My girl's broken bones were a sign of CANCER

Brave Ruby, left, with her mum Josie

WHEN Ruby Connar was eight she fractured her wrist. It was put down to a normal childhood mishap but six weeks later she did it again to another part of her wrist.

 

In the following six months, Ruby suffered a further four breaks, including her elbow and wrist, all from seemingly innocuous incidents.  

“Ruby was a very active, healthy little girl, always running about, climbing and swimming,” says her mum Josie, 46. 

“She went from being a girl who ran everywhere and loved climbing to not being able to walk at all and having to use a wheelchair.” 

Despite numerous visits to A&E and the GP, the family from Cranbrook, Exeter, had no idea what was wrong with Ruby until November 2011 when a bone marrow test at Bristol Royal Hospital for Children revealed she had acute lymphoblastic leukaemia (ALL). 

ALL is a cancer of the white blood cells that begins in the bone marrow. It can affect young people of any age, but it is most common in children aged one to four. 

Provided it is diagnosed quickly, survival rates for this type of cancer are good. In those aged 14 or younger, nine out of 10 will beat the disease. 

By the time Ruby was diagnosed, the medics treating her believed she had lived with the disease for 10 months. 

 

Ruby's cancer was not spotted straight away

“If they’d not discovered it, she would only have had weeks to live,” says Josie. 

Had Ruby been diagnosed earlier maybe she wouldn’t have this condition

Josie, mum

 

“It was absolutely dreadful. I thought that I was dealing with the imminent death of my child.” 

She adds: “I was cross with the GP because it took so long to find out what was wrong, but a nurse at the hospital made me realise how rare it is that GPs come face to face with a child with cancer.” 

New research commissioned by the children’s cancer charity CLIC Sargent has revealed that a lack of available training is one of the biggest barriers GPs face in identifying cancer in children and young people. 

Parents of children diagnosed with the illness have reported delays in the time taken to have their child diagnosed after first visiting their GP – just under half had to see their GP at least three times before their child was finally diagnosed. 

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. 

The charity is now calling for improved support for GPs in identifying childhood cancer to help combat the impact a delayed diagnosis can have. 

CLIC Sargent asked more than 1,000 GPs across the UK to indicate barriers they faced in identifying cancer in children and young people. 

Almost half (46 per cent) said not enough training available and almost a third (32 per cent) said a lack of awareness of the symptoms were among their top barriers to being able to diagnose the disease.  

“It is very striking that so many GPs feel more could be done to help them identify suspected childhood cancer,” says Lorraine Clifton of CLIC Sargent. 

“And we are deeply concerned that so many parents feel their child’s cancer diagnosis was delayed and tell us that they believe this had a negative impact on their child’s health and wellbeing – 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. 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.” 

Dr Martin English, the Royal College of Paediatrics and Child Health’s oncology expert, says children require specialist care designed to meet their specific needs and therefore require health services that reflect this. 

 

“Children’s cancer services are no exception – cancers affecting children are often different to the conditions adults get,” he says. 

“One in four patients seen by a GP are children, so one element of this is ensuring that they are confident in spotting the sick child and signposting them to the correct service at the earliest opportunity.”

For the Connar family, CLIC Sargent provided a lifeline. 

“Everything was a blur after Ruby was diagnosed,” says Josie. 

“We were taken to a ward and I slept beside her on a pull-out bed. A lady from CLIC Sargent gave us information packs and some money towards travel expenses. She also told us about the Home from Home in Bristol (CLIC Sargent has nine Homes from Home around the UK, located near seven principal treatment centres, where families can stay for free so they can be close to their child during treatment). 

“It meant that Ruby’s brother Jack, 22, could come up to stay. They are very close and he was able to help her walk her first few steps, which was amazing. Ruby has coped with everything tremendously. She is such a positive and inspirational little girl.” 

Although Ruby, now aged 12, is in remission after finishing two-and-a-half years of treatment in January, she has developed a condition called avascular necrosis, which has caused her joints to crumble. 

It may have been brought on by the cancer treatment and steroids she received but Josie says: “Had Ruby been diagnosed earlier maybe she wouldn’t have this condition. It’s not the GPs’ fault, but there is a lack of awareness of childhood cancer. There should be more training available.” 

• September is Childhood Cancer Awareness Month. CLIC Sargent is the UK’s leading cancer charity for children and young people and their families, providing clinical, practical and emotional support to help them cope with cancer and get the most out of life. For more information please visit clicsargent.org.uk