‘If the treatment doesn’t work, they tell you to go home and enjoy the time you have.” (From York Press)

‘If the treatment doesn’t work, they tell you to go home and enjoy the time you have.”

9:42am Friday 20th April 2012 in Health & Wellbeing By Gavin Aitchison & Richard Catton

FAMILIES of child cancer victims have to spend hundreds of thousands of pounds on treatment abroad, because British care is not good enough, it has been claimed.

North Yorkshire families and national campaigners today called for a rethink on NHS care for young victims, to prevent families having to spend huge amounts of time and money flying to the United States or Germany for treatment.

John Inglis, father of York neuroblastoma victim Jamie, and Katie Clifford, mother of two-year-old Sadie Rose who has been fighting the condition most of her young life, led the calls for change.

Mrs Clifford, of Knaresborough, said she felt let down that the UK had no action plan for children with the disease.

She said: “When we were in America, we met a few families from Norway who have had everything, from treatment to living costs, paid for by the Norwegian government, and this makes us feel let down by our own.”

Mr Inglis said he hoped to organise a meeting in York for affected parents, and said he was looking to lobby on the fact that families were “having to put themselves through this”.

He said neuroblastoma affected about 100 new families a year, but said every family he knew would prefer treatment in the UK, and he now wanted to lobby the Government and NHS bosses to provide better care for victims who relapse.

He said: “Here, it is almost as if they have written children off. We know it is an aggresive cancer and the chances are not good. But in the US, kids live to their teens. Here, they hit relapse and it is not good. They give chemotherapy, but if the treatment does not work, they tell you to go home and enjoy the time you have.”

He praised the treatment in Germany and America, where he said antibodies and viruses had been developed to attack the cancer, and said it gave families more hope.

He said: “Kids can have a good quality of life. Jamie had a good quality of life, and maybe that treatment he had has bought him two years, so it was worth that £350,000.”

He said the Neuroblastoma Alliance was supporting 17 families, potentially at a cost of £500,000 each.

He said: “They have been very supportive and we are hoping to have a conference with the neuroblastoma alliance in May up here in York.”

John Rogers, secretary of a group of families affected by neuroblastoma and whose daughter, Stella, underwent treatment in Philadelphia at the same time as Jamie Inglis, also called on the Government to do more.

He said they should invest in research so breakthrough treatments could be developed here, should try to cut through red tape so promising treatments developed elsewhere could be made available more quickly in Britain, and should fund any British families in the meantime that had to travel abroad.

He said: “Even if we gave £100 million tomorrow, it would take years to do anything. The best chance you have got is making the treatments being developed abroad available here more quickly.

“We will not change things overnight – people will still have to get on planes. There is talk about making the German treatments available here, but it will take years. In the meantime, children are going to die.”

He said that 20 years ago, virtually nobody survived neuroblastoma, but now about two-thirds of children treated by the specialists in America lived for at least five years.

Mrs Clifford said: “Because neuroblastoma isn’t one of the most common forms of cancer, no one wants to fund research, and this is why we have to raise hundreds of thousands of pounds to get treatment abroad”.

Meanwhile, Mr Inglis said: “I think there is an ethos that because you have such an aggresive cancer and the prognosis is not good, they give up. It’s very disheartening. We know this cancer could beat Jamie in the end – but we will not go without a fight.”

Yesterday, The Press reported four year-old Thomas Cammack from Selby, had lost his battle with neuroblastoma on Wednesday.