Ex-nurse Hayley Crawley says she ‘wants to see my son grow up’
A mum who is dying from cancer has to raise £240,000 to secure a drug which could extend her life after she was told by the NHS she cannot access it.
Hayley Crawley, 49, was diagnosed with bowel cancer three years ago and underwent months of intense chemotherapy and radiotherapy.
However, she was later told that her cancer had become terminal after spreading through her liver, lymph nodes and lungs. She then had to tell her son Callum, 11, the devastating news that his mum was dying.
“It was one of the most heart-wrenching things to have to do,” Mrs Crawley said.
“I have had to have some conversations with my son that you just shouldn’t have to have with your child.
Hayley with her husband Jim and 11-year-old son Callum
“We decided honesty was the best policy and we saw Callum improve once he knew exactly what was gong on.”
In the last three years, Mrs Crawley, a former nurse at Hull Royal Infirmary, has carried on fighting the cancer with the support of her husband Jim, 57, and Callum.
However, she has now been told the effects of her current chemotherapy are starting to wear off – meaning she will die unless another treatment is found.
Determined to find a way to extend Mrs Crawley’s life, the family started researching and came across a potentially life saving drug called pembrolizumab.
The immunotherapy drug is available in America and for a limited amount of cancers in the UK, but the National Institute for Health and Care Excellence (NICE) won’t supply it for her particular type of rare bowel cancer.
The Crawleys put in for funding from the NHS but this was rejected, meaning they have had to set up a Go Fund Me page to raise the money needed, which amounts to an eye-watering £240,000.
“This is the last chance saloon for me and it’s like having a lottery ticket that you can’t cash in,” Mrs Crawley said.
Hayley is desperate to secure pembrolizumab
“The tumour is growing which means my chemo is losing its effectiveness. I’m due another scan in a fortnight so I can’t see it being better than it was.
“There is another course of chemotherapy available to me that I was on when I was first diagnosed but that put me in hospital for five weeks.
“I was so seriously ill and I am not sure I could tolerate it again because I am weaker than I was before.”
In just over two weeks, the Crawleys have managed to raise an incredible £15,000 and they’ve been amazed by people’s generosity.
Mr Crawley said: “It has been fantastic. It’s not a happy story but we have made it as happy as we can and we have all grown as a family.
“If Hayley died tomorrow she would know that there has been a massive outpouring of love for her.”
Despite having to go through gruelling fortnightly bouts of chemotherapy, Mrs Crawley insists she is a fighter and is determined to make every second count for the sake of her family.
However, part of that fight will see her and her family continue to raise awareness of their current situation in the hope that other families can gain access to pembrolizumab in the future.
“I don’t want people to think we are self centred,” Mrs Crawley said. “We are trying to tackle this for the benefit of other people.
“As a mum I want to see my son grow up but I’m not going to be able to do that if I don’t get that drug.”
A spokesperson for NICE said: “NICE has been asked to look at pembrolizumab to treat people with a specific type of advanced bowel cancer. Work will begin on this appraisal one the drug is licensed for use in England.
“Until NICE issues guidance, NHS England and local health authorities make their own decisions about whether to provide funding.”
A spokesperson for NHS England said: “Treatments can only be made available in the UK if a manufacturer obtains authorisation from the European Medicines Agency.
“The manufacturer will decide to apply for authorisation depending on factors such as whether the drug has proven effective in clinical trials.
“Once licensed the drug would need to be considered by either NICE or NHS England to determine if it will be funded on the NHS.”