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The Learning Disabilities Elf

Findings of confidential inquiry in the deaths of people with learning disabilities ready to publish findings

John Northfield

Our friends at Norah Fry in Bristol who are responsible for carrying out the work on the confidential inquiry into premature death in people with learning disabilities have asked us to let you know that the final report of the study will shortly be available and that there will be two opportunities to hear some presentations of the findings

The first will be at a conference in London over two days, 20th and 21st March. The details can be found on the flyer

The second is a less formal occasion and will give an opportunity to discuss the findings. These will take place in Bristol on the morning 26th March and Gloucester on the morning 27th March starting at 10.00am.

You must book a place and you can do this by contacting the team in advance  –
by phone on 0117 3310980
or by email:   [email protected]

The Confidential Inquiry was commissioned by the Secretary of State for Health as a result of a recommendation by Jonathan Michael in ‘Healthcare for All’ the report of the Independent Inquiry into access to healthcare for people with learning disabilities. The Confidential Inquiry team were charged with looking into premature deaths in people with learning disabilities in order to provide evidence for clinical and professional staff of the extent of the problem and to produce guidance on prevention

The team have already produced preliminary findings which suggested a death rate in the study area two to three times higher than expected with half of all deaths unexpected.

They also found from their preliminary results that the median age at death for people with mild learning disabilities was 67 although for those with profound learning disabilities it was 46

They have pointed out though that they have found evidence of some good practice and they will be presenting some of this in the events described above.

You can read the second preliminary report in full here.

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Written by

After qualifying as a social worker, John worked in community learning disability teams before getting involved in a number of long-stay hospital closure programmes, working to develop individual plans for people moving into their own homes. He worked for BILD, helping to develop the Quality Network and was editorial lead for the NHS electronic library learning disabilities specialist collection. This led him to found the Learning Disabilities Elf site with Andre Tomlin as a way of making the evidence accessible to practitioners in health and social care. Most recently he has worked as part of Mencap's national quality team and also been involved in a number of national website developments, including the General Medical Council's learning disabilities site.

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  • Pauline Thomas

    Pauline Thomas

    13 years ago
    Anything that highlights the plight of people with LD and the second class treatment that is so regularly meted out to them because someone in power deems to think that their lives are worthless is welcomed. However I do passionately believe there is a huge lack of understanding in the causes of why people with learning disabilities are often prone to depression and subsequent anger that leads in many cases to challenging behaviour. Why is this very important subject not being studied or given any credence by the DoH? I have proof that in my LA alone, the rise in referrals to the mental health team have risen tremendously since the introduction of Valuing People and the subsequent closure of day centres in favour of 'out in the community schemes' Many of these people have lost valuable links with their peers and are very very unhappy but still nobody in power will recognise what is staring them in the face. At a Carers meeting today my husband asked pointedly to a council officer 'whether 'Valuing People' has been successful in making people with LD lives better.' No answer. We know the answer don't we? I welcome all these inquiries into bad practice, but lets look at things through the eyes of the people who are being so badly treated and ask ourselves would we tolerate being studied and prodded and talked over knowing that they (the powerful ones) are never going to give you what you want and what would stop you feeling so depressed.