Less equal than others?

The NHS was set up to care for everyone equally on the basis of
need. Yet in the eyes of some in the medical profession, people
with learning difficulties are clearly less equal than
others.

This has been starkly illustrated in several recent cases. In March
the parents of a teenage boy with autism and severe learning
difficulties went to the High Court to challenge a hospital’s
refusal to give him a potentially life-saving kidney transplant.
The hospital had said it would only provide their son with
palliative care. Judge Dame Elizabeth Butler-Sloss said a kidney
transplant should not be rejected on the grounds of the patient’s
inability to understand the purpose and consequence of the
operation or concerns about the management of his behaviour.

Mary Hassell, a partner at Parlett Kent solicitors firm in London,
a specialist clinical negligence practice, worked on the case. “Our
philosophy is that everyone has an equal right of access to health
care regardless of their disability,” she says. “The judge gave the
analogy that a young child may not understand what is happening to
them when they need a life-saving operation, but they would still
be treated.”

Hassell says these types of case represent an expanding area of
litigation as medicine increases the options available to people,
and patients and families are more prepared to challenge medical
decisions.

People with learning difficulties have greater health needs than
the general population, yet receive poorer support from mainstream
services. But why is this? Attitudes and assumptions play a big
part.

Jackie Rodgers, senior research fellow at the Norah Fry research
centre, says: “They aren’t valued or seen as equal people with
equal rights to have their health needs met. They are not included
in health initiatives to improve the health of the national
population.”

The importance of equal access to health care was finally
recognised in the learning difficulties white paper Valuing
People. Here, the government set a target for all people with
learning difficulties to have a health action plan by June 2005.
Campaigners have welcomed the move, but it still leaves two years
before all people with learning difficulties begin to get their
health needs taken seriously. Although learning disability
partnership boards working with primary care trusts are responsible
for meeting the 2005 target, Rodgers says: “The problem now is that
everyone sees it as someone else’s responsibility.”

Statistics from learning difficulties charity Mencap reveal the
extent of the problem. Although 85 per cent of women in the general
population have cervical smear tests, this ranges from just 3 per
cent of women with learning difficulties living in the family home
to 17 per cent of those in care. One reason behind this seems to be
that the family or carers mistakenly believe they do not need
screening because they assume they are not sexually active – even
though this is not a prerequisite for cervical cancer
developing.

Breast screening shows a similar trend. It is taken up by 76 per
cent of women over 50 in the general population, but only 17 per
cent of women over 50 with learning difficulties living at home and
52 per cent of those in care receive screening.

People with learning difficulties living in formal care settings
are more likely to benefit from a structure to encourage regular
health checks and support to allow them to make and keep an
appointment.¹ The self-referral element to primary care
means that those living in informal support settings are at a
disadvantage as their health checks may depend on whom they live
with.

Most GPs are unlikely to know whether they have a person with
learning difficulties on their caseload, says Janet Cobb, primary
health care lead at North West Training and Development Team, which
works on behalf of this client group and is funded by health and
social care authorities.

The problem starts in childhood. Learning difficulties are usually
diagnosed before the age of two. There is regular attention and
assessment of health needs by a specialist paediatrician until the
child reaches 19 when their health care becomes the responsibility
of the GP, often with little or no handover. Cobb says: “It’s done
with good intentions, but it creates a segregated service.”

There are other barriers preventing people with learning
difficulties seeing their GP. These include difficulties if the
patient has challenging behaviour; the standard 10-minute
appointment being too short; buildings that may not be
wheelchair-accessible; communication problems; and dependence on
carers accompanying patients to the surgery.

And even during an appointment illnesses can go unnoticed because
the patient sometimes cannot communicate the pain they are in;
doctors may not recognise or understand their health needs because
they have little experience in dealing with this client group;
professionals may talk to the carer rather than explain the
situation to the patient; or a patient may be denied treatment
because of their learning difficulty.

Given that medical students have just a couple of days’ tuition on
the needs of this client group, it is hardly surprising that many
practitioners find it hard to relate to their needs. According to
Cobb: “There are few training and development opportunities for
generic primary health care staff in relation to learning
disabilities. I’d like to see awareness of the needs of this client
group taught in every NHS module.”

Because of this lack of knowledge, if a person with learning
difficulties has to go into hospital then often the responsibility
for 24-hour care lies with their carers. Cobb cites one case in
which a woman with learning difficulties was admitted to hospital
with pancreatic problems. After spending about six weeks in
intensive care, she had made a good recovery and was transferred to
a general ward on her local hospital.

