Helping Tonia Thousands sign petition calling for better treatment of condition
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