Saturday, 7 November 2009

CEREBRAL PALSY IN THEIR LORDSHIPS' HOUSE

Some snippets from Hansard

4 November 2009
Column GC67

Health: Cerebral Palsy

Question for Short Debate
4.56 pm
Tabled By Lord Hameed


To ask Her Majesty’s Government what measures they have taken to prevent cerebral palsy.

Lord Hameed: My Lords, I hope that this Motion today, which refers specifically to cerebral palsy, will highlight the issues which are directly relevant to prevention of this condition. It is often said by Members in their opening remarks, “This debate is long overdue”, when introducing a topic close to their hearts. However, the paramount issues of health and prevention have been repeatedly raised since the Black report in 1980, the Winterton Select Committee on maternity services in 1990 and the Wanless report in 2002. It is therefore all the more astonishing that constructive action to reduce cerebral palsy's prevalence remains overdue…

…Although it is widely believed that cerebral palsy results from obstetric complications, the research undertaken by the Little Foundation indicated that infection and poor maternal foetal nutrition before birth significantly increase the risk of damage to the brain's development. There are startling statistics for everyone to see; for example, cerebral palsy costs the National Health Service a staggering £4 billion per year, with 50 per cent of cases associated with low birth weight… Very low birth weights are not only associated with cerebral palsy but also with diffuse brain injury and disordered brain development leading to poor cognitive abilities and learning difficulties in general.

It is astonishing to think that so clear an association, which costs the already over-stretched NHS £4 billion per annum, has not dictated a clear and proactive policy in favour of preventing or reducing further instances of cerebral palsy. This condition varies in its severity with problems including motor disabilities, visual difficulties, hearing problems and trouble with writing, eating, talking and walking. Epilepsy, autism and behavioural pathology are only a few of the many difficult conditions associated with cerebral palsy...

Because of the lifelong impact of cerebral palsy, the financial and social costs are disproportionately high, which should provide a sharp and prompt action. Furthermore, just as we currently have campaigns to prevent obesity in children and to educate the public about the dangers of smoking, there is a clear moral obligation to take serious action in preventing cerebral palsy and allied brain disorders from further escalation…

However, when we look at how seriously we take the issue of prevention influencing good health in the United Kingdom, the results are disturbing … the cost of brain disorders has now overtaken all other burdens of ill health at £77 billion in 2007. This cost is now greater than the cost of heart disease and cancer combined… on the means of prevention….

What is the problem and what exactly can provide a solution? The fundamental problem directly relevant to cerebral palsy and allied developmental disorders is quite clearly related to the prevalence of low birth weights in the UK. Britain now has the highest rate of low birth weights in Western Europe, with a record close to that of Romania, and twice that of Finland and Samoa…

Lord Macdonald of Tradeston: My Lords… From what we have heard, it is clear that cerebral palsy, in all its forms, is a major healthcare issue in the UK. As we have heard, it afflicts about two in every 1,000 babies. Assuming 600,000 births per year in Britain, that will mean about 1,500 new cases a year. Given a lifespan averaging 70 years, that means around 100,000 people with cerebral palsy in total. That makes it the most common motor disorder, one often accompanied by epilepsy, learning and behavioural difficulties and dystonia, each bringing additional problems in need of solutions…

Does the Minister agree with those consultants who believe that more comprehensive national registers and databases linking maternal and child health records are a necessary basis for future research strategies? At present, the collection of data on cerebral palsy is said to be ad hoc and patchy. Might there not be some kind of legal requirement to collect such data? Good data on foetal and neonatal brain damage and neurological dysfunction is seen by some specialists in this area as essential for progress, alongside appropriate epidemiological clinical and scientific input, to identify national strategies and interventions, including new imaging methods…

In order to support children with cerebral palsy and their families, the Government should prioritise more training and education of healthcare professionals on cerebral palsy and dystonia; better co-operation between health, education and social services in the interests of the children; nationwide resources for data collection and the development of national protocols and studies; and greater support for organisations such as Scope, HemiHelp and the Dystonia Society to develop strategies within communities to help children with cerebral palsy and dystonia. I trust that these groups, with the health professionals and medical researchers, can count on enhanced support from government in working towards the ultimate goal of preventing cerebral palsy blighting so many young lives.

Baroness Scott of Needham Market: My Lords… two people close to me have children with cerebral palsy, so I see regularly at first hand what the noble Lord, Lord Patel, described at the heartbreak that is involved in raising a child with this condition. As it affects one in 500 babies, it is likely that many of us will know someone who deals with this on a daily basis…

…What strikes me about my two friends is that their children were born 17 years apart and yet have had very similar experiences. This demonstrates that, while we have invested a huge amount in research, we have not kept our response up to date in terms of what happens after birth. That is what I will focus on.

It is strange that, despite the consensus that early diagnosis is extremely helpful, too often it does not happen unless there has been a crisis at birth. Often one hears from parents that they sense that something is not right about their child, but cannot get the health professionals to take them seriously…

A friend of mine has a toddler with CP. He was diagnosed fairly early because his parents were articulate people who knew their way around the system and would not take no for an answer. When they eventually received the diagnosis, they were told that there would be a seven-month waiting list for physiotherapy and then their son would receive one hour a week. They have done what other parents have done and have turned to the Peto Institute in Hungary for help for their son.

