People with a learning disability and autistic people have demonstrably higher rates of constipation than the general population. It is, in fact, one of the five most common long-term health conditions reported by this group. We were asked by NHSE South West to carry out a rapid review to understand constipation and its management in people with a learning disability and autistic people.
The Learning Disabilities Mortality Review (LeDeR) Programme Annual Report (2019) recommended a national clinical audit of adults and children with a learning disability admitted to hospital for a condition related to chronic constipation. The 2019 report found that constipation was one of the five most common long-term health conditions reported in completed reviews (23%) and a third of people were prescribed laxatives to treat constipation (33%). A full national audit could take up to 3 years and require large-scale engagement from multiple stakeholders. At a time when services were focussed on the COVID-19 pandemic response and subsequent recovery, this was not considered practical.
Significant evidence shows that the occurrence of constipation in people with a learning disability and autistic people is higher than in the general population. Consequently, we were asked by NHSE South West to carry out a review to understand constipation and its management in people with a learning disability and autistic people.
Our review had four parts:
- Literature review and critical appraisal of relevant evidence and research
- Data analysis to examine admission rates and trends
- User engagement with families that accessed constipation services for children and young people with a learning disability or autism (surveys were coproduced with parent-carer forums and 15 semi-structured interviews were carried out)
- Case studies to further explore areas of interest and enable shared learning
- Thematic review and options appraisal to review variation and common themes to draw meaningful conclusions and recommendations
A multidisciplinary team with expertise in areas including medicines optimisation, clinical effectiveness, quantitative and qualitative evaluation, clinical coding, and digital analytics and intelligence was involved in the review. We worked closely with a clinical reference group, which included representation from ERIC, The Children’s Bowel & Bladder Charity, and clinical experts identified by NHSE South West.
The rapid approach (6-months) we used, compared to a full national audit, allowed recommendations to be developed in a shorter timeframe. This meant quicker action aimed at reducing constipation in people with a learning disability and autistic people.
Key recommendations from our review:
- Further work should be carried out to understand the views and training needs of primary care practitioners including GPs
- Suitable materials to be developed for adolescents and children and young people with autistic spectrum conditions
- Data quality requires review and improvement
- Research to understand the role of virtual appointments in bowel and bladder health
- Structured Medication Reviews (SMRs) to be conducted for patients prescribed regular, or long-term, laxatives
- Further education and support materials for older children and adolescents with toileting issues
- Guidelines and support for clinicians to enable reasonable adjustment modifications to general population guidelines for the management of constipation
Our review puts patients first and is a step towards making health and care services better for people with a learning disability and autistic people.
- Academic publication of literature review and qualitative findings, in collaboration with the University of Plymouth
- Working group formed to take recommendations forward to implement improvements
I cannot say enough how influential this has been in my learning and development. I can say with certainty that those who consume the review will benefit greatly - Graham Carr, Head of Learning Disability & Autism Programme, NHS England & Improvement South West
SCW and NHSEI worked well together throughout, a good partnership where the customer felt confident in the approach taken. Honest and open communication. Good relationships were built - Kevin Elliott, Head of Learning Disability Nursing, NHS England and NHS Improvement
People with intellectual disability are susceptible to multimorbidity and polypharmacy. They are also less likely to have an active healthy lifestyle in the form of nourishment, adequate drinking, and exercise. The biological and social vulnerabilities independently or compounded with the iatrogenic influences lead to chronic issues of bowel problems, particularly constipation. This in turn predisposes to mental and physical disturbances contributing significantly to poor health outcomes, overprescribing of laxatives and premature mortality. The malignant impact of this matter needs to be brought out of the shadows and the work carried out by SCW is a step towards this. An active plan to discuss and reduce constipation in people with intellectual disability is essential in the quest for improved lives and reduced mortality - Professor Rohit Shankar MBE, FRCPsych Professor in Neuropsychiatry, Peninsula School of Medicine, University of Plymouth
Review of constipation in people with a learning disability and autistic people - NHS SCW Support and Transformation for Health and Care (scwcsu.nhs.uk)