Select Committee on Health Written Evidence

Memorandum by Mencap (PS 13)


  Our vision is a world where people with a learning disability are valued equally, listened to and included. We want everyone to have the opportunity to achieve the things they want out of life


  All people coming into NHS care wish to be assured every effort will be made to keep them safe. But for patients with a learning disability, their families and carers, the reverse is true. As recent reports "Closing the Gap" (DRC, 2006), "Death by indifference" (Mencap, 2007) and "Healthcare for all" (Sir Jonathan Michael, 2008) show, people with a learning disability experience unequal healthcare treatment which is leading to unnecessary pain and death.

  In some cases the failures to keep patients with a learning disability safe have been failures of clinical practice. In many more, the failures have been in basic care. They are often linked to the value placed on the lives of people with a learning disability by health professionals.[120]

  This attitude is continued into complaints and reporting procedures where incidents involving people with a learning disability are not flagged at a high level, and complaints organisations use the existence of a disability as an excuse for poor care.


Systems failure:

    Ted collapsed and died of aspiration and a heart attack, a day after being discharged from hospital. His care home insisted he was not well enough to come home, but hospital staff refused to keep Ted, and failed to give discharge information about the thickened fluids that Ted needed to keep him safe.

    Instead the hospital failed to look after Ted. Prior to discharge, he experienced a fall and wandered the ward drinking mouthwash that he thought was Ribena, despite assessments saying he needed thickened fluids to avoid aspiration.

  People with a learning disability suffer poorer health, and poorer healthcare, than the general population, and "there is also evidence of a significant level of avoidable suffering due to untreated ill health, and a high likelihood that avoidable deaths are occurring"[121]. This is a significant systems failure for the NHS—it is not currently set up to understand and meet the needs of patients with a learning disability, and is therefore not able to keep them safe.

    Mark was taken into hospital for an operation on a broken leg. He lost 40% of his blood and once out of surgery his parents were very concerned. Mark had epilepsy and started fitting, his body was approaching status epilipticus (continuous fitting). His parents raised this several times with hospital staff before tests were done and Mark was given intravenous epilepsy medication. This would not have taken place without the intervention of Mark's family, as nursing staff initially said Mark was reacting normally to the surgery.

  To counter these failings, NHS staff need mandatory training in learning disability and must be reminded of their duties to make reasonable adjustments to provide equal health outcomes for people with a learning disability in their care.

2.b  Systems for incident reporting, risk management and safety improvement.

  Mencap want to see the systems for incident reporting improved, and for incidents relating to patients with a learning disability to be tracked. To ensure services are not failing in their duty to give equal health care to people with a learning disability, they need to record incidents, bring them to the attention of people at the highest levels, and ensure action is taken to learn and prevent further tragedy.

    Martin died 26 days after he was admitted to hospital following a stroke. During this time he was given no food. It was not until Mencap became involved in assisting Martin's family with their complaint that anyone senior was made aware of what had happened in the hospital. The Trust's chief executive was horrified to not have heard what happened. His family believe his death was not seen as a significant loss because he had a learning disability.

2.d  Role of Healthcare Commission / Care Quality Commission

  The HCC and the CQC that will replace it, must track how specific vulnerable groups like people with a learning disability are being treated in the NHS, to discover whether failures in patient safety are focused on particular groups. If certain groups are facing particular risks, they must be highlighted and new strategies recommended to ensure everyone is kept safe in the NHS.

    "Compliance with legislative framework covering disability discrimination and mental capacity is not effectively monitored or performance managed".[122]

  It is vital the new Care Quality commission works with the Commission for Equalities and Human Rights to check that all hospitals are fulfilling their obligations under the Disability Equality Duty, particularly in relation to patient safety. Currently only the CEHR can apply to the court for an order requiring compliance with the DED, but inspectors could use this tool to ensure the needs of disabled patients are being met.

    After Tom's death, his family attempted to get answers, but found that complaints to the Trusts involved, and to the Healthcare Commission (HCC) failed to answer their questions or recommend change to prevent further tragedies. Instead, Tom's profound disability was used as an excuse for poor care.

    "The clinical advisor goes on to say that individuals like Tom are unique and that the medical needs of disabled people like Tom with a complex of physical and mental issues are rarely well met by generic services. He acknowledges that they are one offs" (quote from Tom's HCC report)


  In line with the recommendations of the Michael report, Mencap want to see the establishment of a Public Health Observatory (PHO) in learning disabilities. Such a body would:

    —  Inform commissioning

    —  Improve data and monitoring

    —  Advise national inspector and regulators on equalities and indicators[123]

  A PHO would assist in patient safety through monitoring, information and dissemination of good practice.


  Patient safety needs to apply to all patients. People with a learning disability have additional needs that place them at additional risk in the NHS—staff must have the training and procedures in place to mitigate these risks. Monitoring of outcomes for patients with a learning disability is required at every level of the NHS to ensure that failures related to these patients are taken seriously.

  The assumption that the life of someone with a learning disability is of less significance must be challenged. Instead, any incident needs to prompt swift investigation and learning to prevent future tragedies and ensure all staff are aware that failure to meet needs of this, or any patient group, will not be acceptable.

September 2008

120   Death by indifference, Mencap (2007). Back

121   Healthcare for all, Sir Jonathan Michael (IAHPLD) 2008 p.2.1. Back

122   Healthcare for all, Sir Jonathan Michael (IAHPLD) 2008 p.8. Back

123   Healthcare for all, Sir Jonathan Michael (IAHPLD) 2008 pp. 43-44. Back

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