Helping people with a learning disability live longer by tackling the causes of early death

John Trevains, Head of Learning Disability and Mental Health Nursing at NHS England, talks about the challenges and opportunities of working on delivering complex programmes like the Learning Disability Premature Mortality Review (LeDeR) programme. He discusses supporting delivery of this work and how all staff in health and social care can contribute.

In May, the University of Bristol published its latest annual report about progress and challenges with delivering the LeDeR programme.

It is unacceptable that people with a learning disability still die on average 20 years younger than the rest of the population and I wholeheartedly recognise the worry and distress of anyone affected by the findings of the LeDeR report, especially families concerned about, or mourning, a loved one.

The LeDeR report echoes what we know from the confidential inquiry into premature deaths of people with learning disabilities which reported that people with a learning disability are three times more likely to die from causes that could have been avoided with good quality healthcare.

The reasons for this are many and complex but there are areas where we are already taking action.

The report has given us more information about how conditions like sepsis, pneumonia and epilepsy are where the NHS could do more for people with learning disabilities.

As a result we have looked at an improved approach for caring for people with a learning disability ensuring that for various different physical health needs they get the right care, in the right place at the right time.

Last year we worked on this approach with people with a learning disability, who also have diabetes, to improve the care they receive and to make it easier for them to deal with their condition.  They helped us identify what works, what doesn’t and what could be better. We have published this as a best practice approach for the NHS locally.

In the next few months, we will be publishing a best practice approach to dysphagia, a condition which means eating, drinking or swallowing difficulties. People with a learning disability are more likely to have dysphagia than the general population. Dysphagia is linked to pneumonia and mortality reports tell us we need to do more in this area. Again we have worked with people with learning disabilities to shape this.

Following this we will be publishing guidance on sepsis and constipation. What we have learnt and continue to learn from the premature mortality review programme is helping us to know where we need to focus this work.

We have also been working with colleagues in the NHS England sepsis programme and are running a national workshop for health and social care professionals with a learning disability focus on the better prevention, detection and treatment of sepsis. There is some excellent clinical work happening on this and we want to make sure that it is applied across the country.

I blogged previously about the importance of annual health checks, one of the programmes my team is helping to deliver with regional colleagues and other key partners. Annual health checks are an important piece of work for health and social care colleagues as they can improve the health of people with a learning disability by spotting problems earlier.  We are working closely with GP practices to make sure more people get a health check every year. If you are having problems getting access to these then let us know.

I’ve included a range of links to helpful resources on this subject at the end of this blog.

The LeDeR report talks about making sure that if a person with a learning disability needs a reasonable adjustment that everyone involved in their care knows about it.  A reasonable adjustment can be things like making sure there is wheelchair access in hospitals, providing easy read appointment letters, giving someone a priority appointment if they find it difficult waiting in their GP surgery or hospital, longer appointments if someone needs more time with a doctor or nurse to make sure they understand the information they are given.

We are working with NHS Digital to bring in the use of a reasonable adjustment flag which is a note which can be added to a person’s computer health record, with their permission, so that other heath staff will know they need to do things differently. This flag can also include extra information for a person who needs more specific support and is linked to the person’s annual health check and their personal health action plan.

Setting up the LeDeR programme in practice is a challenging piece of work. It’s the first of its type in the world and like any new initiative it takes time to settle into practice. In the last year we have made sure that all clinical commissioning groups across England set up steering groups to work with their local premature mortality programme using the LeDeR methodology. These were all in place by December 2017.

We are working with our partners at the University of Bristol to embed the review process into all parts of the NHS.  The numbers in the recent report showed how many reviews had taken place up until November 2017. I can see progress being made since then with more reviews being completed and I’m looking forward to seeing it grow further in 2018 and beyond.

There’s clearly more work to do and that’s why we are investing more resources at a local level to better establish the programme; that’s an additional £1.4 million. We are also connecting best practice networks, forums such as the Royal College of Nursing’s urgent care network and others to support us with making sure the things we learn from reviews lead to changes in how things are done.

If you’re a health or social care professional reading this and you’re interested in helping to support the programme please seek out information in your local area on how you can become a reviewer and take part in local learning into action work. For any healthcare professionals interested in being trained to undertake reviews, please get in touch using the contact details for your area below:

LeDeR regional coordinators

Links to helpful resources


John Trevains

John Trevains is a Mental Health Nurse who joined the NHS England Learning Disability Programme in July. Prior to this he has held a range of posts across health and social care settings over a 22 year long career.

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