NIHR DC Discover

Nurse and Doctor talking to child patient in wheelchair

NIHR Signal General hospital care for children with learning disabilities has scope for improvement

Published on 18 September 2018

doi: 10.3310/signal-000645

Less than half of NHS staff surveyed said they were routinely informed that a child has learning disabilities through a dedicated flagging system on admission.

Many general hospital staff lack confidence and organisational support in providing care for children and young people with learning disabilities. In an NIHR national hospital staff-awareness survey, staff were uncertain or unaware of local policy and practice. Only half of the children’s hospitals had a learning disability nurse, and where they did exist, there was disparity in the status and importance attributed to the role. This is likely to prevent the needs of these children being fully met.

This research shows the frequent lack of well-embedded local policies to support children with learning disabilities in general hospitals and the current variation in practice.

Share your views on the research.

Why was this study needed?

Around 286,000 children in the UK have a learning disability. How this impacts their lives varies, but comprehension and communication are commonly affected.

Recent service reviews have demonstrated that care for those with learning disabilities is often not patient-centred. The 2008 Michael Inquiry into hospital care for adults with learning disabilities and the 2012 Winterbourne View Hospital Serious Case Review and subsequent inquiry led to a programme of Care Quality Commission (CQC) inspections in 2016. 

The CQC subsequently recommended a range of initiatives, such as flagging systems to identify children with learning disabilities on admission, hospital passports, plans for communicating with children and their carers and dedicated learning disability nurses. These initiatives are likely to enable children and their carers to communicate their needs more effectively and increase awareness throughout the hospital. However, it is unclear if and how they are being implemented across the country.

This study sought to answer these questions as well as explore staff perceptions.

What did this study do?

Pay More Attention is a mixed methods study across England. This first phase comprised interviews with hospital staff about local learning disabilities policies for children, and staff surveys about their attitudes and awareness of policy and practice on caring for children with learning disabilities and long-term conditions.

Staff with a range of professional backgrounds took part. For the interviews, they had to hold a senior clinical or managerial role or work specifically with children and young people with learning disabilities. There were 65 interviews at 22 hospital sites (15 children’s and 7 non-children’s hospitals) and 2,261 survey respondents at 24 hospital sites (15 children’s and 9 non-children’s hospitals).

This study serves as a valuable audit of current service provision and staff awareness.

What did it find?

  • There was wide variation in local policies and service provision. Only half of the children’s hospitals had a learning disability liaison nurse, and there was wide variation in their numbers, remit, working hours and status.
  • None of the 65 interviewees reported having a standalone policy for children and young people with learning disabilities. Interviewees from 9 of 22 sites either did not know what polices existed or showed a lack of consensus in their knowledge.
  • Staff attitudes generally revealed lack of confidence in caring for children with learning disabilities. Staff reported less capacity and lower levels of capability and confidence in meeting the needs of children and young people with learning disabilities compared to those without.
  • Staff showed uncertainty about what was in place, or what should be in place for children with learning disabilities. This was observed within and across institutions.
  • Fewer than half of 2,261 survey respondents said they were routinely informed that a child had learning disabilities. A quarter did not know what systems were in place to identify learning disability.

What does current guidance say on this issue?

The broader NHS England 2017 guidance for services for children and young people with a learning disability, autism or both highlights the need for hospital passports, a clear plan for any medical appointments, and reasonable adjustments such as scheduling appointments at a quieter time of day.

There are two NICE guidelines for people with learning disabilities and challenging behaviour, one looking at service design and delivery (2018) and one focusing on interventions (2015). Both stress the need for a designated leadership team, effective local care pathways and sufficient staff training and support.

What are the implications?

While the principles of good practice and some good care exist for children with learning disabilities, more needs to be done to ensure they become part of the culture in all hospitals that care for children with learning disabilities and medical conditions.

This work package has highlighted the variation in care. The on-going elements of this study will take a more in-depth look into patient and carer perspectives at four hospitals. Additional research will be needed to explore how the variation can be reduced.

