Over the course of my three years of study, it has become apparent to me that the experiences of people who have both learning disabilities and mental health problems are significantly under researched.
In addition, much of the limited literature that I was able to find was from the perspective of health professionals and carers rather than of people with learning disabilities themselves.
For my MSc in mental health recovery and social inclusion, I had to design a research project on an area in mental health services that needed improving, and I chose mental health support for people with learning disabilities.
Initially, I had intended to focus on the mental health recovery experiences of people with learning disabilities, as recovery-based approaches have been promoted across services since the 2000s.
The concept of mental health recovery originated in the 1990s, pioneered by Dr William Anthony, an American psychologist. He described recovery as an individual journey, where a person is able to live a satisfying and hopeful life, with or without continuing symptoms of mental illness. An important aspect of personal recovery is that it differs from traditional and clinical concepts of recovery, particularly the idea of being cured.
Policymakers in the UK quickly adopted the concept and mental health services were encouraged to employ key recovery principles, which focus on human rights and the highly individual and personal nature of what it means to live a full life with a mental illness.
The ethos of mental health recovery principles is that they apply universally – and my starting point was that they would apply equally to people living with mental illness who also have a learning disability.
To give the evidence a thorough appraisal and identify gaps that would merit further exploration, my early searches were to find any published literature from the firsthand perspective of people with learning disabilities and mental illness that discussed their experiences of recovery within mental health services.
However, I quickly found there was so little evidence in the area of recovery that I would need to take a broader approach to include experiences of mental health services in general to better understand and address service and practice gaps.
They are twice as likely to have mental health problems as others, which makes the absence of their perspectives from the literature stark
Although specialist databases contain hundreds of thousands of articles and my initial search returned several hundred documents, after screening these for relevancy, I was left with a total of just 12 published papers investigating the lived experiences of people with learning disabilities and mental health difficulties – research specifically into recovery principles within this community was limited to a meagre two papers.
As I researched further, I found evidence to show that people with a learning disability are almost twice as likely to experience mental health problems as those from the general population, which makes the absence of learning-disabled people’s perspectives from the literature even more stark.
Logically, there should be much more representative research into the experiences of a group of people who are statistically very likely to need mental health support in their lifetime.
Ethical exclusion
I also found that researchers frequently state learning disability as a factor that prevents people from participating in research (see page 12).
The origins of ensuring people have the capacity to consent to research were intended to put a stop to inhumane experimentation on people with learning disabilities – a practice that had been considered ethically acceptable until the 1960s. However, the introduction of more stringent ethical safeguards has resulted in people with learning disabilities being excluded from research participation.
Although the Mental Capacity Act 2005 favours inclusive approaches to capacity and presuming competence, it still seems that it is acceptable practice in many research fields to rely on capacity and perceived deficits as exclusion factors, particularly for people with more severe, complex and profound learning disabilities.
In the 12 articles I did find from the perspective of people with both learning disabilities and mental illness, strong patterns emerged across their experiences of mental health services.
This is significant as the studies were conducted over a 20-year period, in a variety of settings from secure inpatient services to community settings, and involved participants with a range of mental health needs and levels of impairment. The information gathered covered a very broad range.
“Being listened to” was a main theme and, in services viewed as good, professionals paid attention. Photo: Seán Kelly
Ignored and stigmatised
The most common theme that arose was “being listened to” – or, in several cases, not being listened to – which came up in almost every article. Where this was mentioned, participants were unanimous in reporting that professionals who listened were essential to good service delivery whereas not being listened to was a significant factor in negative experiences.
Another prominent theme was the level of stigma and discrimination people encountered. Stigma took many forms, ranging from being treated differently by staff and by members of society more generally to being ignored or singled out.
A wide range of discrimination was experienced by the people with learning disabilities who took part in these studies. They reported having poorer life outcomes and quality of life, difficulty in accessing support to ensure adequate housing, healthcare, employment and education, and few opportunities
for meaningful or contributing roles in society. It was notable that social exclusion had a significant negative effect on quality of life.
Many people reported that their mental health difficulties were diminished or ignored by a range of professionals, even in specialist settings.
