Caring for people with learning disabilities – reflections on twenty years of care

Categories: Care.

Twenty years ago I met my first learning disabled
palliative care patient. Maureen was in her early
40s and had been admitted from the local hospital
where she was dying from a gastric cancer.
Maureen died only four hours after admission
having been barely conscious for most of that time.
The feeling among hospice staff was of how sad
this admission and death had been, and of how
much more could have been done had she had been
admitted earlier. For myself, although I had seen
Maureen I had not been able to communicate with
her and I too wished I had met her earlier.

As a social worker my role thereafter was simply
to ensure that Maureen’s next of kin (an elderly,
single mother) was informed of her death.
The mother had no telephone and no previous
contact with the hospice and so we requested that
the local police call on her and deliver this sad news.
The following day I took a call from a Salvation
Army officer who sought help for Maureen’s
mother. Living on her own she had neither the
finances nor the ability to organise her daughter’s
funeral. I agreed to visit the woman and together
we organised Maureen’s funeral and secured the
necessary finance. Then, over a longer period,
I provided her with bereavement support.

From the first meeting it was apparent that
Maureen’s mother also had a learning disability.
She lived a quiet, isolated but relatively contented
life, supported by the local Salvation Army citadel
that had offered her care and a place to stay in one
of their hostels until she had gained her own council
tenancy where she now lived.

The story of the family life was rich but full
of tragedy. However, within that tragedy were
also accounts of resilience and the uncommon
kindness of strangers. Twenty years previously,
from a position of homelessness and the
breakdown of Maureen’s fragile mental health
(into schizophrenia), had come a placement for
Maureen in one of the last long-stay hospitals
in Scotland. Here Maureen had gained friends,
dedicated care, and new skills (becoming an
award-winning bowler). Her mother visited her
weekly and slowly went on to develop her own life,
relieved that her daughter was being taken care of.

In the early 1990s, with the inception of the
Community Care Act, it was agreed that women
such as Maureen should no longer live in hospital
but have their own homes in the community.
Maureen had welcomed this and had been housed
in a ‘core and cluster’ flat within a voluntary mental
health organisation.

At the tea they hosted following Maureen’s funeral,
residential care staff were grief-stricken. Perhaps
mercifully, Maureen’s mother did not fully register
these reactions. In talking to staff, it became clear
that they were still getting to know Maureen when
she had become acutely ill. Warned on admission,
by hospital staff, of Maureen’s ‘attention seeking
behaviour’ they had not initially taken much notice
of her complaints of stomach pain believing it to be
as a result of anxiety or difficulty with settling into
a new environment. Weeks and months had passed
before Maureen became so distressed that she had
been taken to hospital where an advanced gastric
cancer was diagnosed. It was a short time before
her condition deteriorated and she was admitted
to hospital, transferred to the hospice and died.

Stories such as Maureen’s were not uncommon
20 years ago and, although one might puzzle how
dedicated care staff could miss signs and symptoms
of such serious illness, few questions were asked and
there was little sense that things could be different.

We now know that the explanations for people
like Maureen ‘falling through the net’ are complex.
A web of inter-relating factors related to the variant
health and disease profiles of people with learning
disabilities, the inflexibility of healthcare services
to meet the diverse demands upon them, the poor
training of mainstream health and social care staff
in learning disability and societal prejudices all
have their part to play in creating situations which
render people with learning disabilities vulnerable.
Sadly these factors can result in diagnostic
overshadowing, late diagnosis, a failure to
treat, and consequently in premature death.

Much has changed for the better in the last 20 years.
Policy and service delivery has been transformed
to take account of people with learning disabilities’ particular needs. For palliative care the development
of the English National End of Life Care Strategy1 was an important step forward, highlighting in its
equality impact assessment the specific needs of
people with learning disabilities. Organisations such
as the National Network for Palliative Care of People
with Learning Disabilities (now Palliative Care for People with Learning Disabilities Network) have highlighted the issues for
people with learning disabilities and their carers
and have researched, developed and shared
best practice.

However, the needs of people with learning
disabilities continue to challenge the delivery of
palliative care across all the settings in which people
with learning disabilities live and die. The issues
are now more sophisticated for although 20 years
ago people with learning disabilities were rarely
referred to hospices (very often dying shortly after
diagnosis) nowadays there are few hospices that
have not received and responded to such referrals (though access to palliative care services is still poor when compared with the general population).
However, much of that response has in itself been
inequitable with a seductive emphasis on giving ‘equal’ service. This, while appealing to a natural
sense of ‘fairness’, has not resulted in a ‘just’ response. Unequal needs require unequal responses
tailored to the specific needs of the individual.

Equitable responses to the palliative care needs
of people with learning disabilities probably
require new models of palliative care as well as ‘reasonable adjustments’ to the current services
that are provided to the majority, non-learning
disabled population. Without such adaptations,
Swinton’s charge of diagnostic overshadowing
within palliative care (and the consequent failure
to meet the holistic end of life care needs of people
with learning disabilities) is fairly meted out on
hospices as on other end of life care providers2.

The good news, however, is that none of these
adaptations require rocket science, but rather a
revisiting of the fundamentals of palliative care,
a focus on the individual, and an attention to detail.
Twenty years on, there is a growing community of
knowledge, practice and resource seeded within the
hospice movement.


  1. Department of Health. End of Life Care Strategy
    – promoting high quality care for all adults at
    the end of life. Department of Health, 2008.
  2. Swinton J, Powerie E. Why are we here? Meeting
    the spiritual needs of people with learning
    disabilities. London: Foundation for People
    with Learning Disabilities, 2004.

This article was first published in the introduction to the Help the Hospices publication ‘Widening access to palliative care for people with learning disabilities.’

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