People with Learning Disabilities (NHS Treatment)

Wednesday 14th July 2010 Westminster Hall

Motion made, and Question proposed, That the sitting be now adjourned.—(Mr Vara.)

09:30

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

As always, it is an enormous pleasure to debate under your chairmanship, Mr Hood. I welcome you this morning. I also have great pleasure in welcoming the Minister. He knows that he has a very exciting portfolio, and if our extremely crowded meeting of the all-party group on learning disability yesterday is an indication—we understood that the Minister could not attend, for very good reasons—there is great public interest even in this debate. I welcome the Minister to his post.

It is a great privilege to open this debate on the hugely important issue of the treatment of people with learning disabilities in the national health service. I am well aware that the NHS in Scotland is devolved, following decisions of this House, but I declare two interests. I am a co-chair, with Lord Rix, of the all-party group, and I represent taxpayers in my constituency, who want to see best practice throughout the UK, particularly because many of the problems that will be discussed today are replicated in Scotland.

It is four years since the Disability Rights Commission published its report, “Equal Treatment: Closing the Gap”, on physical health inequalities experienced by people with learning disabilities and mental health problems. It is three years since Mencap published its “Death by indifference” report, highlighting six different cases in which people with learning disabilities died unnecessarily in the NHS. Those reports helped to bring the treatment of people with learning disabilities to the fore and led to an independent inquiry chaired by Sir Jonathan Michael in 2008. In March 2009, the health service ombudsman published a report on the six deaths highlighted in “Death by indifference” and found failures of process at the heart of service provision in the NHS.

I hope that today’s debate gives hon. Members the opportunity to question the Minister on progress made in the past two to three years and gives the new Government the opportunity to show their commitment to equality of health care provision for people with learning disabilities.

It is important to emphasise that the debate is not an excuse to attack the NHS. The national health service is an institution that is treasured and cherished throughout the country and of which hon. Members in all parts of the House are rightly proud. I have seen in my constituency and in constituencies throughout Britain the hard work and dedication of health care professionals—nurses, doctors, cleaners, ancillary workers and others—who are willing and able to go the extra mile for patients and are determined to help and improve the lives of people who need the support of the NHS.

A true friend of the NHS does not simply praise it unquestioningly, however. I believe that Aneurin Bevan, who died 50 years ago last week, would be delighted to see Government, politicians and voluntary organisations coming together to work with the NHS to ensure that it constantly improves its health care provision for the most vulnerable people and delivers its services with ever greater understanding and consideration. We should not forget that although the right of people with learning disabilities to experience equality in health care provision is a profoundly moral one, it is also a legal requirement under the Disability Discrimination Act 2005, the Human Rights Act 1998 and the Mental Capacity Act 2005.

It is important for us to highlight the many problems identified in some of the excellent work carried out in recent years. Sir Bert Massie, then chairman of the Disability Rights Commission, wrote in the foreword to the commission’s “Closing the Gap” report that

“people with learning disabilities…are more likely to experience major illnesses, to develop them younger and die of them sooner than other citizens. They are less likely to get some of the evidence-based treatments and checks they need, and they face real barriers in accessing services…we sometimes encountered a complacent attitude that these excluded groups ‘just do’ die younger or ‘just won’t’ look after their health or attend appointments.”

That was a damning indictment of what many people with learning disabilities experienced when they accessed health care services. Not only were people with learning disabilities more likely to experience health problems—that inequality is due to a wide range of physical, social and cultural factors—but the treatment that they received was of a lower standard.

The same report also found that people with learning disabilities were less likely to receive checks, such as crucial screening for breast cancer. There were problems with what is called diagnostic overshadowing, whereby physical illness is viewed as part of a learning disability and therefore ignored or sidelined. Many services were found not to be making reasonable adjustments to ensure that health care information was accessible to people with a learning disability.

If the report by the Disability Rights Commission was eye-opening, Mencap’s “Death by indifference” report the following year was simply shocking. It highlighted the institutional discrimination that can exist at the heart of the NHS. One family reported that when they took their daughter into hospital for treatment, they were told, “If she had been a normal young woman, we would not hesitate to treat her.”

Due to time constraints, I shall highlight just one of the tragic cases included in the report. Martin was 43 years old when he died in December 2005. He had a severe learning disability and no speech. After suffering a stroke, he entered hospital, where he contracted pneumonia. He could not swallow, so was put on a drip, which he was unable to tolerate and sometimes pulled out. A speech and language specialist visited Martin and recorded that alternative feeding methods should be found, but Martin was now entering his third week in hospital, his veins had collapsed and the doctors could no longer get the glucose liquid from his drip into his body. By the time it was decided that a feeding tube needed to be inserted into his stomach, Martin had been without nutrition for 21 days. He could not undergo the operation to insert the feeding tube, and five days later he died.

The hospital’s internal investigation concluded that there had been a complete breakdown of communication between the doctor and the nurses. The ombudsman went further, finding that Martin’s death was avoidable and that he had been treated unfavourably because of his disability. Martin starved to death in an NHS ward because he did not receive the quality of care that he deserved and because he was failed as a result of his disability. That was certainly a shocking case, but Martin’s death was more than a mere statistic. It was a human life—a life that could have been saved if he had been treated properly.

