The ME Show

Episode Nine - Carol Monaghan MP

March 25, 2019 Season 2 Episode 9
The ME Show
Episode Nine - Carol Monaghan MP
Chapters
The ME Show
Episode Nine - Carol Monaghan MP
Mar 25, 2019 Season 2 Episode 9
Gary Burgess
Gary Burgess speaks to Carol Monaghan MP, a staunch supporter of people with ME who's arranged a number of Westminster debates - most recently in January this year.
Show Notes Transcript

Gary Burgess speaks to Carol Monaghan MP, a staunch supporter of people with ME who's arranged a number of Westminster debates - most recently in January this year. Gary spoke to her in the week ME was making the headlines after a psychologist announced he was stopping his ME research because of bullying, and Rod Liddle wrote a comment piece in the Sunday Times mocking people with ME for believing their illness was "real".

Carol Monaghan's website: http://www.carol.monaghan.scot/
Michael Sharpe's interview on BBC Radio 4 (2 hours 46 mins in): https://www.bbc.co.uk/sounds/play/m0003cth
Rod Liddle's Sunday Times column: https://www.thetimes.co.uk/article/always-fatigued-yet-they-never-tire-of-claiming-their-malady-really-is-a-virus-d7s7qlvbk

You can follow Gary Burgess on Twitter @GaryBurgessCI and please use the hashtag #TheMEShow in any posts.

