USA OP COULD STOP PARALYSIS
ASTUDENT left in permanent pain by two rare conditions faces becoming completely paralysed as her health worsens.
Lisa Llewellyn, 46, was studying at the Faculty of Oriental Studies at the University of Oxford when she went in to have back surgery at University Hospital Llandough in Penarth to fix a slipped disc more than 10 years ago.
But after the surgery Lisa developed multiple rare disorders completely unrelated to her initial condition – and is still in agony a decade later.
Her 63-year-old mother, Marion, was forced to give up a job as a tutor to care for her daughter at their home in Grangetown, Cardiff.
Lisa said: “The last 10 years have had a big impact on the quality of my life.
“I’m living in complete isolation. I’ve got no independence.
“I can’t cook, can’t read or do anything for myself. It’s devastating.
“It’s been really difficult. Mum was a tutor and had to give up her job. She had to give up her life to take care of me. We just are on our own. “I just want my life back.” From the initial surgery in 2007 until 2016, Lisa and her brother Nick said they consulted 21 senior consultants in the UK, both in the NHS and the private sector, but still had not got a diagnosis, treatment or pain management.
The family had to raise money to go abroad to Europe and the US to find out what was wrong.
In June last year Lisa and Nick travelled to Washington in the USA to consult with a pioneering neurosurgeon who diagnosed Lisa with underlying Ehlers Danlos Syndrome (EDS), a rare disease that affects around one in 5,000 people in the UK.
It is thought that EDS, a connective tissue disorder, may have been exacerbated by a rupture to Lisa’s spinal cord membranes in 2007, which was left undiagnosed.
Lisa was also diagnosed with Atlanto-Axial Instability (AAI) which is a complication of EDS that results from excessive movement. It means blood supply to her brain is being seriously compromised and her head and neck require stabilisation, using bone marrow harvested from her hip mixed with crushed bone from a bone bank. Lisa was also diagnosed with Tethered Cord Syndrome (TCS), a stretch injury of the spinal cord that has led to irreversible spinal cord and spinal nerve damage that has permanently affected her bladder.
Lisa has to undergo a surgical release of the spinal cord followed by lumbar stabilisation using bone graft and fusion.
If her health continues to deteriorate she could be left fully paralysed, with her life at risk.
The pair were told Lisa could have surgery and rehabilitation in the USA to fix the problem. But now they have to raise around £200,000 to pay for the operations, travel, accommodation and other expenses.
The family did apply to the Welsh Health Specialist Services Committee to fund the surgeries in America but they rejected Lisa’s application, saying the panel requires an NHS neurosurgical opinion.
Lisa says there is no-one qualified enough in the UK to provide their opinion.
“There are no NHS neurosurgeons that have the skills and expertise,” she said. “There’s a lack of continuity on the best approach to treat the illness that I have.
“We’re just going round in circles. I just can’t seem to win.
“It’s been a never-ending nightmare.
“I woke from surgery to a traumatic situation that is still ongoing. I have been forced to persevere until the pain and anguish stops. I hope that’s soon. I am completely exhausted.”
In the meantime the family have tried to meet Welsh Health Secretary Vaughan Gething, who is also their local AM, but have so far been unable to.
Marion said the family felt that “no-one is helping us”.
She added: “We hope that our strength and persistence to fight for specialist treatment and justice will be a catalyst for change in human rights and healthcare for Lisa and others.”
Dr Graham Shortland, executive medical director at Cardiff and Vale University Health Board, said: “We are very sorry to hear about Lisa Llewellyn’s ongoing health problems.
“The health board fully recognises the need and responsibility in continuing to support Ms Llewellyn with her ongoing health needs.
“With regard to accessing treatment in the US, both the health board and WHSSC (Welsh Health Specialised Services Committee) have advised that there is a defined process.
“The Individual Patient Funding Request (IPFR) allows patients whose request is supported by an appropriate clinician to access treatments not routinely available on the NHS.
“This single process aims to ensure fairness and equity for all patients.”
Dr Sian Lewis, medical director for the WHSSC, said it was unable to comment on individual cases.
“IPFR requests are carefully assessed through the all-Wales Individual Patient Funding Request Panel... our commitment is to the provision of treatments that deliver the best evidenced outcomes, cost effectively, so that treatment can be made available fairly to all patients.”
Health Secretary Mr Gething has written to the WHSSC requesting they respond formally to the family.