Behind the Headlines

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.”

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.”

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.”