Why the next steps with LeDeR are so important

Ten minutes after the latest Learning from Lives and Deaths – people with a learning disability and autistic people (LeDeR) report landed in my inbox, my son, who has a learning disability, had another breakthrough seizure from his previously well-controlled epilepsy.

It was the sixth in two weeks, with no obvious cause other than the vague catch-all ‘heat’. The same ‘heat’ had led us to dismiss my mum’s pneumonia and sepsis, with nearly devastating consequences the previous month.

While he recovered, I reviewed the topline LeDeR statistics, which show that preventable deaths among people with a learning disability remain twice as high as in the general population and three times as likely for people with severe or profound learning disabilities.

Preventable deaths are twice as high!

No one can be in any doubt that this is a horrific injustice, but these statements have been repeated so often over the past decade that they have almost lost their meaning.

Although there have been important developments and consensus on what needs to be done, slow and inconsistent implementation has failed to make any dent in reversing these devastating numbers.

This suggests there is a degree of ‘report fatigue’ with LeDeR statistics among the Government and key commissioning bodies. There has perhaps been a gradual normalisation of the abnormal, which has reduced the urgency needed to make it a sufficient priority in the face of competing policy demands.

Yet without these reports, we can’t begin to understand the scale of health inequalities facing people with learning disabilities and work to prevent this premature mortality.

As the foreword by the Staying Alive and Well Group says: “The numbers in this report are not just numbers for us. This is very real to us. This is about people. People dying too young: that could be us.”

While I read on about epilepsy being a leading cause of avoidable deaths, the young man beside me braced himself for another in the series of seizures that eventually came so thick and fast he couldn’t recover in between them. A reminder that anything at any time can happen to any of us. To a person, much loved, not a statistic.

Why are there so many preventable deaths?

Preventable deaths among people with a learning disability occur when opportunities to prevent, diagnose or treat illness are missed. This can be a combination of diagnostic overshadowing, insufficient staff training, inequalities in screening programmes and a failure to make reasonable adjustments.

Another major issue is that people with a learning disability may communicate pain or illness differently, and signs of deterioration can be overlooked. They may also have multiple overlapping complex conditions that often do not receive the coordinated care they so desperately need.

Medics rely on their instincts, honed through experience and training. The A&E consultants, for example, who met us on arrival could, at a glance, recognise the looming crisis my son faced if his seizures didn’t stop and acted accordingly. They could also see when their interventions worked, and they could safely pass him on to other teams for more specialised medical workups to find a cause.

This is when it gets trickier. Once the usual suspects have been ruled out, instincts give way to guesswork. A workup like this can be hard enough for all patients, but for someone with a learning disability, there is the added complexity of them not being able to tell you how they are feeling.

It is also when things get missed. We still don’t know what caused so many unusual seizures. It might come to light as more symptoms present, or it might not. Also, as fantastic as all the NHS staff we encountered were that day, we’ve had other visits where our attempts to advocate have become unnecessarily adversarial.

What if, on the next visit, our concerns are not taken as seriously? What if what worked this time does not work next time? This is why what happens next with the LeDeR programme really matters.

What are the core recommendations from LeDeR?

The LeDeR programme has repeatedly recommended that clinicians listen carefully to families and carers, who can provide vital information that may not be apparent during a brief clinical assessment.

It has also recommended that people with learning disabilities who have two or more long-term conditions (related to either physical or mental health) should have a local, named health care coordinator.

Learning disability nurses, for instance, play a crucial role in implementing many of LeDeR’s recommendations and in bridging the gap between people with a learning disability, their families, and the wider healthcare system.

Other key recommendations are:

• Making reasonable adjustments routine
• Improving recognition of illness and avoiding diagnostic overshadowing
• Improving communication with people with learning disabilities such as Easy Read materials
• Delivering high-quality annual health checks
• Improving workforce training.

What happens next?

This latest LeDeR report will be the final one in its current form, as the Government has announced that the programme will be integrated into a new GP-extracted dataset covering learning disability, autism and ADHD.

The programme has been heavily criticised in the past for its lack of meaningful action and for similar recommendations recurring year after year, indicating that lessons are not consistently applied in practice.

But it is now more important than ever that the knowledge gained over the past 11 years continues to inform efforts to reduce avoidable deaths, rather than be lost when the programme closes.

What can healthcare professionals do?

Some recommendations require national policy changes that go beyond day-to-day practice to address the structural barriers faced by people with a learning disability. These include funding to address workforce shortages, investment in preventive healthcare and annual health checks, and access to social care.

But there is much that healthcare professionals and those working in learning disability services can do and have already begun to do. This includes:

• Making reasonable adjustments during consultations.
• Using accessible communication and Easy Read materials.
• Taking concerns from families and paid carers seriously.
• Avoiding diagnostic overshadowing by thoroughly investigating symptoms.
• Recognising signs of deterioration early.
• Involving people with a learning disability in decisions about their care.
• Completing mandatory training on learning disability and autism.

Over the next couple of months, we will examine these areas in more depth and the practical ways professionals can have an immediate impact on the quality and safety of care.

Because we owe it to every single one of those families of people with learning disabilities who died due to poor or indifferent care, and we owe it to all those families yet to come.

There is much to do. Let’s get to work.

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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