Our new report provides a summary of findings and recommendations from an evidence and qualitative review conducted to understand constipation and its management in people with a learning disability and autistic people.
- There is significant and consistent evidence that the prevalence of constipation in people with a learning disability and autistic people is higher than amongst the general population and that there appears to be a correlation with condition severity and constipation, physical inactivity and constipation, but not with age and constipation, which is seen in the general population.
- Whilst the data should be interpreted with caution, National Commissioning Data Repository (NCDR) activity data suggest that people with a learning disability and autistic people are overrepresented in acute admissions for constipation when compared with the general population.
- There are numerous recent, methodologically robust guidelines that have been developed for the identification and management of constipation of both children and young people, and adults in the general population, however fewer guidelines have been produced specifically for those with a learning disability and autistic people.
- Despite the availability of clear, robust guidelines, our research found that patient experience of accessing appropriate support is variable.
- GPs were cited most commonly as the service accessed for advice on managing constipation, and difficulty in accessing specialist services was noted as well as a view that services do not always seem prepared to effectively support children with a learning disability and autistic children.
- Families seeking support for constipation often struggle to be heard and believed by health professionals, feeling that they are routinely not taken seriously, and their concerns ignored. Some feel they have to constantly push to be believed by healthcare professionals when they talk about their child, their experiences and their concerns.
Further work should be carried out to understand the views and training needs of primary care practitioners including GPs. The experience of management of constipation at GP level was highlighted repeatedly throughout the review. Most survey respondents (86%) had sought advice from their GP and the GP was the most popular place to have sought help and support from. It is therefore important that the GP voice is captured and considered in any further quality improvement initiatives going forward.
Suitable materials to be developed for adolescents and children and young people with Autistic Spectrum Condition (ASC). Feedback gathered suggests that the resources available are aimed at either young children or adults with a learning disability, however, there seems to be a lack of resources available that are accessible for older children and adolescents, or that take into account the particular communication needs of young people with ASC.
Data quality requires review and improvement. Further work is required to understand and manage acute admissions for constipation. Data suggests that 75% of admissions for constipation are non-elective and further work is required to establish how many of these are primarily to treat constipation as the primary condition. This work would need to focus on the variation in clinical coding sequencing utilised on discharge and necessitate expert coding knowledge to perform a drill-down of coding between providers of care.
Research to understand the role of virtual appointments in bowel and bladder health. As services move into the ‘new normal’ following the COVID-19 pandemic and system recovery pressures mount, it is important if virtual appointments are to continue, that this is informed by empirical evidence and meet the needs of the individuals involved. This will be particularly key in the cohort of people with a learning disability and autistic people.
Structured Medication Reviews (SMRvs) to be conducted for patients prescribed regular, or long-term, laxatives. The evidence review highlighted that inappropriate laxative prescribing and over-prescribing of medicines that can contribute to constipation is a causal factor in the poorer outcomes for people with a learning disability and autistic people. It is therefore likely to be beneficial for GP Practice clinical pharmacists to conduct an SMRv with patients/carers. The SMRv will provide an opportunity to identify possible deprescribing, offer support around appropriate medication use and consider interventions that offer holistic medicines understanding.
Further education and support materials for schools with older children and adolescents with toileting issues. Further work is required to understand the educational requirements of the school teams supporting older children and adolescents with toileting issues, this should include remote training, education resources and access to support services.
Guidelines and support for clinicians to enable reasonable adjustment modifications to general population guidelines for the management of constipation. It is important that the implementation of existing best practice is optimised to ensure national guidance is followed. Further training and resources are needed to help tailor the approach for people with a learning disability and autistic people to improve outcomes, including accompanying tools to help develop bespoke care plans. Medical approaches alone can treat a single episode of constipation, however without acquiring toileting skills, an individual is likely to become constipated again, therefore, repeating the cycle.
- Summary report - review of constipation in people with a learning disability and autistic people (PDF)