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TThe first physician specializing in deep and multiple learning disabilities in the UK is expected to be recruited later this year. The Hull Clinical Commissioning Group (GCC) has made the decision to call on a PML specialist physician to help adults with complex needs after a patient's condition, Erica Carlin She was greatly improved after the care she had received for serious digestive and intestinal problems related to palliative care. doctor trained in learning disorders.
Three years ago, doctors had asked Carlin's family to prepare for his death. They said that they could no longer look after the 34-year-old, who was suffering from epilepsy and multiple learning disabilities. Today, his health is stable. She lives in an accommodation center in Hull, near her family, and enjoys doing trips to the local park.
His health has been transformed, say his family and his activists, because the palliative care doctor who was referred to him had trained in a medical specialty called "intellectual disability" in Holland. In this country, doctors are taught to put patients with learning disabilities at the center of their care. As a result, the doctor was able to coordinate professionals involved in Carlin's care, including neurologists, intestinal consultants, general practitioners and mentally disabled nurses, to ensure overall support.
Jeanne, Carlin's mother, said, "I do not think Erica would always be with us if someone had not looked at all the parts that make up a person. With a doctor in liaison with everyone, we did not have to keep looking for consultants. The doctor suggested something and we would start prescribing immediately rather than waiting for the appointments.
The story of Carlin proves the need for a network of specialist physicians, according to a group of experts made up of parents of people with learning disabilities, learners themselves, (involved in supporting 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 the growing recognition of persistent health inequities faced by people with intellectual disabilities. Autism and learning disabilities are priorities in the NHS long-term plan, and a recent review of mortality rates commissioned by the NHS shows that people with intellectual disabilities die earlier and are more likely to die in the hospital than the general population. Recent inquiries into the deaths of people, including Richard Handley, Joe Ulleri and Oliver McGowan, reflect this inequality.
Research shows that general practitioners lack self-confidence with patients with learning disabilities and that most have less than a day of training. Nurses with learning difficulties support appropriate treatment and care plans, but NHS Digital figures show that the number of nurses with learning difficulties has increased from 5,368 to 3,247 – an impressive 40% – between May 2010 and April 2018.
In Hull, CCG is working with families on the job description to recruit the AMD specialist, a two-year pilot project. "They told us that people with learning disabilities and multiple health needs are struggling to navigate the health care system and we realize that this can mean that patients do not always receive the care they have. need the most coordinated way possible, "said Melanie Bradbury. the CCG strategic lead for the implementation of mental health and learning disabilities.
Victoria Smith, who has learning difficulties and works for the Charity Stay Up Late, welcomes the idea of medical specialists because she worries about misdiagnosis "because someone might have a communication problem. " "I pulled a ligament at the ankle, they gave me leaflets and sent me home." They did not explain that to me … It would be nice if you could talk to the same person to build a relationship, "she says.
Oliver McGowan, 18, suffering from epilepsy, cerebral palsy and autism, died at Southmead Hospital in Bristol in 2016 after receiving an antipsychotic. He and his parents warned the doctors that the drug could hurt him. Oliver's mother, Paula, has been campaigning for the government to put in place mandatory training on learning and autism disorders for health and safety staff. social services. She supports the idea of using medical specialists for people with learning disabilities: "It could mean that when a child exhibits difficult behavior, it is not necessarily considered a psychiatric disorder, but could to be the result of a health problem, "says McCowan.
But she warns that the specialist will make the difference if he decides to take the lead. They "must be sufficiently autonomous in all clinical contexts and available 24 hours a day, 7 days a week – they must have the casting vote".
Critics, including nurses with learning disabilities, question the need for a new specialty and suggest that nursing needs better funding and better practice. recognition. Daniel Marsden, a senior lecturer in nursing sciences at the University of Kingston, warns that there could be recruitment problems for medical specialists, given the additional training required. However, he acknowledges that the current system "has difficulty in coordinating care between different specialties" and that the specialist doctors could work well alongside the nurses: "I do not think that there is necessarily duplication, even if the roles overlap. "
Responding to the concerns expressed, former Health Minister Norman Lamb, a Liberal Democrat, who convened the panel of experts, emphasized that the specialists would "supplement and support" nurses with intellectual disabilities and " would defy a culture that too often considers people with clbad-conscious learning disabilities. " Lamb adds: "A new specialty would lead to focusing on the complex interplay between physical health problems and learning disabilities, which are all too often misunderstood or overlooked."
Lamb's sister, retired general practitioner Kirsten Lamb, coordinates research for the expert panel on a specialist's role. She thinks it is "a possible solution to a part of the problem of inequality that people with learning disabilities face". She explains that a specialist would direct the care of a person with complex needs into a multidisciplinary team similar to that of geriatric care or community pediatrics. "We should have the same approach to learning disabilities," she says.
As for practical challenges, Kirsten Lamb thinks it's not yet clear whether this role would require new courses in medical schools. According to her, the group of experts will have to closely monitor the evolution of the Hull model and badess its impact.
NHS England says it will look at research when it will be published. "NHS England will see this proposal as part of a larger package of work to support the care and treatment of people with learning disabilities," said an NHS spokesman.
Back in Hull, Jeanne Carlin remains resolute: "In terms of ending premature deaths of people with profound and multiple learning disabilities, this specialist is the solution."
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