Palliative care of people with learning disabilities must be improved, says senior nurse

The palliative care needs of people with learning disabilities are not always recognised, resulting in many individuals having no choice about their death, a conference held in Hertfordshire has heard.

Speaking at the Hospice of St Francis in Berkhamsted, Great Ormond Street Hospital consultant nurse for learning disabilities Jim Blair said there are often barriers to them receiving good end of life care.

He attributed this to ‘diagnostic overshadowing’ where health problems or behaviours may get missed because healthcare professionals associate them with a person’s learning disability.

‘Staff do not always recognise the palliative care needs of patients with a learning disability, so referrals may not be made or may be made later than they are for the general population.’

Mr Blair stated that on average three people with learning disabilities die avoidably every day in the NHS.

He added that healthcare professionals should be aware of the barriers to people receiving good end of life care, such as not dismissing someone who bashes their head against a wall or causes themselves injury as simply displaying behaviour related to their learning disability.

‘Behaviour that’s challenging is just somebody trying to communicate the health needs that they have,’ he said. ‘If someone is laughing, do not assume they are not in pain; it might be an inappropriate response to pain. Think about your tone and pitch, engage with them and think differently.’

He said healthcare professionals should have a checklist of symptoms to look out for to gauge the health of people with learning disabilities as they won’t necessarily communicate that they are unwell. These include swelling, lumps, changes in body shape, weight loss or gain, alterations in eating habits and behavioural changes.

Mr Blair spoke of how people with learning disabilities often have a ‘disenfranchised death’ where they are not always given the opportunity to make an informed decision about their end of life care. He said they may have no autonomy over how they die or may not be told about their impending death.

‘We think we are protecting them by not telling them, but we are not. We are dehumanising these individuals and not treating them as equal.’

He was speaking at a conference titled Seldom Heard – a term used to refer to hard-to-reach groups – run jointly by the hospice and the RCN.

In a question and answer session, a second-year nursing student from Middlesex University mentioned how few universities focus sufficiently on learning disability nursing as part of the national curriculum.

Addressing this point, Mr Blair agreed that there is a lack of focus nationally on tackling health inequalities and poor access to healthcare services among people with learning disabilities.

He said: ‘We do not have solid learning disability nursing leadership nationally; we should have a clinical nursing director. We need someone at the top who can articulate the front line reality.’

The hospice's chief executive officer Steve Jamieson told the conference that the latest NHS complaints audit shows that half of complaints about hospices related to the care of dying patients.

He added that early referral to palliative care is crucial for improving quality of life and helping people to live longer.

Mr Jamieson dispelled some of the ‘myths’ around death and dying and the care patients receive in hospices.

‘It is not true that hospices are where people go to die. Last year 45% of our patients went home. It is also not true that hospices are for patients with cancer. Last year, 24% of our patients had illnesses other than cancer.’