I recognise that there is controversy about the methods of the Peto Institute, and that the jury is still out. Nevertheless, for many people, that has provided the only hope, because the Peto Institute offers an essentially optimistic way forward for parents and children who are suffering very badly from low morale and a sense of hopelessness. The work that the institute does through its conductive education programme, working to improve social, emotional, cognitive and communicative skills, as well as motor problems, is enormously powerful for the parents and the young people. I am told by parents that the conventional approach that they receive in this country fails to educate them about how much they can do, even about simple things, such as massage.

Few parents have access to conductive education. When they do, they often find that it comes to an end when the child reaches school age. Then, the child usually regresses. That is very demoralising for the child and for the parents. That points to, to use the cliché, a lack of joined-up thinking between the healthcare professionals, the social care professionals and education professionals, many of whom do not really understand that a child with CP will often have multiple problems. They often find that the specific programmes aimed at people with learning difficulties assume that the child has no other impairments, while the programmes aimed at people with physical problems often ignore the fact that they may also have learning difficulties. There are some harrowing stories about the failure of health services to understand the special needs of some individuals...

Although it is clear that the reduction of cerebral palsy is the ultimate aim, the fact is that over the years, we have not been able to achieve that. Therefore, I hope that the Government will continue to invest as much as is needed to make the lives of those children who have it better.

Baroness Thornton: I am pleased to have the opportunity to discuss what the Government are doing to reduce the incidence of this disabling neurological condition which affects approximately two per 1,000 live born children. As has been mentioned, it is the largest cause of childhood physical disability in the developed world…

The noble Baroness, Lady Scott, mentioned the Peto Institute, which is renowned and provides many parents with additional support, advice and education. It is one of a range of models of care which helps to meet the needs of some children with cerebral palsy and their parents…

… Our overwhelming objective is to improve outcomes, including reducing the incidence of cerebral palsy. This means continually seeking the right kind of research over the right kinds of periods and improving the quality of care for women, babies and their families.

The above comprises just some extracts from an extensive debate. Many of the Lords taking part were themselves experienced and high-ranking medical specialists so the report in full contains considerable technical detail on causation, incidence and prevention. See it in full at:

Picked out particularly in the above extracts are some headline points in the wider discussion of cerebral palsy, and Conductive Education.

Conductive Education in da House

It is nice to see Conductive Education mentioned properly again in Parliament, and in such an unquestioningly accepting tone, including in the concluding contribution by Baroness Thornton who as the responsible Heath Minister was speaking for the Government

Salutary, however, to see that, after twenty years’ hard graft in thirty-odd establishments across the country, Conductive Education was mentioned solely in terms of going to Budapest.

No further comment.

The big Conductive Education debate in the Lords

http://www.publications.parliament.uk/pa/ld199899/ldhansrd/vo990519/text/90519-13.htm

7 comments:

  1. Maybe time has come to produce a new film : Standing up for CE. This time about British parents hearing about CE in the UK and taking their child to a British conductive education framework

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  2. Salutary, though, to see that, after twenty years’ hard graft in thirty-odd establishments across the country, CE is mentioned solely in terms of .... health and care.

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  3. From the contribution to the debate by Lord McColl of Dulwich: "Long-term complex disorders require the integration of health, education and social services, for which there are no clear guidelines. Charities and NGOs have traditionally provided many of the services for childhood disability, but there is an unwillingness to engage in long-term contracts with them. This is quite an omission."

    Note especially the last two sentences.

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  4. Baroness Thornton commented: "I congratulate and thank the noble Lord, Lord Hameed, for picking up this debate from the noble Baroness, Lady Finlay."

    I'm not sure what she meant by "picking up", but I followed up contributions by Lady Finlay and found that she had asked questions about cerebral palsy on 22 Jan 2008 (http://bit.ly/bXkPD) and on 20 April 2009 (http://bit.ly/3hOcqj.

    Lady Finlay is a professor of palliative medicine at Cardiff University School of Medicine (http://bit.ly/12tT6)

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  5. Excellent conversation amongst the Noble Ladies. Will it ever seep down to the Lower House for some long overdue ACTION?

    AS TO THE MEANING OF "PRICCS"- OF COURSE IT PRIMARARILY MEANS 'PRISON BED' in Hungarian - but why not allow a technical word to develop a second, different, but equally technical meaning? The 'pető priccs' It has served its multiple purposes excellently in our case.

    Emma

    ReplyDelete
  6. Excellent conversation amongst the Noble Ladies. Will it ever seep down to the Lower House for some long overdue ACTION?

    AS TO THE MEANING OF "PRICCS"- OF COURSE IT PRIMARARILY MEANS 'PRISON BED' in Hungarian - but why not allow a technical word to develop a second, different, but equally technical meaning? The 'pető priccs' It has served its multiple purposes excellently in our case.

    Emma

    ReplyDelete
  7. Excellent conversation amongst the Noble Ladies. Will it ever seep down to the Lower House for some long overdue ACTION?

    AS TO THE MEANING OF "PRICCS"- OF COURSE IT PRIMARARILY MEANS 'PRISON BED' in Hungarian - but why not allow a technical word to develop a second, different, but equally technical meaning? The 'pető priccs' It has served its multiple purposes excellently in our case.

    Emma

    ReplyDelete