In a recent social care conference, Jim Blair and Scott Watkin addressed the issue of the UK's healthcare system and its treatment of learning disabled people during the pandemic and beyond.
Blair and Watkin have worked together to produce a new suggested model for a "Quality Monitoring Improvement Panel", which favours those with a learning disability themselves rather than professionals.
Blair, an Independent Consultant Nurse for learning disability and chair of the Royal College of Nursing London board, starts the presentation by discussing what learning disability nurses should be doing to preserve the best interests of those with a learning disability.
The future framework for learning disability nursing
Blair uses the "Give me five" framework to highlight his vision for the future of learning disability nurses. He says learning disability nurses must:
- Focus on and address diagnostic overshadowing
- Be able to tune into their patient's frequency by learning about health issues and how they present differently in people with a learning disability.
- Consistently engage individuals with a learning disability and their families in care evolution, working together to move things forward.
- Model and shape good practice across all services to improve the health and wellbeing of those with a learning disability.
- Understand the law, mental capacity act, equality act and human rights act to ensure those with a learning disability get the right support in the right way.
Scott Watkin, who has a learning disability himself, highlights the importance of getting this right, as well as how the government could improve. He is currently the head of engagement at SeeAbility and was the co-national director for learning disabilities for two years.
He explains that during the pandemic, the government was not clear about what people with learning disabilities could and could not do; with some learning disabled people getting letters instructing them to shield, while many, like Scott, did not receive anything at all.
He explains that people with learning disabilities should have been higher on the agenda for Covid treatment and vaccination, and that they shouldn’t have had to fight as much as they did to be recognised. Watkin says this shows the government's lack of experience and understanding of how to treat people with learning disabilities.
What needs to change?
Instead, the pair suggest the formation of a new panel which gives a voice to those with learning disabilities. They propose the panel is made up of 51% people with a learning disability, 34% family members of those with a learning disability and 15% professionals.
The model for this learning disability quality improvement panel would have three co-national directors for learning disabilities:
- An individual with learning disabilities
- An individual with parental or family experiences
- An individual from a professional background
Currently, such panels are dominated with professional voices who do not have any lived experience of learning disability, which means it takes a lot longer to work out what is going wrong and why.
In Scott's experience, many professionals make promises of change, yet in reality, "nothing ever happens". The suggested model hopes to change this, with a balance which is weighted in favour of learning disabled individuals themselves. He said: “It’s about putting yourself in a person with a learning disability's shoes and the families' shoes. You don’t live it and breathe it every day, you don’t have the challenges that we go through every day.
“We want to see action, we don’t want to see another report sitting on a shelf collecting dust and saying sorry we’ve learnt lessons. We want action now.”
Both Jim and Scott emphasised the importance of bringing about change quickly, as progress over recent years has been slow. A decade on from the Winterbourne View scandal, which saw the emergence of the Transforming Care programme, there are still more than 2,000 people in inpatient settings, many of whom are regularly being restrained and poorly treated.
Jim emphasised that such a panel would be instrumental in achieving change through joint ownership and responsibility, as well as accountability. He said: "We need to make sure that the structures are built around, with and for [people with a learning disability] and together we can change that. The action needs to happen now, we need to provide support throughout the country, we need to reduce the elements of poor housing and the issues around poverty. These changes are really important, but if we’re going to make them, we need a panel with co-national directors so that we can get a correct direct of travel to move forward.”