As a judicial review has been granted into an aspect of the ombudsman’s findings, I will not comment in detail on the wider aspects. However, the “Death by indifference” report was possible only because of the bravery of the families who came forward to highlight the tragic and preventable loss of life that had occurred. Their bravery allowed people to see the human aspect of disability discrimination in health care and led to the creation of an independent inquiry into access to health care for people with learning disabilities, which published its conclusions in July 2008.

Sir Jonathan Michael’s findings supported what people with learning disabilities and their families and carers have long said, and the points that I am about to make were overwhelmingly endorsed again and again at the all-party group’s annual general meeting yesterday. People with learning disabilities find it harder to access health care services not directly related to their disability, and adjustments are not always made to allow for communication problems. Parents and carers often struggle to be heard, and there is limited knowledge among health service staff about learning disabilities.

I was pleased by the response of the previous Government, who set up the independent inquiry and unreservedly accepted its findings and recommendations. A public health observatory and a confidential inquiry into the premature deaths of people with learning disabilities have been established, and progress has been made on annual health checks, particularly in certain areas. However, more needs to be done to ensure more uniform roll-out, and questions remain about funding.

Real progress was made under the previous Government’s 2009 “Valuing People Now” strategy, and I would like to hear from the Minister how the new coalition Government propose to maintain that momentum, how they will ensure that reasonable adjustments are made and how they will continue to raise awareness among health care professionals. I would also like to hear how they will move towards providing greater training in the health service—an issue that was raised again and again at yesterday afternoon’s meeting—and ensure that data collection, information sharing and service co-ordination are enhanced.

As we know, the problems in the NHS are not self-contained. Discrimination, lack of awareness and a failure to understand the needs of people with learning disabilities do not exist simply in the NHS or the public sector; such attitudes percolate through all aspects of society, from education to employment to health care. If the Government are seriously committed to removing health care inequalities for people with learning disabilities, they need to do so in a wider social framework, as the “Valuing People Now” strategy clearly recognised.

I would therefore be interested to hear the Minister respond to the recent report by Professor Jim Mansell, who, incidentally, made an excellent contribution to yesterday’s meeting. His report, “Raising our sights”, deals with people with profound intellectual and multiple disabilities. It details the challenges, prejudice, discrimination and low expectations that many people with such profound disabilities face. It also deals with, and makes recommendations on, health care for people with profound intellectual and multiple disabilities, encouraging NHS bodies and NHS trusts to think about how adequate health provision is and to reflect again and again on how they deliver such vital services. How do the Government plan to respond to this important report? Will its extremely relevant and poignant recommendations be used as a framework for future policy making? It would be useful if the Minister could make the report available in paper form for those who do not access the internet and if the excellent accompanying DVD, which we saw yesterday, could be added to the website.

Although progress has been made, there is still plenty to do. That was highlighted recently in a poll of more than 1,000 health professionals carried out by ICM and commissioned by Mencap. The survey found that almost half of all doctors and a third of nurses said that people with a learning disability receive a poorer standard of health care than the rest of the population. Four out of 10 doctors and a third of nurses said that people with a learning disability are discriminated against in the NHS. The survey also found that a third of health care professionals have not been trained in how to make reasonable adjustments for a patient with a learning disability.

The Government need to make sure that there are accessible and open communication channels between professionals and those with learning disabilities, who rightly demand a higher standard of treatment. More than 80% of people with a learning disability have a severe communication disability, and that, alongside the prejudices and stereotypes that I have discussed, can often be at the heart of identified failures in the NHS. How will the Government continue to expand opportunities for specialist support so that two-way communication between people with learning disabilities and NHS workers can improve? I ask the Government to ensure that people with learning disabilities are guaranteed access to special communication provision and that NHS staff have appropriate communication skills.

It is vital to recognise and adapt to the challenges specific to people with a learning disability. I have recently had the pleasure of working alongside the charities SeeAbility and the Royal National Institute of Blind People, which have highlighted the prevalence of sight problems among people with a learning disability. In fact, more than a third of people with a learning disability have such a problem, and many do not realise it. Such problems can lead to behavioural change, to the undermining of quality of life and often to increased dependency. It cannot be acceptable that people with a learning disability are also least likely to get the right help and support with eye care.

In January, the all-party group co-hosted a listening event at which people with learning disabilities spoke to MPs, Members of the other House and other stakeholders about the sight problems that they had had and the lack of support available to them. As we listened to those articulate people, it became clear that more information needs to be available and that eye care professionals need to be supported so that they can provide accessible and effective services. Eye care is one small but important part of health care provision, but it became clear, as we listened, that all people with learning disabilities want is accessible and understandable services that are adaptable to their particular needs. That is not too much to ask, I suggest, in the modern world.

The commitment to eradicating health care inequality in the NHS is shared among Members on both sides of the House, our partners in the voluntary sector and health care professionals. There are problems of discrimination, lack of understanding, communication failure, assumptions about quality of life, and inflexible service provision, which have begun to be tackled. That process needs to be continued by the new Government. I hope that they support Mencap’s new initiative, the “Getting it right” campaign, which calls on health trusts to commit themselves to a charter setting out the steps necessary to ensure equality of health care in the NHS for people with a learning disability.

The charter makes reference to many of the points that are being debated this morning, including annual health checks, training, awareness, support for families and open channels of communication. Equality in treatment will be fully realised only once genuine equality for people with disabilities is achieved across society. However, the steps that have been taken to make tangible gains must continue, and must not fall by the wayside because of spending cuts or NHS reform, or for any other reason. Health care professionals need to be fully trained; specialist communications must be accessible; and services must be flexible in relation to the needs of all people with a learning disability.

