This is a plain English summary of an original research article. The views expressed are those of the author(s) and reviewer(s) at the time of publication.
Small adjustments in hospitals could help children with learning disabilities receive the same care as other children, a report concluded. These children often find new environments and some procedures distressing. Researchers say that reasonable adjustments, such as using symbols and photos to communicate, and offering a private cubicle, could help.
Learning disabilities impact people’s ability to understand complicated information or learn new skills. Adults with learning disabilities often have worse experiences of healthcare than other people. But the experiences of children with learning disabilities are less well known.
Researchers explored the experiences of children with learning disabilities at 24 hospitals. They interviewed senior managers, healthcare staff, children with and without learning disabilities, and parents.
The team found that most hospitals did not have a learning disability policy or a liaison nurse dedicated to learning disability. For children with and without learning disabilities, healthcare experience was overwhelmingly influenced by individual staff members. Parents of children with learning disabilities were often worried about safety, for instance when a bed lacked safety rails. Staff often had little training or confidence in how to care for a child with learning disabilities, meaning that parents felt heavily relied upon.
Fewer than half of the hospitals had systems that could flag a learning disability before a child was admitted. The researchers say that systems need to highlight specific requirements to staff, for instance if a child needs a separate cubicle or symbols to communicate, so they have time to make adjustments before admission.
More information about learning disabilities is available on the NHS website.
Are hospitals meeting the needs of young people with learning disabilities?
People with learning disabilities can have difficulty understanding complicated information or learning new skills. Adults with learning disabilities have more negative experiences of healthcare (including discrimination, abuse, and receiving poor care) than those without these disabilities. Less is known about children’s experiences.
The Learning Disability Improvement Standards aim to improve the quality of care NHS Trusts provide. The standards include respecting and protecting the human rights of people with learning disabilities. They recommend that staff make adjustments to the physical and sensory environment, and to communication methods. The standards suggest that staff work with people with learning disabilities, families and carers to plan and evaluate care and treatment. They recommend staff training on learning disabilities.
In previous research, parents felt that staff lacked knowledge about learning disabilities. However, past studies were small, and did not look at how services are delivered across different hospital settings. Children with learning disabilities often have more complex needs, and need different care, from other children. But their views and experiences are rarely recorded.
Researchers assessed how well hospital services are meeting the needs of children and young people with learning disabilities, and their families. They explored what helps and what prevents the delivery of equitable, high-quality care and services.
What’s new?
The study included 24 hospitals in England, including all 15 specialist children’s hospitals. The researchers interviewed senior managers, looked at policy documents and surveyed 2261 staff.
They found widespread variation in policy and practice in relation to children with learning disabilities.
- Hospital policies and systems. Many senior managers did not know if their hospital had a learning disability policy. Fewer than half (45%) of the hospitals had a system to alert staff about a child’s learning disability; those systems rarely specified the adjustments each child needed. Just over half (53%) of all children’s hospitals had a dedicated learning disability nurse.
- Staff knowledge, skills, or training. Staff generally felt that children with learning disabilities were valued less and treated with less dignity than children without disabilities.
The researchers looked at 7 hospitals in detail; they interviewed 63 children (aged between 5 and 16 years), and asked parents to fill out a diary. Satisfaction surveys were completed by 803 children, most of whom had either a long-term condition (355) or learning disability (198). A further 812 parents also completed satisfaction surveys. They interviewed 98 members of staff; and 429 community staff (including doctors, allied health professionals and healthcare assistants) completed a survey.
The study described the experiences of staff, parents and children.
- Individual staff influenced the experiences of individual children, both with and without learning disabilities, and their families. Children and families found a lack of consistency in the attitudes and knowledge of staff. Children did not always feel listened to, or involved in their own care.
- Less flexible care had more impact on children with learning disabilities. The suitability of the hospital environment (the availability of private cubicles, sensory resources, beds with rails, and so on) and quality of care differed between hospitals. Parents whose children had learning disabilities were more concerned about safety than other parents since their children needed more oversight. They felt that some staff (a minority) had negative attitudes, and this could have a lasting impact on them. Parents appreciated staff who tailored their communication to meet their child’s needs.
