People with Learning Disabilities (NHS Treatment)

Barbara Keeley Excerpts

Wednesday 14th July 2010 Westminster Hall

[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.

[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 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.