Exploring patient safety for people with learning disabilities



Why is this project important?

People with learning disabilities die at a rate far greater than the general population and from conditions which could be prevented or treated with good quality care. Mortality reviews of those with learning disabilities show three common themes regularly occurring:

  • The need for healthcare coordination for people with complex or multiple health conditions.
  • Assurance that effective reasonable adjustments are being provided for people with learning disabilities and their families.
  • Mandatory learning disability awareness training for all staff supporting people with learning disabilities.

There is clear evidence that people with learning disabilities may be more at risk in terms of patient safety in hospital as well as known challenges around recognising and reporting patient safety incidents in this population.

What are we doing?

We have explored patient safety for people with learning disabilities in three ways:

Scoping review

Led by Dr Gemma Louch

Aim: To produce a narrative synthesis of published academic and grey literature focusing on people with learning disabilities in an acute hospital setting. Our specific objectives were to:

  • Understand patient safety and adverse events in this population.
  • Explore protective factors and potential explanatory mechanisms.
  • Identify patient safety interventions, improvement initiatives, recommendations and examples of good practice.

In total, 45 articles were included and 33 grey literature materials. Our data synthesis generated six concepts:

(1) Adverse events, patient safety and quality of care;

(2) Maternal and infant outcomes;

(3) Postoperative outcomes;

(4) Role of family and carers;

(5) Understanding needs in hospital;

(6) Supporting initiatives, recommendations and good practice.

A short video which gives an overview of the scoping review findings can be found here, and Learning Disability Today published a news article summarising the review.

We have also produced an Easy Read Summary.

Qualitative exploration 

Focus group study

Led by Dr Naomi Quinton

Aim: There is little definitive teaching about learning disability in the MBChB and so the aim of this study was to incorporate the views and experiences of those voices seldom heard in healthcare professional education (in this initial case, those with learning disabilities) into healthcare curricula.

We worked with learning disability charities in West and North Yorkshire to carry of focus groups to ask those with learning disabilities and their families and carers what they want from their healthcare professionals.

13 people were recruited via local community groups to participate in one of two semi-structured focus groups, held within community settings.

Care Opinion study

Led by Dr Lauren Ramsey

Aim: To understand the care experiences of people with learning disabilities, and explore the potential patient safety issues they, their families and carers experience.

A purposive sample of 377 narratives published on Care Opinion written by, or about, people with learning disabilities were extracted for analysis. Care Opinion is a national not-for-profit online platform on which the public can provide feedback regarding their care experiences in the UK using free text to tell their ‘stories’, which can then be responded to by staff within the organisation(s) concerned. This offers a rich, specific and naturally existing data source of discussions between people with learning disabilities, their carers, their families, and staff.

Our synthesis of the focus group and Care Opinion data highlighted three key themes:

(1) Health and care rigidity;

(2) Systemic gaps and traps;

(3) Dependency work.

You can read the article which presents the qualitative findings here.

Patient and Public Involvement and Engagement

Kate Smyth is a Lay Leader with the YH PSTRC, and Kate provided support throughout the research. Kate input into the scoping review protocol, reviewed the search strategy and helped develop materials for the wider patient and public involvement and engagement approach for the review. For the focus group study, we collaborated with a local community group that supports people with learning disabilities to produce study documents in an easy read format.

Next steps 

Maternal and infant outcomes were an important theme within our previous scoping review. We have been awarded funding from The Baily Thomas Charitable Fund to carry out a further scoping review, focusing specifically on the quality and safety of maternity care for women with learning disabilities. We are aiming to identify gaps in previous research, to help shape an application to a research funding body to develop ways to support women with learning disabilities to receive safe, high quality maternity care.

 Outputs and Impact                                                                                             

Contact for more information: Dr Gemma Louch