Russell Fleming, Content Manager, ME Association.
Y Byd ar Bedwar produced a really good documentary about M.E. and the lack of healthcare provision in Wales although many of the issues raised are just as relevant to the rest of the UK.
It first aired on 4th June 2019 and the reporter was Anwen Jones. You can watch the film via S4C with English subtitles. Or it can be found on BBC iPlayer again with English subtitles. Both are available for at least the next month.
ITV also ran a report that featured Natalie Price on its website – Fit and active Cardiff woman left bedbound after developing ME – that includes extracts from the main documentary. The report also includes a statement from the Welsh Government and a short video extract from the film.
The following are selected highlights from the documentary film based on the English subtitles:
Are ME patients being wronged by the government and NHS in Wales?
Behind this window, Natalie Price lives her life. “Natalie has just started on the nebuliser for tonight.” For a year the condition M.E. has kept her confined to her bed.
Tonight, we’ll see the effects of the illness, through the video diary of her fiance, Jonathan Vaughan, “I’m watching someone I love disappearing really slowly. It’s taken Natalie from me to quite an extent.”
There’s fierce debate among scientists about the causes and treatments for M.E. But patients complain there’s a lack of specialist services for them in Wales. “In England there are a few clinics dotted around. But we have nothing here in Wales,” Rhian Linecar.
Some experts say the 13,000 or so who live with the condition are being neglected.
|“The response from the Welsh Government over the years has just not been satisfactory. It hasn’t made the progress that it should have done. People in Wales are no nearer to getting these services,” Dr Charles Shepherd, Hon. Medical Adviser, ME Association.|
Natalie met Jonathan five years ago. But it became obvious quite quickly that she wasn’t well.
“She had problems with kidney infections. Every time she did anything, going for a long walk even, her kidneys would start playing up. I thought, ‘That’s odd’, but we couldn’t find a link,” Jonathan Vaughan.
Natalie was raised in Cwmbran after moving there from Stoke when she was three. When she met Jonathan, she was a student at Cardiff University. She enjoyed running and travelling, and loved playing with her dog.
But after collapsing several times at university and at her part-time job, she underwent a series of tests. In 2014, she was diagnosed with M.E.
|“A GP said three things to Natalie that day. One – ‘You have M.E.’ Two – ‘I don’t know much about it. There are no specialists in Wales.’ Three – ‘Try Google’,” Jonathan Vaughan.|
The couple had planned to get married two years ago. But because of Natalie’s illness, arrangements had to be cancelled.
“We had to put it off. We know we’re going to be together anyway. We don’t need a piece of paper for that. But it’s still sad. I should be able to call her my wife now, but I can’t. That hurts.” Jonathan Vaughan.
This is how Natalie spends her life now. She’s sensitive to light and sound and is in constant pain. She rarely speaks and can’t cope with seeing anyone but her closest family and friends.
“She went to see the doctor in June 2018. That’s the last time she went downstairs. She’s been in bed since then.” Jonathan Vaughan.
On a good day, she can listen to an audiobook on her phone. But often she does nothing but lie down in silence and darkness. Not everyone who lives with ME suffers as much as Natalie.
Rhian Linecar lives in the Vale of Glamorgan. Two years ago, she was struck down by sepsis and E. coli. Though that cleared, she was still fatigued and in pain. Last year, after five months of going to see different doctors, she was diagnosed with M.E.
“Sometimes, I feel like my head is burning inside. It’s a headache. It’s not like a migraine. Migraine tablets don’t work. It’s like a cloud. A grey cloud sometimes. A dark cloud. It’s quite dark today. I can’t see properly. I feel ill.” Rhian Linecar.
She was ordained a priest by the Church in Wales four years ago. But says her illness prevents her from doing the work she’d like. She loves walking and travelling but can’t do this anymore.
|“It’s had a huge effect on my life. It’s changed everything for me, for my husband Peter and my entire family. I can’t do what I used to be able to do with the family. I don’t have the energy to do things with my grandsons. That’s very hard,” Rhian Linecar.|
“Very often, especially at night I’ll have pain in all my muscles. If I’ve done too much during the day it’s as if my body fights back in the middle of the night. I get pain in the strangest of places.”
Though Rhian feels she’s sailing against the wind, the NHS recognises M.E. as an illness. But there is a difference of opinion about the condition.
The guidance for doctors currently recommends two treatments for those living with M.E. CBT, cognitive behavioural therapy and GET, graded exercise therapy. But there are disputes about these treatments.
A study know as PACE found there was strong evidence to support using these methods to improve the symptoms of M.E. But some scientists, doctors and patients have questioned the study. Critics say that the conclusions are misleading. A number of patients and charities say that the GET treatment, more exercise, can exacerbate the condition.
The authors of PACE vehemently defend their study. But NICE, the body which sets guidelines for doctors have announced they plan to review the treatments for M.E. The conclusions of the review will be published in late 2020.
“People just don’t understand. It’s hard. It’s hard even for people who live with someone who has the condition to understand. But doctors really don’t understand the condition as a whole,” Rhian Linecar.
