How St Albans man won battle against NHS for drugs to save his sight

John Hunt (Image: Archant)

John Hunt, 47, who grew up in the city and attended Verulam School, has suffered from ankylosing spondylitis – an arthritic chronic condition – since he was 18 years old.

An associated disorder is uveitis, which has worsened since June last year, robbing him of some of his vision, which is rapidly diminishing.

Top eye medics at Moorfields and Luton and Dunstable Hospitals told John last year he would lose his sight completely unless switched from Infliximab infusions to Humira injections.

But for five months it was consistently denied on funding grounds.

John works in St Albans as a computer-assisted designer for Aecom in Victoria Street, but has been off since November, unpaid, due to illness.

With his wife Sarah, he has a four-year-old daughter and a baby due in a few weeks. Now the family hopes his sight and arthritic symptoms will improve and intend to make an official complaint over the delay.

John’s mum, Gloria Challis, of Downedge, Redbourn, 70, told the Herts Advertiser that both her sons inherited the disease. Her younger son Martin, 43, has been on Humira for 10 years and his eye condition is under control.

It was recommended by four consultants at three hospitals as the only possible treatment for John. But he was told he would not be given the drug, as NICE guidelines state it can’t be funded if a patient switches from one drug to another.

Mrs Challis explained: “If you or I went now with this condition, we would be given that but they wouldn’t let him have it because he was already on something that costs ten thousand pounds per year more and wasn’t working.

“Where’s the sense in that? It’s cheaper to give him the drug that consultants agree will save his sight. But they kept saying he can’t because the CCG [Clincal Commissioning Group] won’t agree to fund it – it’s just not logical.”

Now they are all hopeful that the treatment will mean John is better able to see their second daughter, when she is born at the end of this month. The pregnancy was overshadowed, they say, by the unnecessary worry. And worsening sight and mobility problems meant John was often confined to his Kensworth home in Beds.

His sister Claire Gillies said: “We were desperate. We tried MPs and appeals. Funding was denied on the grounds of it being outside of the NICE guidelines and not a cost-effective use of NHS resources.

“You can apparently only switch treatments if the one you are currently on is a conventional drug and the Infliximab is not on the conventional list. Ironically the treatment he was denied costs a great deal less than the one he was on and not responding to.”

But the third time they appealed to the Chiltern CCG, after months of his family and consultants begging and fighting on his behalf, John was granted his wish by health bosses - and he began the treatment last Friday.

Mrs Challis added: “What about those who don’t keep trying? They will get worse. He just gave up. If we had not kept going back and asking them to reconsider, he would just have gone blind. He was depressed and frightened and didn’t have anything in him to fight, so we had to.

“How can they have overridden what three top consultants wanted him to have? How can people sit there on a panel and act as a jury? The doctors wanted him to have it – not because they would get something out of it but because it was what is best for their patient.”

“We are really pleased he’s been given it but why was there such a delay, during which time his eyesight deteriorated? Now he’s worried it’s not going to work. Would the outcome have been better if there had not been a delay?”

A spokesman for NHS Chiltern Clinical Commissioning Group said: “We are unable to comment on individual cases. However, we understand it can be distressing for any patient if a treatment they want is not routinely available on the NHS. When a treatment is not offered by the NHS, an Individual Funding Request (IFR) can be submitted by the clinician requesting the treatment.

“Some treatments will only be offered if certain criteria are met. Many NICE recommendations include criteria patients must meet to receive a particular treatment. If NICE publish a new recommendation, a treatment previously refused may then be eligible for funding.”