People with learning disabilities continue to pay the highest price


Our Chief Executive, Lesslie Young looks at how social care is still being given a lower level of priority and how people with learning disabilities continue to pay the highest price.

The death of anyone is tragic. It is particularly so if it happens before the accepted natural life expectancy.

For over two months the significant numbers of people who, often prematurely, have lost their life because of COVID19 have been widely reported.

The numbers are harrowing. For those of us who work with vulnerable communities it has created a rapidly increasing level of concern about the welfare of the people we aim to represent.

NHS England announced last month 451 people who have learning disability and/or autism have died of coronavirus, accounting for 2% of all coronavirus hospital deaths. They stated this significant number of deaths, in an identified vulnerable group, was commensurate with the general population.

At the same time, however, the Care Quality Commission in England announced between 10 April and 15 May 386 people with a learning disability, some of whom may also have autism, died in care settings. Notably 206 were a result of COVID19. This marked a 134% increase in deaths compared to the same period last year.


Lower level of priority given to social care settings

These figures once again clearly illustrate the lower level priority given to social care settings. Purportedly social care is a critical component of the healthcare system hence the creation of Health and Social Care Partnerships (HSCPs).

Given there is a healthcare budget to address the challenges brought to bear by the pandemic, what percentage of that is being allocated to the critical social care partner?

The stark reality is, it has not and is not receiving the same level of funding or support as the NHS. COVID19 has served to highlight yet again, the devastating consequences this longstanding and damaging lack of support has had on such a vulnerable population.

Thousands have died in care homes and social care settings; many could have been avoided if social care was no longer treated as a silent partner, but truly seen as a critical partner of the NHS in a genuine working partnership.

This lack of support for some of the most vulnerable in our society has a hugely detrimental impact. People with learning disabilities die on average twenty years earlier than the general population. Researchers assert little investigation has been given to the causes of these deaths, many of which are avoidable.


Learning disabled still disadvantaged

Although these figures relate to England, Scotland is not immune from this problem. Several pieces of work have tried to address the inequalities in health and social care experienced by people with a learning disability.

From the establishment of the Scottish Commission for Learning Disability in 2001 to Keys to Life in 2013 to the Coming Home Report in 2018 and NHS Scotland’s Health Needs Assessment Reportin 2004 and 2017.

Additionally, the Scottish Learning Disability Observatory was established by the Scottish Government to generate evidence about the causes of poor health and health inequalities experienced by people with learning disabilities.

All this is laudable but to what end? Virtually twenty years later we are still asking the same questions and more importantly the learning disabled are still disadvantaged.

The Scottish Government and the Scottish Learning Disability Observatory are currently working together to try and publish Scotland-specific statistics on COVID19 deaths in people with learning disabilities.

When they do, it may serve as an indicator of whether the research, policy documents and multiple recommendations to improve care for people with learning disability have helped to curb significant unnecessary deaths.

There is a legal duty for public services to make reasonable adjustments to ensure the needs of people with learning disabilities are assessed and met.

There appears to be an increased appetite and greater willingness to improve the care experienced by the learning disability community. However, there is still a long way to go in terms of this policy work delivering meaningful outcomes for those it is aimed towards.

To realise genuine improvement, create a real partnership, that hunger needs to be fed, not with words but with resources, human and financial. If not, social care will simply starve to death. Then what?