The NHS succeeds because it is there for the most vulnerable. Let us hope that, with the legislative programme that has already been started, which hopefully is to continue under the current Government, we can prevent ill-treatment, discrimination and even avoidable death in that great national institution—we owe it to people with disabilities and to the vast majority of NHS staff, whose sterling commitment I again acknowledge.

09:52

[Chris Skidmore (Kingswood) (Con)]

As the secretary of the all-party group on disability and a member of the Select Committee on Health, I have a dual interest in this debate. I am also a member of the all-party group on learning disability. I am sorry that I could not attend yesterday’s AGM; it sounds as if it was a fascinating event.

I thank the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) for calling the debate, which is clearly necessary. If I repeat any of the points that he made so eloquently, it will be only because they need to be driven home. The debate highlights some current failings in the NHS with respect to people with learning difficulties. As the right hon. Gentleman said, there have been several reports on the issue in recent years. The Disability Rights Commission’s report, “Equal Treatment: Closing the Gap”, published in 2006, showed that although people with learning difficulties were more likely to develop conditions such as obesity and respiratory diseases, they were less likely to receive adequate care, treatment and health checks.

In the following year, as the right hon. Gentleman also mentioned, came Mencap’s report “Death by indifference”. That seminal study highlighted some of the failings of the past several years and showed that six people with learning difficulties had died prematurely owing to discriminatory care. Yet after those reports were published, and despite moves towards dealing with the situation, the most recent survey by Mencap, which was released in June—again, the right hon. Gentleman referred to it—showed that half of doctors and a third of nurses had witnessed a patient with learning disabilities being treated with neglect or a lack of dignity, or receiving poor quality care. Those statistics are clearly unacceptable.

What can be done? The right hon. Gentleman has already referred to the issues that we need to address. I shall probably repeat some of what he said, and I hope that he does not mind. To my mind, the first issue is training for professionals in the NHS. There is clearly an institutional failure to make adequate provision for people with learning difficulties in the NHS, despite the fact that they receive £1.7 billion of NHS money. The Mencap survey highlighted the training issue; it found that 53% of doctors and 68% of nurses felt that they needed specific guidelines on how to care for people with learning difficulties, and how treatment should be addressed to them, to meet their needs. There is clearly a gap that we need to examine in closer detail.

I welcome the plans in the White Paper that has just been published to end the top-down managerial approach and the current centralised funding of education and training, because previously the multi-professional education and training levy was not accountable in relation to the amount of training and continuing professional development that it provided. The White Paper sets out welcome plans to give employers greater autonomy and, above all, accountability. Accountability is what we need, because training has been available but there is no way of showing that it works. We need to get back to a local level, which is what the White Paper sets out to achieve, so that there will be greater professional ownership of the quality of training. I welcome that accountability and recognise that accountability at local NHS organisational level must also ensure that people with learning difficulties are treated adequately.

The second issue that I want to mention is the broader one of communication. That is at the heart of treatment for people with learning difficulties. The question is how to cross the communication barrier between professionals—doctors and nurses—and people with learning difficulties, who often cannot express their needs, which may be very individual. One of my constituents was recently rushed to the Bristol Royal infirmary on a weekend. He had a procedure on his heart and a doctor explained his condition to him as if he were communicating with a normal member of the public. That approach was clearly inadequate for someone with learning difficulties. The nurse then presented him with some complicated leaflets, which he could not understand. There was no co-ordination with his carer at NHS level—or certainly not at the acute hospital level—and that led to a man who was already very sick being further distressed and scared.

It is in that context, to which the right hon. Member for Coatbridge, Chryston and Bellshill referred, that the role of learning disability liaison nurses is crucial, for the support of patients, families and those who support people with learning difficulties. It is not yet clear how many such posts exist. In my area of Bristol, which has the Frenchay and Southmead hospitals, there are only two. However, I was surprised to discover that that is pretty good by national standards.

I understand that interesting new moves are under way towards developing the role of liaison nurses, and in particular that St. George’s healthcare trust in south London has gone further, by appointing a nurse consultant in learning difficulties. The success of that probably says something about the need to examine the NHS staffing structure in relation to people with learning difficulties. The holder of that nurse consultant post remarked:

“This job would not have had the impact it has had if it was not at consultant level.”

That shows an interesting divide, by which those with learning disabilities are often dealt with at a nursing level, when to get the impact that is needed it is necessary to go higher up the chain. Clearly, there is a need to explore the greater use of liaison nurses, the employment of a number of such nurses, and what happens at local level.

The White Paper gives us much encouragement about the personalisation of services, and, above all, the determination to put patients at the heart of the NHS. I note with interest that one of its principal aims is to ensure that shared decision making will become the norm. To use the familiar maxim that we use in the all-party group on disability, “No decision about me without me.” Sadly, we know that for some with learning difficulties that will be impossible.

We already know about the difficult ethical issues, which have been reported in the national media, in respect of those with learning difficulties having treatment forced on them. For instance, a lady with cancer was forced to undergo an operation. I do not want to touch on the ethical issues today, but such cases clearly raise questions about the relationship between patients and professionals. Given the White Paper, the greater personalisation of services and putting patients at the heart of the NHS, we must ensure that patients with learning difficulties are not left behind.

