I always think it’s important to know how studies have come about; often in healthcare they come from a particular professional experience and a desire to improve patient experience and outcomes. My interest in learning disabilities started in 1997, when as a newly qualified staff nurse working at Great Ormond Street Hospital (GOSH) I experienced at first hand the rewards and challenges of caring for children and young people with learning disabilities and their families on the ward. The challenges associated with managing pain and discomfort were particularly difficult. At times there appeared to be no satisfactory resolution of such issues: a predicament I found both frustrating and distressing. I saw the practical involvement parents had meeting the personal and complex needs of their child when they were in hospital and they performed tasks I associated with nursing rather than parenting. I relied on parents to help me understand their child’s needs and wishes, particularly when they were unable to communicate verbally.

In 2000, I gained further insight into the lives of children and young people with learning disabilities and their parents whilst working as a research nurse for the Royal College of Nursing. I conducted home interviews with 50 mothers of non-verbal children with neurological impairment about pain assessment and management. What struck me was that the private world in which children and young people with learning disabilities lived had far more in common with the clinical environment of a hospital than I had previously realised. I questioned what it meant for these mothers to combine parenting with a role that appeared to have much in common with my role as a nurse.

The opportunity to understand what life was like for parents of children with learning disabilities came some years later when I started my PhD. I conducted in-depth interviews with 20 parents about their experiences, something I found extremely rewarding. The sense of devoted protection that parents felt towards their child with learning disabilities was evident. They talked with passion and pride about their child’s personal qualities, abilities and achievements, but also with dismay and frustration about the many challenges they faced. It became clear that the type of relationship parents had with healthcare professionals made a big difference to their lives. Often parents lacked trust in anyone to care for their child as they would, and subsequently felt that they had to take complete responsibility for their child’s health and well-being at all times, even when their child was in hospital under the care of healthcare professionals.

In 2012, whilst working in the Centre for Outcomes and Experience Research in Children’s Health, Illness and Disability (ORCHID) at GOSH, my colleagues and I successfully applied for a research grant from the Great Ormond Street Hospital Children’s Charity (GOSHCC) to identify the needs and experiences of children and young people with learning disabilities and their families in hospital. The Stop, Look and Listen (SLL) study involved me spending over a year observing hospital care for children and young people with learning disabilities as well as asking them, their parents and hospital staff what they thought about it. I was lucky enough to have a parent of children with learning disabilities join the steering group for this project and offer advice throughout the study. One of the key findings to come out of the study was that the ‘little things’ make the biggest difference to children and young people with learning disabilities and if those ‘little things’ are not provided then hospital can be a stressful and challenging experience for them.

What we realised from this research was that we needed more information in order to make improvements. We needed to look at what was happening in different hospitals across the country and also to understand whether the experiences of children and young people with learning disabilities were any different to those with other long-term conditions. The ‘Pay More Attention’ study provides us with an opportunity to examine what hospital care is like for a large group of children with long-term conditions, both with and without learning disabilities. We hope that by getting it right for our most vulnerable patients we can get it right for all.

Kate Oulton