Speaker 1:
0:07
Hello. I'm Gary Burgess. Welcome to the Emmy show, supported by the Emmy Association. In this series, I'm meeting the experts and advocates working to raise awareness and understanding of all things and me. In this episode I'm speaking to the MP Carol Monahan. I spoke to her in 2018 and the first series of the Emmy show because she just arranged a debate in parliament. Well, she's done two more since then and it's turning into a real advocate for the Emmy, a community, a timely moment to speak to Carol because in the past week there's been some rather controversial journalism linked to Emmy. You'll hear more about that during the course of our conversation. Carol Monaghan NP. Welcome back to the Emmy show. How are you today?
Speaker 2:
1:03
I'm fine. Thanks daddy thing so busy and parliament this week. As you can imagine, sober burl Cain of funding debate like headless chickens, but not really normal trying to achieve so it an infesting teams. Why? Is there anything going on? I hadn't noticed. No, not much. Well, actually that isn't much problem. We should actually be with 10 days to go doing an awful lot more than we're doing at the moment. Yeah. Anyway, that's, that's, that's the state of affairs.
Speaker 1:
1:31
That's just the very last mention of the B word of Brexit for this podcast. Let's get onto the Emmy words. I spoke to you last year in series one of this podcast and I didn't know too much about you. I didn't know lots about Emmy even at the time as I was learning about my own diagnosis. Uh, and another time you told me your plan in parliament was a slowly, slowly catchy monkey approach to get more politicians to understand Emmy and, and the highs and the lows and the problems and the research and everything else around that. And, and since then, uh, you've, you earlier this year established a debate in the House of Commons that, that that is huge progress.
Speaker 2:
2:11
Yes, it was. It was really good actually. I mean, very fairly pleased about that, but it's essentially his third debate retired over the last 12 months. But the first two were in Westminster Hole. The Westminster Hall is a debating chamber in parliament. There's a much smaller chamber and wouldn't be recognized easily. But this debate that we had in January was in the main chamber, um, and was extremely well attended and attended. So it was, it was excellent showcase
Speaker 1:
2:42
and it's not a given that it's well attended because these Thursday debates are often on the day when politicians are heading back to the constituency to do home business. But actually you had a really good set downs.
Speaker 2:
2:54
Yeah. Thursdays are typically a legislation these, so it would be [inaudible] business things, eight items of interest that members may wish to these, but there wouldn't be any binding votes on a thirsty unlike Monday to agency. So often that is the day the NPS or travel home to constituencies and try and get work done there. So a typical back bench to be may have between seven and 12 people attending, but we had far more than that. I think breeds over 20 people contributed. But we had more people than that in the actual chamber, which was excellent.
Speaker 1:
3:33
These things don't get anywhere. In terms of legislatively, what were you trying to achieve?
Speaker 2:
3:42
Well they born necessarily get anywhere in terms of finding things. But what we can do is train force the government's hand a little bit because they will draw more attention and boobies awareness of a particular issue and can also, especially women may have lots of empty speaking, can really put pressure on the government to make change. And we had, we had four very specific asks within the debate we were asking because there was a motion for the debate. So we read asking firstly for more money to be spent on biomedical research, which at the moment is sadly lacking. We asked if it an immediate integrated exercise data page we asked for training for gps. And one of the most sinister aspects I think of of Amy is that children with Amy, often their parents have faced prosecution, um, and chill protection procedures. So we asked that it was an end of the prosecution of cadence of children with Amy. So it's for very specific asks. And whilst is the response from the minister wasn't altogether and cottaging it gave us, it gives us a platform to really continue to apply pressure.
Speaker 1:
5:01
And I guess it also helps that when people are going searching in the parliament, these things have been said,
Speaker 2:
5:09
yes, these things have been said that it's interesting because we were doing the research for the debate and the previous main chamber to be on. Amy had taken please 20 years previously. What was, what was really interesting was it many of the things that were, that had been said 20 years ago, we were seeing again in January. So it was interesting, but the record does it, it's a permanent record of what what's said in parliament. So people, people will see that. Um, so, so that's important as well. But what was, what was really quite encouraging from my point of view is a number of mps who came up to me in the lead up to and after that scene, thanks for giving us the opportunity to speak about it. I knew nothing about it, but you forced me to fame though. And I've realized that's a massive issue to really very recent awareness, not just amongst members of the public, but also amongst the members of parliament here with this as well.
Speaker 1:
6:08
The aftermath of that positive debates in just the past few days as we're recording this podcast now, we suddenly have a, a an Oxford professor researcher seeing he's no longer doing any research because of cyber trolls. Uh, you goes on the radio for four today program to give his side of the arguments. I'm not little writing in the Sunday Times, uh, talking about people with me wanting to be ill rather than accept help from the psychiatric part of the medical community. That must be your heart sink,
Speaker 2:
6:52
which was not helpful. It doesn't meet my heart sink actually. Gatti it makes me angry. But um, I think the worst thing we can do is get dragged down by these negative reports. This thought, as I'm concerned, the lakes of a make or sharp is like a slap tandem or that's facing he'd, Eliza Eliza's noted his back is against the wall and he's trying to slander it as many people as possible. I certainly wouldn't encourage anybody to be abusive to people regardless of whether we agree with what they're doing or not. Um, but make or sharp paths also recognize that the research he has done has not been biomedical research has been psychiatrically search three pretty much proves a point when he says, you know, he's not going to do as research anymore, Gary, because we don't want that research done anymore. We went biomedical research done.
Speaker 1:
7:55
I'm glad you've said that because I, I wondered whether I was alone in thinking is that I've been angry that he's having you go at cyber cyber trolls. I, I was just happy he's not carrying on with this research.
Speaker 2:
8:08
Yeah, I mean it makes a sharp was the, the one, the person that emailed me before the last June's db and told me or said he hoped divergent measuring to then has research and that my behavior was unbecoming of an MP. So I mean my cool sharp to talk about receiving abuse from other people is really this. Even some as this wouldn't meet us in as part as I can see.
Speaker 1:
8:40
Absolutely. What goes around comes around. I won't rehash all the arguments during the course of this conversation, but in the show notes that I'll put with the podcast, I'll put some links to the background of Michael Sharp and also the remodel little article as well. Where do you go from here, Carol? I you're doing an amazing amount of work, but you've also got a wider constituency in Glasgow to represent as well. Where do you go with your Emmy work?
