People with Learning Disabilities (NHS Treatment)

Tom Clarke Excerpts

Wednesday 14th July 2010 Westminster Hall

[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.

--- Later in debate ---

[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.