The preventable death of Oliver McGowan

For Paula McGowan, the LeDeR represented a golden opportunity to address the health inequalities that see nearly two decades wiped off the lives of vulnerable adults. Her son Oliver, who had high functioning autism, epilepsy, a mild learning disability, and cerebral palsy, died at Bristol’s Southmead Hospital aged 18 after suffering an allergic reaction to an antipsychotic drug. Oliver’s family has always insisted he should never have been given the drug, having informed professionals of Oliver's allergy prior to his death. McGowan, 53, who lives between Bristol and New South Wales, in Australia, believes the LeDeR is being undermined because staff, who act as reviewers, also have full-time jobs.

Her son’s LeDeR is surrounded by controversy. When the Bristol Clinical Commissioning Group (CCG) was asked whether Oliver's death was, on balance, potentially avoidable, it claimed not to be able to answer the question categorically.

McGowan has called on NHS England (NHSE) to take the LeDeR “far more seriously”. LeDeR “is about investigating potentially premature preventable deaths in people who unfortunately have a label of learning disability attached to them”, says McGowan. She said the LeDeR is one of the only tools to investigate where deaths are potentially avoidable, but stressed that inquiries must be “independent, open and honest” with families, allowing them to be “involved in every step of the journey”.

McGowan said the controversy surrounding her own son’s LeDeR has seen the investigation recalled and reopened.

Learning Disabilities Mortality Review (LeDeR)

Whilst most deaths involving people with learning disabilities may not prove as controversial as Oliver’s, a yawning chasm of around 16 years stands between the life expectancy of those with learning disabilities and those without. And in 2015, NHS England set up the LeDeR to address this long-standing inequality.

The LeDeR works by examining the deaths of all people with learning disabilities aged four and over through a three-stage review process. It begins with an initial inquiry into a death and, where lessons can be learnt, this is followed by multi-agency reviews and action plans.

But though it’s suggested the picture is improving, the lack of dedicated staffing seems to have taken a heavy toll on the LeDeR’s ability to complete its workload. It hit less than 10% of its target of completing initial reviews into 1,311 deaths of learning disabled people between July 2016 and November 2017.

LeDeR’s annual report, published last May, paints a worrying picture. Of the 103 reviews completed by November 2017, in 13% of cases the person’s health had been adversely affected by delays in care, gaps in services, organisational dysfunction, or neglect or abuse. 

LeDeR's funding could be better used elsewhere

Barnet Learning Disabilities community psychiatrist Dr Eileen McNamara, who works as a LeDeR reviewer, has reservations about the wisdom of the investment in the programme. She questions whether instead of reviewing deaths, the over £1.4m annual costs linked to the LeDeR would be better invested in helping people with learning disabilities live healthier lives. She said: “My own view is that resources may be better used to train and employ specialist learning disability nurses, who are ideally placed to help people with learning disabilities access mainstream health services.

“For example, procedures such as a blood test, an electrocardiogram (ECG) or a brain scan are not always straightforward. You might benefit from having practical support from a nurse to access these tests.”

Figures released last September showed the number of learning disability nurses in the NHS have hit a record low, plummeting by more than 40% in under a decade. A lack of new students could also exacerbate the existing staff shortage - a survey of higher education institutions in England found almost half have discussed discontinuing their learning disability nursing programmes.

Since the removal of funding for nursing education, the number of applicants to learning disability nursing degree courses has fallen, making the programmes less financially viable to run.

Premature deaths are linked to healthcare failures

McNamara maintains that clinical staff who work with the learning disabled are all too familiar with the reasons for premature deaths. Health inequalities that see people with learning disabilities dying sometimes decades before the rest of the population have been well documented long before the advent of the LeDeR.

Research suggests that failing to receive appropriate healthcare contributes to the premature deaths of learning disabled people. 2013 saw learning disability charity Mencap report that a third of all deaths involving people with learning disabilities are linked to a lack of good quality healthcare: a finding from research by academics at Bristol University, who compile and deliver the annual LeDeR report. The same year, the Confidential Inquiry into the premature deaths of people with learning disabilities (CIPOLD) found that 1,238 children and adults die across England every year due to healthcare failures. 

But for some people with learning disabilities and autism, carrying out routine health checks can present huge challenges, says McNamara. She said where someone cannot tolerate home visits or going to a GP’s surgery, no amount of reasonable adjustments will make a meaningful difference. Reasonable adjustments are required by the Equality Act 2010 to give people with learning disabilities equal access to health services. They can include getting longer slots for appointments or work to better prepare someone with a learning disability through, for example, reading stories about hospital or surgery visits.

McNamara added: “In a significant minority of patients, desensitisation work such as talking to a person about blood tests, offering longer appointments, completing social stories, and role play is just not enough to facilitate the desired investigation, especially in an emergency. Sometimes you might actually need to administer sedation or a general anaesthetic to facilitate a simple blood test and that’s a hugely difficult thing to organise. It involves complex decision making regarding risks and benefits.”

A University of Bristol LeDeR programme spokesperson said they were continuing to work hard to help people with learning disabilities “live longer and healthier lives”.

An NHS England spokesperson said they have invested £1.4m to support local teams to “ramp up” the number of LeDeR reviews and trained over 2,000 experts to carry them out. Thousands more reviews are now “in progress or have been completed with an update on progress expected later this year”, added the spokesperson.

Image: Oliver McGowan lies in a hospital bed after suffering from an allergic reaction to an antipsychotic medication.