Young people have a right to have their experiences of hospital care heard – and we must ensure we find the right ways to listen
1 July marked the publication of a new national survey of children’s experiences of hospital care in the NHS.
The survey, designed and coordinated by the Picker Institute for the Care Quality Commission, is the first of its kind in a decade.
‘We know so much about adults’ experiences that the gap around children’s care seems very stark indeed’
Although there have been a number of surveys of children at a local level conducted by the Picker Institute and others, there has been no attempt to collate a national picture of the quality of hospital care for young people since 2004.
Since then, there have been 10 national surveys covering adult inpatients, 10 covering adult users of mental health services, three each focusing on adults in accident and emergency and outpatients departments, and so on.
Cumulatively, we know so much about adults’ experiences that the gap around children’s care seems very stark indeed.
Why is this? Perhaps it is more difficult to measure children’s experiences.
Children are a far less homogenous group that most adult inpatients: it is fair to assume that the difference between the average five-year-old and the average 10-year-old is often more profound than for the average 55 and 60-year-old.
‘Some people may also be sceptical about what children can tell you’
Some people may also be sceptical about what children can tell you: for younger children brain physiology and memory capacity are still developing, and at different rates.
The youngest children, of course, simply do not have the capacity to read or complete a questionnaire.
But all of these challenges are surmountable, and they cannot be a reason to ignore the voices of children.
Young people have a right to be heard and we must ensure we find the right ways to listen.
Learning to listen
Over the past decade, the Picker Institute has developed and refined an approach to conducting surveys to measure the experiences of children using health services.
The approach and the style of questions have been extensively tested with children and families to ensure that they provide understandable prompts and collect valid, reliable information.
‘The approach and the style of questions have been extensively tested’
Central to this approach is using a combination of questions directed to parents, particularly for younger children, and others addressed personally to young people.
This approach forms the foundation of the new national children’s survey, which split data collection across three age groups:
- parents were asked to give feedback on behalf of 0-7 year-olds;
- parents and children were both invited to respond for those aged 8-15; and
- differently worded and designed questionnaires for children aged 8-11, and young people aged 12-15.
Collecting feedback in this way gives us a unique insight into what care is like for young people.
Reassuringly, most young patients were reported to have had good experiences overall: 87 per cent of children and 88 per cent of parents gave an overall rating of 7 or higher out of 10, comparing favourably to an equivalent figure of 84 per cent in the 2014 national survey of adult inpatients.
Further, the results suggest that NHS staff were generally good at making young people feel cared for and well looked after.
‘Only 78 per cent of children aged 8-11 felt personally listened to’
For example, 80 per cent of those aged 12-15 years-old said that staff did not “talk to each other about you as if you weren’t there”, while 83 per cent of parents of those aged 0-7 said that their child was “always well looked after by hospital staff”.
In spite of this, there were problems in key areas of person centred care – including communication as well as involvement in and coordination of care.
Less than three-quarters (74 per cent) of parents of younger children (aged 0-7) felt that staff “always” listened to them, while only 78 per cent of children aged 8-11 felt personally listened to.
Care was sometimes poorly coordinated: more than two in five parents (41 per cent) said that different members of staff were not or were only “to some extent” aware of their child’s medical history.
Similarly, only 62 per cent of those aged 12-15 said that staff “completely” told them what would happen after they left hospital.
Some of the most alarming results were around involvement.
Patient involvement is a central principle of person centred care, and this is enshrined in the NHS Constitution – which states that all patients (and their families or carers where appropriate) have a right to be involved in decisions about their care.
The survey shows that too many young people and families were not given the opportunity to exercise this right.
‘It is not just young patients who are left out of decisions about their care’
Only 57 per cent of older children – those aged 12-15 years-old– were fully involved in decisions about their care and treatment. More than one in eight (13 per cent) said that they were not involved at all.
It is not just young patients who are left out of decisions about their care: too rarely were parents encouraged to be involved in decisions about the care and treatment of their children.
This was most pronounced for the youngest patients: only 63 per cent of parents of children aged 0-7 years were “definitely” encouraged to be involved. This needs to improve.
This new survey is an important milestone in the health service’s relationship with young patients. It must not be the end of the road.
Now that we have robust national data about the experiences of young people, providers have a responsibility to review their results and use this important evidence to design and deliver better services.
This process should involve children, too. After all, the participation of more than 6,500 young people in the survey demonstrates their willingness and ability to contribute to the health service.
‘Progress should be measured through consultation with young people’
Appropriately involving children in improvements means that change is more effectively targeted towards the things that matter most to young people, thus having the maximum positive impact of the young people themselves, and in turn overall care quality.
Progress should be measured through consultation with young people and through further surveys – and our challenge to providers is to use these results to ensure that their next survey of children records much improved experiences of communication, involvement and care coordination.
Chris Graham is director of research and policy for the Picker Institute Europe