| 18 May 2020
The unprecedented times we have experienced over the last two months, as we have attempted to adapt to life under ‘lockdown’, has caused uncertainty and anxiety on some level amongst all of us. Despite the fact it has been widely reported that coronavirus ‘knows no borders’, there is sadly no doubting that the sudden and unexpected change and disruption to everyday life it has caused, has posed even more challenges for our most vulnerable in society. In particular, our people with autism, people with learning disabilities, and their families.
Whilst new guidance was published on April 24 for care workers and personal assistants who support adults with learning disabilities and autistic adults, it’s clear that it’s so much harder for this cohort of our communities. Their routine which they rely on to bring structure to the otherwise uncertain world, was virtually taken away overnight, leaving them less able to cope with navigating the current upheaval, confusion and uncertainty brought about by Covid-19.
This population group across the UK already face healthcare disparities and someone who knows this all too well is Paula McGowan, who following the untimely death of her youngest child Oliver in 2016, who had learning disabilities and high functioning autism, has dedicated her life to campaigning for equal healthcare for people just like him, across the globe.
It was Paula’s petition for face to face autism and disability training to be made essential for every NHS and social care worker, which led to the government confirming in November 2019, that The Oliver McGowan Mandatory Training will be developed by NHS England and Health Education England (HEE) and be rolled out across the country.
Informing this vital training, which is currently being trialled by the Department of Health and Social Care, are our core capabilities frameworks for supporting autistic people and/or people with a learning disability. Commissioned by HEE, Skills for Health led the development of these frameworks, guided by a steering group of key stakeholder organisations including a range of Royal Colleges, NHS Trusts, voluntary sector organisations and professional bodies. The latest new capabilities framework for Advanced Clinical Practice (ACP) has recently been published in April 2020.
This week we caught up with Paula, who now lives in Australia, to discuss the impact of coronavirus on those with autism and how this framework will help contribute to ensuring those in need receive the high quality care they deserve and improve life expectancy.
“Every person has a right to equal good quality healthcare, sadly this does not always happen and there is clear evidence that people with a learning disability experience poorer access to healthcare resulting in worse health outcomes. One of the starkest inequalities is that people with a learning disability experience very high rates of premature mortality.
“Most recently, the Learning Disabilities Mortality Review Programme has highlighted the persistence of health inequalities and that people with a learning disability die, on average, 15-20 years sooner than people without a learning disability. My 18-year-old son Oliver McGowan was one of those people to lose his life avoidably.
“To some extent we are all struggling to cope and adapt to life amidst the Covid-19 pandemic. Escalate that a thousand times over for those who have learning disabilities and/or autism. They are frightened and confused. They and their families feel forgotten, they feel that they are not getting the support they need. Those whose children who are in care homes are not able to visit their vulnerable children. The pain and trauma for them and their children is unbearable.
“It is more crucial now than ever, that we as a society reach out and offer support where we can. Many charities such as Mencap and The National Autistic Society are doing their best to reach out to autistic and/or learning disabled people, their families, and carers. But we can all play our part, by following the government guidelines and adhering to social distancing. This in turn will stop the spread of the virus.
“I embrace the ACP Capabilities Framework because it ensures that practitioners understand the needs and nuances of learning disabled and/or autistic people. It ensures health care practitioners and support workers have the necessary skills to ensure this group of people receive standardised quality health care that is individualised and appropriate to the person. The framework ensures that people are kept at the heart of all decision making, enabling them to make choices for themselves.
“This new framework will support The Oliver McGowan Mandatory Training which I personally believe to be essential for the training being a success. I strongly believe that if the ACP Capabilities framework had been in place when Oliver was alive, he may well be here today.”
The framework outlines what good governance of services for people with a learning disability and/or autism should include and will have a range of uses by different organisations, including employers and commissioners, as it can be used to underpin commissioning, workforce planning, education and training, as well as the development of career pathways and new ways of working.
Ashok Roy OBE, Clinical Advisor for Learning Disability & Autism, HEE said: “This framework supports the development and planning of the highly skilled section of the workforce dealing with people with learning disability and autism. The people making complex decisions and dealing with the highest risk.
“It comes at the height of the Coronavirus pandemic which has had a disproportionately adverse impact on this vulnerable section of society. The framework will help develop advanced clinical practitioners meet the growing demand for their skills and reduce the likelihood of restrictive practices.”
Paula McGowan’s instrumental campaigning for people with autism and/or learning disabilities has given a voice to many people who are not always able to speak up for themselves. As Sector Skills Council for Health, Skills for Health are proud to play our part in ensuring that all those who care for them across our NHS and social care sector have the right skills and training to understand their needs to provide the high-quality care they deserve.
Skills for Health Core Capabilities Frameworks offer guidance and good practice for development of our current and future health and care workforce, setting out the knowledge, skills and behaviours needed for safe and effective practice. Find more information about all of our frameworks here.
Read Oliver’s story here and please follow Paula’s work on Twitter here.