This was discussed in Westminster at the start of the year.
|“There is currently no cure. Many with the condition experience inadequate care and support. But there are an estimated 250,000 people in the UK suffering from M.E. and currently, we are letting these people down,” Carol Monaghan MP, Glasgow North-West.|
MPs made several complaints on behalf of constituents. That doctors don’t understand M.E.; current treatments don’t work and that there’s a lack of research into the disease.
In London Ben Lake told me he was going to express his views after constituents contacted him with their experiences of living with M.E. He’s glad that NICE are reviewing the available treatments.
“A lot of concerns and complaints have reached me from M.E. sufferers that some of the treatments, especially ones involving doing more exercise, don’t always help. Occasionally, they make things worse. I would like that to be looked at specifically.”
The Ceredigion MP also told me that more research needs to be done into M.E. to help doctors treat patients properly. “For those suffering from M.E. there is no quality of life. One person said it’s a life sentence. So, I would argue there’s a very good case for increasing funding set aside for researching the condition.”
Research in Wales
A scientist at Cardiff University is leading a study into M.E. which has been funded by charities. I went to find out more about the research.
“We’re getting a group of people with ME/CFS and a group of healthy control people and we’re activating their immune systems with a very mild challenge – it’s actually a regular typhoid vaccination,” Prof. Neil Harrison.
Volunteers are having an MRI scan after receiving a typhoid injection. It’s expected that they’ll be more activity in the brains of those who live with M.E. compared with healthy volunteers. That would show that the immune system is working harder.
The research won’t be published for a year and a half at least. But scientists hope it’ll prove that M.E. causes changes in the brain and that it’s not a psychological condition.
|“Showing that there are changes within the brain in response to this inflammation gives us much clearer insight into the fact that ME/CFS is a brain disorder and that it is at least partially in response to the immune system’s effects on the brain,” Prof. Neil Harrison.|
Frustrated and desperate
The research hasn’t helped doctors in treating patients up to now. Dr Ian Harris is a member of BMA Cymru. He says that doctors’ hands are tied by the NICE guideline. He’s also frustrated there are no M.E. specialists in Welsh hospitals.
“We don’t have the facilities to send them to hospital to see a consultant and to access treatment. It can be frustrating for us as doctors and for the patients,” Dr Ian Harris, GP.
In Grangetown, Cardiff, they are just as frustrated. Jonathan and Natalie have been fundraising online for experimental treatment… But there’s no certainty the treatment will help Natalie nor anyone else living with M.E.
In a nearby café, Jonathan explained that they’ve raised money to buy three pieces of equipment after receiving advice from an ME expert in the private sector. “They’ve done trials with dementia. It showed it can work. So, there’s no reason why it can’t work with M.E. But it’s expensive,” Jonathan Vaughan.
They’ve managed to raise over £3,500 in a month. They don’t expect to receive treatment like this on the NHS, but they said they turned to the machines after reaching the end of their tether with the lack of support they feel they’re getting from the NHS.
This is totally experimental. “It’s completely experimental. The problem with M.E. is nothing has been proven. Anything experimental must be looked into. We have to look into it too,” Jonathan Vaughan.
Lack of government action
I’ve heard many complaints about the provision in Wales. At his home in Gloucestershire, I met Dr Charles Shepherd who advises the ME Association. He’s critical of the way M.E. is treated in England, but says things are worse for Welsh patients.
“The situation in England is not perfect, but at least we do have a network of hospital-based referral services. Whereas in Wales where there aren’t hospital-based referral services for people to go to, it’s even worse,” Dr Charles Shepherd.
He’s been involved in a taskforce to improve provision for patients in Wales. The Cardiff Bay government made many recommendations five years ago. But Charles Shepherd says not enough has changed for patients in Wales.
“I think the response from the Welsh Government over the years has just not been satisfactory. There has been a taskforce set up. It has been doing this work for many years. But it hasn’t made the progress that it should’ve done. People in Wales as far as I can see are no nearer to getting these services.”
We’ve been asking the Welsh Government for almost a month to respond to the concerns raised on this programme. But no-one’s been available to talk to us. In a statement they said they understood the challenges faced by people living with M.E and the impact it can have on them and their families.
They said they’re working with healthcare professionals and the third sector to strengthen M.E. services available across Wales. Jonathan is frustrated there’s no more help available for people like Natalie who’ve been ill with M.E. for years.
“It’s almost five years now. All we’ve got from the government is ‘we are looking at ways to help people with M.E.’ Something needs to change. Help is needed from the top for that to happen,” Jonathan Vaughan.
|Welsh Government Statement:|
“We understand the challenges faced by people living with this condition and the impact it can have on their lives and their families.”
“That is why we are working with healthcare professionals and the third sector to strengthen ME services available across Wales, this includes piloting the use of digital technology to support the delivery of our care programmes.”
“We recently launched guidance for health and social care professionals to support people who have been in pain for longer than 12 weeks. Living with Persistent Pain Wales also provides information about treatment approaches to patients and to their families.”
Source: ITV News Report.
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