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The father of a severely disabled man has said his son "died an agonizing and unnecessary death" because of the shortcomings in his health care.
Tom Wakefield, from Cheltenham, had multiple and severe learning disabilities and died at the age of 20.
An independent report by Ombudsmen stated the NHS and a council had failed to provide appropriate health and social services care.
Paul Wakefield, his father, said the errors were "torture" for the family.
Mr Wakefield said his son experienced worsening stomach pain and weight loss over an 18-month period but the signs were ignored by medics.
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 We are not complacent as we recognise that there is more we need to do  Jan Stubbings
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"Tom's increasingly anguished reactions to pain were simply seen as bad behaviour," he said.
Mr Wakefield said a plea for his son to have an endoscopy was not taken up.
Tom died of pneumonia and reflux problems but his death was one of six highlighted by the charity Mencap.
This led to the joint report carried out by the Health Service and Local Government Ombudsmen.
Mr Wakefield said the findings of report "asks us to agree that Tom's death was not avoidable".
"The only thing that was unavoidable was medical service failure," he added.
"If unchallenged, parts of this report would have failed Tom Wakefield, and these events will continue to happen to others just like him."
Apology for care
Gloucestershire County Council, NHS Gloucestershire, 2gether NHS Foundation Trust and Gloucestershire Hospitals NHS Foundation Trust have apologised for the shortcomings in the care received by Tom.
Jan Stubbings, NHS Gloucestershire chief executive, said current healthcare practices for people with learning disabilities were being reviewed.
"We are confident that the service developments and organisational changes we have made since 2004 are making a real difference.
"We are not complacent as we recognise that there is more we need to do."
The report by the local government and the Parliamentary and Health Service Ombudsmen said the care for people with learning disabilities showed many "significant and distressing failures" across the NHS and councils.
Parents who made complaints were left "feeling drained and demoralised" by the response of organisations.
The two Ombudsmen have called for an urgent review of health and social care for those with learning disabilities.
http://news.bbc.co.uk/1/hi/england/gloucestershire/7960135.stm
NHS and social services in England are failing to meet the health needs of people with learning disabilities, investigators say.
The Health Service and Local Government Ombudsmen said the standard of care was an "indictment of our society" after reviewing the deaths of six people.
They found one man died as a result of failings in his care, while a second death could have been avoided.
The government said it was taking steps to address the problems.
The ombudsmen investigated the cases after they were highlighted by the charity Mencap.
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CARE LINKED TO DEATH
Mark Cannon - The 30-year-old died eight weeks after being admitted to hospital with a broken leg. He waited three days to see a pain team and developed an infection. Complaints were upheld against the hospital and council - he was in a care home when he was first injured. The ombudsmen ruled care contributed to death.
Martin Ryan - Died several weeks after having stroke. While in hospital, the 43-year-old went 26 days without being fed. The hospital was criticised: death could have been avoided if care had been better.
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They looked into complaints made by the families of the six people who died between 2003 and 2005.
The report found failings by hospitals, local health bosses, the official NHS regulator and social care services provided by councils, although none of the complaints against GPs were upheld.
It linked the care of two of the six - Mark Cannon, 30, from Romford, east London, and Martin Ryan, 43, from Richmond, west London - to their eventual deaths.
It also said the failings in the care of two more - Tom Wakefield, 20, from Cheltenham, Gloucestershire, and Ted Hughes, 61, from High Wycombe, Buckinghamshire - was partly due to the fact that they had learning disabilities.
In the final two cases - those of Emma Kemp, 26, from Newbury, Berkshire, and Warren Cox, 30, from St Leonards, East Sussex - the complaints were not upheld, although some aspects of their care were criticised.
The ombudsmen also ruled that investigation of their complaints was flawed, although at different stages in the process.
The investigtors said there was enough evidence to suggest problems were endemic across the services.
'Inadequate care'
Ann Abraham, the Health Service Ombudsman, said: "The recurrence of complaints across different agencies leads us to believe that the quality of care in the NHS and social services for people with learning disabilities is at best patchy and at worst an indictment of our society."
Allan Cannon, father of Mark, said the family had to push at every stage to try to get better treatment.
He said no proper checks were done following Mark's surgery, and it was later discovered he had lost 40% of his blood.
"After the surgery, he was in an awful lot of pain and it just continued. He was being neglected by staff, we were calling for help."
In total, the role played by 20 different bodies in the cases was investigated.
Hospitals were criticised for the inadequate care and treatment given to people with learning disabilities as well as the way they looked into complaints.
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POOR CARE BECAUSE OF DISABILITY
Tom Wakefield - The 20-year-old had long history of stomach problems before dying of pneumonia and reflux problems. The council and the NHS were criticised for not planning and providing adequate care. The Healthcare Commission complaint handling was also found at fault.
