A DEVASTATED mum who is living with a rare form of cancer has been told she cannot have life-transforming treatment on the Welsh NHS.
Lian Gittus said she now faced a less effective course of treatment at Swansea's Singleton Hospital after losing her funding appeal for proton therapy in America.
A specialist has told the 33-year-old, from Godre'graig, that if she lived in England she would be sent to the US for her treatment.
But because she lives in Wales she has missed out on the precise form of radiotherapy, which can target cancer down to a hair's breadth — because of her age.
The Welsh Health Specialised Services Committee (WHSSC) has confirmed that proton beam therapy is commissioned on a limited basis for Welsh patients.
Mrs Gittus, who was diagnosed with Ewing's sarcoma last autumn, is now being given receptor medicated radiotherapy (RMRT) instead.
She said: "I was gutted when I found out that my funding appeal has been turned down because of my age.
"I am 33 but the cut-off for treating the disease with proton therapy in Wales is 16.
"Even though it is rare for an adult to get it, they turned my appeal down because of their guidelines and criteria — it feels like another kick in the teeth.
"They are playing with people's lives — I am shocked."
Mrs Gittus originally put the funding application in on March 4 for her treatment and expected to hear back 10 days later.
But she wasn't told until April 2 that her appeal had been rejected, despite the office of Neath AM Gwenda Thomas taking up her case.
Mrs Gittus said: "Although there have been a number of fundraising events taking place I have basically run out of time and I have had to start conventional radiotherapy in Singleton Hospital. I have been told that if I lived in England the specialist would send me for proton therapy in America, but because I live in Wales there may not be funding to send people abroad for treatment.
"It's like a postcode lottery."
Friends and colleagues of the PCSO (police community support officer) have been rallying around her by holding a number of fundraisers.
A team of five of her workmates took part in the Llanelli Half Marathon and officers from South Wales Police climbed Pen-y-Fan in the Brecon Beacons.
And events including a major fundraiser at The Towers, in Jersey Marine, were held to help raise £140,000 towards privately funding her treatment.
Their incredible efforts saw £10,000 raised in a short space of time — the cash will now go towards covering the Mrs Gittus's daily travel to Singleton Hospital for treatment.
Her husband Jason, 38, has had to give up work as a BT manager to care for his wife as she undergoes six weeks of radiotherapy.
The rare form of cancer on the spine led Mrs Gittus to go from being fit and active to being hardly able to walk. She had hoped proton therapy would be able to allow her to have a normal life.
"I even spoke to a professor in America who wanted to look at my medical notes," she said.
"He said that the disease was treatable with proton therapy and would respond very well, but he suspected that the NHS Wales criteria would not let me travel.
"If I had proton therapy it would have possibly saved me from having a hip replacement in 10 years time.
"I could now be looking at brittle bones, a hip replacement and a secondary form of cancer because of this form or radiotherapy."
Mrs Gittus said she wanted to thank everyone in the community, including Sue Handley, the head teacher of Dwr-y-Felin School in Neath, friend Cathy Sharps and workmate Catrin O'Brian for all their fundraising support.
She said: "The support I've had from the community has been humbling."
A Welsh Health Specialised Services Committee (WHSSC) spokesman said: "The WHSSC does not comment on individual patient cases.
"We are, however, happy to discuss any issues patients or their next of kin may have directly with them.
"Proton beam therapy for Welsh residents is currently commissioned on a very limited basis for a small number of providers outside the UK.
"All potential cases are assessed by the UK clinical advisory panel for proton beam therapy, which then makes recommendations for treatment.
"All recommendations must be approved by WHSSC on an individual basis.
"There are no plans to change this process at this point."
![Cancer mum: 'It feels like a kick in the teeth — I am shocked']( "Cancer mum: 'It feels like a kick in the teeth — I am shocked'")
