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Melding: Health checks for the learning disabled in Wales

Speech to the National Assembly for Wales

"This motion would modify the general medical services contract, the GP contract, to allow for an annual health review for people with learning disabilities.

I will start with some of the evidence that can be used to back up this motion, the volume of which has increased dramatically over the last five or six years.

That indicates that this is a strong option for consideration by those who want to see an improvement in health outcomes for people with learning disabilities.

Some of the best work has been done in Wales, and we ought to be proud of that. I refer you to the snappily titled primary care, evaluation audit and research in learning disabilities study—fortunately it has a pretty and short acronym, PEARL—which found that of the 181 people with learning disabilities that it tracked who received a health review, 93 had a new health need identified and 88 did not. New health needs were identified in over half the sample.

The conditions identified included diabetes, hypertension, high cholesterol, thyroid disorders—which are particularly common among those with learning disabilities—dental problems, cardiac difficulties, asthma and mental health difficulties. That is a broad range of conditions, and it was also found that health promotion can be increased by annual health reviews.

The PEARL study then audited the outcome for those people for whom a health need was identified. The researchers returned after nine months, examined the 93 people who had had a health problem identified and found that the health needs of 45 per cent of them had been addressed.

The new health difficulties of 20 per cent of them had been addressed partially, and 35 per cent had either not had the problem addressed at all, or it had not been addressed by treatment.

Therefore, even if we have annual health reviews, it does not necessarily transform the system into a perfect one, but it does start the process by which we can improve health gains for people with learning disabilities.

The study also emphasises how much training is needed among primary healthcare teams to ensure that they provide a service that people with learning disabilities can expect as of right. They are part of the general population and on the lists of various practitioners, and they should receive the same standard of care that you and I expect as of right.

The Disability Rights Commission has also looked at this matter, and it has identified clear evidence of early death among people with learning disabilities.

Different studies have come up with different rates, but there is some consensus that the rate of preventable early death is around four times higher for people with a learning disability than for the general population. That is a colossal figure and should cause us great concern.

The health evidence bulletins for Wales list a range of illnesses that have a higher incidence among people with a learning disability. There is extensive clinical literature to demonstrate the effectiveness of regular health reviews. I cannot put it better than the Disability Rights Commission, which stated that the research evidence is compelling.

So much for the hard clinical evidence: what about the human side?

I feel strongly about this issue because, for nearly 10 years, I shared a house with a lady who had learning disabilities. She was the daughter of my landlady. I became close friends with this lady, who died in early middle age. She was only 40 years old when she suffered a fatal heart attack. I do not know whether her health would have been improved by more effective control in the primary healthcare sector. All I do know is that she received special services.

If she had health problems, she would usually go to the Heath hospital, and her dental treatment had to be done in the dental hospital rather than at a local dentist's surgery. That raises issues.

I will come to the issue of whether a regular review, as opposed to an annual one, is acceptable. A rational case can be made for that, and I am quite happy to discuss that.

However, at present, the fact that 35 per cent of those for whom health needs were identified had not received effective treatment nine months later indicates that an annual system would perhaps be best.

That is an arguable point, but it would be inappropriate to implement infrequent checks of every five years or so.

You may want to argue for regular checks every two to three years, but that would be a much better service than is being received at the moment.

In another case, a woman called Mary became tired and less active, so much so that she had to give up much of her voluntary work, which she found uplifting and meaningful, to sleep most afternoons. Her general practitioner told her that, as she was getting older—she was in her 50s—she should expect to have less energy. Blood tests were taken and did not identify a problem, but her symptoms grew considerably worse, and she lost considerable weight and lost her appetite.

Mary then had an unexpected period—she was well past the menopause—and her GP became concerned and referred her to a gynaecologist. These tests indicated advanced cancer, which had already spread to the liver.

Mary had extensive treatment, including a hysterectomy, but, unfortunately, died 18 months later. I do not know if this case would have been prevented by a regular check-up; that is another matter, but it is more likely to have been if the primary healthcare service was attuned to meeting the needs of people with a learning disability.

To give another example, Simon was distressed, and his parents knew that he was in pain, but, because of his condition, he was unable to communicate that effectively. They took him to the GP who said, 'That is just the way they are sometimes, just take him home.' Luckily, Simon's dentist found the problem.

After returning home from hospital after an operation, David's mother, who is a single parent, contacted her GP to ask for some follow-up support and was shocked to hear her GP say that he did not work with 'these people'. That is the type of problem that must be rooted out.

Fortunately there is much excellent practice in Wales, and, more positively, we can turn to our strong tradition in this regard, perhaps going back to 1983 and the all-Wales mental handicap strategy, which has been updated. That has set a benchmark for best practice in Europe.

We have much to build on, and this has been adopted by all parties as a priority. The all-Wales strategy's three principle themes, namely the right of people with a learning disability to have an ordinary pattern of life within the community, to be treated as an individual, and to have additional help and support in developing their maximum potential, still inform our policy today, which shows an excellent consensus approach. Those are appropriate aims.

'Fulfilling the Promises' is trying to take this thinking into the twenty-first century. It is a good document, and the Government has been solid in its response so far.

It sets ambitious targets, however, and we will not get there by magic; we will only get there by sustained commitment. One of these targets is to improve the health of people with learning disabilities and to reduce any differences between the rates of illness and mortality that they experience and the overall national rates by 2010.

The report states that: 'Each individual should have regular health checks carried out by their Primary Healthcare Team.'

Therefore, I believe that the evidence is clear that we should have a system of regular health checks.

The British Medical Association accepts that, which is why it tried to get regular health reviews into the new general medical services contract via enhanced services, but the UK Government did not commit to that—which is not a reflection on the Assembly Government.

The best route would be to include this as an additional service, to make it comprehensive. Enhanced services can mean people with a learning disability being sent to another practice, specialising in care for people with learning disabilities, to receive that service.

We want every GP practice across Wales to have this expertise so that they can treat members of their population properly.

I realise that the BMA does not favour a change in the UK contract at this stage, but now that we have devolution and these powers have been devolved to us, why are we not prepared to use them? We may not want to rush and say, 'We'll do it from April'; we may want to set a target of making them effective from 2006 or 2007, but the principle is that we should have the right to amend the GMS contract if there is an overwhelming case and if we want to demonstrate best practice in a particular area to the rest of Britain.

However, I emphasise that it is the outcome that is important and that the process is secondary to that. I am prepared to listen with an open mind to what the Minister has to say, and I hope that she will respond effectively.

Finally, I commend the work of Mencap. If Members have not yet read its 'Treat me right!' report, it covers all the issues. We should now follow up and do something constructive for these people."

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