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
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”.