Capacity to comment on Covid

Creating digital content, capturing stories and experiences, documenting history

Where I work we have a bank of digital stories, staff are trained in making patient stories and capturing peoples experiences, sometimes as a result of a complaint, to share or celebrate good feedback or provide information and always for learning. we are a learning organisation and we want to improve our services, these 2 minute stories can be thought provoking, challenging, emotional and empowering. Over the last couple of weeks I have been working on a story of a person with a learning disability who contracted Covid:19. This person spent a number of weeks in hospital, in ITU and wanted other people to know what that was like for them, that they survived. A colleague completed a very detailed story outline with lots of medical information, terminology and scary sounding procedures, detailing how unwell the person was and what level of care they needed. I was very keen to make the story and have a positive image of a person with a learning disability who has survived Covid:19, particularly in light of the ongoing health inequalities, barriers to access and the negativity back in March when we heard about the potential use of inappropriate tools to threshold levels of care and the NICE rapid guidelines which advocated the use of the frailty score.

I have needed to be even more creative in capturing the story and making it than usual due to social distancing and with the help of technology and our amazing arts in health coordinator Prue.

Versions of the same story

When I asked the person to tell me their story they talked about never being in hospital before, being frightened and the importance of their family members who were allowed to wheel them down to surgery and be there when they needed them. They talked about the nice nurse who they liked who gave them a drink, a lollypop and a packet of crisps and the Dr who said ‘well done, two fingers up’ (they meant to say thumbs).

The story is slow, laboured by breaths which are deep and drawn and it’s powerful. Each time I listen to it I think of the Maya Angelou quote, so commonly used in nursing: ‘people will forget what you said, people will forget what you did, but people will never forget how you made them feel’.

This person has the capacity to consent to the story being made, they can consent to the pictures being used and their family and team are supportive of the process and see the value in telling the tale and I am the lucky one who got to be immersed in the process.

But this has got me thinking…………….and in partnership with colleagues who are keen to raise and recognise the voices of people with learning disabilities we are asking: What about people who are unable to consent? Some people we support might not have the skills to actively think of and intentionally communicate these ideas. Indeed, the story that I thought I was going to tell based on the request form is very different to the finished version, but equally as important, if not more so as it is the persons words, their version of events and their reality.

Finding representation of their communication is empowering and enabling and can only be in their best interest.

We are living through a pandemic, a historical event, which has presented many challenges for all of us.  People with learning disabilities are experiencing this and will have a unique insight into how Covid 19 has affected them. There are often times that people with learning disabilities are excluded and devalued by society and there are many examples of this in a Covid 19 context.  By supporting people to be included in these projects, they have a chance to tell their story and be heard, recognised and valued.

People with a learning disability during  COVID-19 are able to share their “lived” experiences in a variety of  formats, therefore their photograph, their words and their pictures make a valuable contribution to our understanding of the impact of and learning from events.

If people with a learning disability are not given the opportunity to be involved, we are not able break down barriers, judgements or stereotyped beliefs about people who have learning disabilities.  Inclusion in this project gives a new insight and allows us to get a truer understanding of the individuals, if they are involved by stories or photographs, services and society may be able to challenge ways of  working on assumptions and stereotypes.

As a colleague recently wrote in a proposal for a co-produced document of living through Covid (A Zine, no less): ‘Best interest must consider the widest forms of communication possible and utilising photos or video of people in their day to day situations, means that people who have little or no language can also contribute. Otherwise, we fail to include their day to day non-verbal or limited verbal communication which we do understand, within a co-production approach to care’.

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