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Improving children’s cancer services with patient experience data

Adam Crosier Word of Mouth Research 17 October 2018

Adam Crosier explains how children and young people’s cancer services could be improved through the better use of data on the experiences of patients and their families

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How should cancer services improve the collection and use of patient experience information to develop services? This was the brief for a project commissioned by NHS England to help improve children and young people’s cancer services. The aim was to support the cancer strategy recommendation to develop a feedback tool which will help services to seek, listen to and act on the views of the people – patients and their families – who use them.

Word of Mouth Research worked with the Point of Care Foundation and CLIC Sargent, a leading children’s cancer charity, to undertake the study. The full report is available here. The study explored the views of professionals working in children and young people’s cancer services in Leeds, Birmingham and London, and the experiences of children and young people with cancer and their parents. It also involved a review of the published research evidence on how patient experience information from this group is gathered and used.

What did the children and young people have to say?

Asked about their views on patient experience research, the young people involved in the study expressed a strong desire to see that their views were sought and acted on, both in the interests of themselves and others who would use NHS cancer services in the future.

Young people supported a mixed method approach to collecting their views, and agreed that both qualitative and survey methods should be used. Several reported that there should be a survey of all young people with cancer, as this was the most democratic of methods, and would ensure that as many voices as possible would be heard.

Many of the questions in the adult survey were considered appropriate for younger patients, while respondents volunteered additional themes that could be included to make the survey more relevant to a younger age group. These included questions about being treated as an individual, whether they felt they were fully involved in their treatment and care, including the side effects of different medications, their views on the physical environment, access to privacy, opportunities to socialise with children of a similar age, availability of games to alleviate the boredom of being in hospital for long durations and the quality of the school hospital service. They also thought that questions should be asked across the so-called ‘cancer journey’ as experiences varied throughout this period and a single snapshot would miss the variation.

Strong commitment to patient-centred care

The study found a very high level of concern and commitment among those working with children and young people with cancer to ensure that health services are ‘patient-focused’ and that every child – regardless of their diagnosis – is treated as an individual with their own needs and desires. Several professional respondents reported that by comparison with other areas of healthcare provision, children and young people’s cancer services stood out as exemplary with regard to the level of concern to ensure that the needs of individual patients and their families were paramount.

Asked why this might be, some suggested that the area of children and cancer is highly emotive and one that instinctively attracts a high level of emotional response. Others pointed to the fact that by comparison with other areas of healthcare, children’s cancer services are relatively well resourced. The role of charities in promoting an ethos of person-centred care was also identified by respondents as being crucial.

A number of charities such as Teenage Cancer Trust, CLIC Sargent and Macmillan were all identified as having played a major role in shifting the culture of NHS staff to be more responsive to the needs of patients and their families.

children and young people’s cancer services stood out as exemplary with regard to the level of concern to ensure that the needs of individual patients and their families were paramount.

Creative methods to obtain patient experience

The health professionals who responded to the research reported a very wide range of (mainly qualitative) methods that were used to explore patients’ needs and desires. These methods varied in sophistication according to the age of the patients and the purpose for which the information was being sought. For example, the role of health professionals ‘simply’ observing pain and discomfort of very young and non-verbal children was an important method for obtaining patient feedback, and responding to it.

In many children’s cancer services there are a wide range of non-clinical specialists who work as therapists (art/music/play/story making and telling), interacting with children throughout their stay in hospital (and while at home). Their role was crucial in eliciting information from young children in particular. The very act of spending time on an activity (such as construction or cutting/sticking shapes) provided the adult and child with the opportunity to talk about concerns in a non-threatening way. Other activities of this type included baking clubs and pet therapy.

The role [of non-clinical therapists] was crucial in eliciting information from young children

Moving up the age range, the study identified both formal and informal group discussions as a feedback method. Most promising were ‘Chomp n Chat’ in Leeds and ‘Pizza Club’ in Birmingham, where staff took children (usually aged 12 and over) for a meal out once every month. This informal setting enabled staff to both ‘plant’ questions about patients’ experiences, and simply listen to conversations about issues that were on the minds of the young people. These informal groups were felt to be more beneficial than formal group discussions held within the hospital.

Recommendations

So how should cancer services improve the collection and use of patient experience information? The current position, where there is no routinely conducted survey of children and young people with cancer, was identified as a significant failing and a gap that should be remedied.

The annual survey of cancer patients in the UK is conducted only among adults aged 16 and over. Several respondents felt that the fact that there is no standardised survey amounted to a breach of the UN Convention on the Rights of the Child, Article 12, which imposes a duty on adults to seek and to respect the views of the child about matters that affect them.

The current position, where there is no routinely conducted survey of children and young people with cancer, was identified as a significant failing

The report recommends that NHS England promote the full range of feedback approaches available, highlighting the different purposes they serve; explore the feasibility of a new national survey; and extend any new survey to include young children. If these recommendations are acted on, there is every hope that, in an environment where there is already a clear commitment to patient-centred care, improved data collection and use can in turn drive forward improvements to children and young people’s cancer services.

Read the full report