Within mental health services, especially mainstream services, attitudes were often poor, with a sense among mainstream staff that people with learning disabilities belonged elsewhere. One article referenced a member of staff in a general inpatient unit telephoning a consultant of a learning disabilities unit saying, “We’ve got one of yours” (Donner et al, 2010: 8), despite the patient not being known to the specialist service.
When living in the community, the same sense of being ostracised is reported. One research participant describes being treated as if they were invisible: “We ask a question… they just ignore you… just walk by… without saying a word” (Sutton and Gates, 2020: 6).
People with learning disabilities and mental illness also face the double jeopardy of being stigmatised and discriminated against twice over because these two populations are highly stigmatised by society.
In addition, there is some evidence to show that people with learning disabilities are further stigmatised by those who live with mental illness but who do not have a learning disability – which then places them on the furthest edges of an already marginalised population.
For people with learning disabilities who end up in inpatient settings, the sobering Out of Sight – Who Cares? report from the Care Quality Commission, published in 2020, details the ongoing stigma, discrimination, segregation and abuse that an unacceptable number of people with learning disabilities and mental illness suffer at the hands of service providers.
The first published inquiry into the abuse of people with learning disabilities happened more than 50 years ago, as a result of a horrified nurse blowing the whistle about the inhumane treatment of patients he witnessed at the Ely Hospital in Cardiff (see page 30).
The inquiry called for widespread reform and lasting change and, in the passing decades, we have seen the introduction of human rights legislation and a repeated series of almost identical inquiries, reports and recommendations. Yet it seems that very little has changed for people with learning disabilities whose mental health needs are left to escalate.
Another common theme was how frequently people experienced problems accessing services, particularly because mainstream professionals lacked understanding, including reports that this made people with learning disabilities feel unsafe in general settings.
There was a lack of accessible information and many services were incredibly difficult to navigate. This meant people often had to depend on those involved in their care instead of being able to rely on reasonable adjustments being made despite these being a legal requirement under the Equality Act 2010.
Even among the few articles that were from a lived experience perspective, only one of the 12 had an easy-read version. This means that, for the most part, people involved in the research, who had agreed to share their experiences, will have been unable to access the findings.
Respect and autonomy
Even with the small amount of research available, there were several common themes around positive experiences of mental health services.
The most frequently mentioned theme was importance of relationships and being respected, followed by having control, choice and autonomy when working with professionals. This included being allowed to take risks or make decisions that others might not agree with, rather than having those decisions made on their behalf.
The final theme was being able to have meaningful opportunities in life, whether related to work, learning or relationships.
These positive experiences seem to sit within the aims of mental health recovery and the policy intentions of the past 20 years yet, given this evidence, the gap between intentions and practice does not appear to be narrowing for people with learning disabilities and mental health problems.
It seems that ambivalence continues among professionals and across society to accommodate and include people with learning disabilities, which reflects a long history of viewing people within this group as “other” and excluding them from mainstream services intended for all.
It is clear from the small amount of literature that exists that there needs to be more, better-quality and fully inclusive research into the experiences of people with learning disabilities and co-occurring mental illness.
Such research is important not only to ensure that the voices of a significantly marginalised population form part of the evidence base but also to stimulate discussion around enduring policy and practice gaps by using flexible research approaches and reframing inclusion as an imperative.
For a copy of Emma Dalrymple’s dissertation, Another Point of View: an Evaluation of Mental Health Services from the Perspective of People with Learning Disabilities and Co-occurring Mental Illness, email her on e.dalrymple@ucl.ac.uk
Emma Dalrymple is carer and educator for her daughter, who has a range of disabilities, and patient and public involvement lead for a number of research projects at UCL Great Ormond Street Institute of Child Health
References
Donner B, Mutter R, Scior K (2010) Mainstream in-patient mental health care for people with intellectual disabilities: service user, carer and provider experiences. Journal of Applied Research in Intellectual Disabilities. 23: 214–25
Sutton P, Gates B (2020). Narrating personal experience of living with learning disabilities and mental health issues in institutional and community settings: a case study. British Journal of Learning Disabilities. https://doi.org/10.1111/bld.12338.
