoms of attention deficit hyperactivity disorder, obsessive compulsive disorder or depression. They may be seen by a range of health care professionals, including psychiatrists, psychologists and so on. An outcomes-based approach will ensure that all professionals are geared to work together to achieve the best results for the child. Our proposals will be a potent catalyst for change and improvement in this area.

Fourthly and finally, we are in the process of developing a new mental health strategy, which will be cross-governmental and will examine how to support people's emotional well-being and mental health at all ages and across all services, not just health. One of my criticisms of the “New Horizons” mental health strategy was that it did not do enough to tackle discrimination and stigma. We are determined to make sure that in a more public health-oriented mental health strategy, we begin to address those issues more effectively. That must certainly be the case for Tourette’s.

[Mr Jackson]

I am grateful for the Minister’s positive response. Will he undertake to share the results of the wider review of mental health and Tourette syndrome with his colleagues in the Department for Education? An holistic approach is incredibly important, as is the close working relationship between specialist psychology and mental health services. Local education authorities are particularly important in ensuring that children’s educational attainment is the best possible.

[Paul Burstow]

I certainly undertake to ensure that the Minister of State, Department for Education, my hon. Friend the Member for Brent Central (Sarah Teather), who has responsibilities in this area, reads this debate. We recently met the National Advisory Council for Children’s Mental Health and Emotional Wellbeing, and we are discussing its thoughts on how to move forward and to ensure that child and adolescent mental health services are properly reflected in the new mental health strategy that we are developing. That is an issue for further discussion. I have made it clear that I want mental health to achieve parity with physical health in NHS thinking about care. I also want to ensure that CAMHS are not overshadowed by adult mental health services, which should help to drive up the quality of care for children with Tourette’s.

My hon. Friend talked about transitions, which are important. We so often get the transition from children’s services to adult services wrong. I agree that that continues to be a serious weakness and that child and adult mental health services do not work seamlessly together. That was identified as an area requiring improvement by an independent review in 2008 and in the report of the National Advisory Council for Children's Mental Health and Emotional Wellbeing, “One Year On”, which was published in March. One difficulty is that not all child mental health services are replicated in adult mental health provision, and my hon. Friend described some of the services that are rarely available for children. The new commissioning arrangements, particularly the new role for local government, with an outcomes-based approach, give a new impetus to developing better transition services. We must get that right for children, regardless of their condition.

We are also working with the royal colleges and others to promote higher standards of education and training throughout the clinical community. My hon. Friend rightly focused on that, and I welcome the fact that a network of psychologists and other therapists is being established to work with people with Tourette’s. That is a powerful way of moving the agenda forward. I understand that the network hopes to establish a specialist training workshop, led by experts in behavioural treatment for tics, during 2011. I commend that work and look forward to hearing the results.

My hon. Friend mentioned the role of schools and the need to collaborate across Government. I do not have ministerial responsibility for this area, but I draw his attention to the Green Paper on special educational needs and disabilities that the Minister of State, Department for Education, my hon. Friend the Member for Brent Central, is preparing. The aim is to make the system work better for parents, so that they do not have to battle to obtain the necessary support for their children. A call for evidence was launched last month and is due to close this Friday 15 October. If it has not done so, I hope that Tourettes Action will contribute its views. I am sure that this debate will also be a useful contribution.

I thank my hon. Friend for introducing this important debate. He raised some points that are important not just for children with Tourette’s, but for children with a wide range of neurological and mental health problems. Our White Paper provides the chance to refocus the NHS on achieving better results for them all. The outcomes framework will be a central driver for improvement and will ensure that the NHS treats the person, not just the disease, but meeting people’s needs effectively depends on good partnerships with groups such as Tourettes Action to give us the expert knowledge that we need about rare conditions. I am keen to have a strong dialogue with the voluntary sector, and indeed the White Paper is all about opening doors to organisations such as Tourettes Action. I hope that the group’s first step will be to take the opportunity to meet my officials and to respond to the call for evidence by my hon. Friend the Minister of State, Department for Education. I hope that by working together in that way, we can do much better than the legacy that we inherited from the past.

National Dementia Strategy

Paul Burstow Excerpts

Monday 11th October 2010 Written Statements

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

The Government published a new outcomes focused implementation plan for the National Dementia Strategy on 28 September 2010. “Quality outcomes for people with dementia: building on the work of the National Dementia Strategy” has been placed in the Library and copies are available to hon. Members in the Vote Office. The document is also available electronically at: www.dh.gov.uk/en/Aboutus/Features/DH_119830.

