People with learning disabilities must be heard by NHS
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4 min read
The NHS Plan is an opportunity to ensure people with learning disabilities are properly served and not, as is too often the case now, ignored.
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 are not 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.
Less than four months ago I was invited to provide evidence as a panel member as part of Lord Darzi’s report on the state of the National Health Service, which clearly articulated a range of existing health inequalities and barriers in the NHS 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.
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 say they have never been asked about what support they need to access care.
Yet 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.
The 10-year plan must commit to community-based solutions and a shift away from prolonged institutional care.
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, and we still desperately need action to address this.
We are concerned about how the NHS is held to account for the care of people with a learning disability. 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 makes reasonable adjustments, tailoring care to meet individual needs, providing 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. 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 – now we just need action.
Jon Sparkes OBE is chief executive of Mencap.
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