Citation and Funding

Oulton K, Gibson F, Carr L, et al. Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study. BMC Health Serv Res. 2018;18(1):203. 

This project was funded by the National Institute for Health Research Health Services and Delivery Research programme (project number 14/21/45) and supported by the NIHR Great Ormond Street Hospital BRC.

Bibliography

Care Quality Commission. Review of learning disability services. London: Care Quality Commission; 2016.

Department of Health. Transforming care: a national response to Winterbourne View Hospital. London: Department of Health Review; Final Report. 2012.

Lenehan C. These are our children. London: Department of Health; 2017.

Michael J, Richardson A. Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. Cancer Treat Rev. 2005;31(4):256-73.

NHS website.  Learning disabilities London: Department of Health; updated 2018.

NHS England. Developing support and services for children and young people with a learning disability, autism or both. Leeds: NHS England; 2017.

NICE. Learning disabilities and behaviour that challenges: service design and delivery. NG93. London: National Institute for Health and Care Excellence; 2018.

NICE. Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. NG11. London: National Institute for Health and Care Excellence; 2015.

Why was this study needed?

Around 286,000 children in the UK have a learning disability. How this impacts their lives varies, but comprehension and communication are commonly affected.

Recent service reviews have demonstrated that care for those with learning disabilities is often not patient-centred. The 2008 Michael Inquiry into hospital care for adults with learning disabilities and the 2012 Winterbourne View Hospital Serious Case Review and subsequent inquiry led to a programme of Care Quality Commission (CQC) inspections in 2016. 

The CQC subsequently recommended a range of initiatives, such as flagging systems to identify children with learning disabilities on admission, hospital passports, plans for communicating with children and their carers and dedicated learning disability nurses. These initiatives are likely to enable children and their carers to communicate their needs more effectively and increase awareness throughout the hospital. However, it is unclear if and how they are being implemented across the country.

This study sought to answer these questions as well as explore staff perceptions.

What did this study do?

Pay More Attention is a mixed methods study across England. This first phase comprised interviews with hospital staff about local learning disabilities policies for children, and staff surveys about their attitudes and awareness of policy and practice on caring for children with learning disabilities and long-term conditions.

Staff with a range of professional backgrounds took part. For the interviews, they had to hold a senior clinical or managerial role or work specifically with children and young people with learning disabilities. There were 65 interviews at 22 hospital sites (15 children’s and 7 non-children’s hospitals) and 2,261 survey respondents at 24 hospital sites (15 children’s and 9 non-children’s hospitals).

This study serves as a valuable audit of current service provision and staff awareness.

What did it find?

  • There was wide variation in local policies and service provision. Only half of the children’s hospitals had a learning disability liaison nurse, and there was wide variation in their numbers, remit, working hours and status.
  • None of the 65 interviewees reported having a standalone policy for children and young people with learning disabilities. Interviewees from 9 of 22 sites either did not know what polices existed or showed a lack of consensus in their knowledge.
  • Staff attitudes generally revealed lack of confidence in caring for children with learning disabilities. Staff reported less capacity and lower levels of capability and confidence in meeting the needs of children and young people with learning disabilities compared to those without.
  • Staff showed uncertainty about what was in place, or what should be in place for children with learning disabilities. This was observed within and across institutions.
  • Fewer than half of 2,261 survey respondents said they were routinely informed that a child had learning disabilities. A quarter did not know what systems were in place to identify learning disability.

What does current guidance say on this issue?

The broader NHS England 2017 guidance for services for children and young people with a learning disability, autism or both highlights the need for hospital passports, a clear plan for any medical appointments, and reasonable adjustments such as scheduling appointments at a quieter time of day.

There are two NICE guidelines for people with learning disabilities and challenging behaviour, one looking at service design and delivery (2018) and one focusing on interventions (2015). Both stress the need for a designated leadership team, effective local care pathways and sufficient staff training and support.

What are the implications?

While the principles of good practice and some good care exist for children with learning disabilities, more needs to be done to ensure they become part of the culture in all hospitals that care for children with learning disabilities and medical conditions.

