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Wearside study could be key to longer lives for patients with learning disabilities

A patient receiving Point of Care Testing.
A patient receiving Point of Care Testing.

The future health of people with learning disabilities could be improved if more was made of technology used in the place they seek their care.

People with learning disabilities have a significantly lower life expectancy than the general population and are at higher risk of certain diseases including diabetes, hearing loss, cardiovascular disease and obesity.

Now a North East pilot study, carried out by researchers at the University of Sunderland on behalf of NHS England, has looked at whether the use of Point of Care Testing (POCT) could improve their care and treatment.

With the help of patients in Fulwell and Washington, the findings were put to the test and are now set to help others.

POCT typically involves blood and/or urine testing. and usually uses portable and handheld instruments, which are less invasive than traditional methods, such as injections.

They get accurate results quickly, which can then be presented to the patient, often on the same day.

Principal lecturer Karen Giles and Ashley Murphy, learning disability and autism primary care programme manager.

Principal lecturer Karen Giles and Ashley Murphy, learning disability and autism primary care programme manager.

Hearing screening can also be completed within minutes using automatic handheld machines, without any response needed from the person taking part.

But there are growing concerns about the health of those with learning disabilities, with one nurse in the study describing it as being at “a different crisis level”.

While the North East and Cumbria are delivering the national annual Learning Disability Health Check above the national average, improvement is needed.

The study found a cultural apathy towards hearing loss and understanding of symptoms and recognised anxieties about health interventions, in particular needles, which prevented this ‘vulnerable’ group from seeking treatment.

The team of researchers evaluated the experiences of those at the centre of the tests, including Clinical Commissioning Groups (CCG), NHS England, and learning disability national leads, audiologists, GPs and nurses with a special interest in learning disability.

The study found a general lack of awareness of POCT, as well as a lack of knowledge about its availability and potential, but that there was a strong case to use it.

It was also felt to be less stressful for both service users as well as clinicians and could provide fresh evidence as part of health checking.

Following the research findings, a series of pop-up clinics resource centres at Fulwell and Washington, were with the Health Promotion Team, which works with such patients.

The clinics were attended by 20 volunteer adults who took part in a briefing session which was followed by a health screening a week later in a relaxed environment with people that they knew, with feedback given straight away.

Karen Giles. lead researcher and principal lecturer at the university’s Faculty of Health Sciences and Wellbeing, said: “One lady in her 40s had never ever had her bloods tested before as she ‘hates blood tests’.

"She allowed us to do the finger prick test in the preparation session and was first in the queue at the pop up clinic.

“This highlights that done correctly POCT offers the delivery of the right care in the right place at the right time.”

Ashley Murphy, learning disability and autism primary care programme manager for Sunderland CCG and Northumberland Tyne and Wear NHS Trust, worked alongside the university and organised the pop-up clinics.

She said: “It’s vital that patients have access to the right treatment, and our pop-up clinic was the appropriate setting as we were treating people who had the capacity to engage with staff, they were really positive and excited about it which was fantastic.

“More work is needed to be done in this area, but a positive start has been made to shine a light on this important area of improving healthcare treatment in a non-medicalised environment for those with learning disabilities.”

A practical guide for anyone looking to implement using point of care testing for people with a learning disability has been created to help others.