Personalised care that reflects individual health care needs is just as relevant for those with learning difficulties, if not more so. If we want to realise the promise of the White Paper—I note that it is also committed to promoting equality—we must understand the importance of health outcomes for those with learning difficulties. Moving from targets towards outcomes will benefit those with learning difficulties, as some of their problems need to be considered over a greater period, and hospitals cannot always deal with them in a single session. However, those outcomes are not being met, and that reflects on society.

Above all, it is important to ensure that the most vulnerable, particularly those with learning disabilities, receive the greatest care. In that regard, the introduction last year of incentive payments for GPs to carry out annual health care checks for those with learning difficulties was welcome. However, there is clearly a problem. Take-up has risen by about 60% between 2008-09 and 2009-10, yet still only half the money allocated for such checks by doctors is being used.

The White Paper and Government statements show that giving GPs greater control over their budgets will circumvent some of the centralised mechanisms. GPs will thus know exactly what tailored care is necessary for their patients, including those with learning difficulties. I hope that GPs will take the opportunity to expand the use of health checks within their allocated budgets. That will ensure that prevention is at the heart of treatment.

Above all, the issue is about prevention. As the right hon. Gentleman said, those with learning difficulties and disabilities are often at greater risk of illnesses that could have been prevented; they could avoid reaching the acute hospital stage, which can often be confusing and stressful, early in their treatment. Personalised care will ensure that GPs monitor patients more carefully. I hope that having annual health care checks in place will ultimately prevent people with learning difficulties from reaching the stage in the NHS that they find so disturbing—the stress of late diagnosis.

Finally, I echo the right hon. Gentleman’s comments about the national health service. We are not here to criticise the institution. We share a common cause; we wish to make it better and more effective for those with learning difficulties.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I thank the hon. Gentleman for giving way. He touched on the excellence of the national health service. Does he agree that we must try to ensure best practice throughout the United Kingdom, particularly in devolved regions, and that we should not have patients in one part of the UK demanding of the health service a level of service that they see elsewhere? We should aim for equality and best practice across the UK.

[Chris Skidmore]

I agree with the hon. Gentleman. We are learning that health inequalities throughout our nation are extremely profound. Only by dealing with health inequalities can we raise the standard of public health in the nation as a whole—something that applies to many of our public services. Having a greater drive towards the localisation of services and the personalisation of care will get us to the stage where prevention is at the heart of NHS treatment. Through prevention, we will achieve greater equality; it will iron out some of the inequalities that we see in our most deprived communities.

The principles on which the NHS was founded are still relevant today, and we agree that that must remain so. However, although free health care at the point of access should be available to all, based on need, we must look harder at how to ensure that the needs of the most vulnerable are met. That includes those with learning difficulties. More clearly needs to be done, but I hope that we will be able to achieve it.

10:05

[Barbara Keeley (Worsley and Eccles South) (Lab)]

It is a pleasure, Mr Hood, to serve under your chairmanship. I congratulate my right hon. Friend the Member for Coatbridge, Chryston and Bellshill (Mr Clarke) on securing this debate, which is on a most important subject.

As we know, my right hon. Friend is chair of the all-party group on learning disability, and I pay tribute to his work on the matter in Parliament and with Mencap, which supports the all-party group. My right hon. Friend has highlighted a series of reports that make a compelling case for improving the treatment of people with learning disabilities, making it equal to the treatment received by others.

At the extreme, inequality of treatment in the NHS can lead to unnecessary death, as in the six cases highlighted by Mencap’s report “Death by indifference”. Those six cases of unnecessary death led to the health ombudsman’s findings of failure in NHS service provision. Since then, Mencap has received more accounts of tragic cases from families and carers whose loved ones died because health professionals did not know how to treat, assess or care for people with learning disabilities; they did not listen to what the families and carers said about the patients’ needs, and they made no effort to communicate with the patients using methods such as photo symbols.

Some time has elapsed since the “Death by indifference” report and the ombudsman’s findings of failures in service provision. Will the Minister tell us what progress the Department of Health has made in achieving equality of provision in health services for people with learning disabilities? As my right hon. Friend said, there is a moral case for equal treatment but it is also a legal requirement under the Disability Discrimination Act 1995, the Human Rights Act 1998 and the Mental Capacity Acts. The cases that have been highlighted show that people with learning disabilities do not always get the right health care; failures in provision can have fatal consequences.

Given that people with learning disabilities are more likely to have major illnesses, and at a younger age, failures in provision or barriers to accessing treatments or services are more likely to lead to fatal consequences. Members may know of such things from their casework. I spent time battling for appropriate care for a young constituent with physical and learning disabilities. Her parents wanted her medical needs to be assessed alongside her physical needs, but we had a battle with the primary care trust on that. We finally won, but it was too late; my young constituent died before the improved services could be put in place.

My right hon. Friend spoke of the problem of diagnostic overshadowing, whereby physical illness is seen as part of a learning disability and is therefore ignored or sidelined. In our debate last week on mental health and autism, we said that similar difficulties resulting from mental health symptoms are being treated as if the symptoms were part of the autistic spectrum disorder and are also ignored. We need health professionals to be trained to treat, assess and care for people with disabilities or learning difficulties.

