The mother of an inspirational teenager who died from cancer has donated all money from a legal case relating to her daughter’s initial care to a charity supporting other young people battling the illness.
Hope Rooms, of East Yorkshire, was aged just 12 when she was diagnosed with cancer, as a tumour grew in her abdomen, pushing her spine out of place.
She died at home in February 2016, aged 14, two years after being diagnosed, but her death came as a shock to her family as she had been given the all-clear just four months earlier, with the cancer unexpectedly returning.
Hope’s mother Julie has always questioned the treatment her daughter initially received from Hull and East Yorkshire Hospitals NHS Trust, feeling doctors at Hull Royal Infirmary should have sent Hope for scans and investigations, and to be assessed by specialists in Leeds, much earlier than she was.
Hope spent a week in Hull Royal Infirmary crippled with back pain, and was found to have three litres of fluid on her chest when admitted to hospital in January 2014.
Despite saying she repeatedly voiced her concerns that cancer could have been the cause, Mrs Rooms said those concerns were too easily dismissed, with Hope being discharged home.
It was a month later, throughout which time Mrs Rooms says Hope suffered continued unbearable back pain, numbness in her legs and barely moved off the sofa at home, that she was finally sent to specialists in Leeds after returning to Hull Royal Infirmary at their GPs advice, and the tumour was found.
Mother was convinced doctors had failed to diagnose cancer
Although Hope was later given the all-clear, Mrs Rooms says the initial assessments of her daughter’s illness has highlighted a need for both parents and doctors to ask more questions when young people are suddenly taken very ill.
Mrs Rooms, 51, said: “Apart from one symptom, which was head headaches, Hope ticked every box for the signs of childhood cancer, including weight loss, dizziness, lack of appetite and breathing problems.
“We never saw the same person twice at first, which created problems because everybody told us something different. When she finally got to Leeds, she was under a different medical professional who looked at the bigger picture.
“As her mum, I knew it was cancer. Her mood was different and, for me, the main sign for anyone, young or old, is unexplained weight loss without dieting.
“If people are not sent for scans and investigations sooner, it could be fatal in other cases. It’s not just children and I don’t want anyone else to go through that. It’s your worst nightmare and hell on earth. Cancer should always be a first thought.”
Hospital Trust pays damages following legal claim over delayed diagnosis
Hull and East Yorkshire Hospitals NHS Trust initially told Mrs Rooms the working diagnosis had been an infection following Hope’s initial hospital admission, when the fluid on her chest was drained.
It said she was discharged as it was deemed suitable to treat her at home on oral antibiotics with a follow-up plan in place. The hospital said she was ‘clinically improving’ and that it would not be unusual for a child of her age to take some time to make a complete recovery.
Medical negligence specialists Hudgell Solicitors supported Mrs Rooms in challenging the initial care provided to Hope relating to the four-week delay between her first admission and the correct diagnosis.
The Trust has now paid damages as a result, which Mrs Rooms has donated to Candlelighters.
Mrs Rooms said: “There is no way I’m going to make a profit out of what was supposed to have been compensation for Hope’s suffering. She can’t receive it, so I’d like it to benefit others going through the same thing.
“Candlelighters have bought a cottage for families of children with cancer to stay in while their child is in hospital and it’s going towards that.
“Finding somewhere to stay while your child is in hospital is so hard on top of everything else you are already going through, so this is really positive.
“Since Hope was diagnosed, we have raised more than £16,000 for Candlelighters as a family and my husband, David, is running five marathons this year.
“We’ve had fantastic support from family, friends, neighbours and work colleagues.”
Delayed diagnosis of serious conditions ‘very worrying’
Lauren Dale, of Hudgell Solicitors, said: “Julie and her family have been through a very difficult few years with the tragic loss of Hope. But they have been determined to ensure that lessons are learned and to urge other parents to demand full investigations and answers from doctors if their child is suddenly taken ill.
“In this case, there was a four-week period where cancer was not considered to be the cause of her illness when she first went into hospital. Although Hope was later given the all-clear before the cancer suddenly returned, it does highlight how serious illnesses can be missed at initial assessments, something which is very worrying with life-threatening conditions.”
Settlement donated to support families of children treated for cancer
The Candlelighters Trust is Yorkshire’s preeminent children’s cancer charity, providing practical, emotional and financial support to children living with cancer in Yorkshire and their families.
Hope won awards and recognition for her bravery and courage after being diagnosed with cancer, speaking out about her experience and how she was ‘living with cancer’ and remaining positive.
Marie Peacock, Head of Income Development at Candlelighters, said the donation will be put towards renovating a cottage for families whose children are being treated at Leeds Children’s hospital for cancer.
The current accommodation has an average of 10 families on a waiting list each night, which means a parent is either away from the child with cancer or away from their siblings for extended periods of time.
Marie said: “Staying together helps families to keep a sense of normality at a time when it can feel like everything around them is falling apart.
“By providing accommodation for families, we will also help to alleviate some of a family’s financial concerns and at least some of their worries, as there can be a severe financial impact of having a seriously ill child in hospital so far from home.
“The donation will be put towards the general refurbishment of the cottage, providing comfortable and homely surroundings for families who have a child on the ward at that time.
“Their specific donation will leave a lasting legacy in memory of Hope and is a very generous way to give something back, so we would like to thank Julie and her family.”