Page 24 - Community Living Magazine 35-2

mental health
The neglect of mental health

When carrying out research on mental health support for 1960s. However, the introduction of more
people with learning disabilities, Emma Dalrymple found a stringent ethical safeguards has resulted
in people with learning disabilities being
stark absence of studies from the patient perspective excluded from research participation.
Although the Mental Capacity Act 2005
favours inclusive approaches to capacity
ver the course of my three years of However, I quickly found there was so and presuming competence, it still seems
study, it has become apparent to little evidence in the area of recovery that that it is acceptable practice in many
Ome that the experiences of people I would need to take a broader approach research fields to rely on capacity and
who have both learning disabilities and to include experiences of mental health perceived deficits as exclusion factors,
mental health problems are significantly services in general to better understand particularly for people with more severe,
under researched. and address service and practice gaps. complex and profound learning disabilities.
In addition, much of the limited Although specialist databases contain In the 12 articles I did find from the
literature that I was able to find was from hundreds of thousands of articles and my perspective of people with both learning
the perspective of health professionals initial search returned several hundred disabilities and mental illness, strong
and carers rather than of people with documents, after screening these for patterns emerged across their experiences
learning disabilities themselves. relevancy, I was left with a total of just 12 of mental health services.
For my MSc in mental health recovery published papers investigating the lived This is significant as the studies were
and social inclusion, I had to design a experiences of people with learning conducted over a 20-year period, in a
research project on an area in mental disabilities and mental health difficulties variety of settings from secure inpatient
health services that needed improving, – research specifically into recovery services to community settings, and
and I chose mental health support for principles within this community was involved participants with a range of
people with learning disabilities. limited to a meagre two papers. mental health needs and levels of
Initially, I had intended to focus on the As I researched further, I found impairment. The information gathered
mental health recovery experiences of evidence to show that people with a covered a very broad range.
people with learning disabilities, as learning disability are almost twice as
recovery-based approaches have been likely to experience mental health Ignored and stigmatised
promoted across services since the 2000s. problems as those from the general The most common theme that arose was
The concept of mental health recovery population, which makes the absence of “being listened to” – or, in several cases,
originated in the 1990s, pioneered by learning-disabled people’s perspectives not being listened to – which came up in
Dr William Anthony, an American from the literature even more stark. almost every article. Where this was
psychologist. He described recovery as an mentioned, participants were unanimous
individual journey, where a person is able in reporting that professionals who
to live a satisfying and hopeful life, with or They are twice as likely to listened were essential to good service
without continuing symptoms of mental have mental health problems delivery whereas not being listened to was
illness. An important aspect of personal a significant factor in negative experiences.
recovery is that it differs from traditional as others, which makes the Another prominent theme was
and clinical concepts of recovery, absence of their perspectives the level of stigma and discrimination
particularly the idea of being cured. people encountered.
Policymakers in the UK quickly adopted from the literature stark Stigma took many forms, ranging from
the concept and mental health services being treated differently by staff and by
were encouraged to employ key recovery members of society more generally to
principles, which focus on human rights Logically, there should be much more being ignored or singled out.
and the highly individual and personal representative research into the A wide range of discrimination was
nature of what it means to live a full life experiences of a group of people who are experienced by the people with learning
with a mental illness. statistically very likely to need mental disabilities who took part in these studies.
The ethos of mental health recovery health support in their lifetime. They reported having poorer life
principles is that they apply universally – outcomes and quality of life, difficulty
and my starting point was that they would Ethical exclusion in accessing support to ensure adequate
apply equally to people living with mental I also found that researchers frequently housing, healthcare, employment and
illness who also have a learning disability. state learning disability as a factor that education, and few opportunities
To give the evidence a thorough appraisal prevents people from participating for meaningful or contributing roles
and identify gaps that would merit further in research (see page 12). in society. It was notable that social
exploration, my early searches were to The origins of ensuring people have exclusion had a significant negative effect
find any published literature from the the capacity to consent to research were on quality of life.
firsthand perspective of people with intended to put a stop to inhumane Many people reported that their mental
learning disabilities and mental illness experimentation on people with learning health difficulties were diminished or
that discussed their experiences of disabilities – a practice that had been ignored by a range of professionals, even
recovery within mental health services. considered ethically acceptable until the in specialist settings.

24 Vol 35 No 2 | Winter 2022 Community Living www.cl-initiatives.co.uk