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Tom Wakefield was a humorous and sociable young man and a well loved son, brother and twin. He was born with profound multiple learning disabilities but
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could understand speech and was able to communicate using facial expressions and arm movements. He needed support in most things in his life, but gave plenty of affection and humour in return. I am in absolutely no doubt that Tom Wakefield would be alive today if he had not had a disability.

Tom was in a residential school in Oxfordshire and had a very close relationship with his family, including his twin sister, Judy. However, as the time came for Tom to leave his school, his family found that no plans had been made to find him an appropriate placement. At the same time, Tom’s health was deteriorating; he was losing weight and expressing signs of pain and distress. Tom’s mother, Sara, describes calling the school every evening to find out how her son was and hearing him crying in pain, each night for months on end. She kept raising her concerns about Tom’s health but she was told that his problems were behavioural, not physical.

Attempts to get Tom’s GP to listen to Tom and respond to the pain that he was in failed. Tom’s GP did not listen to Tom’s mother, Sara, and investigate why Tom was in such distress. From my own background in a dementia charity, I know how important it is for professionals to value the unique bond that people with communications difficulties have with their carers and their families, and for the insights of their families to be listened to and acted on.

Eventually, Sara got Tom to an outstanding specialist, Dr. Julian Amory, who recommended investigations into his oesophagus to see if that was the cause of his pain and distress, but those investigations were never carried out. Problems with digestion are common in people with profound learning disabilities and can be managed well, but only if they are investigated and diagnosed.

In the autumn of 2003, Tom’s health was deteriorating and his behaviour was getting worse too, as might be expected given the pain that he was in. The school gave him six weeks’ notice to leave. Social services then found him a place in an NHS in-patient facility in Cheltenham’s Delancey hospital. The family were not persuaded that this was a good idea, but they were at least told that medical assessments would be carried out and they might discover why Tom’s health was declining so rapidly. However, the ward was a psychiatric ward and, once again, no physical investigations took place. Tom was no nearer receiving a diagnosis for his increasing pain and he received no pain relief treatment. His health and behaviour deteriorated further. I think that hon. Members will agree that his story, by this stage, is the stuff of nightmares.

Tom was in such serious pain at this point that the only way that he could express it was to use his fingernails to scratch his head so hard that he drew blood. His family were desperate to get him help, but they were unable to get the health or social care professionals who were involved in his life to respond.

Finally, after two and a half months, a place was found for Tom at Prospect Place in Cirencester. In an all-too-rare example of good practice, staff there quickly realised that he was in serious pain and was physically very unwell. They had him admitted to Cheltenham general hospital, where he was found to have an ulcerated oesophagus. If Dr. Amory’s recommendations had been followed, that problem would have been discovered years before and action could have been taken in time.
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By this stage, however, Tom’s oesophageal tract was in a bad state. It would have been causing him intense pain and distress for a long period of time and it would also have made it very difficult for him to eat. A feeding tube was put into his stomach, to try to get much-needed nutrition into him. Even then, that tube was removed and Tom was left for long periods of time without appropriate food and nutrition. Tom’s twin sister, Judy, recalls desperately trying to get the consultants in the hospital to see how valuable his life was, explaining that the young man in the hospital bed was “the other half” of her, with a life equally worthwhile.

Tom Wakefield died of aspiration pneumonia and reflux oesophagitis in May 2004. His family were forced to watch him suffer for two and a half years, unable, until the end, to get any health professional seriously to investigate what was wrong with him and make efforts to help. Tom was passed from hand to hand, with professionals finding it impossible to take responsibility. All the while, his family continually fought a system that was supposed to be caring for him.

When Tom’s family entered the complaints process, in an attempt to get justice for Tom, they found that the discrimination that he had experienced in his life continued after his death. The Healthcare Commission’s response to their complaint suggested that Tom could not have expected better, stating that


Do we have a national health service that is unable to meet the needs of an entire section of the population because their needs are too complex? I do not believe that that is acceptable and I am sure that the Minister does not think it is either, not least because Tom’s needs were not “unique”. Indeed, the numbers of people with profound and multiple learning disability is increasing. All such people need to be able to access health services to keep them well, and the NHS needs to respond to the increase in their numbers. It is not acceptable to assume that specialist services will always fill the gap. People with a learning disability must be able to access mainstream as well as specialist health care, or in some cases we will be condemning them to no health care at all.

It is impossible to listen to Paul, Sara, Judy and Richard Wakefield and not be touched by the bravery that it has taken, and continues to take, for them to share this awful episode in their lives with the world, knowing that it will not take away what they have been through, but doing so in the hope that it might bring about change in the future for disabled people and their families. Mrs. Wakefield continues to work with profoundly disabled children in Cheltenham and, along with the rest of her family, she is determined that what happened to Tom must not be allowed to happen to anybody else.

