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'What we need to do as health professionals is listen to the caregivers more'

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Jim Blair learned the best way to understand the needs of those with learning disabilities is to talk with them

Jim Blair

It is a common notion that treatment advice and diagnosis should come from the health professional and be executed by the caregiver to the patient. It is one, however, that Jim Blair has found less effective for patients with learning disabilities.

Mr Blair is currently Great Ormond Street Hospital’s first consultant nurse for learning disabilities. Alongside that, he is also associate professor of intellectual disabilities at Kingston and St George’s Universities and is health adviser at the British Institute of Learning Disabilities.

“What we need to do as health professionals is listen to the caregivers more and believe in their lived experiences with patients. If we support them, they will be able to enhance the delivery of care toward these patients that we all wish to see improve and evolve,” he says.

These nurse educators, Mr Blair notes, should be engaged with education in action, which means real-time clinical learning on the job.

This does not only entail listening to the caregivers’ experiences, but learning from the patient and their family what the best course of treatment could be. This way, Mr Blair says, we can “enhance the care and treatment for people with learning disabilities and their families, and meet the needs of these patients directly”.

An example of such care includes making reasonable adjustments tailored to a person’s needs. Mr Blair did this first at St George’s Hospital and more recently at Great Ormond Street. A key way to do it is via an alert system, which enables staff to identify individuals with learning disabilities before they come to the hospital so the caregivers can assess how to best meet their needs.

Patients can carry a “hospital passport”, which states their name and preferred communication method, and whether it includes signs, symbols, pictures or a combination of all three. The passport also lists other healthcare needs, such as environmental changes like dimmer lighting or sound reduction, which may be how the person expresses/experiences pain.

“Not only must we learn how to best give care to people with learning disabilities, we must give health professionals the skills, knowledge and correct manner, attitudes and values regarding how everybody’s life has worth,” Mr Blair says.

“We must give health professionals the skills, knowledge and correct manner, attitudes and values regarding how everybody’s life has worth”

He wants to celebrate everyone’s unique skills and abilities, as well as the preparedness of health professionals and staff to work with those with learning disabilities. He firmly believes “a healthcare system is judged by how they look after their most vulnerable patients,” and has more ideas about how NHS trusts and private sector providers can better look after these patients.

“We must be wary of diagnostic overshadowing,” Mr Blair notes, “and look to see the person instead of the disability. Often we believe a behaviour change that occurs in a person with a disability is a result of the disability when, in fact, it could have a biological or health-related reason behind it.”

He feels service users with learning disabilities often lack the treatment they require because care providers are less educated and less prepared to treat them. This results in many social and health injustices for these patients. He believes it is “about understanding the brilliance of people rather than seeing the disability and panicking about what you could do wrong.”

Mr Blair is confident in the future of treatment for patients with learning disabilities. He believes Health Education England should come together with the Care Quality Commission and other regulatory bodies to compile a clear educational strategy for treating patients with learning disabilities that would be suitable for all health professionals.

“What we need now more than ever are creative, dynamic leaders in this time of fiscal challenges. These leaders can help shape an effective and responsive, care-oriented health system for the future.

“Nurses can play a central part in this, alongside other health professionals. We need to succeed in doing what is necessary for each person to involve themselves and their carers in their care journey.”

Emma Bleznak

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