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Posted: 20 March 2003 | Subscribe Online


The principle that people with learning difficulties should have the same medical treatment as everyone else was defended last week. If there was cause for concern, it was that it took a decision in the High Court to uphold the principle. Judge Dame Elizabeth Butler-Sloss, president of the High Court family division, ruled that a hospital had been wrong to deny life-saving medical treatment to a patient on the basis that he was autistic. The patient's family were unhappy with the hospital's decision to withhold dialysis and the chance of a kidney transplant from the patient, who has kidney failure. Butler-Sloss said that the failure to provide treatment was contrary to the rights of a mentally incapacitated patient under European and UK law. She added: "A kidney transplant ought not to be rejected on the grounds of his inability to understand the purpose and consequence of the operation or concerns about the management of his behaviour."

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Phil Frampton, national chairperson, Care Leavers Association
"It's just like saying that the least able will be given the worst treatment, the worst chance of survival. The hospital's decision goes against the principles of the welfare state and the NHS. Other people with learning difficulties pay their taxes on the basis that they will get an equal chance of treatment. Anyone who has been brought up in the care system is used to being denied their rights. The same kind of paternalistic attitude can be seen in this case."

Felicity Collier, chief executive, Baaf Adoption and Fostering
"This is a highly significant judgement and will have major implications for the treatment of disabled people. It recognises that all human life is equally valuable and moves us away from a medical model whereby doctors control rationing decisions.

I would like to see an ethical committee draw up national guidance for treatment, underpinned by clear values about the scope of patients' rights and the responsibilities of hospitals."

Bill Badham, development officer, National Youth Agency
"Thank goodness for Butler-Sloss's ruling, but how did it ever come to a situation whereby the courts had to defend patient rights? We have a bill of rights, a constitution in the Human Rights Act 1998, where article 2 states that 'everyone's right to life shall be protected by law'. And under the Disability Discrimination Act 1995, providers of services, including health, cannot refuse a service or offer a worse standard of service to a disabled person. The ruling indicates the need for a far more fundamental shift in cultural and organisational behaviour before real progress for disabled people is assured."

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Martin Green, chief executive, Counsel and Care for the Elderly
"This case is a sad example of how people with learning difficulties are seen as second-class citizens and not afforded either rights or respect in some parts of our society and care system. The case also highlights the way in which health service rationing is going on without any public discussion or debate and this unaccountable process mirrors all the prejudice that is found in the wider society towards people with learning difficulties."

Karen Squillino, senior practitioner, Barnardo's
"It looks as if the hospital in question is rooted in that paternalistic concept of service provision based on the 'deserving and undeserving' principle that was so popular in the 19th century in relation to the poor and disadvantaged. What with the work of the learning disability task force, and with UK and European human rights legislation, I would not have expected such a decision to be made by a hospital."



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