Help­ing To­nia Thou­sands sign pe­ti­tion call­ing for bet­ter treat­ment of con­di­tion

Gloucestershire Echo - - NEWS - Melissa JONES [email protected]­plc.com

THOU­SANDS have signed a pe­ti­tion call­ing for im­prove­ments in the way a young woman and other pa­tients with Eh­lers-dan­los syn­drome are treated.

To­nia Cheney, from Tewkes­bury, has spent sev­eral weeks ‘trapped’ in a Span­ish hos­pi­tal af­ter she col­lapsed on a plane as it came into land.

She was on the way to Barcelona to talk about the next stage of her treat­ment but ended up in a med­i­cal­lyin­duced coma at the Bel­lvitge Univer­sity Hos­pi­tal.

Ef­forts to bring her home have stalled as her mum Vic­to­ria claims the NHS in­sists 22-year-old To­nia must re­turn to a hos­pi­tal she doesn’t want to go to again.

They started a pe­ti­tion to Boris John­son call­ing for an in­de­pen­dent en­quiry into the si­t­u­a­tion, which has at­tracted more than 17,000 sig­na­tures.

It needs to reach 25,000 to be con­sid­ered by the gov­ern­ment.

To­nia posted on Face­book that she is ask­ing for ‘ap­pro­pri­ate care un­der the NHS (UK) in a care cen­tre that is spe­cial­ist for my con­di­tion.’

The pe­ti­tion page de­scribed it as ‘a

life and death si­t­u­a­tion that should not ex­ist in 2018 in a civilised coun­try like the UK.’

“The dis­charge doc­u­ment from the won­der­ful clinic in Barcelona is be­ing ig­nored and Mother Vic­to­ria and brother Samuel have to stand by and watch the de­te­ri­o­ra­tion as she re­ceives only some of the same med­i­ca­tions that she was be­ing given be­fore the surgery which were clearly not suf­fi­cient for her very com­plex con­di­tions,” it claimed.

“Vic­to­ria is An­to­nia’s carer 24/7, she is ex­hausted and yet faces what­ever ev­ery new day throws at her, whether it be a seizure, res­pi­ra­tory fail­ure, sep­sis, any­thing at all.

“As close friends we are try­ing to find a way to get some ac­tion, some help and ex­pose the si­t­u­a­tion for what it is, to­tally un­ac­cept­able.

“Un­for­tu­nately, un­less some­thing is done very soon, An­to­nia could be yet an­other in the long list of EDS pa­tients who lose the bat­tle for life.”

Vic­to­ria says her daugh­ter is in­volved in a le­gal bat­tle with the hos­pi­tal over a pre­vi­ous stay and claims to have record­ings and writ­ten dec­la­ra­tions from To­nia say­ing she never wants to go back to the John Rad­cliffe Hos­pi­tal again.

Last year she was flown to a hos­pi­tal in Barcelona to have a spinal fu­sion oper­a­tion that was not avail­able on the NHS and was re­turn­ing to the Span­ish city to dis­cuss the next steps when she fell ill.

To­nia had to have a tra­cheostomy as her air­way was un­sta­ble.

The Ox­ford Univer­sity Hos­pi­tals NHS Foun­da­tion Trust, which runs the John Rad­cliffe Hosp­tial, has de­clined to com­ment on the al­le­ga­tions.

The For­eign and Com­mon­wealth Of­fice are sup­port­ing the fam­ily.

An NHS Eng­land spokesman said: “De­spite the rar­ity of Eh­lers Dan­los syn­drome the NHS does fund surgery when it is rec­om­mended by clin­i­cians, but the de­ci­sion to un­der­take such com­plex pro­ce­dures has to be based on whether the ben­e­fits to the in­di­vid­ual pa­tient out­weigh the risks.”

It is es­ti­mated one in 5,000 peo­ple are af­fected by the con­di­tion glob­ally, which af­fects the body’s con­nec­tive tis­sues.

Symp­toms in­clude an in­creased range of joint move­ment and stretchy skin.

As close friends we are try­ing to find a way to get some ac­tion, some help and ex­pose the si­t­u­a­tion for what it is, to­tally un­ac­cept­able.

To­nia Cheney af­ter a pre­vi­ous treat­ment in Spain

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