This work package has highlighted the variation in care. The on-going elements of this study will take a more in-depth look into patient and carer perspectives at four hospitals. Additional research will be needed to explore how the variation can be reduced.

Citation and Funding

Oulton K, Gibson F, Carr L, et al. Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study. BMC Health Serv Res. 2018;18(1):203. 

This project was funded by the National Institute for Health Research Health Services and Delivery Research programme (project number 14/21/45) and supported by the NIHR Great Ormond Street Hospital BRC.

Bibliography

Care Quality Commission. Review of learning disability services. London: Care Quality Commission; 2016.

Department of Health. Transforming care: a national response to Winterbourne View Hospital. London: Department of Health Review; Final Report. 2012.

Lenehan C. These are our children. London: Department of Health; 2017.

Michael J, Richardson A. Healthcare for all: report of the independent inquiry into access to healthcare for people with learning disabilities. Cancer Treat Rev. 2005;31(4):256-73.

NHS website.  Learning disabilities London: Department of Health; updated 2018.

NHS England. Developing support and services for children and young people with a learning disability, autism or both. Leeds: NHS England; 2017.

NICE. Learning disabilities and behaviour that challenges: service design and delivery. NG93. London: National Institute for Health and Care Excellence; 2018.

NICE. Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. NG11. London: National Institute for Health and Care Excellence; 2015.

Mapping staff perspectives towards the delivery of hospital care for children and young people with and without learning disabilities in England: a mixed methods national study.

Published on 23 March 2018

Oulton, K., Gibson, F., Carr, L., Hassiotis, A., Jewitt, C., Kenten, C., Russell, J., Whiting, M., Tuffrey-Wijne, I. and Wray, J.

BMC Health Services Research Volume 18 Issue 203 , 2018

Background: Children and young people (CYP) with learning disabilities (LD) are a vulnerable population with increased risk of abuse and accidental injury and whose parents have reported concerns about the quality, safety and accessibility of their hospital care. The Care Quality Commission’s (CQC) view of best practice for this group of patients includes: access to senior LD nurse provision; a clearly visible flagging system for identifying them; the use of hospital passports; and defined communication strategies (Glasper, Comp Child Adolesc Nurs 40:63-67, 2017). What remains unclear is whether these recommendations are being applied and if so, what difference they are making. Furthermore, what we do not know is whether parental concerns of CYP with LD differ from parents of other children with long-term conditions. The aims of this study were to 1) describe the organisational context for healthcare delivery to CYP with LD and their families and 2) compare staff perceptions of their ability to identify the needs of CYP with and without LD and their families and provide high quality care to effectively meet these needs. Methods: Individual interviews (n=65) and anonymised online survey ( n=2261) were conducted with hospital staff working with CYP in 15 children’s and 9 non-children’s hospitals in England. The majority of interviews were conducted over the telephone and recorded and transcribed verbatim. Health Research Authority was obtained and verbal or written consent for data collection was obtained from all interview participants. Results: The nature and extent of organisational policies, systems and practices in place within hospitals to support the care of CYP with LD differs across England and some uncertainty exists within and across hospitals as to what is currently available and accessed. Staff perceived that those with LD were included less, valued less, and less safe than CYP without LD. They also reported having less confidence, capability and capacity to meet the needs of this population compared to those without LD. (Continued on next page)

A hospital passport is a document that the person brings with them into hospital. It provides staff with information about the person’s preferences including their:

  • preferred method of communication,
  • likes and dislikes,
  • support needs,
  • best method of taking medication such as syrups, whole or crushed tablets.

Expert commentary

This research is a timely reminder that children and young people (CYP) with learning disability are amongst the most vulnerable people in our society. The most important message from this research is that staff reported CYP with learning disability were less safe in hospital than other children.

Health professionals need an awareness of how CYP with learning disability can be in danger if their needs are not met. Care of CYP with learning disability is everyone's business, as healthcare professionals, we need to ensure safe and effective care for this population of young people and raise awareness of these issues.

Dave Clarke, Foundation Professor of Nursing, University of Leicester