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Breaking down healthcare barriers for people with learning disabilities

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Published on 20 September 2018

Point of Care Testing (POCT)
Point of Care Testing (POCT)

The health prospects of people with learning disabilities could be improved if more use was made of medical testing technology which is carried out close to where the patient is receiving care, a North East study has found.

The study, conducted by researchers at the University of Sunderland on behalf of NHS England, evaluated whether the use of Point of Care Testing (POCT) could improve access to healthcare and treatment for people with a learning disability. 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.

POCT is medical testing at or near the site of a patient by specially trained healthcare professionals, typically involving blood and/or urine testing. The goal is to collect the specimen, usually through the use of advanced portable and handheld instruments, which are less invasive than traditional methods such as intravenous injections – and get accurate results in a very short period of time that can be presented to the patient quickly, and often on the same day as their appointment.

Hearing screening can also be completed quickly and successfully using POCT via automatic handheld machines. Information about the outer, middle and inner ear can be collected within a couple of minutes, without any response needed from the person taking part.

There are growing concerns about the health of those with learning disabilities described by one nurse in the study as being at “a different crisis level”. Whilst the North East and Cumbria are delivering the national annual Learning Disability Health Check above the national rate, improvement is still needed to maximise its potential. There is cultural apathy towards hearing loss, understanding of their symptoms and recognised anxieties about health interventions, in particular needle tests, which prevented this ‘vulnerable’ group from seeking treatment.

The team of University researchers evaluated the experiences of key stakeholders using POCT 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, and lack of knowledge about its availability and potential. However, all stakeholders believed there was a strong case to adopt POCT, particularly in primary care, to support access to diagnostics for people with learning disabilities. It was also felt to be less stressful for both service users as well as clinicians and could provide fresh objective evidence as part of health checking.

Lead researcher Karen Giles Principal Lecturer at the University’s Faculty of Health Sciences and Wellbeing, commented: “The main aim, and benefit of POCT is to bring the test conveniently and immediately to the patient. This increases the likelihood of getting the results quicker, enabling clinicians to support the timely diagnosis, monitoring and treatment of patients.

“Our study, a collaborative initiative across health, social care and higher education, has generated key strategies that can inform a best practice model for POCT to be adopted for people with learning disabilities, and has identified specific adjustments that would be needed to run successfully. A key finding was the potential positive role of POCT in supporting people who are anxious about needles.

“There are some barriers identified including cost and practical aspects of adopting POCT, but its value to this complex care setting cannot be underestimated.”

Dr Lynzee McShea, a Senior Clinical Scientist in Audiology at City Hospitals Sunderland NHS Foundation Trust was the Audiology lead for this project. She explained: “Around 40% of all adults with learning disabilities also have hearing loss, but much of this is undiagnosed and untreated. A number of barriers exist around referral to Audiology services and misconceptions about the testing and treatments available. It is assumed that people with learning disabilities cannot have their hearing tested or will not benefit from wearing hearing aids but this is not the case. Inclusion of hearing screening in the POCT project aims to raise awareness and increase knowledge, leading to better outcomes.”

Following the research findings, a series of pop-up clinics in local resource centres at Fulwell and Washington, were run in collaboration with the Health Promotion Team, which promotes health and wellbeing for people with a learning disability. The clinics were attended by 20 volunteer adults with a learning disability, who took part in a briefing session held at the centres they attend, followed by a health screening a week later done in a relaxed environment with people that they knew, and getting feedback from the screening straight away.

Karen explained 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.”

Dr McShea, added: “It has been fantastic to see the inclusion of hearing screening in the pop-up clinics to show how quick and easy assessment can be. Every single person who attended had their hearing screened, and we found a range of conditions such as perforated eardrums, infections and possible hearing loss, which had not been detected prior.”

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 was clear that our organisations had a lot skills that we could bring together on this project. The University had all of the latest equipment, which supported training needs for our non-clinical staff involved in learning disabilities, who could then participate in POCT.

“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.”

An NHS England spokesperson said: “NHS England Chief Scientific Office is pleased to have partnered with the University of Sunderland to deliver this unique approach to improving access to health care and treatment for people with learning disabilities. We are happy that the initial work led by Dr Martin Myers MBE, on proposed models to deliver point of care testing have been adapted and enhanced by the University Of Sunderland in this ground breaking pilot which has had such a significant impact on the ability of health care professionals to support diagnostic testing for the learning disabled.  The Chief Scientific Office endorses any innovation that is able to reduce the health inequalities experienced by those with learning disabilities.”

A practical guide for anyone looking to implement using point of care testing for people with a learning disability, has now been generated from the research findings and tested by the pop-up clinics.

Further studies are recommended to explore who is responsible for its availability and adoption, particularly in primary care.

Notes to editors


(Learning disability nurse) “…We have almost a different crisis level, don’t we? [for adults with learning disabilities] We kind of…  It’s much, much higher.  It’s like we’re much more tolerant of all the symptoms”

(Specialist GP) “…this guy won’t even sit still to be examined. So this potentially offers a huge solution to that, doesn’t it?  If there’s something that’s less invasive, and that can give us the answers we need..”

(Commissioner) “…Instead of three months, four months down the line, you're still trying to work around desensitisation for that individual to get the blood test - actually you could come to a much quicker diagnosis in terms of is there anything afoot here.  In terms of that individual.  So, for them, it could be their life, basically.  That's what it could mean..”

(GP/liaison nurse)“We just have a lot of difficulty, especially around getting bloods… it's still a big issue because of needle...  Needle-phobia”

(Learning disability Nurse)“….people that have had really negative experiences and that...  That contributes to their phobia and their presentation now… And you're trying to address what's happened in the past and...  And almost take it back to scratch and start again.  But if this was available, there isn't any need to hold somebody down to put a sticker on their arm, really..”

 (Learning disability nurse)  “…and I don’t know how many times we’ve had to get to a crisis point where somebody’s behaviour or mental health has completely broken down, where they’ll go, okay, we need to sedate this person now to get some bloods or whatever.  There’s been…  It just gets to that point where…  We need a point way before that…”

“..We tested his hearing - the carers thought he had selective hearing.  He can hear when he wants to, all the usual things we hear.  We tested his hearing, which people didn't think we would be able to do because he had Down's syndrome and autism. But found he had a profound hearing loss, so he couldn't hear speech at all.  And it shocked me to think his hearing is so bad, and yet the carers thought he could hear perfectly..”

The above quote also highlights a possibility of further assumptions made that the service users will not tolerate screening tests or any help/treatment provided if a problem is found. This relates back to the cultural value placed on the health of people with learning disability that emerges as a barrier to screening tests in numerous other ways. 

 ABOUT Point of Care Testing (POCT)

-      POCT is also known as near patient testing or in vitro diagnostics (IVD).

-      POCT is the ability to undertake certain laboratory tests near or at the point of the patient.

-      POCT tests can be biochemistry, haematology or molecular based.

-      POCT technology is also available for other diagnostic or screening purposes including hearing loss assessment, and can be used by non-scientists.

-      Emerging new technologies and further miniaturization developments are enabling an increased range of testing, further reducing the degree of invasiveness for sampling with a greater number of devices offering alternatives to venipuncture.

-      Benefits include faster clinical decision - impacting on length of stay, improved self-care management.

 To view the Guide click here