Hi Mandy, can you tell us more about yourself and your role?
I have worked as a Community Learning Disability Nurse and counsellor for people with a learning disability since 1995.
In the last few years, my role has involved completing mortality reviews for the NHS service improvement programme LeDeR (Learning Disability Mortality Review Programme), as well as leading a project to support health initiatives and improved health outcomes for adults with a learning disability in Primary Care.
What are some of the health inequalities affecting people with a learning disability?
People with learning disabilities face serious health inequalities and have lower life expectancy, dying on average 25 years sooner and often from treatable and avoidable conditions.
They experience higher levels of physical ill health and often present with complex and multiple health conditions, including:
hearing and visual impairments
early onset dementia
People with a learning disability were also found to be 4.5 times more likely to die from Covid-19.
They are most likely to die from respiratory related conditions but also less likely to access immunisation screening programmes, including flu. Access to National cancer screening programmes is equally poor.
What are the barriers and challenges to improving outcomes?
There are number of challenges when making improvements in this area. Below are a few key things to consider when seeking to design a patient-centred experience for people with learning disabilities.
People with a learning disability often experience communication difficulties, which limit their ability to express pain, discomfort or feelings of being unwell. This can lead to delays or problems with diagnosis or treatment, identifying their needs or providing appropriate care.
Medical appointments also often go out in written format, which is difficult for people who have limited reading ability, and this might result in missed appointments.
People with a learning disability might struggle to engage with a particular test or medical intervention due to lack of understanding and fear, all of which have the potential to create additional barriers and cause delays in diagnosis and treatment.
There can be confusion about mental capacity and consent amongst medical professionals.
Health concerns are also sometimes attributed to the person’s learning disability and behaviour, and not fully investigated.
Attending busy GP practices or vaccination centres might prove problematic due to long waits, high noise levels and lots of people.
“My son would not have coped going to a hub. Having the vaccine at home by someone who knew how to talk to him was brilliant.” Parent.
What can GPs practices do to improve health outcomes for people with a learning disability?
Make sure your records are up to date
Identification of people with a learning disability within each GP practice is key as this enables the right people to be targeted for specific learning disability initiatives, like the Learning Disability Annual Health Check or immunisations. If the patient requires any “reasonable adjustments”, such as easy read correspondence or longer appointments, this information can be flagged on the patient’s medical records. Sharing the register with Adult Social Care and regular cross-referencing data will help to support accuracy.
Equip yourself with the right knowledge and networks
People with a learning disability are often a very small percentage of a GP practice caseload and staff might have limited experience and understanding of their needs. Learning Disability Awareness training, as well as good access and close working relationships with the local Learning Disability Team, are essential to support person-centred care. Learning Disability Nurses are ideally placed to work alongside Primary Care and provide on-going guidance, help and support.
“The learning disability liaison role has been so helpful particularly at a time when inequities for people with LD are having a spotlight shone upon them. Having someone who understands the complexities involved and can offer advice and training for our primary care teams is invaluable and has really helped to increase the physical health checks in this population and ensure good COVID vaccine uptake.” Salford GP.
Build trust and make adjustments
Building a relationship of trust, flexibility and giving a person with a learning disability time to express their concerns, absorb information or ask questions in a way that works for them is essential. Using accessible information to support communication, demonstration of equipment, repeat or longer appointments, availability of home visits and application of Mental Capacity Act Principles can help to improve understanding and engagement, develop trust and significantly support effective care and treatment.
(Above photo: Sean Dempsey receiving his Covid vaccination)
“Mandy came to my house. It helped that I already knew her. She made me feel more confident and helped me feel calm, just by being herself. It was brilliant, it will keep me safe.” Sean Dempsey.
What needs to happen nationally to improve health outcomes for people with a learning disability?
Mandatory Learning Disability Awareness Training has literally just been launched for all Health and Social Care staff (Oliver McGowan Mandatory Training in Learning Disability and Autism) which is huge progress.
In addition, I would like to see:
Investment in the recruitment, training and employment of more learning disability nurses
Recruitment of Learning Disability Nurses in general medical settings e.g., hospitals and Primary Care
Investment in programmes/initiatives to support application of reasonable adjustments in specific areas of care e.g., dedicated screening services for those that cannot access mainstream services (breast cancer screening, cervical cancer screening).
What is the most rewarding part of your work?
There is no greater feeling than seeing a person with a learning disability access a medical intervention/treatment that could improve their well-being or potentially save their life.
Especially when this was initially ruled out due to concerns about complexity or engagement.
It is extremely rewarding to know that each of these successes help to change and positively shape the opinions and practice of medical professionals into the future.
Do you have a patient safety story to share?
Are you a patient, relative or member of staff interested in improving outcomes for people with a learning disability?
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