The NHS 10 year plan must work for people with learning disabilities
4 min read
As the NHS England 10-Year Plan takes shape, it presents a unique opportunity to tackle the entrenched health inequalities faced by the 1.3 million people with a learning disability in England.
These disparities are stark. On average, women with a learning disability die 23 years earlier than women in the general population, for men it is 20 years. In 2022 alone, 42 per cent of their deaths were avoidable, a main cause of this is that health services aren't built to support people with a learning disability. We know what needs to be fixed and we need to work together to make sure that no-one else with a learning disability dies when they can be saved.
It was less than four months ago that I was invited to provide evidence as a panel member as part of Lord Darzi’s report on the state of the NHS, which clearly articulated a range of existing health inequalities and barriers for people with a learning disability. The NHS 10- year plan needs to build on the findings and propose action to truly meet the needs of people with a learning disability.
Our worst fear is that decision makers will try to bolt on people with a learning disability after the plan is designed
Currently, the NHS is not working for people in some of the most basic of ways – firstly, because the system does not consistently identify who has a learning disability nor acknowledge and record their needs. In fact, the Learning Disability Register only captures around a quarter of the people that should be recognised. Many people with a learning disability who are say that they have never been asked about what support they need to access care.
It comes as no surprise that people with a learning disability still struggle to get the reasonable adjustments they need, despite these requirements having been introduced by the Disability Discrimination Act, 1995. Reasonable adjustments can range from receiving accessible letters, to ensuring a learning disability nurse is present at appointments. Our own research shows that 45 per cent of people with a learning disability said they had to push to make reasonable adjustments happen with their GP and over half (51 per cent) of people who said they needed communication support at the doctors did not get it.
People with a learning disability often have complex health needs requiring a system that can provide consistent and joined up care. Many people tell us they need to see a doctor who knows about their health issues, and how to communicate with them well, yet struggle to get this. For over a decade research has consistently flagged a lack of joined up and co-ordinated care as a major issue contributing to the avoidable deaths of people with a learning disability. We still desperately need action to address this.
Beyond this, we are concerned about how the NHS is held accountable for the care of people with a learning disability. As part of our work supporting families through our helpline, we often see people having to really battle the system to get recognition of the issues their loved one's face. At organisational and system level, the Learning Disability Improvement Standards for NHS Trusts, which the last government committed to rolling out, is currently destined for the scrapheap unless the current government can turn this around.
Finally, we need a sustained focus on reducing the number of people with a learning disability and autistic people detained in mental health hospitals, despite them having no mental health issue. The average stay for inpatients is nearly five years. This shows a systemic failure that successive governments have struggled to address over many years. The 10-Year Plan must commit to community-based solutions and a shift away from prolonged institutional care.
People with a learning disability need an inclusive NHS that that makes reasonable adjustments, tailoring care to meet individual needs, provides joined-up care to prevent anyone from falling through the cracks and guaranteeing access to quality annual health checks, screenings, and community support to address risks before they escalate.
We must put people with a learning disability (and others with complex needs) at the very heart of the NHS 10-year plan. A system that can meet their needs and can meet the needs of everyone. Our worst fear is that decision makers will fall in the trap of trying to bolt on people with a learning disability after the plan is designed, leaving us with a system limited by the same problems. The NHS 10-Year Plan can be a turning point. The solutions are clear, we now just need action.
Jon Sparkes OBE, chief executive of Mencap
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