Your views: acutely ill children

We know that when children become ill it is a worrying time for parents and carers.  Assessment and diagnosis is often challenging for healthcare professionals and requires them to have appropriate skills and competencies.  Children and young people often need a different approach from adults, and many health professionals are anxious about assessing children.

Much has been done to help healthcare professionals to treat sick children. Spotting the Sick Child was developed by clinicians and academics as a web-based interactive tool using real life scenarios and was well received – but a lot more can be done.

The strategy provides us with an ideal opportunity to develop further improvements and we would like to hear from you on the following questions in relation to acutely ill children:

  • Where is the health service falling short for children and young people – what is our weakest link and what can we do to improve things to make sure it makes a real difference to the lives of children and young people?
  • With so many different parts of the health system in place, what do they need to focus on and improve to make sure they each work together to deliver the best possible health service for children and young people?
  • The NHS and Public Health Outcomes Frameworks propose key areas of focus: making sure everyone lives healthy lives for longer, addressing inequalities, enhancing quality of life for people with long term conditions, helping people recover from ill health or following an injury, ensuring people have a positive experience of care, treating and caring for people in a safe environment and protecting them from harm – are these the right priority areas in relation to children and young people’s health outcomes? Is there anything missing?
    See outcomes specific to children and young people in these frameworks
  • What should key health outcomes for children and young people include?

The Forum’s work on acutely sick children is led by Carol Ewing and Eric Kelly.

In Children and Young People’s Health Outcomes Forum | Tagged ,

2 Responses to Your views: acutely ill children

  1. Val Matthews says:

    As the parent of a teenager who died of primary bone cancer I am now a supporter of the work of The Bone Cancer Research Trust. In our contact with children and young people who are diagnosed with bone cancers and their families, we are acutely aware of their need for full and accurate information and we are sure that this same need must be felt by all those children & young people diagnosed with any other cancer.
    Most parents and young people have no information about many of the cancers that affect the young. This means they cannot be proactive in their prompt diagnosis and cannot claim the same right to fast track diagnostic tests and access to specialists that adults with full knowledge of the signs and symptoms of the common cancers have access to.
    There needs to be a system that ensures that all knowledge of early symptoms of cancer in young people is fed through not only to GPs, physiotherapists, A &E doctors, and local orthopaedic surgeons, but also to the books and websites that the general public consult when researching their own and their family’s health issues.
    The need for effective channels of communication to pass information between different parts of the health service is demonstrated by the fact that an oncology consultant was familiar with the fact that the pain from primary bone cancers can be intermittent. He called it an ‘undulating ‘symptom. To my son’s GPs, physiotherapist, and local orthopaedic surgeon, it was an ‘atypical’ symptom which led them to rule out cancer for over a year until it had spread all over his body.
    There is also a need to make it clear which other non-life-threatening conditions are commonly misdiagnosed in place of cancer.
    Once cancer is identified as a possibility, these young people and their families need the basic information that cancer is a possibility. If this information is withheld on the grounds of not wanting to worry them or their parents, the chance of late or wrong diagnosis is increased.
    After diagnosis, information about what is going to happen to them, why it is going to happen, and where, is needed so that they can be part of the decision making process. They can then see what choices are available to them and can see themselves as part of the team striving to make them well. This will enable them to have confidence that they are receiving the best available treatment.
    Clearly the information needs to be accessible. Formats suitable for children of different ages are needed and parents also need information accessible to their own reading abilities and knowledge level of health service provision.
    Where there are gaps in information – for example, what are the early symptoms of these cancers – research is needed to fill them. It seems that no one is following up the patients to ask them what their early symptoms were.
    The outcomes that could be improved by better information provision are:
    1. Early diagnosis in time for treatment to start before the primary cancer has started to spread.
    2. This would lead to an increase in the number of children and young people who survive their cancer diagnosis and therefore prevent them from dying prematurely and
    3. a reduction in the severity of disability resulting from the treatment itself. This would enhance their quality of life.
    4. Address the inequality of children and young people with cancer missing out on the fast tracking of diagnostic tests and referral to specialists that adults get.

    Val Matthews – Parent of a teenager who died following late diagnosis of Ewing’s Sarcoma

  2. Christopher Copland says:

    I am a parent rep. on the Children’s Cancer and Leukaemia Clinical Studies Grroup. A colleague has suggested a make a posting on this site.

    Improvement Area: Prompt diagnosis of children and young people’s cancers. Two factors to take into account are the comparative rarity of most young people’s cancers and that communication with young people is a particular skill. Comprehensive training of front line health workers is needed and rapid referral

    Improvement area: Investment in research on therapies, given many young people’s cancers fall into the”orphan” category. New approaches to funding and data analysis needed taking into account that children’s cancers divide into numerous small categories

    Improvement area: support for survivors in initial periods and over (hopefully) lengthy lifetimes. Building durable relationship with health service professionals on problems such as late effects of treatment, disability, fertility and mental health.

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