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Hearing and responding to experiences of care

With the publication of the 2016 Children and Young People’s Inpatient and Day Case Survey, this blog reflects on why listening to and addressing their views is so important:

The Children and Young People’s Inpatient and Day Case Survey results of 2016 published this week form part of a national survey programme by the Care Quality Commission.

This survey will run every two years and is made up of three separate questionnaires which capture the experiences of children at different ages and their family/carer experiences.

Importantly, it specifically asks children and young people about their care, valuing their insight which we know can be different to the experiences of their parents and or carers. Both perspectives offer us vital information and direction as we continue to work to improve services and ultimately improve healthcare outcomes for this population group.

It’s worth reminding ourselves why seeking out children and young people’s experiences is so important. Each year, about one-in-ten children will be admitted to hospital and behind every hospital admission is a very personal experience that may stay with them for a long time, possibly a lifetime. It can influence their future health and wellbeing, their attitudes to the NHS and possibly even the care they give to their own children in the future.

This national survey data allows us to secure a local and national perspective on what matters most to children, young people and families/carers.

Joe Pusey, of the NHS Youth Forum, was invited to be part of the group that reviewed the questions included in the survey. He, along with other young people from YiPpEe, Oxford University Hospital Young People’s Executive Group, were keen to highlight that while children and young people want great care, they also want their parents/carers to be cared for too. As a result of their input the questions evolved and, having them involved at all stages of the survey design and delivery, helped us to focus on the right things.

The launch of the National Children and Young People’s Inpatient and Day Case Survey in 2014 was a major step forward in giving those who have recently used NHS services an opportunity to share their experiences and we learnt lots from what they had to say.

The 2014 survey results told us that 43 per cent of children and young people weren’t as involved in their care as they wanted to be. In response to this feedback, ‘CYPMeFirst’ supported by Health Education England created a range of resources to improve communication between healthcare professionals and children and young people. These were co-produced with young people and include a face-to-face training programme for professionals delivered by young people.

The numbers speak for themselves: so far they’ve provided training for nearly 500 members of staff and there have been nearly 100,000 hits on their website.

We also heard from the 2014 survey that children and young people needing mental health care in acute paediatric services had poor experiences. Health Education England again responded with the development of ‘We Can Talk CYP MH’. This programme trains staff in A&E departments, in clinics and on wards to be attuned to children and young people’s mental health needs and help build their confidence in caring for them. It is also co-delivered by children and young people.

The programme, which was launched in Barts Health NHS Trust this year, has now trained over 200 hospital staff in three hospital trusts (Barts Health, Royal Free and Lewisham and Greenwich).

Just as the 2014 survey results have directed interventions to improve children and young people’s care, we look forward to addressing the results of the 2016 survey in the months ahead. We’ll be working nationally with the NHS Youth Forum on the results and we’d encourage you locally to work with your children, young people and families to address your results too.

Progress is also being made to see what other types of feedback can be used to collect experiences of care. There are many different sources of feedback and these should be used together to create a picture of care and to include every voice.

NHS England’s Insight and Feedback Team is taking this forward with their new piece of work looking at the best ways of collecting feedback from children and young people with cancer. They are looking at how new and creative approaches to collecting patient experience may work, such as art, narrative and social media.

  • If you would like to contribute to this important work, please do get in touch with us via insight-queries@nhs.net
Kath Evans

Kath Evans, RGN, RSCN, MSc (Nursing), PG Dip (Education), BSc (Hons), PG Dip (Management), Institute of Leadership and Management (ILM) Accredited Coach, is NHS England’s Experience of Care Lead – Maternity, Infants, Children and Young People.

She is a registered general and children’s nurse and her career has included clinical, educational, managerial and service improvement roles.

She is committed to ensuring the voices of children, young people, families/carers and maternity service users are heard in their care and in the design, delivery and commissioning of services.

Melinda Smith

Melinda Smith is an Insight and Feedback Officer in the Insight & Feedback team. She currently works on two key projects exploring the best ways of collecting patient experience data for children and young people with cancer, and with mental health problems.

Joe Pusey

Joe Pusey is an alumni member of the NHS Youth Forum.

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