We heard earlier that a poll of more than 1,000 health professionals commissioned by Mencap found that a third of health care professionals are not trained in how to make reasonable adjustments for patients with learning disabilities. As has been said, that is no longer acceptable. The fact that more than 80% of people with a learning disability also have a severe communication disability points to the need for training and specialist support. I make no apology for repeating points made by others; we need to underline their importance.

Good communication is vital between patients with learning disabilities and health care professionals and, as we heard, that is at the heart of NHS provision. I therefore look forward to hearing the Minister’s comments on access to special provision for communication within the NHS, and on appropriate communications skills training for NHS staff. The NHS White Paper says that the Department of Health will reduce its role in the education and training of staff. How will the Government ensure that professionals have proper training in providing health care for those with learning disabilities?

I turn from training to health checks for people with learning disabilities. The Labour Government’s “Valuing People Now” strategy accepted a recommendation to introduce a directed enhanced service of annual health checks for people with learning disabilities who are known to local authorities. That has meant that all primary care trusts in England are under direction to commission annual health checks from GP practices in their area and to arrange appropriate training for GPs and their practice staff. Such arrangements were initially set to run until 31 March 2010, but there has been an extension until 2011.

In addition, the Department of Health planned to work with groups representing patients, families, carers and professional groups to review the effectiveness of those arrangements and consider improvements for the future. Will the Minister update us on that work and say what commitments he can make to continue annual health checks for people with learning disabilities? Will he also update us on the development of practitioners with a special interest in learning disability, as that, too, was part of the strategy? It was envisaged that such practitioners could serve as a resource to other health practitioners in their area.

Given the announcements made by the Secretary of State on Monday, will the Minister further update us on what the commissioning process will be for the directed enhanced service? Will the new NHS commissioning board require GP consortiums to provide annual health checks for people with a learning disability? What expertise in commissioning care for people with a learning disability will the Government expect GP consortiums to have? That is an important question. Will the Minister tell us whether the Government plan a wider roll-out of annual health checks for people with a learning disability, as my right hon. Friend has already asked him, and what systems will be put in place to monitor the quality of such health checks?

People with a learning disability will receive health checks only if they are known to the local authority. A further recommendation accepted in “Valuing People Now” was that the Department should ensure that it collects the data and information necessary to allow people with a learning disability to be identified by the health service and have their care pathways checked.

Will the Minister update us on the work of the NHS information centre and the public health observatory for people with learning disabilities to identify practical changes that are needed to ensure more systematic recording of learning disability within general practice? “Valuing People Now” said that the directed enhanced service for annual health checks would help GP practices ensure that the registers they maintain under the quality and outcomes framework reflect information from local authority registers of people with learning disabilities known to those services. Will the Minister tell us whether that has been a successful way of collecting the data and information needed? Has good practice emerged on comparing data from GP practice systems with data from other NHS sources to allow better analysis of the uptake of health care interventions and health outcomes for people with learning disabilities?

Finally, “Valuing People Now” recognises the important role that carers play and the importance of working in partnership with them in the provision of treatment and care. Carers should always be included as partners in care, but the “Death by indifference” report showed that health care professionals did not listen to families and carers about patients’ needs.

The hon. Member for Kingswood (Chris Skidmore) told us of a case in which the carer was not involved in any communication about the person for whom they cared. The national carers’ strategy included a commitment to issue information prescriptions to carers and to enable carers to receive other appropriate information, especially in cases when mental capacity is an issue.

The national carers’ strategy also recognised that the additional stress of caring may affect the carer’s own health, so there is a need for annual health checks for family carers, too. We must ensure that carers get regular access to short-break services and to support.

In this time of cutbacks and austerity budgets, will the Minister assure us that he understands and prioritises work to ensure that carers are treated by the NHS as partners in care? Will he also tell us whether work on a refresh of the national carers’ strategy will continue to prioritise annual health checks for carers, access to respite care and breaks for all carers, especially those who care for people with a learning disability?

The Government White Paper uses the slogan “Nothing about me, without me”, which clearly owes a debt to the slogan “Nothing about us, without us”, which was used for many years by disability activists. “Nothing about us, without us” was also the title of a strategy paper for learning disability produced in 2001 by the Department of Health and the service users’ advisory group, which included representatives from a number of learning disability organisations.

I trust that the Minister will value the contributions and questions that have come from this debate, as Ministers have valued reports from, and the themes and slogans used by, organisations for people with disabilities and learning disabilities over the last decade.

10:09

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

I thank the right hon. Member for Coatbridge, Chryston and Bellshill (Mr Clarke) for securing this debate, because it is a timely opportunity for the new coalition Government to set out their intentions and approach to the issue. I also pay tribute to him because I know from my time in the House, over the past 13 years, that he has been a true and consistent campaigner on behalf of people with learning disabilities and their families. He has brought many issues to the attention of the House and regularly challenged Ministers of the previous Government—I am sure that he will continue to do so with this Government—to strive to achieve better outcomes for people with learning disabilities.

I made it my business to attend the first meeting of the all-party group on learning disability after the general election to signal my intention and commitment as a new Minister. Despite the fact that I could not make yesterday’s meeting, I hope that my good faith and my desire to collaborate with the all-party group will be recognised. I also pay my respect to Lord Brian Rix who, along with the right hon. Gentleman, provides exceptional leadership in that area.

