Tuesday, 21 September 2021

NHS won't fund sight saving drugs for local boy

A COUPLE fear their young son could go blind after being denied drugs readily available elsewhere in Britain that could save his sight

A COUPLE fear their young son could go blind after being denied drugs readily available elsewhere in Britain that could save his sight.

Riley Salter, seven, was diagnosed with uveitis, an inflammatory eye condition, in August 2013 and already has problems seeing out of his left eye.

He has to take steroid eye drops and injections of methotrexate, which is used to treat autoimmune conditions.

But his parents, Robin and Becca, of Stoke Row Road, Peppard Common, say that long-term use of the drops can cause complications such as cataracts, which he has already developed in his right eye, and glaucoma.

Riley?s condition could be treated more effectively by the drugs Infliximab and Adalimumab. Both are readily available in Scotland and Wales but not funded in England while their use is standard practice in many other countries.

NHS England says there is insufficient evidence to recommend routine use.

Henley MP John Howell has taken up the family?s case and has written to Health Secretary Jeremy Hunt asking him to intervene.

The Salters have to ensure they protect Riley?s right eye from infections and injuries, especially when he goes to his school, Stoke Row Primary. Mrs Salter, 38, a payroll manager, said: ?I?m just so scared of him going blind and how would he cope and how would we cope? It makes me want to cry. The idea of him not being able to see? I can?t put it into words.?

Her husband, an engineer, added: ?It?s not correctable by glasses. His left eye has been damaged so we have to protect his right at all costs. We?ve very nervous about protecting it so we send him to school with sports goggles.

?The added frustration is that there are treatments that are widely available elsewhere which a huge body of research shows are effective.

?It?s a stressful scenario having a child with a chronic condition and then having to buy the drugs.?

Riley, whose left eye deteriorated after he suffered a blood clot as a result of his condition, also has a weakened immune system so his parents take extra care to ensure he doesn?t pick up infections at places like swimming pools.

He currently takes methotrexate, which is also used in chemotherapy treatment, once a week.

Mrs Salter said the drug stopped the autoimmune system ?attacking? the eyes.

Riley also takes steroid eye drops at least one a day and sometimes up to six times a day if his condition deteriorates. His mother explained: ?They do work but the level which he?s taking them causes cataracts and glaucoma and he?s got a cataract developing his right eye.

?We?re not talking about him going blind tomorrow but in 10 years? time.

?It?s horrible because you have to give him an injection of chemotherapy drugs once a week.

?It?s not the same dose as if you?re being treated for cancer bit it?s the same side effects ? nausea and tiredness and he bruises incredibly easy.

?Riley also has to have monthly blood tests to make sure his liver isn?t damaged.? NHS England decided this month not to fund the two drugs that the Salters require but may but might review this after the results of trials in October.

Adalimumab would cost the couple about £10,000 a year to fund themselves and Infliximab about £17,000 plus hospital costs.

Mr Salter, 38, said: ?Basically NHS England have said they won?t fund this drug routinely but might do under exceptional circumstances.

His wife said: ?It?s the injustice of it that really gets me, how the drugs can be prescribed in Scotland and Wales but not in England.

?They have said it?s not a funding decision but I think it is does come down to that because the clinical evidence is there.

?Realistically we can?t move to Scotland or Wales, we have got jobs here and Riley goes to school here.

?If there?s a chance of Riley going blind we would self-fund but it wouldn?t be easy.

?We would like NHS England to fund it for everyone who needs it. There are parents out there whose children are in worse situations than Riley whose children could go blind.

?I feel strongly that children shouldn?t be in a position where they are allowed to go blind where there?s a drug that?s proven to be effective.?

The couple, who also have a four-year-old son Zack, first detected Riley?s condition during the school holidays in 2013.

Mrs Salter spotted that he had a red, watery eye and thought he was suffering from conjunctivitis. Eye drops didn?t work so she took him to their doctor who said he suspected Riley had uveitis.

They were referred to the Royal Berkshire Hospital in Reading where they discovered both of his eyes were affected and he was diagnosed with idiopathic uveitis, where the cause is unknown.

In October 2013 he was admitted to the Great Ormond Street Hospital in London as an emergency after the blood clot in his left eye caused him to go temporarily blind.

Now he has a reduce field of vision and blurring in his left eye.

An NHS England spokeswoman said: ?These are really difficult decisions, which is why we always make use of the best available evidence as well as extensive engagement with experts, patients and the public.

?We did consider whether to routinely commission these treatments last month but on this occasion, due to the lack of published evidence on whether the treatment is effective, the policy was not supported.

?Expert groups have been set up to consider the potential for new policies on uveitis based on clinical trial results which we expect will become available later this year.?

Mr Howell said: ?I?ve written to Jeremy Hunt to raise the case so I hope something can be done to help him.

?It?s very sad that the drugs are available in other parts of the country but not here and it?s precisely that point I?m raising with Jeremy Hunt.

?Anything we can do to help this young man will be much appreciated.?

There is an online petition calling on NHS England to reverse its decision. It can be found at http://chn.ge/1MMaZqS

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