A Saint teenager with “catastrophic” disabilities is to be given a desperately-needed operation in the UK – but only after three National Health Service trusts REFUSED to treat her.
St Helena’s chief justice, Judge Charles Ekins, said it was “shameful” that three hospitals apparently could not afford to take her, even though she was entitled to NHS treatment.
The 19-year-old girl, who can be referred to only as K, has severe deformities in her arms, “useless” lower limbs, and severe spasticity – among other conditions. Her profound learning difficulties mean she can barely communicate.
She was due to sail for Ascension Island on 21 April 2015 to meet a dedicated medical flight, but the judge said it would too dangerous to send her with no hospital prepared to receive her.
Only after she had missed the boat was a place found for her at the world-leading Nuffield Orthopaedic Centre, part of the Oxford University Hospitals Trust. The centre has a reputation for taking difficult and expensive cases from outside its own area.
She must now wait until 11 May 2015 to leave the island – where she could not safely have the operation she needs to amputate parts of her legs and ease her enduring pain.
K was discovered by Paul Bridgewater, a newly-arrived social worker, living in Barn View in Longwood, a “care home” used mainly for elderly people.
Mr Bridgewater had her moved to hospital but she was moved back to Barn View, only to be re-admitted – malnourished and suffering a serious ring worm infection.
Her condition is so severe she has to be kept lying down.
The island’s Supreme Court has been given responsibility for taking decisions about K’s care now that her mother is ageing.
A solicitor in England, Michael Trueman, has been appointed to act on her behalf. It was through his efforts, and the commitment of a consultant surgeon at the hospital, Mr Tim Theologis, that a solution was found.
K’s operation was recumbent by a visiting surgeon on St Helena, Sergio Villatoro Bran. He advised removing both her legs from above the knees – bilateral supracondylar amputation.
The hope is that it will make her more comfortable and reduce the risk of a fatal infection.
Judge Ekins pointed out that a protocol with Britain allows four St Helenians to be treated by the NHS each year. He made a point of saying that K is a British citizen – interpreted by some as a way to interest UK media in her case.
In a judgement issued on 23 April, he said: “Three NHS consultants had been approached by the date of the RMS St Helena’s departure.
“None would undertake to admit K. A response is still awaited from the last enquiries made.
“The risk to K of embarking up upon a passage to the UK without a hospital to receive her is unacceptable.
“I cannot think that the decision to refuse to admit K to the trusts approach is a clinical one… it seems to me to be likely therefore that the decision in each case is resource based.
“If that is indeed the case then the situation is a shameful one.”
He said the urgency of the case meant he would have to send her to South Africa if treatment is available there – “a much less preferable option in terms of K’s welfare.”
The High Court in England would take over responsibility for her in the UK. It is not clear what legal arrangements could be made in a foreign country.
K’s mother has been praised by the judge for trying to ease her daughter’s suffering, but he said she was “getting on in years” and there were concerns about her ability to take decisions about her daughter’s needs.
Judge Ekins said she had “been active over the years in doing her best to provide K with such suplementary comfort as she has been capable of.”
In 2012, Barn View, conditions at Barn View were severely criticised in a report by the Lucy Faithfull Foundation. Most of the report – on alleged abuse on the island – was kept secret, but a draft version was leaked.
It said a 16-year-old girl – thought to be K – was sharing a room with a dying elderly woman at the home.
Allegations of a cover-up of abuse, and the governance of the island, are now being investigated by Sasha Wass QC. She is understood to have asked for information about Barn View.
Judge Ekins included politicians in his criticism of K’s rejection by the NHS.
He said: “For some time now it has been claimed that the UK’s economy ranks amongst the wealthiest in the world. It is boasted that the UK’s economy ranks comfortably amongst the largest ten economies in the world.
“Political parties of every hue claim that the UK NHS is or will be safe in their hands.
“The two former make it even more shameful that it is apparently difficult, if not impossible, to afford treatment to a young British citizen with such catastrophic disabilities who is entitled to be treated by the NHS in the UK.
“The latter of the claims referred to frankly rings entirely hollow.”