healthmedicinet

A parallel paper, commissioned by Mencap using the same data, calculated that
there are more than 1,200 avoidable deaths of people with mental
disabilities every year across the country – the equivalent of a
Mid-Staffordshire hospital deaths scandal every year.

Norman Lamb, the care minister, described the report as “important and
sobering”.

Its author, Dr Pauline Heslop of Bristol University’s Norah Fry Research
Centre, said the findings were “shocking” and a “wake-up call”.

“We have, over the past few years, been rightly horrified by the abuse of
people with learning disabilities at Winterbourne View hospital and of
vulnerable patients at Mid-Staffordshire,” she said.

“The findings of the confidential inquiry into the deaths of people with
learning disabilities should be of no less a concern.”

The Government-sponsored Confidential Inquiry into Premature Deaths of People
with

Learning Disabilities looked in detail into the circumstances of all deaths
involving people with learning difficulties in South West England over a
two-year period – almost 250 in total. They also compared them with a sample
of deaths involving non-disabled people.

It found that 42 per cent of deaths of people with learning disabilities were
“premature” and 37 per cent might have been avoided with better or quicker
treatment.

While early deaths among non-disabled people was often associated with factors
such as smoking and drinking – for those with learning difficulties the most
common factors were delays or problems with diagnosis, referral and
treatment as well as a wider failure to take make allowances for special
needs.

About a third of those with special needs who died had had trouble
communicating pain and a similar proportion had not had an annual health
check in the previous year.

The most common age for men with learning disabilities to die was just 65 – 13
years before other men. For women with learning disabilities the median age
at death was 63 – two decades earlier than other women in the same area.

“Similar proportions in the two groups presented promptly for health care, but

significantly more people with learning disabilities experienced difficulties
in the

diagnosis and treatment of their illness than did the comparator group,” the
inquiry concluded.

“All aspects of care provision, planning, co-ordination and documentation were
significantly less good for people with learning disabilities than for the
comparators.”

It found “many” instances” of “inappropriate” Do Not Attempt CPR orders
(DNACPRs) based on “assumptions” about the quality of life the person would
have if they survived.

“In some circumstances, such was the quality of the documentation that the
assumption that the order was made because the person had learning
disabilities could not be ruled out,” the report states.

“In addition, there were a number of cases where the decision not to
resuscitate a person appeared to have been made prematurely in a
non-emergency situation, before a full assessment of the person or before
gaining the views of those who knew them best.”

It added: “Professionals must recognise their responsibilities to provide the
same level of care to people with learning disabilities as to others, and
not to make rapid assumptions about quality of life or the appropriateness
of medical or social care interventions.”

Beverley Dawkins, Mencap national policy manager, said: “This research reveals
the scale of discrimination faced by disabled patients, and supports our
belief that the lives of people with a learning disability are valued less
than other patients by the NHS.

“We know that doctors and nurses make wrong assumptions about the quality of a
patient’s life, just because they have a learning disability.

“Many families have told us that DNR orders have been placed on their loved
one, or that life-saving treatment has been withheld.

“We are told that doctors say things like “Wouldn’t it be kinder to
just let him go?” and ‘if she had been a normal young woman we wouldn’t
hesitate to treat her’.

“This is discrimination and health professionals who do not treat people with
a learning disability equally should be held to account.”

Dr Heslop said: “People with learning disabilities are struggling to have
their illnesses investigated, diagnosed and treated to the same extent as
other people.

“These are shocking findings and must serve as a wake-up call to all of us
that action is urgently required.”