I also thank the hon. Member for Kingswood (Chris Skidmore) and the hon. Member for Worsley and Eccles South (Barbara Keeley), who speaks for the Opposition, for their contributions to this debate. I will clearly have ample time to respond to their many points and questions. If I miss anything out, I will write to right hon. and hon. Members later. It is right that such issues should arouse strong feelings and that they should be kept at the top of the agenda. The right hon. Member for Coatbridge, Chryston and Bellshill drew attention to the Disability Rights Commission report “Closing the gap” and the impact that it had when it came out. No one should be in any doubt of the extent to which the Mencap report “Death by indifference” provided a wake-up call to the NHS and the Government of the day. The health ombudsman’s report has also been very important in alerting us to the failings in the system.

Four years on, a great deal has been written and said about this subject. None the less, despite the “Valuing People Now” strategy and the many worthy efforts to improve services, there are still some parts of the NHS that are not delivering well enough for people with learning disabilities. We have inherited that legacy and we are determined to take action on it. I welcome and support the principles set out in Mencap’s “Getting it right” charter, and we will try to collaborate with the charity to ensure that we address and take forward the additional challenges. I want to work very closely with Mencap to ensure that we translate the words on the page into real change in hearts, minds and practice across the country.

The right hon. Gentleman and the hon. Member for Kingswood were right to pay tribute to the work of many dedicated NHS staff around the country. Constructive feedback also needs to be part of any good process of continuous improvement, and is certainly essential when it comes to the NHS. My hon. Friend the Member for Kingswood put his finger on the pulse when he said that one of the key things that the Government White Paper on the NHS will do is provide a far better focus on early intervention, early diagnosis and prevention. Prevention will be an important part of this Government’s agenda in the delivery and improvement of health care.

I want to make it clear that this Government support “Valuing People Now” as a strategy. Our approach to it is one of continuity and change. I will not be reinventing the wheel, but I will be doing everything I can to make the wheel spin faster—if I can put it that way—because we need continuity but we also need to accelerate the pace of change on the ground.

I have listened very carefully to the points that have been made by right hon. and hon. Members during this debate and I will try to respond to those points. I will start with the point about evidence and information. Gathering evidence and information must be a key part of informing the development of practice on the ground. The right hon. Gentleman and the hon. Member for Worsley and Eccles South, the shadow Minister, were right to say that this is an area where we must do more. Gathering better information and evidence is vital. We need better information and evidence to subject the NHS to proper scrutiny and so that the NHS can conduct proper self-appraisal; consequently, any shortcomings in care can be identified and acted on quickly, both at a local and a national level.

I can confirm that we are pressing ahead with the confidential inquiry and the public health observatory that were recommended by Sir Jonathan Michael’s inquiry. The confidential inquiry will ensure that premature and avoidable deaths of people with learning disabilities are investigated and that lessons are properly learned and applied at a national level. The public health observatory will give us a much stronger evidence base about the needs of people with learning disabilities and the difficulties that they face, which in turn will inform better practice. I am particularly pleased that we will have representatives from Mencap, the National Forum for People with Learning Difficulties and the National Valuing Families Forum on the group that will scrutinise the progress of both the confidential inquiry and the public health observatory.

In addition, all areas of the country have completed, or are in the process of completing, the new health self-assessment framework. That framework brings together strategic health authorities, primary care trusts, hospital trusts and people with learning disabilities and their families. Those organisations and individuals are coming together to assess local NHS progress and to ensure that health services continue to improve for people with learning disabilities. Their work will be shared with the public health observatory to inform its work. The framework offers a strong means of ensuring accountability and it can help us to ensure that NHS services are making the right adjustments in line with their duties under the Disability Discrimination Act 2005 and other legislation, which is a point that has quite rightly been made by all right hon. and hon. Members who have contributed to this debate.

[Barbara Keeley]

As I think all of us who have been involved in today’s debate understand, there will be a great deal of churn in the organisations that the Minister has referred to, such as the SHAs, the PCTs and the hospital trusts. Greater accountability for, and greater scrutiny of their work is clearly important, but those organisations are now threatened with closure. People will be leaving their jobs, so I want to ask the Minister if there is a follow-on plan for when those organisations expire, as it were?

[Mr Burstow]

The hon. Lady must have a copy of my speech in front of her, because the answer to that question is in the next paragraph. She is absolutely right. In executing the change that the White Paper sets out, which means removing the sense of central dictation and direction that we have seen in the NHS for the last 13 years, ending that sense of command and control and making the system one that is about delivering outcomes and one that is facing the patient and working alongside them to deliver those outcomes is an important transformation. Therefore we need to ensure that, in the transition planning that is now well under way for the change that will take place during the next two to three years, the institutional knowledge and learning in the existing system properly migrate to the new system, and that best practice is firmly embedded in the front-line services. Those services will remain as they are now, but they will receive more support and investment to do even better.

[Mr Tom Clarke]

I welcome both the Minister’s tone and his approach to the all-party group. When he considers a number of these issues, I wonder if he feels, as I do, that the importance of advocacy is underlined? Furthermore, does he believe that advocacy will become a central part of the Government’s approach to these matters?

[Mr Burstow]

I am very grateful to the right hon. Gentleman for his intervention and his question. He raises a point that I will move on to shortly, but I certainly see advocacy as being very important in this area. Looking forward, we will need to ensure that we reflect what we are learning from the work that is going on at the moment in the new commissioning landscape and in the new frameworks for accountability at a local level.

