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LeDeR report highlights care crisis and need for learning disability nursing investment

Warning comes as the latest Learning Disability Mortality Review annual report finds learning disabilities and Down’s syndrome still being given as a cause of death

Warning comes as the latest Learning Disability Mortality Review annual report finds learning disabilities and Down’s syndrome still being given as a cause of death


Picture: Alamy

A national review has found 19 people had ‘learning disabilities’ or ‘Down’s syndrome’ recorded as a reason for do not attempt cardiopulmonary resuscitation (DNA CPR) orders.

The third Learning Disabilities Mortality Review (LeDeR) report also found nearly 250 people had their underlying cause of death described as Down’s syndrome and that the care of nearly one in ten adults with learning disabilities was well below what should have been expected and, in some cases, contributed to their death.

The publication of the report, following two other damning reports this week by the Children’s Commissioner for England and the Care Quality Commission, as well as a BBC Panorama programme, Crisis in Care, to be screened this evening, has shone a spotlight on the care of people with learning disabilities two months after the Transforming Care programme – the much-heralded government initiative to transfer patients out of long-stay institutions and into the community – failed to meet its target.

Decline in nurses and students


RCN’s Ann Norman: ‘Wake up and
start investing in nursing.’

It also comes at a time of decline in the number of learning disability nurses working in the UK and the number of nursing students taking up the field of practice.

RCN professional lead for learning disability nursing Ann Norman said: ‘This is what happens when you do not invest in good clinical staff with the right skills. When you do not invest in nursing, when people are not replaced, when there is no leadership – then you resort to using medication and leaving it to junior staff. My heart goes out to them.

‘We have been saying this for some time. Invest at an earlier point and do not wait for a crisis to appear. People are at breaking point, and you don't want to wait until someone is assaulted. Wake up and start investing in nursing.’

'Chronic' reduction in learning disability nurse numbers

Speaking at a fringe event at RCN congress, University of West London professor of learning disability nursing Bob Gates said: ‘Year-on-year we have seen that the chronic and corrosive reduction in learning disability nursing numbers is still not being adequately addressed. Shame on those who have not done anything about it.

‘We still have people with learning disabilities living in assessment and treatment centres. They should be living near their families and communities.’

NHS England today announced an extra £5 million to fund LeDeR to catch up on a backlog of thousands of cases that have yet to be investigated. NHS England national medical director Stephen Powis is writing to leading nurses and doctors UK-wide with a reminder that having Down’s syndrome or a learning disability should not be a reason for a DNA CPR order to be recorded on a death certificate.

Many deaths still not reviewed

Mencap head of policy and publication affairs Dan Scorer said: ‘Thousands of deaths have still not been reviewed and must be addressed as a matter of urgency with the new money announced, so that reviews are carried out quickly and thoroughly.

'NHS England also needs to address the serious concerns from families that some NHS bodies are failing to cooperate with the programme and learn from deaths.’

NHS England and NHS Improvement national clinical director for learning disabilities Ray James said: ‘Significant progress has been made over the past year, and the renewed commitment today will ensure we continue to drive important learning and ensure widespread improvements in the care and treatment of a person with a learning disability.’

Causes of death and action points

The Learning Disabilities Mortality Review report highlights the main causes of death and outlines action points. These are:

Pneumonia. Increase uptake of the flu vaccine in people with learning disabilities

Respiratory. An NHS-commissioned independent review of deaths in people with learning disabilities with these conditions

Constipation. A national campaign to highlight risks associated with constipation and how it is recognised and treated by staff, carers and families

Sepsis and deterioration. Identify and treat it earlier, particularly by hospital staff

Cancer. Increase uptake of screening of people with learning disabilities


Find out more

NHS England (2017) Transforming care

NHS England (2019) Learning Disability Mortality Review (LeDeR) Programme: Action from Learning

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