Learning Disability Today
Blue Sky Offices Shoreham
25 Cecil Pashley Way
T: 01273 434943
I’m sitting here in my new office (actually it’s my bedroom) finding myself getting used to the “new normal” of seeing service users via Zoom rather than my normal face-to-face therapeutic practice.
In the early stages of grief, the phrase “struggling to take it in” is often used but it seems like now we have moved on from that after the early shock, which may have included some denial. I am now wondering – are we getting used to the death rates? In the United Kingdom there have been over 40,000 deaths now. This is a considerable challenge to process these numbers. Particularly if we’ve not been personally affected, it can be easy to distance oneself from these reports. Is it possible to comprehend this level of death? This has been a tragedy for many people; some have died alone, their family members only able to attend a funeral “virtually”.
I was struck by a comment by the actor, Monica Dolan, speaking about her brother’s death from COVID-19: “Its intensely personal, and I love him so much, and at the same time death suddenly becomes part of a wider global narrative, and I don’t know how I feel about that.
“I’m sure a lot of people are feeling like that”. Her comments highlight how grieving is part personal internal process but is affected by the wider community. I felt Dolan was highlighting how she did not want her brother to be seen as merely a number.
What about if you have a learning disability?
The service users I am in contact with been following the lockdown rules and many are frustrated, bored, and fearful. While it’s hard to get exact mortality statistics of people with learning disabilities, my understanding of death rates is that it is up 136%. This is a lot of deaths and a lot of grief. We also need to think about the stress levels of support staff and their family members. Many are operating under the ethos of “just getting on with it”.
We will not be able to get the full picture for a while but that does not stop services from planning and thinking about how to support people. There have been countless recommendations about how support staff should facilitate conversations about grief and loss with people with a learning disability. For too long this group ,who have felt like outsiders, are told that they do not fit the criteria for support.
We know that one of the reasons people with a learning disability can struggle with grief is not having strong social networks. This lack of connection can affect the grief reaction. I wonder about the reports of how the pandemic has changed society with an increase in community spirit, altruism, and mutual aid. Is there an opportunity to make people more connected with the broader community? I understand this could be a challenge.
The right support
There are a variety of approaches to help people with loss and no one size fits all. There is a role for psychological support, practical support like social stories, or scripts. One new idea I would like learning disability services to take seriously is a ‘death cafe’. Put simply, this is a group who come together to discuss death over a cup of tea and a piece of cake for an hour or so. Participants may or may not know each other. There is no agenda and one or two facilitators. They are, in effect, pop-up events. My experience is that not only are they a powerful experience, but can be a surprisingly lively environment. Death cafes have become a huge worldwide phenomenon with a thriving website with details of local cafes.
There are challenges in doing this with this group, no doubt. The trust I work for have organised a multidisciplinary team approach. This means that we can cover practical aspects – like communication – with support from the speech and language therapists, as well as a psychological therapist for any post-bereavement support, for example. It also gives participants an experience of shared grief together.
You may need to make adjustments with the use of materials or activities to suit group or individuals needs. In the first instance, we are exploring doing one for support staff and carers online. If that goes well, we can look at developing one for people with a learning disability. This is a moment when death and dying are very much on the national agenda – we need to find a way to tap into this.
The idea that we are all this together is a myth; there are inequalities in the death rate due to social and economic factors. But what I like about the death cafe is how as we share the commonality of death and its effects, this is perhaps one of the few occasions when all people are able to connect and share our anxieties. Put that kettle on.