A WINCHESTER mother joined a group of women at the House of Commons to discuss improving services and care for child cancer sufferers.

Kirsty Lomas attended as her daughter, Lily, had a rare form of cancer.

The schoolgirl, who lives in Bereweeke Avenue with her mum, dad and two siblings, first noticed a lump towards the end of 2020.

Kirsty said: “I was honoured to be able to support Charlotte Fairall and Dame Caroline Dineage at the debate on Tuesday. It's ridiculous that such an important debate hasn't taken place in the House of Commons before.

“Our daughter Lily was diagnosed with an undifferentiated soft tissue sarcoma in December 2020 and we were shocked to discover how little funding is put into childhood cancer research - less than four per cent which just isn't good enough. The majority of drugs used to treat childhood cancer were created for adults and the newest of the five chemotherapy drugs that Lily was treated with was approved in 1987! If children survive, the side effects of these drugs can be life lasting.

“Lily currently has no evidence of disease, despite the cancer being very aggressive and I think a lot of this is because she was diagnosed early. Lily is very much in the minority with early diagnosis and a lot of families spend months going back and forth to the GP's, by which point the cancer has progressed and often spread. Childhood cancer needs to stop being referred to as rare. One in 450 is not rare, 12 children being diagnosed a day is not rare. GPs need to be given more training so it is always considered as a possibility.”

MPs heard Sophie Fairall, from Hampshire, died last September some 12 months after she was diagnosed with a very aggressive form of cancer known as rhabdomyosarcoma.

Conservative former minister Dame Caroline Dinenage, leading a parliamentary debate in the girl's memory, said Sophie's list was "very special" due to its desire to help others - including improvements to hospital food.

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Dame Caroline, MP for Gosport, told the Commons: "During her illness, Sophie created a bucket list. It included lots of fabulous things.

"She wanted a pair of high heels, she wanted to cook with Gordon Ramsay.

"But Sophie's list was very special because she also wished for improvements in the way that we look after others who are in the same position as herself.

"She wanted better facilities for children in hospital wards and from her bed she painted ceramics which were sold to raise £6,000 to buy new toys for her ward.

"Most hospitals only have play specialists at very limited hours and there's no data collected on the number of play specialists working in the NHS, so on Sophie's behalf I'd ask the minister to look at the provision of play specialists.

"Sophie also wanted better hospital food for poorly children and she was worried about the parents who spent hours at the bedside and often didn't get to eat at all.

"Often during her own treatment Sophie felt poorly at the point of set meal times, but later when she was feeling a bit better there was no capacity at the hospital to make her anything to eat."

MPs heard Sophie's mother Charlotte has vowed to continue the campaigning work in a bid to improve research, detection, treatment and care for children with cancer.

Conservative MP Flick Drummond suggested having a "national campaign on the signs and symptoms of childhood cancer", and also called for "better training for GPs and nurses alongside more funding for research".

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Health minister Maria Caulfield acknowledged the importance of nutritious food in hospital, adding: "We are working extremely hard to improve hospital food following the publication of the independent review in October 2020."

She noted several recommendations were made and an NHS England-led three-year plan was under way to implement them, adding: "I'm hoping Sophie and her family will be pleased we're making some progress with that."

Ms Caulfield also said the Government's recently announced 10-year cancer strategy sought to tackle many of the issues raised in the debate, noting: "It's a great opportunity to put forward the case for childhood cancers."

She offered to meet Dame Caroline to discuss further her ideas.

Kirsty said: “The response from the MP's was really positive. They were all on the same page across parties, but we were very disappointed with Maria Caulfield's response. It was factually incorrect and dismissed the evidence laid out. She has since agreed to meet with Dame Caroline and Charlotte who will continue to fight until change is made.”

Message from the editor Kimberley Barber

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