Irene Tuffrey-Wijne, Professor of Intellectual Disability & Palliative Care, Kingston & St George’s University of London.
Unsurprisingly, it has been society’s most vulnerable and marginalised people who were first to fall through the Covid cracks. The elderly, the homeless, the disabled, those with mental health problems, the institutionalised (prisoners, people in care homes).
It is not just physical disadvantage (age, underlying health conditions) when faced with a virus that can kill. It is also social and emotional disadvantage. The difficulty (even inability) of some people to maintain social distance – because they don’t understand it, or because they live closely with many others, or because they are dependent on carers (who come and go) to provide intimate physical care, or because they rely on carers to speak up for them but are unable to do so now, or because they are already socially isolated in society with little support, or because they simply do not speak the language. That list goes on.
And how about the disadvantage in accessing health and social care services, including palliative care services, because the system doesn’t speak your language, meet your needs, understand your needs, or even see that there is a problem?
When it comes to disadvantage in a pandemic, people with intellectual disabilities have topped the charts, as they so often do. Many people with intellectual disabilities fit into so many of the DISADVANTAGE boxes (I know people who fit into all of them), it’s a miracle they keep going.
The pandemic has shone a spotlight on inequalities. Without “reasonable adjustments” to the way services are usually provided, people with intellectual disabilities are at a very serious disadvantage. You simply cannot use blanket policies, procedures or approaches for everybody. This has become much clearer during the Covid-19 pandemic, when policies and procedures had to be drawn up very quickly. It soon became obvious, for example, that the “no visitors in hospital” policy meant that
many people with intellectual disabilities were unable to access hospital at all. Without their familiar carer, they simply couldn’t cope with it, and they were thus at greater risk – not just from distress, but even from dying. So, the UK government updated its guidance pretty swiftly, allowing a visitor for patients with intellectual disabilities.
We have known for years that people with intellectual disabilities are more likely to die avoidable deaths and less likely to access palliative care services when they need them. But there is a new awareness, and I hope that we can build on that. I am heartened by the huge numbers of people who have attended the webinars I have started hosting with the Palliative Care for People with Learning Disabilities Network – https://www.pcpld.org/home/webinars-and-podcasts/ – thousands have tuned in every month. I’ve also worked with Books Beyond Words – https://booksbeyondwords.co.uk/coping-with-coronavirus to produce free pictorial resources that can help people with intellectual disabilities cope with coronavirus, dying and bereavement, which has had tens of thousands of downloads. There is clearly a need out there.
Getting it right for people with intellectual disabilities will help all of us. I think we could all benefit from the highly individualised approaches, straightforward communication and team working that people with intellectual disabilities need. I can be pretty confident that hospital or hospice staff who get it right for them, will also get it right for me. Making sure that people with intellectual disabilities get the right care and support should be your Gold Standard. It is the litmus test for health and social care providers.
So, next time you meet a patient or a relative who has intellectual disabilities, see it as an exciting opportunity to learn and get it right.
Prof Irene Tuffrey-Wijne
Professor of Intellectual Disability & Palliative Care, Faculty of Health, Social Care & Education
Kingston and St.George’s – A joint enterprise of Kingston University and St.George’s, University of London: 6th floor Hunter Wing, Cranmer Terrace, London SW17 0RE, UK