‘Abandoned’ after MND diagnosis
Dad with terminal illness tells of service ‘delays’
A DAD-OF-ONE with a terminal illness says he felt “abandoned” by his local NHS services after his devastating diagnosis.
Bob Gledhill, 52, was told he had motor neurone disease (MND), a progressive condition which affects the neurones in the brain and spinal cord, last October.
The condition leads to severe muscle weakness and can affect walking, talking, eating, drinking and even breathing. The typical life expectancy is between two and five years from the point of diagnosis. While MND patients in other parts of Wales are automatically referred to specialist units in England, Carmarthenshire resident Bob says this is not the case in West Wales.
A DAD-OF-ONE with a terminal illness said he felt “abandoned” by his local NHS services after his devastating diagnosis.
Bob Gledhill, 52, was told he had motor neurone disease (MND), a progressive condition which affects the neurones in the brain and spinal cord, last October.
The condition leads to severe muscle weakness and can affect walking, talking, eating, drinking and even breathing. The typical life expectancy is between two and five years from the point of diagnosis.
While MND patients in other parts of Wales are automatically referred to specialist units in England, Carmarthenshire resident Bob claims this is not the case in West Wales.
Following diagnosis, he said he experienced delays in accessing local neurology services due to alleged staffing issues.
The family were also frustrated at the lack of specialist information and opportunities to take part in clinical trials in Wales.
“Following the trauma of the diagnosis, I felt abandoned by local services – what I really needed was a prompt referral to a specialist MND centre,” he said.
“It was also difficult to get hold of detailed information about the disease and how best to manage it. We had to undertake our own research into supportive therapies such as nutrition and exercise, drug therapy and access to clinical trials.
“We contacted the Oxford MND Care and Research Centre ourselves and found them extremely supportive, however I’m still waiting for a formal referral to the centre. Coping with the diagnosis would have been easier had we had immediate access to such a centre.
“Despite this terrible
diagnosis, as a family we are determined to live each day to the full. I want to stay active for as long as possible and I really hope to be able to take part in a clinical trial. To be able to contribute to MND research and make a difference for others in the future is hugely important to me.”
Bob’s wife, veterinary specialist Dr Lowri Davies, said trying to get a formal diagnosis for her husband proved more difficult than they had envisaged.
“In the autumn he started to show weakness in his left hand. He’s a keen mountain biker and had fallen off a few times so we initially thought it was something to do with that,” she recalled.
“We sent him to see a physiotherapist in Carmarthen who immediately sent him to the GP. He was then sent for a neurology appointment.
“We saw a locum neurologist in Carmarthen which was a bit disastrous because in the consultation he said to me ‘well, what do you think it is?’ We came out of there none the wiser.”
The family managed to get an appointment with another neurologist in Gwent who said his symptoms were the telltale signs of early MND and ordered tests to be
“I want to stay active for as long as possible and I really hope to be able to take part in a clinical trial
Bob Gledhill
“Despite this terrible diagnosis, as a family we are determined to live each day to the full
Bob Gledhill
carried out back in Carmarthen.
Lowri, from Rhydargaeau near Carmarthen, said it was at this point that Bob’s care started to “fall through the cracks”.
“From the first week of October through to December we failed to get any input from the neurology department in Carmarthen. Every time we phoned they said the neurologist was on holiday or his secretary was away. We were pretty much abandoned.”
The family claims Hywel Dda University Health Board has effectively “blocked” the family from seeking specialist support in Oxford as there are neurology services on their doorstep, which they have found tough to access.
“All we are asking for is to have access to clinical trials, such as the re-purposing of drugs for other uses. We weren’t asking for any kind of treatment,” Lowri added.
Bob, who now has weakness down his left side and is unable to do simple things like tie his shoelaces, is now on end-of-life care as nothing can be done to cure his MND.
But that hasn’t stopped him, along with Lowri and their teenage son Will, 16, from taking part in an ambitious fundraising challenge in July.
The ‘Motoron Cymru’ challenge will see them take on the Welsh Three Peaks, cycling between each peak, over the weekend of July 2-4.
Money raised from the challenge will go towards the My Name’5 Doddie Foundation, set up by former Scottish rugby international Doddie Weir.
Bob, who has already walked and cycled hundreds of kilometres as part of his preparation, said: “Staying upbeat is extremely important in coping with this awful disease, and for us as a family, the challenge is giving us a practical focus.
“Family, friends and colleagues will be joining me on this challenge and their support at this time is keeping us going. Positivity also means being part of a larger community trying to find a treatment for MND.”
Bob and Lowri said they wanted to share their story so that other neurology patients in the region do not experience the same delays as them.
He concluded: “I’m determined to keep on going and to fight for greater support for MND patients in West Wales, raising awareness of this cruel disease and helping find a cure. I want to help others down the line and avoid more sufferers being placed in my situation.”
Lowri added: “We’ve changed Bob’s diet, we’re in control of his exercise, he’s getting acupuncture three times a week. We’ve done lots of proactive stuff, but a lot of people won’t have the wherewithal to do these things.”
In response to the family’s claims, Mandy Rayani, director of nursing, quality and patient experience for Hywel Dda University Health Board, said: “While we are unable to comment on individual patient cases, we do take all complaints very seriously and are in direct contact with Mr Gledhill about his concerns.”