Co-Production Learning Disabilities & Autism Opinion Real Lives


Mencap Harrow and their self-advocate group

The power of self-advocacy in making real change

Tragically, the Covid-19 crisis has made us abundantly aware of the inequalities that exist in our society. Nowhere was this clearer than in the in the health inequality which people with learning disabilities experience.

Even before Covid-19, men with a learning disability died 23 years younger and women 27 years younger than the wider population. They are also more likely to be obese and have double the rate of diabetes compared to the general population – both conditions increase vulnerability to Covid-19.

The pandemic has only exacerbated and exposed these inequalities which people with learning disabilities experience in our society.

Public Health England estimated that between 21 March – 5 June, people with learning disabilities died from Covid-19 at a rate 6.3 times higher than the wider population. Younger people with learning disabilities aged 18-34 died at a rate 30 times higher.

Getting another nurse at London North West University Trust

Self-advocates at Harrow Mencap were deeply concerned that busier hospitals due to the surge of Covid-19 cases would mean patients with learning disabilities would be unable to access the reasonable adjustments that they needed.

With this in mind, they re-focused their campaigning efforts on getting another learning disability (LD) nurse at the London North West University Trust. Started a local petition which got over 600 signatures and got their MP to write to their NHS trust advocating for another nurse. After just two months, the campaign succeeded in getting another learning disability nurse at London North West University Trust.

What the campaign showed is the power that self-advocates can have in making real change in their communities, and that the national shortage of LD nurses in NHS posts can and should be addressed.

Why and how we made the Learning disability nurses not hearses campaign national

With this momentum the self-advocates decided to make the campaign national – the 40% drop in the number of LD nurses in NHS posts since 2010 needed to change.

We felt that if there had been more LD nurses at hospitals, people with learning disabilities would have found it easier to access the healthcare they needed during the pandemic. We were sadly proven correct by the mortality review into Covid-19 deaths of people learning disabilities which found that in 21% of cases where reasonable adjustments were indicated, the provision was not made.

We worked with Royal Mencap to produce a letter for people to send to MPs inviting them to raise awareness of  the national shortage and to write to the government about this issue or support the Early day motion that one of our local MPs had tabled for us.

However, the most important part of this campaign has been the self-advocates, carers and leading LD nurse Jim Blair speaking directly to over 20 MPs from across four different parties including members of the shadow cabinet such as Jonathan Reynolds, Shadow Secretary of State for Work and Pensions.

Commenting on the campaign Jim said: “Learning disability nurses are essential across and within primary, hospital and community settings working alongside people with learning disabilities, their families and all health and care colleagues.  This is because learning disability nurses have the expertise to challenge diagnostics overshadowing, (when professionals put down something like a behaviour change to being part of a person’s disability without exploring the reasons behind what is happening with and for the person), ensuring health needs are identified and addressed in a timely tailored manner.  Learning disability nurses provide education in action for all colleagues working with them in how to tune into the health and well-being frequency of a person with learning disabilities, as well as having a solid practical appreciation of the mental capacity act, equality act, human rights act and mental health act.”

The Conservative MP David Simmonds praised the event, saying: ‘’It was valuable to hear first-hand how people had benefited from access to specialist nursing, and how it’s lack had affected others. Clearly, we need to ensure that everybody can fully access the healthcare that they need’’

We hope to build upon this by working with our key ally, Lisa Cameron MP, who chairs the APPG for disability to raise awareness of the important role LD nurses play and why the current shortage in NHS posts needs to be addressed so that all patients with a learning disability can access the treatment they need.

In support of this initiative Lisa said: ‘’As Chair of both the APPG for Disability and APPG for Health, I am delighted to be working with Harrow Mencap on their campaign and raise awareness of the national shortage of learning disability nurses. Learning disability nurses are crucial to our healthcare service and we must do all we can to highlight this rewarding career path.’’


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