‘I don’t think Erica would still be alive without a specialist learning disability doctor’ | Saba Salman

The UK’s first physician for those with complex needs could help save lives and reduce health inequalities

The first doctor specialising in profound and multiple learning disabilities in the UK is set to be recruited later this year. Hull clinical commissioning group (CCG) took the decision to employ a specialist PMLD doctor to support adults with complex needs after the condition of a patient, Erica Carlin, improved dramatically following the care she had received for serious digestive and bowel problems from a palliative care doctor trained in learning disabilities.

Three years ago, doctors had told Carlin’s family to prepare for her death. They said they could no longer treat the then 34-year-old, who has epilepsy and profound multiple learning disabilities. Today her health is stable. She lives in residential care in Hull near her family and enjoys trips to the local park.

Her health was transformed, say her family and campaigners, because the palliative care doctor she was referred to had happened to train in a medical specialism called “intellectual disability” in Holland. There, medics are uniquely taught to put patients with learning disabilities at the centre of their care. As a result, the doctor was able to coordinate the professionals involved in Carlin’s care, including neurologists, bowel consultants, the GP and learning disability nurses, to ensure they provided holistic support.

Carlin’s mother, Jeanne, says: “I don’t think Erica would still be with us if someone hadn’t looked at all of those parts that make up a person. With one doctor liaising with everyone, we didn’t have to keep trying to get hold of consultants. The doctor suggested something and we’d start the prescription immediately rather than waiting for appointments.”

Carlin’s story proves the need for a network of specialist physicians, according to a group of experts made up of parents of people with learning disabilities, learning disabled people themselves, (involved through support charities Respond and Stay Up Late) a psychiatrist, nurses, and health agencies such as NHS England and Public Health England.

The group’s work is timely because of a growing focus on the entrenched health inequalities faced by learning disabled people. Autism and learning disability are priorities in the NHS long-term plan, and a recent NHS-commissioned review of mortality rates shows learning disabled people die earlier and are more likely to die in hospital than the general population. Recent inquests into the deaths of people including Richard Handley, Joe Ulleri and Oliver McGowan reflect the inequality.

Research shows that GPs lack confidence with learning-disabled patients and that most get less than a day of training. Learning disability nurses support appropriate treatment and care plans, but figures from NHS Digital show that the number of learning disability nurses has fallen from 5,368 to 3,247 – a staggering 40% – between May 2010 and April 2018.

In Hull, the CCG is collaborating with families on the job description to recruit the PMLD specialist, which is a two year pilot. “They’ve told us that people who have learning disabilities and multiple health needs struggle to navigate the care system and we recognise that this may mean patients haven’t always received the care they needed in the most coordinated way,” says Melanie Bradbury, the CCG’s strategic lead for mental health and learning disabilities commissioning.

Victoria Smith, who has a learning disability and works at the charity Stay Up Late, welcomes the idea of specialist doctors as she worries about misdiagnoses “because someone might have a communication problem”. “I pulled a ligament in my ankle, they gave me some leaflets and sent me home. They didn’t explain it to me … it would be good if you had the same person to speak with so you can build a relationship,” she says.

Oliver McGowan, 18, who had epilepsy, cerebral palsy and autism, died at Southmead hospital in Bristol in 2016 after being given antipsychotic medication. He and his parents had warned doctors that the drug might harm him. Oliver’s mother, Paula, has campaigned for the government to introduce mandatory learning disability and autism training for health and social care staff. She supports the idea of having specialist doctors for people with learning disabilities: “It could mean that when someone presents with challenging behaviour this isn’t necessarily seen as a psychiatric disorder but could be the result of a medical condition,” says McCowan.

But she warns that the specialist will only make a difference if they call the shots. They “need to be suitably empowered in all clinical settings and available 24/7 – they’ve got to have the casting vote”.

Critics, including learning disability nurses, question the need for a new specialty and suggest nursing needs better funding and recognition. Daniel Marsden, senior lecturer in learning disability nursing at Kingston University, warns that there could be recruitment problems for specialist doctors, given the extra training required. However, he admits the current system “struggles to coordinate care across specialisms” and that specialist doctors could work well alongside nurses: “I don’t think there’s necessarily duplication, although the roles do intersect.”

Responding to concerns, the former health minister, Norman Lamb, a Liberal Democrat MP, who convened the expert group, stresses that specialists would “complement and support” learning disability nurses and “challenge a culture that too often treats people with learning disability as second-class citizens”. Lamb adds: “A new specialty would lead to a much needed focus on the complex interaction between physical health conditions and learning disability, which too often are misunderstood or neglected.”

Lamb’s sister, retired GP Kirsten Lamb, is coordinating research for the expert group on a specialist doctor role. She believes it is “a possible solution to part of the inequality problem facing people with learning disabilities”. She explains that a specialist would lead the care of someone with complex needs in a multi-disciplinary team similar to those in geriatric care or community paediatrics. “We should have the same approach in learning disability,” she says.

As for practical challenges, Kirsten Lamb believes it is not yet clear if the role would require new courses in medical schools. She says the expert group will need to closely watch how the Hull model progresses and evaluate its impact.

NHS England says it will look at the research when it is published. “NHS England will consider this proposal as part of a larger body of work to support the care and treatment of people with a learning disability,” says an NHS spokesman.

Back in Hull, Jeanne Carlin remains resolute: “In terms of stopping the premature deaths of people with profound and multiple learning disabilities, this specialist is the answer.”


Saba Salman

The GuardianTramp

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