Both the right hon. Gentleman and the shadow Minister have referred to annual health checks, so let us look at that issue. It is quite encouraging that many more people with learning disabilities are now receiving an annual health check from their GP. Last year, just over one in five people with learning disabilities received an annual health check and the latest figures show that two in five people with learning disabilities have received their annual health check within the last 12 months. However, that is clearly not good enough, as it means that three in five people with learning disabilities still do not receive an annual check. As a Government, we are determined to push that process forward to ensure that the training and development that has taken place delivers in that regard.

I have heard many stories about how those health checks have identified, for example, cataracts or cases of diabetes. Furthermore, as has already been said in this debate, if we put ourselves in the position of a person having such a health condition but being unable to communicate the symptoms, we can begin to understand the difference that these health checks can make. I am therefore certainly keen to see annual health checks continue for people with learning disabilities, and we are looking at the most cost-effective way of ensuring that.

Reference was also made to the training of staff in relation to carrying out health checks. Undertaking training is certainly part of the requirement for all the GP practices that are delivering the annual health checks for people with learning disabilities. That training is about raising awareness of people with learning disabilities and their families, and particularly about ensuring that communication issues are understood, that advocacy is provided and that there is also liaison with staff in the acute sector. So there are a number of aspects about training and I will say more about that shortly.

The right hon. Gentleman referred to the training, as did the hon. Member for Kingswood. Reference was made to the recent Mencap poll, which makes disturbing reading as it shows the number of staff who have not had training to help people to make reasonable adjustments to different situations.

The shadow Minister talked about the need to look at people in the round, so that we do not only look at either their learning disability or their physical needs but at both elements. In that way, we will not allow diagnostic overshadowing to take place. That issue must be properly addressed in training. Therefore I wanted to ensure that right hon. and hon. Members were aware that the Council for Health Regulatory Excellence is working with professional bodies to support better training and to improve professional standards. That relates to a point that the hon. Member for Kingswood made about the need for professional ownership of that training, so that it is not just something that is imposed from the top but is seen by professionals as an essential way of learning to do their job better.

As a Government, we are working with the council to reach not only doctors and nurses but the full range of health care professionals. That is clearly important when it comes to meeting the often complex needs of people with learning disabilities. For example, speech and language therapists have a key role in tackling feeding issues of the type that the right hon. Member for Coatbridge, Chryston and Bellshill talked about. However, he referred to a case that I fear I cannot talk about any further, because it is before the courts. Occupational therapists are also important in helping people to develop the skills that they need to live independently, so I am pleased that all the regulatory bodies are reporting progress on that work and I will certainly keep in touch with them to ensure that that progress is maintained. I also want to ensure that that learning is embedded as we move towards delivering the vision that is set out in the Government’s health White Paper published on Monday.

Meanwhile, at a primary care level staff in all GP practices that are delivering annual health checks now have the appropriate training. The Royal College of General Practitioners is due to publish additional training materials for all GPs this summer, which are about getting health checks right for people with learning disabilities. I hope that that reassures right hon. and hon. Members that the Government are not about to shelve the issue of training but are determined to see training programmes develop.

[Barbara Keeley]

I think that the point about annual health checks has been emphasised. Does the Minister see those checks continuing? Will there be funding for them to continue? He has helpfully quoted some figures that show that we have moved from a situation in which one in five people with learning disabilities receive an annual health check to a situation in which two in five receive such a check. Does he know whether that gap—a gap that means that three in five people with learning disabilities do not receive an annual health check—exists because those people are not known to services or because GPs are just not carrying out those checks? In other words, is there an information gap or is there a practice or provision gap? If he does not know now, perhaps he can tell me in writing later.

[Mr Burstow]

Regarding the hon. Lady’s point about funding, given the tone and the substantive nature of what I have said about annual health checks it would be surprising if the Government were not determined to see those checks being continued. However, we are obviously in the middle of a spending review and therefore we must ensure that we achieve value for money in those checks. I think that this debate underscores that point only too well. I will write to the hon. Lady on the other point, because I want to get the answer absolutely right, and I will ensure that other hon. Members involved in this debate are copied in.

The hon. Lady also mentioned the value that we all rightly attach to the contribution made by family carers. I hope that she and others, while perusing the White Paper during the past two days, will have seen that one thread running through it from principles to practicalities is the value that this Government attach to the role of carers. For the first time in a Government White Paper, we have stated clearly that we see carers as partners in recovery and the provision of good care, which we want to ensure is provided appropriately in different circumstances. It is an important signal that we hope will be taken on board.

On annual health checks, the hon. Lady will know that the Government are in the midst of a series of pilots to evaluate the best way to implement health checks for carers. We will await the outcomes of the pilots before making further decisions about their wider roll-out.

On engagement, which all hon. Members have mentioned, it is crucial that patients and families are at the heart of all health care services at all levels. The White Paper makes that clear by borrowing from an important past report. We want the aspiration “No decision about me, without me” to inform how the health service develops. We need people with learning disabilities to be fully involved in the planning and design of services at a local level. If we can create an NHS that genuinely listens and responds to patients, in line with the White Paper, we will ensure that people with learning disabilities get the support and advocacy that they need to make their voices heard. That is clearly important, just as it is important to ensure that the values and principles behind the Mental Capacity Act 2005, which I supported during its passage through the House, are understood and translated into practice.

