Bolton mum tells of cancer red tape 'heartbreak' over her son

Elliott Simpson is suffering from worsening skin cancer but is barred from receiving the second set of drugs be needs to combat its spread by 'rigid rules' governing their use.

To make matters worse for the 26-year-old if he had not also suffered from Crohn's disease he would have got both courses of treatment automatically.

Elliot Simpson

His mother Sonia Littler, 51. of Eldercott Grove in Deane, is devastated by the bureaucratic deadlock.

Elliott, of Green Park Close in Mill Hill, was diagnosed in December 2020 with the skin cancer metastatic melanoma after noticing a mole on the back of his skull.

When doctors began preparations to remove the growth in March 2021 they discovered it had spread to his liver.

Elliot with girlfriend Courtney

The recommended treatment was two courses of immunotherapy drugs - nivolumab and ipilimumab - available on the NHS as two-stage treatment.

But because the finance officer working with the East Lancashire Hospitals Foundation Trust suffered from the inflammatory bowel infection Crohn's disease the two could not be administered together for fear of worsening it.

The nivolumab cleared his liver cancer and appeared to make progress against the melanoma - although his bowel did become inflamed and he had to have part of it removed anyway in May 2021.

However the skin cancer reappeared and now Elliott's consultants at the Rosemere Cancer Unit at the Royal Preston Hospital want to move to the second stage of treatment using both drugs.

But guidelines from the National Institute for Health and Care Excellence prohibit this.

How his family and medical team are appealing this decision and Blackburn MP Kate Hollern has written to Health Secretary Sajid Javid asking for the cabinet minister to set aside the 'peverse' rules and personally authorise the treatment

Elliott, who has a brother Tomas and a girlfriend Courtney Whittingham, said: "It has been an 18 month nightmare.

"I cannot believe I can't get the treatment I need because of NHS red tape, especially as I could have had both drugs at the beginning if I did not have Crohn's disease.

"I am incredibly frustrated."

Elliot with brother Tomas

Miss Littler said: "Elliott is my son. He's a good young man.

"This is heartbreaking especially knowing the drugs are available on the NHS - but not to Elliott.

"I want him to have a life - a long life and to enjoy that life to the full.

"It is ridiculous and wrong that he cannot have a treatment now that he could have had 18 months ago but for his Crohn's disease."

His father Hugh Simpson, 55, said: "I am pretty angry.

"These are rigid rules and Eliott's cancer is not rigid. There needs to be come flexibility so he and others in the same position can get this life-saving treatment."

The family have launched a Go Fund me page 'Elliott CAN beat skin cancer' to try and raise the £120,000 need to pay for the treatment privately.

Elliott has been chosen by the Teenage Cancer Trust to front a campaign for May's Skin Cancer Awareness month.

Mrs Hollern tells Mr Javid in her letter: "There is some vitally important and potentially life-saving treatment that it is hoped Elliott might benefit from.

"The particular frustration is that the best treatment would be to have both the first line AND the second line together, and had this been agreed at the start of Elliott's treatment it would have been funded.

"It would seem that NICE rules have no flexibility to allow for changes in circumstances

"This position seems to me to be quite perverse - with bureaucracy standing in the way of potentially life-saving treatment.

"In light of this I would be grateful if you could personally intervene to allow the funding of my constituent's healthcare."