Parents say health worries were ignored before child’s cancer diagnosis, research reveals

Nearly half of parents of children diagnosed with cancer surveyed by charity CLIC Sargent felt their worries about their child’s health were ignored by GPs.

Parents say health worries were ignored before child’s cancer diagnosis, research reveals
  • New research from CLIC Sargent finds 42% of parents of young cancer patients surveyed said they did not feel listened to by doctors 
  • GPs should have more support to identify cancer in the young
  • Charity wants more research into impact of 'delayed diagnosis'

Parents said they did not feel their knowledge of their own child’s health was taken into account or they did not feel their doctor had time to listen to their concerns. The results are published today in a new report: The best chance from the start: identifying cancer in children and young people.

The new research from the UK’s leading cancer charity for children and young people found 42% of parents surveyed felt their concerns were ignored, with a third (34%) saying they feel their child received a delayed diagnosis.

Young people with a cancer diagnosis aged 16-24 also took part in the research with 44% of those surveyed saying they felt they were not taken seriously enough, making multiple trips to the GP or hospital before they were eventually diagnosed. Half (53%) felt their diagnosis was delayed. 

CLIC Sargent is calling for health ministers and NHS leads to ensure better training and guidance is available for GPs and other professionals who care for children and young people before diagnosis. The charity also wants the NHS to conduct more research into the impact a delayed diagnosis has on a child or young person’s health outcome, treatment and survival rates.

Kate Lee, CLIC Sargent Chief Executive, said: “It is simply not acceptable that so many of the parents and young people we spoke to felt their GP didn’t take their concerns seriously or that their knowledge of their child’s health wasn’t recognised.

“It is absolutely vital that medical professionals including GPs are confident and skilled in listening and talking to children, young people and parents – and responding to their concerns.

That’s why we’re calling for health education bodies to make this a core element of professional training.

Half of the parents who felt their child had a delayed diagnosis told CLIC Sargent they felt this had an impact on prognosis while 63% said the delay had a negative effect on the emotional wellbeing of their child.

The survey found 93% of young people felt their delayed diagnosis added to their emotional stress while they coped with the devastation of their illness. 

As part of its research, the charity also asked GPs across the UK to rank what they thought were the biggest barriers they faced in identifying cancer in children and young people. Almost half (46%) ranked not enough available training on identifying cancer in children and young people as one of their top three barriers, while 50% said more consultation time would be beneficial in providing them with additional support or advice when identifying the possible symptoms of cancer in children and young people.

Kate Lee added: “It is striking that so many GPs feel more can be done to help them identify suspected cancer. Cancer in children and young people is thankfully rare so a GP may only have one or two cases in their whole career.

“It is vital that every possible step is taken to reduce the emotional stress felt by children, young people and parents of anxiously waiting to find out what is wrong. We want to see a commitment by the NHS to research into the impact of a delayed cancer diagnosis on outcomes and survival rates in children and young people.”

Dr Julia Chisholm, Consultant Paediatric Oncologist at leading cancer hospital The Royal Marsden, and a CLIC Sargent Trustee, said: “CLIC Sargent’s report clearly shows that in many cases the health system is not providing adequate support for young patients and their families in the lead up to a cancer diagnosis. It is imperative that any parent, child or young person feels listened to and is taken seriously when visiting a medical professional with health concerns. 

“In order to provide the best care possible to young cancer patients, the NHS must take steps to improve support for those tasked with identifying a possible cancer diagnosis in children and young people. Equally, more research is needed to establish the impact a delayed diagnosis can have on a child or young person’s health outcome, treatment and survival rates, which is why I support CLIC Sargent’s calls and commend this aims of this report.”

CLIC Sargent believes the findings of the research should be looked at by policy-makers and service providers in light of NICE guidance of June 2015 which stated that GPs should take into account parents or carers’ concerns and should consider referral if they have persistent anxieties or concerns about their child’s symptoms (1).

Ends

(1) NICE guidelines Suspected cancer: recognition and referral June 2015: http://www.nice.org.uk/guidance/ng12
  1. For more information, an interview or images please contact Helen Thomas on 020 8752 2855 or email hthomas@clicsargent.org.uk. Outside office hours please call 08448 481189.
  2. To read the full report visit http://www.clicsargent.org.uk/content/better-care-young-cancer-patients-diagnosis

About cancer in children and young people

Every day, 10 children and young people in the UK hear the shocking news they have cancer. Treatment normally starts immediately, is often given many miles from home and can last for up to three years. Although survival rates are over 80%, cancer remains the single largest cause of death from disease in children and young people in the UK.

About CLIC Sargent

CLIC Sargent is the UK’s leading cancer charity for children and young people, and their families. We provide clinical, practical and emotional support to help them cope with cancer and get the most out of life. For more information visit www.clicsargent.org.uk 

About the report: The best chance from the start: identifying children in cancer and young people

The report examines existing research and adds evidence about the experience of children, young people and families about the process leading up to the diagnosis of cancer. It presents the findings of a survey of 333 people (147 young people and 186 parents); a poll of 1,000 GPs; interviews with CLIC Sargent Nurses and Social Workers; and focus groups with 13 young people. 

CLIC Sargent’s Better Care for Young Cancer Patients campaign 

CLIC Sargent’s new report: The best chance from the start: identifying children in cancer and young people is part of a three-year campaign, Better care for young cancer patients which aims to ensure children and young people with cancer get the best possible care and treatment from the moment they have concerns about their health.

The Better Care for Young Cancer Patients campaign was launched in July 2015. This campaign is calling for changes to the health and care system so that young cancer patients get the best possible care and support – and that their, their families’ and health professionals’ voices are heard by the government and NHS.

About the GPs research:

ComRes interviewed 1,002 General Practitioners online between 16 and 24 July 2015. Quotas were set to ensure a representative spread of all GPs in the UK by former SHA region, with all respondents verified by their GMC number. ComRes is a member of the British Polling Council (BPC) and abides by its rules. Full data tables can be found on the ComRes website www.comres.co.uk 

Note to sub editors

Please note that the name ‘CLIC Sargent’ should not be abbreviated to CLIC, and that the word ‘CLIC’ should always appear in capitals, as above. 

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