Max Boyce calls for better awareness of Motor Neurone Disease following death of Michael Griffiths

Max Boyce on the 'cruel' disease which killed his close friend

The singer, comedian and entertainer Max Boyce is calling for better support and research in Wales for Motor Neurone Disease (MND), following the passing of his dear friend last year. 

According to Max Boyce, from Glynneath in south Wales, MND is the “cruellest of diseases” and more should be done in Wales to support those diagnosed with the condition.

MND is a rare disease affecting the brain and nerves. The condition causes weakness in the body that gets worse over time, and it has no cure. 

In an interview with Current Affairs programme, Y Byd ar Bedwar, Max Boyce described his late friend Michael Griffiths, a former rugby player, as a “much loved” and “larger than life” character.

In January 2020 Michael was diagnosed with MND, but by the following October, he’d passed away at 60 years old. 

Although the singer praises the support his friend received locally, he says more should be done in Wales to develop research for the condition.

“We didn’t seem to have any support from the experts, there was nobody we could turn to, there was no help. It was sad to see that there were no clinical trials in Wales like they have in Edinburgh in Scotland."

Taking matters into their own hands, both the family and the community came together to raise money for Michael to be involved in experimental drug trials in America, but the plans had to be put on hold. 

“We, as a community, were adamant that we would do whatever it took,” said Max Boyce. 

“We raised the money and then of course Covid struck and we couldn’t even send him for these trials out in America... It was an awful time for the family.”

Amy, Michael’s daughter, still remembers the day her father was diagnosed. 

“I just remember saying to my Dad - basically you’ve been given a death sentence, and that’s how heartbreaking it was. 

According to Amy, Covid meant that the care her father received wasn’t good enough. 

“It was so disheartening for dad, we just felt like we were left behind. We would meet with the consultant every 3 months on zoom… The occupational therapist wasn’t allowed to the house. Without us pushing it and without the community and the rugby club around us, I feel for the people who don’t have that. It’s just awful, it’s really really sad."

'Something should be done and must be done'

Having struggled to find support for his friend and Michael’s family, Max Boyce is calling on the Welsh Government to do more. 

“We have to find more research to find a cure for this most cruel of diseases…it’s a shame that communities like us have to raise money to send people to America for clinical trials.

“I know it’s difficult and these times are even more difficult, but we have to… if people saw how cruel that disease is and the affect it has on the families as well, something should be done and must be done.”

Swansea Bay Health Board have offered their condolences to Mr Griffiths’ family for their loss. According to the health board, face-to-face appointments couldn’t take place during the first year of the pandemic to protect staff and patients.

It added that it participates in as many research studies as possible, and that Mr Griffiths did contact about participating in a trial known as MND Smart. However this has taken time to set up in Wales and they are only now in a position to start contacting people who had expressed an interest.

Responding to a Freedom of Information request by Y Byd ar Bedwar, the Welsh Government say there’s no specific funding for MND research in Wales but they do dedicate a pot of money worth fifteen million pounds every year to the Welsh NHS for research on a range of conditions. 

The figures from the request show that last year, only 0.2% of people selected for research in Wales had MND, meaning less than thirty thousand pounds of the Welsh Government’s money was spent on research for this specific condition. 

Seven in every 100,000 people in the UK are affected by MND, around 200 people in Wales. 

One who’s currently living with the condition is Bob Gledhill from Carmarthenshire. Bob was diagnosed with MND in October 2020, a diagnosis that came as a shock to his family. 

“It was awful. I could work out by looking at him that he’d lost a lot of muscle” explained Lowri, Bob’s wife. 

“I knew that something was seriously wrong but when somebody tells you that it’s MND and then having to break the news to our son, it wasn’t a nice experience.” 

After diagnosis, Lowri says they contacted Hywel Dda health board several times, but it took nearly two months for the local MND service to get in contact, a length of time which disappointed the family. 

“Nobody could get Bob to the local MND service, nobody wrote a letter and everytime I rang them the neurologist was off, or his secretary was off…all I wanted to know was could Bob have medication? Could he be part of a trial?” 

Bob and Lowri were told last July that SMART trials for MND were coming to Wales and that they would be recruiting people with MND across South Wales to take part. But they weren’t given a date or a location for the trials until last month. 

After nine months of fighting for better treatment, Bob will be taking part in a trial next month at The University Hospital of Wales in Cardiff- but he and his family say they feel precious time has been wasted due to the lack of support and knowledge in Wales.

“They’re not going to come up with a solution in these trials that’s suddenly going to help me. It’s too late for that” said Bob, 53. 

“But it may well be that someone else sitting here in 5 years time who has a diagnosis of MND, immediately knows ''these are the tablets you need to take now” or “this is the protocol that you need to follow. We now know about this because we studied it, we looked into it.” As I say, it’s unlikely to help me - it’s too late, really.”

Sharing the same frustration, his wife added: “It was bad enough to get the diagnosis, but when you’ve got to fight against the system, it was heartbreaking at times. That’s what makes this so frustrating, you just feel like nobody cares.” 

Hywel Dda Health Board said whilst it cannot comment on individual cases, it has a team of people who are part of the MND Network which aims to give patients a good quality of life from diagnosis to death. It added that it follows the relevant guidelines and conducts assessment every three months to assess patients’ symptoms and needs.

In a statement, the Welsh Government said it is working with the Neurological Conditions Implementation Group and health boards to ensure people with neurological conditions receive the help and support they require. According to the government, it also wants to grow the range of MND studies being carried out in Wales, building on the current SMART trial.

Y Byd ar Bedwar will air on 16/03/2022 at 20:25 on S4C. English subtitles are available.