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The NHS has today announced that an additional £5 million will fund reviews to improve care for people with a learning disability and committed to renewed national action to tackle serious conditions.
The world’s first programme to review the deaths of everyone with a learning disability is being expanded to speed up the spread of best practice.
Thousands more reviews will be carried out over the next 12 months, driving local improvements to help save and improve lives.
England’s top doctor Professor Stephen Powis has also written to leading doctors and nurses across the NHS to ensure that a learning disability or down syndrome should never be a reason to issue a do not resuscitate order or cause of death certificate.
As the third annual report that reviews the deaths of people with a learning disability and action plan is published, the NHS has committed to national action to tackle the major killer conditions among people with a learning disability based on lessons learned from reviews. These include:
- Pneumonia – efforts will focus on increasing the uptake of the flu vaccine among people with a learning disability alongside other at risk groups through a targeted awareness campaign.
- Respiratory – The NHS will commission an independent review into the deaths of people with a learning disability due to respiratory conditions to address inequalities amongst this patient group.
- Constipation – the NHS will launch a national campaign to promote awareness around the risk of constipation including how it can be prevented, recognised and treated to better support families, carers and staff who work with people with a learning disability.
- Sepsis and deterioration – Earlier this year NHS England took action to help ensure hospital staff spot and treat the killer blood condition within an hour to save thousands more lives.
- Cancer – the uptake of screening to ensure early diagnosis of cancer is a priority for the NHS with a focus on people with a learning disability in the national screening review. The NHS is prioritising making reasonable adjustments for screening including the roll out of easy read information.
The reviews into deaths of people with a learning disability have led to hundreds of local innovations including widespread introduction of hospital passports so that all staff have everything they need to know about a person with a learning disability, learning disability champions in GP surgeries with specialist skills and training to support carers spot the signs of deteriorating health.
Ray James, national director for learning disabilities at NHS England & NHS Improvement, said: “Significant progress has been made over the last year and the renewed commitment today will ensure we continue to drive important learning and ensure widespread improvements in the care and treatment of people with a learning disability.
“The NHS is taking action to tackle major conditions among people with a learning disability including sepsis, respiratory conditions and cancer, while the NHS Long Term Plan sets out further action to support people with a learning disability and autism to live happier, healthier and more independent lives.
“I want to pay tribute to the contribution that many bereaved families have made to this important work, their courage, constructive challenge and willingness to share their experiences for the benefit of others has helped the NHS locally and nationally to improve care and save lives.”
Sheila Handley, bereaved family carer and expert by experience, said: “My son Richard died in 2012. Since then, I’ve been keen to help push for changes to make the avoidable deaths of people with a learning disability a thing of the past. It’s wonderful to hear that investment in the LeDeR programme is increasing.
“At last there is a drive to not only understand the cause of premature deaths but, far more importantly, to take the actions needed to improve care and save lives. There’s still a long way to go, but this a big step in the right direction.”
The care of people with a learning disability is a national priority for the NHS as part of its long term plan setting out action to stop the over-medication of people with a learning disability, increase the uptake of annual health checks to improve access to care and providing dental, hearing and eyesight checks in specialist schools for children with a learning disability and autism.