Tom’s story was the germ for Mencap’s “Death by Indifference” campaign, and I would also like to pay tribute to Mencap for its exceptional work on this issue. My hon. Friend the Member for Edinburgh, West (John Barrett) referred to an earlier Mencap report and in 2006 the Disability Rights Commission highlighted the fact that people with learning disability were not receiving equal health care. The evidence of poorer health and poorer health care was already mounting, but it was not
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enough to prompt action. It was not until this inequality was thrust into the light by stories such as Tom’s that this issue really received the attention that it deserved.

In response to “Death by Indifference”, an independent inquiry was established and that inquiry has now reported; I commend the report to the Minister. It confirms what many people have been saying for a long time—that people with a learning disability are not receiving equal health care—and makes strong recommendations about what needs to change. In my view, the overarching message from the report is that, despite reams of legislation and policy, the NHS is still not meeting its obligations to people with learning disabilities.

With good training, some of the steps that need to be taken are astonishingly simple. For example, there should be longer appointment times, to give health professionals time to communicate properly with their patients who have a learning difficulty. Tom could answer yes/no questions with very clear arm gestures, but his family found that the vast majority of doctors and nurses did not have time to communicate directly with him, despite the family’s explanations of his means of communicating with them. Those health professionals needed to take more time to understand Tom and to communicate with him on his own terms.

As my hon. Friend the Member for Edinburgh, West said, communication is key to every doctor-patient relationship. However, as is the case with people with dementia, more creative ways are needed to understand patients with a learning disability who find speech difficult or who do not understand how to explain their symptoms. If any of us were in hospital following an accident that left us unable to speak, we would rightly expect our doctor to make every effort to discover what was wrong, to read other signs and to use tests to rule out serious problems, but no one tried to rule out serious problems in Tom’s case. Tom could not tell the doctors that he was in pain, or where the pain was, so his pain was ignored. He needed health professionals who would not simply dismiss his changes in behaviour as part of his learning disability but who would instead ensure that any physical causes of distress were eliminated.

Tools such as the disability distress assessment tool, or DisDAT, which was developed in St. Oswald’s hospice in Gosforth, use the knowledge of family and carers, with careful observation of patients with profound and multiple learning disabilities, to enable health staff to spot signs of distress and ensure that pain can be identified and managed.

I was delighted to see Sir Jonathan Michael recommending in his report that families should be included as a matter of course as partners in the provision of treatment and care. If Paul and Sara Wakefield had been listened to, their son might well be alive today. The Department of Health needs to ensure that the involvement of family, as recommended by Sir Jonathan, is embedded into practices across the NHS.

Tom’s story also highlights the interconnected failures that people with a learning disability and their families often face. Tom’s father had to give up his permanent teaching job to find his son a suitable place to live when he left school, and even with that sacrifice the hospital that Tom was sent to initially was a totally inappropriate stop-gap. Tom went there because, despite years of
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warning, social services had not found the time to plan where he could go after he left school. It was left until the situation reached crisis point and then this vulnerable young man, whose health was going downhill fast, was, frankly, dumped in the only place that had space for him. Only later was Tom cared for, diagnosed and noticed in a way that his parents had sought for so long, and it was only then that they discovered that he was a very ill young man.

Speaking to his family today, I know that they are still understandably angry, but they are also increasingly impatient. I call on the Government to accept the recommendations of the independent inquiry in full. Training and the involvement of families are, for me, the absolute top priorities. Therefore, I also call on the Government to ensure that they respond separately to those specific matters, so that this issue does not slip from the radar and the report does not become another dusty report on a shelf. It should lead to real change, and we should all know when that change will take place.

3.29 pm

Sandra Gidley (Romsey) (LD): I congratulate the hon. Member for Newbury (Mr. Benyon) on introducing this debate, which has been very moving. The fact that there have been so few interventions indicates how powerful some of the speeches have been.

Debates such as this are often prompted by constituency casework, but the individual stories we have heard today are probably indicative of a wider problem. We have heard the stories of Emma and Tom, and there are other cases in the report. I was taken by the story of Warren, who died aged 30 following perforation of the appendix. His mother and father repeatedly asked the doctors who visited him whether he had appendicitis or a blocked bowel, but they were told that he had a virus. Warren died on 25 September 2004. He had a severe learning disability and very little speech, but he could make himself understood to his family.

A powerful theme developed today is one of families being ignored, and we ignore it at our peril. I have come across the ethos many times in constituency cases of people with a lesser learning disability, but it does not always involve dismissing problems as part of the condition. Sometimes the problems are caused by professionals viewing the person as an adult who has rights but taking no account of the fact that that adult might have a low mental age. One would not necessarily treat a six or seven-year-old without recourse to their parents, who might understand their condition. Factors in society such as political correctness sometimes militate against best practice.

The two most powerful comments today were made by the hon. Member for Newbury, who said that the doctors did not listen to Emma’s mother, and by my hon. Friend the Member for Cheltenham (Martin Horwood), who said that Tom would be alive today if doctors had listened to Paul and Sara Wakefield. One cannot dismiss those examples as individual cases because similar problems were uncovered in the Cornwall Partnership NHS Trust and the Sutton and Merton primary care trust. Again, the behaviours uncovered were bad enough, but the problems in those cases had been raised by parents, carers or friends. The biggest
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scandal is that it took the authorities such a long time to listen to them, to investigate properly and to start to do something. Many people were involved.

