Omagh mum furious after son denied life-changing treatment

AN Omagh mum has spoken of her extreme frustration after a potentially live-saving treatment was denied to her son.

Pearl McFarland explained that her son Seth (11), who has a severe allergy to peanuts, had initially been put on a waiting list for the transformative ‘Palforzia’ drug by the Western Trust. However after a series of delays, the possibility of treatment was eventually withdrawn.

Delivered under clinical supervision, the idea with Palforzia is that after six-months a patient’s immune system adapts and any reaction to peanuts is significantly reduced from severe to minimal.

Seth, who was diagnosed with the nut allergy at just nine months old, was first considered to be an ideal candidate for Palforzia.

“Seth has been in and out of hospital his whole little life with various reactions,” Pearl recalled. “We were in hospital at least once a month with him.

“His most severe reaction was when he was three and he ate something from the butchers. Both his epi-pens were administered, and he was blue lighted to Altnagelvin. It was terrifying because we didn’t know what caused it; it was due to cross contamination.”

When the local mum heard about Palforzia she contacted the hospital straight away and suggested that Seth needed to be on the list for treatment. They said yes, he would be an ideal candidate and he ticked all the boxes.

“To get that relief as a parent is absolutely amazing Not only would it change his life but would also change our lives. It meant we could give Seth that little bit more independence especially now as he is moving to secondary school,” Pearl said.

FUNDING

Whilst the Department of Health has reserved funding to implement Palforzia treatment the Western Trust have said they do not have the infrastructure to offer it.

Pearl continued, “The timeline for starting (Palforzia) kept changing and we eventually got the phone call to say it wouldn’t be going ahead at all. We are left so disheartened and let down especially by our local Trust because it (Palforzia) seems to be just sitting with them at the minute. It’s just so frustrating because the Department of Health have the money waiting for them.”

Pearl feels that in general, people don’t understand how difficult life can be for a child with a nut allergy.

“Simple things like going out with friends to the cinema; worrying if the person beside him eating nuts. You never switch off; your mind just goes through every possible scenario,” she said.

“We have always been able to protect him but that’s not going to be the case now as he gets older. With him changing schools soon there won’t always be an adult with him all the time.

Derry woman, Julie Carlin’s daughter Eva (11) was also due to start the treatment with Seth. They too have been left in limbo when Palforzia treatment was pulled.

Julie said, “I’m utterly shocked because the department are saying they have secured and reserved funding for the treatment to be implemented regionally since March 2022… (but) since funding has been released over two years ago there is not one child who has been offered this service in Northern Ireland.”

Pearl believes it is essential this treatment is rolled out throughout the country.

“We are fighting for Seth and Eva but as life-threatening allergies are massively on the rise, we are fighting for every child in Northern Ireland.”

Dr Helen Evans -Howells a NHS GP and allergy specialist who runs a private allergy clinic in England believes the fundamental problem stems from the fact that the NHS does not have enough allergy services.

Speaking to the Tyrone Herald, Dr Evans said, “People are massively underserved if you have allergies in the UK and waiting times are long. A recent study shows that 95 per-cent of people with codes for allergies have never seen a specialist…

“It isn’t fair that people aren’t being given this life-changing treatment.”

When contacted this week in relation to Palforzia and asked why it isn’t being made available to people like Seth, a spokesperson for the Western Health and Social Care Trust (Western Trust) said, “The Trust is committed to providing the best possible care for the treatment of allergies. Regional work is ongoing under the direction of the Child Health Partnership to introduce this therapy and we will continue to work closely with our colleagues in the Department of Health and HSC Trusts to establish an appropriate service delivery model going forward.”