Providing a safe space for important conversations

During the pandemic, the Care Quality Commission reported that inappropriate Do Not Attempt Cardiopulmonary Resuscitation (DNACRP) notices had caused potentially avoidable deaths for people with a learning disability. In light of this, a Government Ministerial Oversight Group was established to investigate this injustice.

However, within the Ministerial Oversight Group group, there was nobody with lived experience of the very issue it was set up to tackle. So, the Stop People Dying Too Young Group, a support group who meet to discuss why people with a learning disability and autistic people die too young, felt compelled to do something about this.

The group co-produced an Easy Read letter to the DNACPR Oversight Group which received over 300 signatures from support groups, disability organisations and the general public, explaining that if the Group is serious about making changes, then it must start by listening to people’s experiences.

Indeed, the pandemic exposed the health inequalities between people who have a learning disability and those who don’t. In the five-week period following the third lockdown, Covid accounted for 65% of deaths of people with a learning disability and people with a learning disability aged 18-34 were 30 times more likely to die from Covid than others of the same age.

The initial response from the Ministerial Oversight Group? Silence. And when they did finally reply, it was not in Easy Read. The Government said people with lived experience cannot be part of the group. Despite the Government refusing to listen, the Stop People Dying Too Young Group remain determined to tackle health inequalities and the unequal treatment of people with a learning disability and autistic people.

They have written another letter to the Oversight Group which received even more signatures – they will not give up their fight. They demand respect for people with a learning disability and autistic people and are determined to be included in the Ministerial Oversight Group as full and equal partners.

Talking about death

Almost half of deaths among people with a learning disability in 2021 were avoidable – double the rate seen in the general population. However, this is not something people talk about which gives the impression that people do not care and that a disabled person’s life is not as valuable.

The Stop People Dying Too Young Group started 5 years ago as part of the  NHS Leder Programme and is a safe space to discuss death and dying and why people with learning disability and autistic people die too young. It’s made up of 15 people with a learning disability, autistic people and family carers.

“Our lives have as much value as everyone else’s. We are all unique and individual. We are not a diagnosis or a label. People should see the person, not the disability or what race I am.”

The group is built on a foundation of trust and support, where members share stories of the people they love who have died. The willingness of those within the group to openly discuss such intimate memories of their loved ones is incredibly brave.

Members of the group are angry and scared about their future – they are worried about having to go to hospital and not getting the right care. However, in the safe space of the Stop People Dying Too Young Group, the group also makes sure that nobody leaves the meeting feeling sad.

It’s important to be able to stay positive when you do work that is as hard as this.

The Stop People Dying Too Young Group are keen to ensure that the work they do is accessible to everyone and therefore they like to make videos of the work they have done. For example, this year they created a guide to Emergency Health Care Plans in partnership with Northern Cancer Alliance…

The meaning of the Leaders’ List

When the Stop People Dying Too Young Group found out they had won a spot on the Dimensions Leaders’ List they were very excited and broke out in a round of applause.

There is not enough visibility in society of people with a learning disability and autistic people so the Leaders’ List is a great opportunity to showcase passionate activists and put a different narrative out there about what disabled people can achieve.

This achievement gives the Stop People Dying Too Young Group a chance to rewrite the narrative on what disabled people can achieve and is another step in ensuring that, finally, their voices are heard.