We heard some facts about learning disability, but it is worth repeating them briefly for the record. People with learning disabilities have poorer health and receive poorer health care than the general population. My hon. Friend the Member for Edinburgh, West (John Barrett) opened his comments by saying that a person with a learning disability is 58 times more likely to die before the age of 50 than someone from the general population. In some respects, the problems are the same as for mental health. Health professionals often do not see beyond the initial diagnosis to the problems underneath. That goes back to fundamental problems of lack of training specifically in dealing with people with disabilities.

People with learning disabilities are also more likely to have health conditions such as epilepsy, heart disease, gastrointestinal problems and cancer. They are more likely to develop mental illness and Alzheimer’s, and are much more likely to have problems with weight. It really is not much fun.

I pay tribute to the work done by Mencap, in particular the “Death by Indifference” report. It highlighted the extent of the problem and led to the independent inquiry mentioned by previous speakers. The inquiry, conducted under the leadership of Sir Jonathan Michael, confirmed that people with a learning disability are not receiving equal service and that legislation designed to ensure equality is not being followed. The report made a series of recommendations, and, understandably, Mencap is keen to have all of them adopted.

The inquiry took the view that much stronger action is required at all levels to deliver equal access to routine health care services, including ill health prevention, health promotion and timely action to address general health problems. I shall briefly mention some of the findings of the inquiry.

Problems of access have been mentioned, but a fundamental underlying problem is that trusts and the people who are delivering services do not seem to realise that it is their responsibility to make reasonable adjustments to support the delivery of equal treatment. They say that they are not discriminating—they feel that they are treating everybody in the same way—but they do not realise that the required method of delivery or communication may be different, and that neglect in that category means that people are not actually receiving the service that they need.

The biggest problem identified is that parents and carers are often ignored. If the Minister does little else today other than undertake to deal with that specific problem, many of the other measures will follow. The inquiry found that there is limited knowledge among health service staff and that there is a strong need for training and education. Partnership working is poor, so there is little joined-up thinking between health and education providers.

It was not in the report, but my hon. Friend the Member for Cheltenham highlighted the problem that often arises when people with learning difficulties transfer from child services to adult services. There is often a gap—a lack of forward planning. Hampshire county council has just introduced a slightly bizarre system in which the transition worker is somebody who does not know the person who has been under the care of the local authority for 18 years. I find that hard to understand.

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Witnesses described appalling examples of discrimination, abuse and neglect across the range of services, particularly in primary care. We often look at the more acute end of the spectrum—secondary care—in which the horrible examples that we heard today happened, but much that happens in primary care could be improved to make the entire experience much better.

We lack data on this group of people and their experience of services. Depressingly, we do not need more legislation, for there is plenty of legislation and guidance. The problem, as highlighted by the hon. Member for Tiverton and Honiton (Angela Browning), is that people are being ignored. She said that doctors disregard their duty. There are ways to take action against those who are guilty of dereliction of duty, but people are too busy fighting the system to think of doing that.

I do not wish to be entirely negative because there are examples of good practice. In Westminster, local enhanced schemes are being developed. In Bristol, a learning disability specialist provides input to public health teams. Torbay has a record system that highlights someone who has a communication problem, and Sheffield and Gloucestershire have a traffic light scheme that signals special needs. There are other examples, but I do not have time to go through them all. Good things are happening, but we need to find a way to spread best practice. That is something that the national health service does not do very well anyway, but it seems to be particularly poor in this area.

Some of the recommendations made have been mentioned. It would be helpful if, when the Minister sums up, she could give some indication of what notice the Government are taking of the recommendations, particularly those to do with training in learning disabilities. It should be mandatory not just for doctors but for all health service workers. Are there any plans to provide such training?

Are there any plans to collect data? How will parents and families be involved, and what onus will be put on PCTs to identify and assess the needs of people with learning disabilities and their carers? If PCTs do not know what needs to be done, they will not commission services.

Does the Minister have any plans for a confidential inquiry into premature deaths among people with learning disabilities? Many charities have called for one. There were other recommendations but, again, time precludes my mentioning them.

I just mention “Valuing People”, which was published in 2001. The hon. Member for Tiverton and Honiton discussed that valuable and useful document. It dealt with people having rights and the importance of their being included in local communities, having choice in daily life and having real chances to be independent. There has been some good initial work, but there are many signs that efforts are almost going into reverse because of financial pressures on local authorities.

I conclude with an article that sums up the situation. A lady called Jean Wilson, who is a carer, says that she “has a PhD” in the breadth of the challenges that she has faced in trying to secure adequate health care for her daughter, who is now 38. She stated:

None of us would have blamed her if she had smacked him round the head with her handbag, but to avoid that in future it would be helpful if the Minister told us how she is going to tackle the problem.

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