Second class treatment outlawed by court

A landmark ruling in the High Court last week delivered the
clear message that people with learning disabilities are entitled
to the same medical treatment as anyone else, writes
Craig Kenny.

At issue was the treatment of a severely autistic 18-year-old,
identified only as S, who was undergoing kidney dialysis.

Against the wishes of the boy’s family – who were
backed by their local Social Services Department – a Hospital
Trust had ruled out giving him a kidney transplant or an
alternative form of dialysis in the future, only palliative
care.

In her ruling, Judge Dame Elizabeth Butler-Sloss found that in
so doing, the trust had breached his human rights. ‘It is
crucial that S is not given less satisfactory treatment than a
person who has full capacity to understand the risks, the pain and
discomfort inseparable from such major surgery,’ she
concluded.

The judgement has been hailed by learning disabilities charities
and watchdogs for setting a precedent which doctors will not be
able to ignore.

Jill Stewart, policy adviser with the Disability Rights
Commission, said: ‘This ruling is sending a really important
message to medical professionals that they have got to listen to
disabled people and where appropriate, to their relatives and
carers.

‘The case underlines that medical professionals do not
understand disabled people, and that it’s very easy to make
assumptions about them.’

The ruling follows the findings of an official inquiry in 2001
which found that doctors at the Royal Brompton Hospital in London
discriminated against children with Down’s Syndrome by
refusing them heart and lung transplants.

But until recently, the courts have tended to side with the
medics in cases involving people with learning disabilities.

Few doctors today would argue that it is in the best interests
of a person with learning difficulties to withhold life-saving
treatment. But in the case of S, his potential for behavioural
problems was used as a justification for denying him a
transplant.

When S had undergone emergency treatment at the Trust three
years ago, staff had found him difficult to manage and sometimes
aggressive. He had pulled out tubes and lines and needed restraint
and sedation, although his behaviour later settled down.

The trust maintained that S’s distress when his routines
were changed, and his ‘fear’ of needles, meant that he
would neither be able to cope with a kidney transplant nor an AV
Fistula (an alternative form of dialysis.)

Dr R, a consultant in paediatric nephrology, argued that the
immunosuppressive drugs given after a transplant might also
‘aggravate his behavioural problems.’

‘It might be argued that if we put a normal young child
through such difficult treatment, then why would it not be
reasonable for S?’ asked Dr R.
His answer to his own question was revealing: ‘Children of 3
or 4 years have the capacity for normal intellectual and emotional
development. S, however, has got no real future potential for
intellectual development. We firmly believe that he will never be
able to grasp why he is receiving  treatment which he finds so
distressing.’

However, the court found that the doctors may have
underestimated S. An educational psychologist said that he showed
both the capacity to learn and a strong desire to; while a child
psychiatrist pointed out that S knew Makaton signs and would
tolerate change, if properly prepared.

The judge agreed. The difficulties that clinical staff had
already experienced  ‘may have had a disproportionate effect
on their approach to future treatment for S,’ she
decided.

And his supposed fear of needles had not prevented blood tests
and anaesthetics being given in the past, when reward and
distraction techniques had been successfully used, Mrs Justice
Butler-Sloss noted.

‘The need for blood tests, the use of needles and the
likelihood of several returns to hospital, do not seem to me to be
insuperable obstacles,’ she ruled.

A key problem highlighted by the case is that of who decides
what treatment is in the best interests of a patient who is unable
to understand the treatment or communicate their wishes.

Steve Broach, head of policy at the National Autistic Society,
said: ‘There is no effective mechanism at the moment to make
sure they can make their own decisions, if they have a
communications disorder like autism, or for their carers to have a
say.

‘Carers may not be able to totally reflect the wishes of a
person with learning disabilities, but it is the next best
option.’

Scotland already has mental capacity legislation, and the Lord
Chancellor’s department is currently drafting a bill for the
rest of the UK. The bill has, however, already been several years
in the making.

But some argue that tackling attitudes and lack of knowledge in
the medical profession is just as vital.

In a recent survey for the National Autistic Society, 74% of GPs
did not feel able to make an informed assessment of autism.
‘If primary care doctors are saying that, then specialist
doctors are going to be even less informed,’ said Mr
Broach.

Jill Stewart of the DRC argues that medical training must
address disability issues. ‘Disabled people may need
different ways of communicating and sometimes they need independent
advocates,’ she said. ‘If consultants don’t have
this understanding, it’s no wonder that they make these
decisions.

‘We are currently talking to medical schools about
disability awareness training and also to the Department of Health
about how that training can be ongoing throughout health
professionals’ careers.’

In the meantime, people with learning difficulties are still
getting second class treatment from many doctors.

‘We still hear of Do Not Resuscitate notices being put on
people without their consent,’ said Ms Stewart.
‘Moreover, the Commission for Health Improvement has found
that policy and practice on DNRs is not good in most trusts, and
some are contrary to guidance.’

Susannah Seyman, information officer for the Downs Syndrome
Association, said that people with Downs were still being
overlooked for transplants.‘There is a long waiting list for
heart and lung transplants because of the shortage of donors. But
if you have Downs Syndrome, you don’t even get assessed or
put on the waiting list.

‘One false argument used to defend this practice is that
people with Down’s have poor immune systems,’ she said.
‘In fact this is an argument for them having a transplant.
People with normal immune systems have to go on a whole series of
drugs to prevent rejection.’

Since last week’s ruling on S, however, doctors may think
twice before offering specious medical arguments to defend
discrimination against disabled people.