The impact of health inequalities on people with learning disabilities
It is well known that people with learning disabilities have poorer health and die at a younger age than their non-disabled peers. These differences are to an extent avoidable, and are therefore called health inequalities.
Poor access to health services and inadequate health service responses are well known causes of health inequalities, but many other causes or determinants of health inequalities are in fact rooted in social issues such as poverty, housing, employment, social isolation and discrimination and the lifestyle ‘choices’ people are able to make in impoverished circumstances. Health inequalities and their causes are an important consideration for social care staff, not least because poor health impacts on people’s ability and motivation to engage in the social activities that are fundamental to quality of life.
In an attempt to improve understanding of health inequalities and enable social care providers to support people who may be affected by them, the Public Health England Learning Disabilities Observatory: www.ihal.org.uk worked in partnership with the Voluntary Organisations Disability Group and with provider representatives, people with learning disabilities and families, to develop the health charter, guidance and self-assessment framework for social care providers. The charter is underpinned by the determinants of health inequalities and sets out some clear actions that social care providers can take to address these. It is accompanied by The health charter in practice, produced in 2015, which illustrates some of the learning from implementation and gives examples of best practice from 20 organisations using the charter.
People with learning disabilities often have unmet health needs, partly because of difficulties with identifying and acting on symptoms. There is clear evidence that health checks help to address this issue, and they are an important reasonable adjustment that primary care services should put in place (Public Health England 2013: Learning disability health checks report 2012-13). Actions in the charter include providing information on health and wellbeing that is accessible to people with a learning disability and supporting people to attend health or screening appointments including health checks.
This is good progress but it is only a start, as people with learning disabilities still experience significant health inequalities. In 2012 a young man with learning disabilities died very suddenly as a result of unmanaged constipation. His name was Richard and before he died 10kg of faeces was removed from his bowel. He had seen both his GP and psychiatrist in that week, but the extent of the problem was not realised. Richard’s learning disabilities combined with his mental health problems made it more difficult for him to articulate how he felt. These factors along with a documented history of constipation that was supposed to be monitored (and which hadn’t been) were all known, making it both preventable and treatable. It is clear that Richard’s death resulted from multiple service failings, a lack of partnership working and information sharing, and a lack of understanding about the need to consider basic health issues.
In an article written after his death, Richard’s sister, Emily Handley, a senior clinical psychologist in the mental health and learning disabilities service at South London and Maudsley NHS Foundation Trust, described how joined up working and better communication about his physical health needs could have prevented his tragic death.
So what can we do differently to make sure this doesn’t happen again – how can we discuss, understand and act on the determinants of health inequalities across health and social care services?
Perhaps the determinants of health inequalities in themselves give us a framework to start from. The diagram below was developed by Göran Dahlgren and Margaret Whitehead in 1991 to summarise the causes of health and health inequalities. It demonstrates both the range and inter-connectedness of the influences involved, and it is clear that social influences play a large part (far outweighing that of health services in themselves). The model and further information on the impact of the determinants of health inequalities on people with learning disabilities can be found in Emerson et al (2012).
The Care Act 2014 recognises these issues and puts wellbeing at the heart of care and support as well as placing a general duty on local authorities to provide services that will contribute towards preventing or delaying the development by adults in its area of needs for care and support.
There are a range of options and actions to take in order to make positive change happen. With an awareness of how social issues lead to health inequalities and how this affects people with learning disabilities, social care practitioners can play a crucial role in addressing these inequalities and support improved outcomes for the people they are working with.
Practical steps we can take include focusing on working in partnership and sharing good practice. Signing up to the charter is also a move in the right direction. It is not only a pledge, but contains actions for all social care providers to develop a better understanding and improve practice when working with people who experience health inequalities.
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About the author
Sue Turner is the Programme Lead for Learning Disabilities at the National Development Team for Inclusion (NDTi) and a co-director of the Public Health England Learning Disabilities Observatory.
Emerson et al (2012). Health inequalities and people with learning disabilities in the UK: 2012. Improving Health and Lives Learning Disabilities Observatory: http://www.improvinghealthandlives.org.uk/publications/1165/Health_Inequalities_&_People_with_Learning_Disabilities_in_the_UK:_2012
Public Health England (2016). Making reasonable adjustments for people with learning disabilities in the management of constipation: http://www.improvinghealthandlives.org.uk/publications/313922/Making_reasonable_adjustments_for_people_with_learning_disabilities_in_the_management_of_constipation