- Parents were generally less satisfied with the healthcare they received than parents whose children did not have learning disabilities. They felt that hospitals were less able to accommodate their child’s needs. But surveys showed no differences in satisfaction with parents’ involvement in care, staff helpfulness, or access to appointments. Children with and without learning disabilities rated their involvement in treatment similarly.
- Staff struggled with lack of awareness and knowledge about non-medical needs of children with learning disabilities. They found some terms unclear. One occupational therapist said: “They say ‘LD’ and that could mean autism. It could mean intellectual disability. It could mean that the child has behaviour needs or mental health needs. You never know what it actually means.” This made it difficult for staff to prepare adjustments in advance.
Why is this important?
These insights emphasise the importance of treating children with learning disabilities with respect and as individuals.
The research team developed guidance to help hospital staff improve the care they provide, and to help trusts meet the NHS’ improvement standards. A model for staff about how to make reasonable adjustments for children with learning disabilities encourages staff to be ‘PROACTIVE’.
- Partnership and parents: work with parents before a hospital admission to prepare reasonable adjustments, negotiate care and explain hospital routines and ward facilities.
- Resources: consider the need for adapted or specialist resources such as symbols/photographs to help with communication, sensory equipment, bed bumpers , and appropriate toys.
- Opportunity: see every encounter an opportunity to develop knowledge about that child’s needs and improve their future hospital visits.
- Ask and advocate: ask parents what their child’s needs are rather than waiting to be told.
- Communication: understand how the child usually communicates, and tailor communication to their needs.
- Time and timing: allow extra time to provide information, and to prepare for and carry out a procedure. Maintain the child’s routine as much as possible.
- Identification and involvement: develop strategies to identify children with learning disabilities before they come to hospital. Consider how best to involve them in decisions, big or small, about their treatment.
- Values: treat every child as an individual, address them directly by name and ensure they know who you are and your role. Be aware of potential sensitivities around a learning disability diagnosis and use appropriate language.
- Environment: consider the best location for the child on a ward (for instance in a cubicle or bay) and take account of sensitivities to noise, light or other people.
The team is creating animations for each of the elements of PROACTIVE.
What’s next?
Great Ormond Street Hospital has developed a 5-year strategy to help improve their care of children with learning disabilities. An improved system flags both a learning disability and the adjustments a child needs. The strategy includes a sensory resource library, new safespace beds (with high sides) and play workers who specialise in learning disabilities.
In this study, many managers were not aware of a learning disabilities policy. The researchers say that clear expectations are needed. For example, hospitals need better flagging systems to enable staff to work with the child and their parents before admission, to understand their individual needs, and how the child communicates, in order to include them in discussions. The researchers are developing a risk assessment tool to help identify needs and appropriate adjustments in advance, along with any risks associated with not making adjustments.
Staff need training and experience to build their skills and knowledge about children with learning disabilities. The Oliver McGowan Mandatory Training on Learning Disability and Autism is being rolled out by the NHS in 2023. It aims to help staff feel confident in caring for people with learning disabilities.
The surveys in this study showed that parents of children with learning disabilities were generally less satisfied with their child’s hospital care than other parents. Other surveys (on access to hospital appointments and involvement in care) found no differences. Further work is needed to explore satisfaction in more detail. The researchers have developed a patient reported experience measure to assess the quality of hospital care for children with learning disabilities. It has not yet been evaluated.
You may be interested to read
This summary is based on: Oulton K, and others. Equal access to hospital care for children with learning disabilities and their families: a mixed-methods study. Health and Social Care Delivery Research 2022;10:13.
The Oliver McGowan training for the NHS around learning disability and autism.
The learning disability improvement standards for NHS trusts.
A report by Mencap describing why people with a learning disability receive worse healthcare than non-disabled people: Death by indifference.
The Mencap Treat Me Well campaign.
Funding: This project was funded by the NIHR Health and Social Care Delivery Research programme.
Conflicts of Interest: No relevant conflicts of interest were declared. A full declaration can be found on the original paper.
Disclaimer: Summaries on NIHR Evidence are not a substitute for professional medical advice. They provide information about research which is funded or supported by the NIHR. Please note that the views expressed are those of the author(s) and reviewer(s) at the time of publication. They do not necessarily reflect the views of the NHS, the NIHR or the Department of Health and Social Care.
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