Cancer
Introduction
BILD were commissioned by the Department of Health to carry out a scoping study
looking at Cancer & People with Learning Disabilities, to inform the development
of the National Strategy, now published as Valuing People.
The study was carried out in two parts, firstly a review of the literature, and
alongside this, an examination of people's experiences of cancer services.
The report has been published by BILD as "Cancer & People with Learning
Disabilities; The Evidence from Published Studies and Experiences from Cancer
Services" James Hogg, John Northfield & John Turnbull.
Below are some of the key headlines from the study.
Why Cancer? Cancer was a key priority area within the Government's strategy for
health in 1992 (Health of the Nation)
Studies in the literature review suggest that respiratory disorders are the
principal cause of death of people with learning disabilities
Whilst there is no definitive statement about incidence, studies suggest that
incidence of cancer is lower in the population of people with learning
disabilities than in the general population, although the reason for this is
unknown.
Some syndromes associated with learning disability predispose to certain forms
of cancer and could skew results.
High incidence of Gastro-intestinal cancer: Bacillus H Pylori in causation has
been widely suggested. Implications of this finding suggest a need to respond to
environmental factors that contribute to spreading the baccillus, as well as
providing information about cross infection to staff supporters and family
members.
There is a suggestions of a predicted rise in the incidence of cancers in
community settings based on two assumptions.
- Increased longevity of people with learning disabilities
- Community settings and lifestyles exposing people to greater risks (smoking,
diet, etc.). There is however no explicit data demonstrating an increasing trend
in incidence.
There appear to be differing incidences of specific cancers,
gonadal cancer in men appears to be higher;
breast cancer appears to be lower in women
Clear messages emerged from people's experience of cancer services:
Information about cancer, whilst available, was complex and difficult to
understand.
There is a clear need to develop specific materials on cancer for people with
learning disabilities.
Staff we spoke to were looking for ways to provide good support for people with
learning disabilities to use reliable means of monitoring/recording their health
status in a person-centred manner
There is a need to explore & improve our understanding of how pain can be
assessed and managed in people, particularly those who do not use speech to
communicate
We found a variable level of response from healthcare organisations in relation
to screening and surveillance programmes.
We found from the literature certain groups at increased risk of certain
cancers, and we would urge that there is close monitoring of such groups, (eg
children with Down Syndrome at risk of developing childhood leukaemia)
We found a number of instances of the difficulties faced by people in
communicating a diagnosis of cancer to somebody with a learning disability they
were supporting. Some key points were
- Fears of staff & lack of information about cancer
- Recognising that communicating the diagnosis was a process over time and not a
one-off event
- Tension between moving at an appropriate pace for communication and the
potential growth and spread of tumours
- Support workers feeling they had been given the job of communicating the
diagnosis, and feeling that this was an example of 'leaving the job to the least
qualified person'
- Examples of deciding not to communicate the diagnosis to the person at all
- We also found that complimentary therapies rarely offered or even explored
Where there was good practice, the following features appeared to be in place:
- System of ongoing planning and support that placed the individual firmly at
the centre of the decision making process
- Access to information for support workers about specialist help e.g. MacMillan
Nurses
- The Primary Health Care Team's commitment to partnership working
- Good quality risk assessment and risk management plans
SUGGESTIONS FOR FUTURE RESEARCH
Continue the work into the genetic basis of some cancers
Explore further the relation between cancer and H Pylori bacillus in community
settings.
Comprehensive, longitudinal study of incidence of cancer
Carry out formative evaluations of Health surveillance & Health Promotion to
ensure we know what works and why.
Ensure that the knowledge, experience and developments in coping with cancer and
providing high quality palliative care are all able to benefit people with
learning disabilities
Research into the management of cancer for people with learning disabilities,
family members and supporters
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Last updated: 06/05/2010