Mencap dismayed by lack of progress to stop avoidable deaths of people with a learning disability

mencap_logoYesterday evening (18 September) the Department of Health published their one year progress report on addressing premature deaths of people with a learning disability in the health service. Mencap is seriously concerned by the unacceptable lack of progress in many areas, and is calling on the Government to commit to progressing vital changes that we know will stop people with a learning disability dying avoidably in the NHS.

Jan Tregelles, chief executive of Mencap, said:

“Today’s report shows an unacceptable lack of progress in tackling the life-threatening health inequalities people with a learning disability face in our NHS.

“1,200 people with a learning disability die every year within our NHS due to inadequate care – that is three people a day. The Confidential Inquiry into deaths of people with a learning disability set out the changes needed to stop this scandal of avoidable deaths, but there has been an unacceptable lack of progress made in implementing many of the changes needed.”

“Even on areas where welcome progress has been made, such as in setting up a national mortality review, we see that government promises have already been broken, with the mortality review now not starting work until next summer at the earliest, when March had been promised.

“Over the last decade almost 100 deaths of people with a learning disability have been reported to Mencap by families. They feel poor quality care, lack of well trained staff and indifferent attitudes are to blame for their loved one’s death.

“People with a learning disability and their families have waited too long for change. Mencap is calling for the Government to act immediately to fully implement all of the recommendations of the Confidential Inquiry and make sure measures are put in place to stop the needless deaths of people’s loved ones.”

Kirsty Jayne Pearce was just 17 years old when she died avoidably within the NHS. It took her father Chas nearly 10 years to get answers, where an Inquest finally took place and concluded serious medical failings in the care contributed to Kirsty’s death.

Kirsty’s family said:

“When our beautiful daughter Kirsty died, like us she still believed that the hospital staff would save her. They failed her and allowed her to die in pain and without dignity.

“There were a catalogue of errors and significant failings by the medical and nursing staff on the night of Kirsty’s death and for this the staff responsible should be ashamed. There is no doubt that those responsible for Kirsty during the night she died broke their duty of care towards her.

“Since she died we have been fighting for justice for Kirsty. It has been very hard to get hospital staff to accept that they have made mistakes. It breaks our hearts to remember how frightened she was during her final hospital stay.”

About Mencap

There are 1.4 million people with a learning disability in the UK. Mencap works to support people with a learning disability, their families and carers by fighting to change laws, improve services and access to education, employment and leisure facilities. Mencap supports thousands of people with a learning disability to live their lives the way they want. www.mencap.org.uk

1 Comment on "Mencap dismayed by lack of progress to stop avoidable deaths of people with a learning disability"

  1. As the mother of a 17 year old autistic daughter, who has had first- hand knowledge of the NHS, GP, CAMH, Social Services and Education Services, google finolamoss yo read my blog, I would like to point out the flaws in the systems which have only been made worse by the MCA 05.

    The fundamental problem is that all these agencies work in a cabal, which is complicated, secret and all powerful, to protect their own interests, and to make as much profit out of the disabled, with the least legal risk, and are completely unaccountable under the present system, which encourages whitewashing, and hides abuse.

    Legally it is almost impossible for parents to prove the systems abuse, and if they can by then it is too late and in any event does not change the system, just the insurance premium and the risk assessment.

    The mentally disabled are mainly treated by drugs, expensive CAMHS and NHS assessment centres mentally assess and drug, but often do not physically examine, beforehand, as this would be an assault, and need a deprivation of liberty order, yet drugs to tranquilises like ketamine , are regularly used. As are dangerous restraint methods.

    Hansard has admitted despite the numbers dying from over medication, no central record is kept of the amount of drugs used, and it is left to the individual on message GP’s and hospitals to control. Only last year 2 young male autistic inpatients died horrific deaths due to faecal impactions, common in autistics, particularly under stress, and exacerbated by the respiridone they were force fed. There is no provision for adult scans to detect these impactions, and GPS and NHS do not want to know about autistic’s medical problems, and neither do social services.

    Yet agencies are making huge profits out of the mentally disabled, disordered and it is growth industry.

    The MCA and Children and Families Act was designed to remove these people by court orders as in their best interests, under MCA 05, from the only people who care, to independent living, the forms for adult services assessment do not even contain a ‘domain’ for medical physical problems, these simply are not looked for, or treated . Mentally disordered, as I have witnessed from my own daughter, have behavioural problems because of an impaction, appendicitis or even rotten teeth, their behaviour is medicated with antipsychotics etc. so they can no longer scream the agony they are feeling.

    When they eventually die, there are no serious case reviews, or coroner’s inquest, they are allowed to be effectively murdered by the state, and if subject to a MCA order, highly likely as police usually involved if in the community and work with agencies, even their body parts can be used.

    They can also be used as guinea pigs for expensive therapy and drug trials. So are ever more useful to a privatised, profit making NHS.

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