A terminally ill woman is being forced to undergo gruelling 140-mile round trips from her home to hospital to get vital medical help.
Liz Currier, 68, suffers from motor neurone disease and has to regularly travel from her home in Billingshurst to St Thomas’s Hospital in London - after delays by health chiefs in introducing local respiratory services in Sussex.
Liz is one of many in a similar situation - some of whom are now refusing hospital treatment because of the arduous journey. “It’s horrendous,” said Liz.
Motor neurone disease is a fatal, rapidly progressing disease that affects the brain and spinal cord. It attacks the nerves that control movement so muscles no longer work.
Liz is now helping to spearhead a campaign organised by the Motor Neurone Disease Association aimed at getting better home care. The association, along with MPs from across the county, is lobbying for the vital service gap to be closed under the banner ‘Every Breath’.
A three year contract to provide respiratory services to people in their own homes was awarded to Brighton and Sussex University Hospitals NHS Trust, East Sussex Healthcare NHS Trust and Western Sussex Hospitals NHS Foundation Trust. But the three trusts later announced a hitch over costs, leaving patients having to travel to London for treatment – around 70 miles away.
Twenty three per cent of motor neurone patients in Sussex have declined referral to the unit because they can’t face the journey, says the Motor Neurone Disesase Association.
Liz herself was first diagnosed with motor neurone disease in 2015 after two years of tests following bouts of severe pain in her legs, feet and back. She was previously extremely active and enjoyed walking. Now she has to use a wheelchair and, she says, she’s getting progressively worse and relies on her two children and husband Ken, 77, for help.
“I have to ask my husband to do so much more,” she said. “Now I can’t even pick a weed up out of the garden.”
She added: “Having MND is challenging enough without having the hassle of travelling all the way to St Thomas’ to have my respiratory issues looked at. It can take us up to two and a half hours to get to the hospital and there’s often a lot of waiting. After the appointment we have to travel home through rush hour traffic. By the time we get back to West Sussex it’s very late and I’m exhausted. I find it all too much for me. There should be a facility for people in West and East Sussex where we don’t have to travel so far.”
Liz is already worrying about her next appointment, not wanting to miss out on the care and specialist advice she needs - “the professor I see is lovely” - as the disease progresses but is worried about making the trip.
The ‘Every Breath’ campaign is calling for the locally commissioned ventilation service to begin as originally commissioned, or for urgent interim arrangements for home-based respiratory care to be developed without delay so people like Liz can access support without leaving the county.