Her parents had stayed with their daughter for the whole period,
but went home for a change of clothing and a meal in the early
evening, leaving her in the care of ward staff. The patient slipped
down the bed, covered her tracheotomy and suffocated. She had a
heart attack and died 10 days later. “The ward staff had not
assessed the risks adequately,” says Cobb. “This shows how people
with complex needs are at risk within mainstream health care
settings.”

Although plans to close all long-stay hospitals were welcomed by
people with learning difficulties and those working with them, it
has caused added problems. The closure programme is due to be
completed next year, leaving nearly all people with learning
difficulties living in the community and needing mainstream health
services. This is a significant shift in policy – and means that
even those with the most profound and complex health needs must
rely on primary care and acute service practitioners rather than
having access to specialist services.

“While the philosophy behind this approach was sound, there hasn’t
been enough preparatory work,” says Colin Beacock, adviser in
learning difficulties for the Royal College of Nursing. “While we
supported the closure of the remaining long-stay hospitals, we were
anxious that there was an underestimation of the level of severe
needs.”

Beacock says it is not simply a question of there being enough
services, or even whether practitioners have the right level of
understanding of the needs of this client group. “It’s about
appreciating the continuing need for a form of specialist service,
even though it should never be based in institutional care. People
with learning difficulties are the acid test of whether NHS
modernisation has led to an equitable and accessible service
because they are probably the most marginalised and needy citizens
of our society.”

1 R Band, The NHS – Health for All? People with
Learning Disabilities and Health Care, Mencap, 1998

2 J Elliott, C Hatton and E Emerson, “The health of people with
learning disabilities in the UK: evidence and implications for the
NHS”, Journal of Integrated Care, Vol 11,
2003

For further information on health action plans go to
www.doh.gov.uk/learningdisabilities/healthactionplans.htm

Health facts for client group

• Respiratory disease and coronary heart disease are the the most
  common causes of death. 
• Prevalence of schizophrenia is about three times as great as
  that of the general population. 
• Prevalence of dementia is much higher among older adults with
  learning difficulties than in the general population. 
• Prevalence of epilepsy is at least 20 times that of the general
  population. 
• This client group is much more likely to be either underweight
  or obese (rather than a healthy weight). 
• Less than 10 per cent of adults with learning difficulties eat
  a balanced diet, and most do not eat enough fruit and vegetables
  and have little knowledge or choice about healthy eating.  Source:
  Reference ²

Mencap’s top five wishes

• Annual health checks and equal access to health care for all
  people with learning difficulties. 
• Primary care groups and primary care trusts to take
  responsibility for the health of this client group. 
• Better learning difficulties training for NHS staff. 
• More speech and language therapists, physiotherapists and
  community learning difficulty teams. 
• Learning difficulty registers for children and adults so that
  services can be properly planned.   

‘It’s all one big fight’

Paul Ogaza, aged 26, has severe learning difficulties and
epilepsy. He is blind in one eye, cannot walk or talk, and has had
major bowel problems since early childhood that have been
continuously misdiagnosed.  Symptoms would build up over a
three-week period during which Paul would become highly distressed
and have severe bowel problems. This would be followed by Paul
sleeping for 24 hours, after which he’d be fine, only for the
pattern to repeat itself.  

Paul’s GP thought he was constipated and suggested laxatives,
but these only made the problem worse. At one stage he was rushed
into hospital, where a weekly enema was suggested. 

“They were a torture to him,” says his mother, Mary. When they
went back for the six-week check-up she said she wanted to
discontinue the enemas. She was told “it was a case of me not being
able to cope”. At this stage, Paul had not been examined or seen by
a consultant. 

Three days later she received a letter from the hospital, saying
“we feel that further investigation into his problem will be
difficult and unrewarding”.  Unable to continue witnessing Paul’s
pain, Mary started to search out information herself and was
recommended St Mark’s Hospital in Harrow, which specialises in
bowel problems. Last year Paul was diagnosed with chronic
intestinal pseudo obstruction, resulting in a major operation to
remove his large bowel and rectum.  

“He’s a completely different young man, has put on weight,
grown, and is much brighter because he’s not riddled with pain,”
says Mary. “It’s all one big fight, and if you are not a strong
person you haven’t got a hope in hell.”   

STOP PRESS    People with learning difficulties
should benefit from a new government appointment. Vicky Stobbart at
the National Patient Safety Agency hopes to reduce the time it
takes for people with learning difficulties to be diagnosed and
treated for illnesses. She also wants to improve access to health
screening services, particularly breast and cervical screening.