Speaker 2:
9:04
Yes. I mean one of the, one of the difficulties, 14 piece is that we have ed is of interest or things that we're, we're looking to, to make changes for, but ultimately we're constituency mps and we have to do that as well. So sometimes people from near me community, we'll cut, we'll get in touch and see what's happening next. What's good. Unfortunately we can't be doing all the team, but what we have done over the last couple of months, since the January DB is firstly I've had some meeting with the office of the minister for disabilities seed on Newton. Unfortunately she's noticing pain. Um, but we had a meeting with DWP assessments for people with Amy and we were given some assurances over that. So that was quite a positive meeting and I would urge anybody who is, is having problems in terms of DWP assessments, health assessments to get in touch with it, nps and highlight, highlight these issues to them.
Speaker 2:
10:08
So that's something they've done. And actually this week on Friday in my office and Glasgow, I'm going to be half an NAV, afternoon teeth, a member coated. Let's talk about Amy. Um, and that's given people the opportunity. Obviously that's a local, a local event, but it's getting people with Amy the opportunity to come together and talk about some of the issues that they're helping lead experiencing. And hopefully we'll hear some personal stories. I want to hear some decent stories as well about success as well as, as well as the difficulties that people have faced. But I'm looking forward to meeting these people and hearing what they have to see.
Speaker 1:
10:47
Can I just ask him on that DWP stuff. If somebody does contact their local MP, I guess some people will wonder, does that really make a difference? Did do mps generally take this stuff seriously?
Speaker 2:
11:00
Oh, absolutely. I mean, one of the jobs of an NP is to to respond to constituents concerns or if, if someone is coming with an issue that you've experienced, then it, the MPD league does have a duty to these that with the DWP either through written questions or m liters or fought in deed through questions and the timber. So there it's, it's a very powerful way for people with Amy actually see I get in a direct link into government.
Speaker 1:
11:35
Great. No, that's good advice. In terms of one of the other issues we've spoken about this series, which is the review of the nice guidelines in terms of the treatments, uh, of Amie, uh, where, where are you at? Are you plumbed into that process or are you more keeping in and an eye on that process from afar?
Speaker 2:
11:53
Yeah, I'm keeping an eye on it. It's not something that I am able to influence in any way. Nor was I went to Eh, the people that are best pleased to speak to both or the people that are actually dealing with the consequences of it so that patient groups have been involved. So we're keeping an eye on what's going on. What I do think is a bit frustrating though is boasted of you is going on. Um, can you did exercise say he continues to be just straight and I would wait to see it completely holes to drill this refuse going on mobile beat for device. Nice guidelines because of course they're not going to be published until um, I think autumn 2020, which is a long time to cool if, if you're currently undertaking exercise setup here.
Speaker 1:
12:43
Absolutely. And just for clarity that, that was one of the four points that you raised in your Commons Dubay but you didn't get any commitments back from the governments with regards to that specific issue.
Speaker 2:
12:55
Yeah, I mean in fairness to the minister on this point, it's not up to government ministers have to change nice fee Blaine's I suppose that besides just been really just trying to heat highly that particular issue. So that that was one is the ones that yeah, we need to sit back unfortunately and, and Layton, ace, teach, take it's time to come to its conclusions and hopefully these will be, will be once it we can agree with. So that's not something unfortunately that we can really influence, which is why I'm, I'm watching this from the side lanes rather than getting stuck into it.
Speaker 1:
13:30
Not that I expect you to arrange a debate every day of the week, Carol, but I just wanted to, aside of your fabulous afternoon seat, are you planning any more debates in the, in the coming months?
Speaker 2:
13:43
And I think what we've got now is quite uh, uh, it tasted of MPs who are getting in touch fairly regularly and asking, right, what are the next steps? What knows how to be paid to be particularly this?
Speaker 1:
13:58
How'd you mean they were all talking amongst each of the room with you as a result of the debates?
Speaker 2:
14:03
Yes, they are. No, not all of them obviously, but many of them are. And one of the things I did follow in the debate was booked to puberty that had spoken in the debate to thank them for their contribution. And so many, many of them have come up and thanked me for my later, but it just means that these people hopefully are on board for the next. What if for the next part of this campiness but um, yeah, that's, that's quite important. There'll be half nps know that have some knowledge of him of Ame and are willing to be involved in, in whatever we, we, um, trying to achieve. And the CDO,
Speaker 1:
14:41
let's wrap this up with a bit of hope and positivity is what I try to do. What, what is your hope of where we are now on this roller coaster of supporting with Amie and finding the appropriate treatments and research? What's, what's your sense of where, where things are out?
Speaker 2:
14:59
When did the main things for people with Amy is that we want to be believed. They don't warn, you know, the leaks of Rod little brightness is m really disgraceful article. They want to be believed, the one to people to understand that this is a real condition. Um, and I think we're moving towards that. Certainly it's a lot more positive than maybe it was 10 years ago. So, so that has that we're making steps in that area. So once people start being believed the booby be up for Beta, both better treatment and better diagnosis, and that's a stage we need to get to. The treatment has to be suitable for the condition. And in order to do that, we need to do the research. But I really, I mean I, I am positive about this, that by continuing to put pressure, not just in government, but also in journalists then and also just in the general public, they continuing to get that message out. There will be a desire to Chartio. Did he search the it's required.
Speaker 1:
16:03
Well, listen, keep fighting the good fights. I know many people, myself included, genuinely appreciate it. Ah, and Carol in amongst your mass crazy week. Thank you for finding the time to join me on the show.
Speaker 2:
16:16
You're very welcome, Gary. It's been a pleasure
Speaker 1:
16:18
the ever inspiring Carol Monahan, MP. Uh, you can find more about Carol's work and those links I promised you about the rod little article and also the interview on the Today program on BBC Radio Four. They're in the show notes that come with this podcast. If you're listening to this in Itunes, thank you. Please make sure you subscribe and rate and review the podcast. It helps boost our visibility. And wherever you're listening, please share it with anybody who you think might like to listen. Always keen to spread the word. And for now, most of all, thanks to you for listening to the Emmy show.
Speaker 3:
17:07
Yeah.