Some parts of the country are already doing great work in that area by, for example, bringing in user-led organisations to advise staff and help them offer patients the right advocacy. We want to see more of that. We will also work through the new body proposed by the White Paper, HealthWatch, which will not only handle patient complaints but be responsible for providing advocacy and support in pursuing them. HealthWatch will have a key role in ensuring that the voices of those whom we are discussing are heard fully across the NHS. It will be a powerful champion for people who are not always heard.

Hospital passports have not been mentioned, but they none the less address some issues raised in this debate. The hon. Member for Kingswood discussed, among other things, the role of liaison nurses. Hospital passports are another helpful development and were one of the top suggestions in Mencap’s charter. The passports are short, accessible booklets that can be carried by people with learning disabilities to give NHS staff information about their medical history, any drugs that they are taking and their likes and dislikes. They are a low-cost but effective idea and are offered by many hospitals throughout the country. I want to see them spread to every hospital. I suspect that the case mentioned by the hon. Gentleman involving poor communications in hospitals might have been avoided if such a passport had been available.

Clearly, acute liaison nurses also have a role to play. All strategic health authorities recently reported on the issue to the Department of Health, and all referred to the value of acute liaison nurses. The number of posts is increasing as such nurses demonstrate their value. They play a part in building capacity, training colleagues, raising awareness across the work force, improving the patient experience and, importantly, reducing length of stay and getting people back into the community appropriately.

I have mentioned commissioning structures. As we migrate from the old system to the new, we must ensure that the learning is carried over. That creates opportunities and possibilities for organisations such as Mencap and others to play their part in ensuring that they work alongside commissioners at a local level to deliver it.

[Barbara Keeley]

While the Minister is on that point, will he enlarge on how the commissioning of the services that we have been discussing will take place? Will they be locally commissioned, or will the NHS independent board commission them from GPs?

[Mr Burstow]

The NHS commissioning board will commission the family practice services that GPs provide, but the GP commissioning consortiums will be responsible for a wide range of commissioning services, some of which they may do collectively at a sub-regional or regional level, while others will be discharged by the NHS commissioning board. The important thing is the expertise available, and we say in the White Paper that GP consortiums will have access to that expertise in a number of ways. They might choose to bring it in-house, use their local authority’s commissioning expertise—some local authorities have exceptional expertise—or work with third sector organisations. There are already examples of that happening, such as with Turning Point. I suggest that opportunities exist for organisations to offer commissioning expertise in order to develop services that are much more in tune with the needs of particular patient groups.

The right hon. Member for Coatbridge, Chryston and Bellshill was absolutely right to flag up the wider societal challenges of discrimination, particularly the discrimination faced by people with learning disabilities. He was therefore right to identify, as the Government do, that we must not approach the issue in a narrow, health-focused way. We need a wider social perspective in taking forward strategies on the matter, and that will be part of our thinking throughout.

The right hon. Gentleman also asked me about the Mansell report, which I know was the subject of discussion last night at the meeting of the all-party parliamentary group on learning disability. I thank Professor Mansell for his important work, not least because I understand that the work reported yesterday was commissioned by the Department of Health. It demonstrates the vital importance of improving services and outcomes for people with learning disabilities and provides important examples of good service and good practice that we must ensure sit firmly in the strategy going forward. My officials will work further to ensure that we see how the findings fold into the ongoing work on the strategy.

The right hon. Gentleman asked about the DVD. We are happy to ensure that it can be accessed on the website and to discuss other ways we can collaborate to maximise awareness of it and the Mansell report. We are keen to ensure that people have access to it and will do what we can to achieve that.

I am told that financial matters, to which the right hon. Gentleman referred, were discussed last night at the all-party group meeting. How can we maintain and accelerate progress in the straitened financial circumstances that the Government have inherited? Part of the answer is that the NHS has benefited from this Government’s commitment to real-terms growth. However, we have inherited a debt legacy that must be tackled, and we have made it clear that the sick should not have to pay the price for that, nor should people with learning disabilities. The NHS will have to be even more creative and willing to work in new ways with the third sector and other organisations to maintain and quicken the pace of reform. I am confident that we can do things differently and achieve with less, and that we can do more for people with learning disabilities.

Ultimately, we need to achieve real change to make an impact on the ground. Yes, we need better training, evidence and engagement but, ultimately, we need better services driving better outcomes for patients. We need services that are integrated—the White Paper provides a way forward on that—as well as more responsive. They must be built around the individual needs of patients and families, meet their expectations and give them a say in their treatment and ongoing care.

In conclusion, the NHS White Paper can be the catalyst that we need to drive change. The message is simple. We want an NHS that is focused on outcomes and judged by what really matters to people: the extent to which it helps them live longer and healthier lives. We will need to consider how we measure those outcomes in the right way for people with learning disabilities, and I look forward to working with the all-party group, Mencap and many other organisations on that. Reducing preventable mortality might, for example, be a helpful starting point, and we want to consult on that.

The shift away from process-led measures towards outcomes will bring a cultural shift in care and help the NHS to shake itself free of any of the lingering discrimination that has been talked about in this debate—any sense of looking at the disability rather than the individual as a whole in terms of how treatments are decided. That is the opportunity the Government’s White Paper presents and I am determined to work with the right hon. Member for Coatbridge, Chryston and Bellshill, the all-party group, Mencap, families and others to ensure that we grasp that opportunity and deliver the best outcomes possible.

[Mr Jim Hood (in the Chair)]

The sitting is suspended until 11 am.

10:40

Sitting suspended.