Raising the quality of care for people with dementia and their carers is a major priority under this Government. The key purpose of “Quality outcomes for people with dementia: building on the work of the National Dementia Strategy” is to set out for health and social care localities and their delivery partners:

the Department of Health’s role and its priorities during 2010-11 for supporting local delivery of and local accountability for the implementation of “Living Well with Dementia—A National Dementia Strategy”;

the strategy’s fit with the new vision for the future of health and social care as set out in the White Paper “Equity and Excellence: Liberating the NHS”; and

the fit with the consultation document “Liberating the NHS: Transparency in outcomes—a framework for the NHS”.

“Living well with Dementia—A National Dementia Strategy”¹ was launched in February 2009 following an extensive consultation process, with the aim of improving the quality of care for people with dementia and their carers. It is a five-year strategy containing 17 objectives to transform dementia services. Some £150 million has been made available to primary care trusts in the first two years—£60 million in 2009-10 and £90 million in 2010-11—to implement the strategy, but without a ring-fence on the funding or targets. Alongside delivery of the strategy, work is under way to implement the recommendations of Professor Sube Banerjee’s report into the over-prescribing of anti-psychotic drugs for people with dementia². Professor Banerjee’s report has been placed in the Library and is available at:

www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_108303.

“Quality outcomes for people with dementia: building on the work of the National Dementia Strategy” provides an implementation plan that reflects the principles of the White Paper “Equity and Excellence: Liberating the NHS”³, the consultation document “Liberating the NHS: Transparency in outcomes – a framework for the NHS”⁴ and the current economic and political landscape, where the Department’s role is more enabling and less directive.

The new implementation plan identifies four priority objectives for the Department’s work during 2010-11 to support local delivery of the strategy. These areas provide a real focus on activities that are likely to have the greatest impact on improving quality outcomes for people with dementia and their carers. The four priority objectives are:

good-quality early diagnosis and intervention for all;

improved quality of care in general hospitals;

living well with dementia in care homes; and

reduced use of anti-psychotic medication.

The Government have commissioned a national audit of dementia services, which is establishing the provision of dementia services across the country. The audit will provide local NHS and social care organisations with a measure of their progress in key areas including the use of senior clinical leads for dementia in hospitals, establishment of memory services, reducing the use of anti-psychotic medication and expenditure on dementia services, so that they can drive forward action to accelerate improvements in dementia care. The initial results are expected by the end of the year.

The revised NHS operating framework for 2010-11 highlights that the NHS and its partners must give a greater priority to dementia. Local organisations will be expected to publish how they are delivering on quality outcomes so that they can be held to account by local people. This expectation along with the data generated by the national audit will create much greater transparency.

The Government are working with the Alzheimer’s Society to develop a National Dementia Declaration, which is due to be launched in autumn 2010. This is a sector-wide initiative, led by the Alzheimer’s Society, which involves a wide range of national organisations. It will be a call to action to improve the quality of life outcomes for people with dementia and their carers.

The Government support the implementation of the “End of Life Care Strategy”, published in 2008, which aims to improve end of life care for all adults, including those with dementia. The Government have also confirmed its commitment to improving quality and choice in palliative and end of life care in “Equity and excellence: Liberating the NHS”, which includes the commitment to move towards a national choice offer to support people’s preferences about how to have a good death.

“Quality outcomes for people with dementia: building on the work of the National Dementia Strategy” reflects the Government’s commitment to ensure a greater focus on accelerating the pace of improvement through local delivery of and local accountability for achieving quality outcomes in dementia care.

At the heart of this vision is the Government’s commitment to putting patients and the public first; improving health and social care outcomes; ensuring autonomy, accountability, democratic legitimacy and improving efficiency.

As highlighted in the National Dementia Strategy, the pace of implementation will vary depending on local circumstances and the level and development of services within each NHS and local government area. It describes what the Department of Health considers as its priorities for policy development in its role of enabler for continued progress in improving outcomes for people with dementia and their carers.

A key element of this new outcomes focused approach is ensuring greater transparency and provision of information to individuals so that they have a good understanding of their local services, how these compare to other services, and the level of quality that they can expect. Local organisations will be expected to publish how they are delivering on quality outcomes so that they can be held to account by local people.

Notes

¹“Living well with dementia: A National Dementia Strategy”, Department of Health, 3 February 2009.

²The use of antipsychotic medication for people with dementia: Time for action—A report for the Minister of State for Care Services by Professor Sube Banerjee,12 November 2009.

³The NHS White Paper: “Equity and Excellence: Liberating the NHS”, Department of Health, 12 July2010.

⁴“Liberating the NHS: Transparency in outcomes—a framework for the NHS”.