News

• Court rules that mental incapacity is not a bar to equal medical treatment
• Judge rules man with learning difficulties should receive medical treatment

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.