How listening to people with learning disabilities can improve services

Sharon discusses NICE’s learning disabilities guideline and how organisations can work to improve local services

Sharon Jeffreys improvement manager for the Mental Health Intensive Support Team, NHS Improvement

In my former role as a lead commissioner on behalf of four Clinical Commissioning Groups (CCGs) in Lincolnshire, we achieved dramatic improvements to our services through our joint efforts with the provider and social care commissioners to listen to people in the area.

To get better insight into what our community needed we sent out letters to people who were using services to get their thoughts. We also set-up a number of events so they could meet face-to-face with representatives from local NHS groups, social services and care providers. The insights we gained helped us design services that currently meet the needs of the people who rely on them.

We looked at our resources and budgets as a whole, and used available national guidance and our local knowledge, to decide what the priorities should be across health and social care.

Our efforts were rewarded, hospital admissions reduced considerably. Only two admissions took place in the first 12 months of the new model and 100% of people referred to the new Community Home Assessment and Treatment Service are now contacted within a day and triaged within four hours.

This type of approach is what NICE is calling for in its guideline on improving service delivery for people with learning disabilities. It focuses on three aspects: how organisations can work together to commission the right services; the effective delivery of community services; and ensuring each person and their family are supported

The guideline advocates specialist support for children, young people and adults with learning disabilities and behaviour that challenges. It says this type of care – to ensure people’s needs are understood and met, could help prevent long stays in hospital and residential care.

Involving people with a lived experience of a learning disability in our local commissioning decisions was crucial to our success. Health and social care professionals should use the opportunity to pool resources and work collectively to support people and their families, ensuring they get the right care at the right time.

Sharon Jeffreys, former chief commissioning manager for Mental Health, Learning Disabilities and Autism, South West Lincolnshire Clinical Commissioning Group
Tags: learning disabilities, NICE guideline, impoving care, care commissioners

Blog comments

  • Real lives and challenges faced by people with intellectual disabilities in the medication use process.
    Medication use is the main therapeutic intervention in the population with intellectual/learning disabilities. I am a pharmacist who interviewed six people with intellectual disabilities to understand what they knew about medications and the medication use process. Two people had diabetes. My research showed that health care professionals do not always understand the complexity of the tasks they ask people with intellectual disabilities and / or their carers to do (1). Monitoring blood glucose levels, administering insulin, storing insulin safely, self administering medication from a monitored dosage system, monitoring dietary intake etc. are all challenges for a person with intellectual disabilities and diabetes. We need to listen to these ‘experts by experience’.
    Services providers and clinicians such as pharmacists may fail to adequately address communication issues and to understand the complex social networks on which people with intellectual disabilities often rely. When there is little understanding of the social networks and communication difficulties in the vulnerable population with intellectual disabilities, mainstream services can have difficulty in instituting successful treatment and management packages. Listening to ‘real life’ stories is important.

    (1). Flood, B. and Henman, M. C. (2015), Case study: hidden complexity of medicines use: information provided by a person with intellectual disability and diabetes to a pharmacist. Br J Learn Disabil, 43: 234-242. doi:10.1111/bld.12121

  • Hi Sharon, this sounds like a really important project. As a case study showing involvement in action, this film that we made for the Point of Care Foundation shows Leicester Partnership NHS Trust's improvement work using co-design with people with learning disabilities. Especially useful for anyone who hasn't had the opportunity to talk directly to people with learning disabilities about how they feel about the services they use, as it brings their perspective to life, but it also highlights what the Trust changed as a result: https://www.pointofcarefoundation.org.uk/resource/involving-people-learning-disabilities-leicestershire-partnership-nhs-trust/ Best of luck with the guideline.

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