Survey results revealed to mark start of Childhood Cancer Awareness Month.
A lack of available training is one of the biggest barriers GPs face in identifying cancer in children and young people, new research commissioned by CLIC Sargent has revealed.
Parents of children diagnosed with cancer have also told the charity they felt there was a problem in the time it took to have their child diagnosed after first visiting their GP.
And some parents said a delayed diagnosis had a negative impact on their own physical and emotional health, as well as their child’s.
CLIC Sargent, which provides practical and emotional support to young cancer patients and families facing childhood cancer, has released the results of its two surveys today (1 September 2015) to mark the start of Childhood Cancer Awareness Month.
The charity is calling for improved support for GPs in identifying childhood cancer to help combat the impact a delayed diagnosis can have.
The charity asked GPs across the UK to rank from one to eight what they thought were the biggest barriers they faced in identifying cancer in children and young people from a list of options presented.
Almost half (46%) ranked not enough training available on identifying cancer in children and young people as one of their top three barriers – with more than one in five (22%) ranking it as their number one barrier.
A third (33%) said that insufficient opportunities to gain experience in the care of children and young people during their initial GP training was one of their top three barriers in identifying cancer in children and young people, and almost a third (32%) said a lack of awareness of the symptoms was one of their top three barriers.
The survey, carried out by ComRes on behalf of CLIC Sargent, the UK’s leading cancer charity for children and young people, questioned 1,002 GPs in the UK.
GPs were also asked what additional support or advice would be beneficial in helping to identify the possible symptoms of cancer in children and young people.
Almost three in five (57%) said discussions with experts, such as paediatric specialists, about specific cases would help, and more than half (53%) said continuing professional development (CPD) schemes on cancer in children and young people would be beneficial.
Just over half (51%) said more allotted time for training sessions to help them to better understand symptoms would help and half (50%) said more consultation time with patients to be able to identify cancer in children and young people would be beneficial.
CLIC Sargent is also currently exploring parents’ experiences of diagnosis with initial findings of a parents’ survey showing that there is a problem surrounding delayed diagnosis after first visiting a GP with symptoms – and that parents agree GPs need more support in diagnosing cancer in children.
186 parents whose child has been diagnosed with cancer responded to CLIC Sargent’s survey. Around 4 in 5 (79%) agreed that GPs need more training about children and young people’s cancer and 3 in 5 (62%) agreed that GPs had insufficient knowledge of the key symptoms of childhood and young people’s cancer.
A third said they felt their child had a delayed diagnosis, with just under half seeing their GP at least three times before their child was finally diagnosed.
In the survey the two most common reasons parents cited for a delayed diagnosis were misdiagnosing their child’s symptoms and seeing their GP many times before they were referred.
And of those who reported a delayed diagnosis for their child, around 50% felt the delay had affected the complexity and amount of treatment their child had to have, and 43% said that they felt the delay had impacted on the amount of side effects their child experienced from their treatment.
Many of those parents also agreed that the delayed diagnosis had impacted on their child’s emotional health (63%) as well as their own emotional health (81%).
Improved support needed
Lorraine Clifton, CLIC Sargent’s Chief Executive, says: “It is very striking that so many GPs feel that more could be done to help them identify suspected childhood cancer. And we are deeply concerned that so many parents feel that their child’s cancer diagnosis was delayed and tell us that they believe this had a negative impact on their child’s health and well-being, and their own.
"Because cancer in children is rare a GP may only have one or two cases in their whole career.
"We welcome moves by government and the NHS across the UK to address challenges in GP training and to increase the numbers of GPs available.
"We also welcome the focus on early diagnosis within cancer strategies. However, in light of the findings of this poll it is clear that a targeted approach to improving support for GPs in identifying childhood cancer is needed.”
During Childhood Cancer Awareness Month, CLIC Sargent is calling on health Ministers and NHS leaders in each of the four nations of the UK to make a statement on the action they are taking to:
- Increase training opportunities for GPs in identifying childhood cancer
- Provide greater opportunities for GPs to gain experience in the care of children and young people during their initial training
- Provide rapid access for GPs to paediatric specialists
- Investigate cases of childhood cancer diagnosed in A&E, and take action to implement any improvements needed.
It is part of the charity’s three-year Better Care for Young Cancer Patients campaign, 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 they, their families and health professionals have their voices heard by the government and NHS.
As part of the Better Care for Young Cancer Patients campaign CLIC Sargent will be conducting further research into the experience of children and young people when being diagnosed with cancer, which will be published in early 2016.
CLIC Sargent’s Childhood Cancer Awareness Month activity is in partnership with Network Rail.
For more information, an interview, case studies and pictures of children and their families, please contact Kat Baldwyn on 020 8752 2812 or email email@example.com. Outside office hours please call 08448 481 189.
ComRes interviewed 1,002 General Practitioners online between the 16 and 24 July 2015. Data are representative of all General Practitioners in the UK by former Strategic Health Authority region, with all respondents verified by their GMC number.
The full ComRes survey results can be found at www.comres.co.uk. ComRes is a member of the British Polling Council (BPC) and abides by its rules.
In August 2015 CLIC Sargent surveyed 186 parents of children diagnosed with cancer. All participants were self-selecting and were sourced through CLIC Sargent’s networks, our care professionals, as well as through social media.
The survey asked for parents’ reflection on their experiences of the time from when they first recognised their child's symptoms to finding out they had cancer.
CLIC Sargent’s recommendations for action on diagnosis have been designed with reference to the Royal Colleges of GPs Put patients first: Back general practice campaign and the Royal College of Paediatrics and Child Health Facing the Future: Together for Child Health standards.
September is Childhood Cancer Awareness Month
Charities and support groups which work with children and young people with cancer in the UK join together in September each year for Childhood Cancer Awareness Month, using the month to raise awareness of the impact of childhood cancer and the need for more support. The month is also marked by organisations and families affected by childhood cancer in other countries around the world, including the USA, Canada, Australia and Ireland.
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
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.