UPDATED: Blow for Ryah's family as PCT rejects plea to save fingers from amputation (From Bournemouth Echo)
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UPDATED: Blow for Ryah's family as PCT rejects plea to save fingers from amputation
8:54am Tuesday 19th February 2013 in News
Blow for Ryah's family as PCT rejects plea to save fingers from amputation
A CHRISTCHURCH family fighting to save their baby’s fingers from amputation have lost an appeal for PCT funding.
Martyn and Plamena Airey’s daughter Ryah was diagnosed with a rare blood vessel defect – high flow extremity AVM – just a few months after she was born.
The abnormality of nine-month-old Ryah’s arteries and veins affects the youngster’s left hand with specialists at Great Ormond Street Hospital recommending amputation of the affected finger.
But Martyn and Plamena want their daughter to be treated with embolisation – the usual treatment for AVM – before resorting to such extreme measures.
And after contacting specialists in America for advice on alternative treatment, the couple are due to fly out to New York on March 14 for Ryah to undergo embolisation after the doctor confirmed there was an 80 per cent chance of success.
The treatment will cost around $25,000 – £16,150.
But last week the family were told by Dorset PCT they wouldn’t fund treatment, as they could not find any evidence of “clinical exceptionality”.
In the letter to the family, the Trust also got the name of the treatment wrong – describing it as immobilization rather than embolisation.
Martyn, 45, said: “We still need the written information which tells us why they – Great Ormond Street – are not offering the embolisation.
“The PCT will not have seen letters from the doctor in America and I was under the impression they held a monthly panel to decide on matters of funding and look at cases on an individual basis.
“As far as I am aware this has not gone in front of a panel and they haven’t looked at it properly.
“But I still feel they are hiding behind the Great Ormond Street view and that is it, end of story.”
The couple are seeking legal advice, with Christchurch MP Chris Chope also pledging his support to the family.
A spokesperson for NHS Dorset said: “For reasons of patient confidentiality we are unable to discuss individual cases, however we can confirm that we have been in regular correspondence with the Airey family to explain the position of NHS Dorset and have written once again to express our apologies for the error in the letter date 13 February 2013.
"NHS Dorset can only consider individual requests for funding outside of existing pathways in line with the ‘Joint Commissioning Policy for Individual Treatment Requests if supported by a relevant NHS clinician”.
Comments(3)
anigel
says...
4:47pm Tue 19 Feb 13
Morrigan wrote:I find your dismissal of Gender Change operations as unnecessary cosmetic surgery to be disgusting. Gender Reassignment surgery has been shown to be very cost effective for the NHS and is normally shown to in fact save money over the expected costs to the NHS of not performing such surgery.
Would they consider setting up a "Just Giving" page for donations to fund Ryah's treatment in the US?
£16,000 is not a lot when you consider how much it costs to fund things like gender change op's and other unnecessary cosmetic surgery on the NHS and those get funded, as do many operations and surgical procedures for "treatment tourists" from Europe . It is so wrong for this baby to be denied this op here in UK, but I am sure people would be happy to donate to get the treatment to at least try and save her fingers.
If you would like to talk about unnecessary costs then lets stop funding any treatment for alcoholism, IVF and injuries caused whilst intoxicated. Those are all truly needless and unnecessary costs
jinglebell
says...
10:39am Wed 20 Feb 13
Or is it that it was checked but the person/people making the decision have no clinical knowledge? I have been given to understand that this is what happens; managers without clinical knowledge make the decisions based on monitory factors or as euphemistic language dictates they call it, "guidelines".
Meanwhile, we all watch as bankers continue to receive bonuses in the millions of £'s.....its all quite sickening.
Surely, this little child deserves to have every chance it can have - whether there is a 100% chance of success or only a 1% chance; its a chance that should not be denied.
Morrigan says...
12:10pm Tue 19 Feb 13
£16,000 is not a lot when you consider how much it costs to fund things like gender change op's and other unnecessary cosmetic surgery on the NHS and those get funded, as do many operations and surgical procedures for "treatment tourists" from Europe . It is so wrong for this baby to be denied this op here in UK, but I am sure people would be happy to donate to get the treatment to at least try and save her fingers.