Ted Hughes - After spending most of his life in care homes, the 61-year-old died the day after being released from hospital after an operation. Discharge arrangements by the hospital were found to be inadequate.
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Councils were attacked for failing to provide or secure adequate levels of health care, while local health managers working for primary care trusts were said to be struggling to plan services properly.
The Healthcare Commission, the NHS regulator, was even ruled to have not handled complaints properly in some of the cases.
The ombudsmen said there was sufficient policy and guidance available, but agencies were not following it and, as a result, were in breach of human rights and disability discrimination laws.
They recommended all agencies review the systems they have in place for making sure the needs of people with learning disabilities were met.
Communication
In particular, they said staff needed to improve communication with the patients and their families, and social care and NHS teams had to work together better to ensure discharge arrangements were good enough.
The ombudsmen's report comes after the government has already promised to improve training and carry out a full inquiry into premature deaths among people with learning disabilities.
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POOR INVESTIGATION OF COMPLAINT
Emma Kemp - The 26-year-old died shortly after being diagnosed with cancer. Her mother complained she should have been diagnosed earlier and given chemotherapy treatment. The complaint not upheld, but the way it was handled was criticised
Warren Cox - Died 90 minutes after being admitted to hospital with stomach pains. The hospital was found to have acted correctly, but the Healthcare Commission failed to offer them proper review of case
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Ministers made the announcements earlier this year after an independent inquiry last year into the deaths found significant failings.
Care services minister Phil Hope said: "Preventable deaths of people with learning disabilities are absolutely unacceptable.
"We are taking action to ensure that people with learning disabilities get the equal access to the health care that they deserve."
But Mencap chief executive Mark Goldring said the findings were "damning".
He said: "We would have liked to see individuals held accountable where they have not met required standards.
"We will continue to fight for justice for the families and, with them, consider referring the individual doctors who failed in their duty of care to the General Medical Council."
The introduction of the new employment and support allowance (ESA) has raised enormous anxiety among service users. Many fear they will be dragooned off benefits into any kind of job to achieve the government's political target of "a million off incapacity benefits". The Department for Work and Pensions (DWP), however, has been reassuring in its full page advertisements, where the emphasis is on "personalised support" and "financial help".
There's the same encouraging message of "working for a better life" on its website, with feel-good "real-life stories of people who have been helped back to work". It may be helpful, though, to draw the department's attention to another kind of real life story which is not only disturbing, but highlights the massive gap there can be between the policy theory and the practical reality of the ESA.
I need to stress that this is a true story, from the horse's mouth. I say this because even though from my own experience of living on benefits, I have learned some harsh lessons about what the system can be like, I still find it hard to believe myself. Such is the gulf between the lofty rhetoric and how the system can operate.
Mr A, who was diagnosed with terminal cancer, had been unable to work for several months and had been living off his savings and credit card. He was receiving the highest rate of disability living allowance (DLA). He was referred to a social worker who helped him apply for ESA. The ESA form can be downloaded – it's an option offered - and the social worker did this and printed it off for Mr A, as he did not have a computer. He was very ill, so they completed it slowly together. He wasn't well enough to do the form on the phone, Jobcentre Plus's own preference.
The form was completed carefully by the experienced and qualified social worker, who sent it off accompanied by the evidence required, for example, a doctor's sick certificate. Mr A then had to be admitted to a hospice as his condition worsened. The social worker went to see his partner, who explained that the form had been sent back, with the accompanying evidence, saying he should make the claim by phone. The partner duly phoned up Jobcentre Plus, at the patient's bedside and tried to go through the answers with them, checking with her partner, who was too ill to talk on the phone himself, both of them getting very distressed.
At this point she was told: "He's going to have to go in to the local Jobcentre Plus office." Telling people "it may be necessary for you to attend an interview at your local Jobcentre Plus" appears to be part of a standard telephone script. Mr A's partner knew where the office was and said she could get him there in a wheelchair, but wouldn't be able to get him up the stairs. Could someone come down the stairs to speak to him? She was very agitated. He died shortly afterwards. He never received the benefit.
The ESA form, which was completed and sent, asks if the claimant receives DLA. The social worker answered YES to this. It also asks if a form DS1500 accompanies the claim and if the "special rules apply" (to fast-track the claim). DS1500 is the doctor's report which states that the claimant is expected to have six months or less to live. In both cases the answer clearly given was YES. Despite being given full information about this, the form was returned unprocessed and the claimant and his partner subjected to this unjustified, inappropriate, insensitive and painful process. Hardly a case of someone who could be expected to be "prepared to work", yet hardly a case of "personalised support" or "financial help" either.
Much more focus must be placed on the efficient working of this new benefit. Clearly more needs to be done if staff and Jobcentre Plus are truly to support claimants' right to work, rather than merely penalise their need for support.
• Peter Beresford is professor of social policy at Brunel University
http://www.guardian.co.uk/society/joepublic/2009/mar/10/social-exclusion...