UK: Strategies for contacting your MP about PACE, NICE and a parliamentary debate.

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My wife and I did in fact attend one of our MP's surgery appointments today. We had been allocated 10 mins and were in there more like 25 mins. Our MP is a Secretary of State (not health).

In the end, after discussing previously with my wife, decided the best bet was for me to stick to what I do know, and felt comfortable talking about, else would just come across wrong. We went in with two main objectives, the first of which I think went well, and the second as well as could be expected, given a limitation I was unaware of:

• Help him to better understand what ME is and is not, at a grass roots day-to-day level. The aim was to educate and motivate him enough to want to understand more; if an MP does not buy into a cause, they are not going to do much to help it. MPs are not necessarily easy to read, but my wife and I both feel there is a strong likelihood the interest he exhibited was genuine. The approach was to help him better understand, and definitely not to chide.
• Ask him to support Carol Mohaghan in gaining a debate in the House of Commons, and to engage in that. He explained to us, and not in a dismissive way, that he is prohibited from actively engaging in public debates in an area that is the responsibility of another secretary of state (health in this case). But he did volunteer that there are many private debates (not sure if he just meant discussions) within parliament, and he would be in a more informed position to engage in such debates.

With those two objectives in mind, we took some paperwork with us, which we left with him:

• On one sheet, two of my posts. https://www.s4me.info/threads/barry-here.180/ and https://www.s4me.info/threads/barry-here.180/#post-6915 ... just the text that I wrote. I asked our MP to read that sheet before further discussion, as I believed it was better than me trying to explain it. I wanted him to read that, with my wife and I in front of him. Although I had mentioned to him in emails before, I clarified I belonged to Science for ME (I am so glad we chose that name now!), and those were two of my introductory posts in it. It took him a less than a minute to read and it was obvious he digested it well. It would have taken me longer to try and explain it, and to lesser effect I think.
• A printout of @dave30th's "Open Letter to The Lancet, Two Years On", http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/. Although I wanted our MP to read the letter later, the primary objective was different. I put a couple of post-its in there, at the start and finish of the signatories. It then was quite graphic to turn it edge on to him, saying "This is the letter itself, and all this in between the post-its is the list of signatories - professors and doctors of many pursuations, medicine, law, journalism, etc. I think it was quite effective: as I showed him this, and he realised the big wad in between was all eminent signatories, he did murmur almost to himself "Oh wow!" He did pick up on the Professor of Music in there, but I emphasised virtually all were medicine, law etc. I really hope he will peruse that list a bit more, later on.
• Our S4ME PACE Briefing Document, https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/. I explained this is a really good primer on the issues with PACE.
• The JoHP special issue on the PACE trial. He had not seen it before. I explained that I had bought two copies when it came out, and that he was very welcome to that copy, but that I would rather take it back home if he was just going to leave on a shelf somewhere, unread; I didn't mind if he wanted to let others have it to read. I used a post-it to mark @Jonathan Edwards' "PACE team response shows a disregard for the principles of science", suggesting he at least read that. I always think this is a good starting point. He did take it, and promised he would at least read the marked article, and possibly more.

In the course of our discussion our MP really did show genuine interest I think. We discussed how hard it can be for people unaware of what ME really is, to properly appreciate PwME. We noted that as my wife sat there, although she looked pretty tired, she did not look ill. So we then went on to explain that if people say my wife pottering in the garden etc, they would not realise the payback she suffers. That in order to have some quality of life, it costs her afterwards. That when our daughter and grandchildren were with us a short while back, it is lovely, but for my wife also shattering, because she cannot pace properly. That where many people get exhausted after a heavy day, for my wife she just crashes, and is way worse than tired, and feels severely ill with it; just has to sink into herself and work her way through it.

Made it clear my wife is mild-to-moderate, and that many people are much worse. Whereas my wife can walk slowly for a mile or two, getting ever slower as she goes, some people are so ill they have so little energy available they can barely get our of bed, and that the most severely ill have only enough energy available to keep them just alive, nothing more. I do think these things struck a chord with him, and his secretary. I tend to get a bit enthusiastic (not bolshie, just passionate) when discussing things close to my heart .

I did mention the battery analogy I favour, and my wife agrees fits with her. Like an electric car with a worn out battery. Not only does the battery fail to charge more than 40% or so (at a rough guess) for my wife, but the current doesn't flow nearly so well with this knackered battery, and it takes much longer to recharge back to that meagre level than a normal battery would to fully recharge. For more severely affected people the battery is much worse than this. It was clear this was just an analogy - we wanted our MP to get some insight into what day-to-day life is like for PwME, and in this particular case my wife.

We also discussed how my wife is the living example of how the PACE deconditioning notion for PwME is just plain wrong. I explained my wife and I have been together since 1977, and I knew her long before she got ME in 2006. That my wife always, always pushes herself to her boundaries, and that if her problem had been deconditioning, she would have worked her way back to health long time back. She still pushes herself to (and sometimes beyond) her boundaries now, but her boundaries are much more limiting now. Said that although PACE posits that there is a physical element, the argument is that it is deconditioning, and that it can be reversed provided patients are of a mindset to do so. Explained that if my wife constrained herself to avoid all payback, she would have no quality of life at all, and she has learnt how to pace (not to be confused with PACE) so she achieves some balance of the two.

Also discussed how he might discuss with colleagues, and how others might look into some of the issues we discussed. I then asked the question "But what if some of those experts consulted are part of the problem?", which got a quizzical look. So I did drop some names, SW, PD, MS, saying that these folk are still strongly of the belief that PACE and its assertions are right, and to be aware of that. I did then say that before he talked to anyone, I strongly recommended he look at the material we gave him first. He agreed with that before I finished the sentence.

Touched on the employment issue. Prospective employer: OK, we can be flexible. How many hours could you do, and when could you do them? My wife: I don't know. As we said how this is the whole point with ME, our MP and his secretary were both pre-empting my wife and I with why that response was inevitable. Took this as a good sign our education efforts were paying off.

He asked how ME is diagnosed, and my wife explained that for her back in 2006 (and I clarified it is still the same), it was a case of lots of blood tests. Our MP immediately picked up on the fact there is no positive test, and we clarified that that is true at present and is part of the problem. And that a lot of work is underway trying to identify biomarkers. He understood that with some enthusiasm, needing no clarification. I did briefly emphasise that more research investment was needed; don't recall a response to that!

I did also express a worry that because it is clear the NHS is under severe financial pressures, the possibility that government decisions might be made far more biased towards saving money than towards saving people (cannot recall exactly how I phrased it now, but wish I'd thought of that). All agreed it was people that counted, but don't recall any reassurance our worries were unfounded!

Also pointed out that there are others far more qualified than me on much of the detail.

I also think our MP would have picked up on the fact that my wife and I are not vexatious people, even though we strongly argue our case, as best we can, for PwME.

Eventually left, thanking our MP sincerely for his time, and leaving him to apologise to his next constituents for being so late.

Edit: Forgot to mention last night (I was falling asleep as I wrote ). I did also briefly mention GET and CBT. Got impression our MP had never heard of GET and a vague recollection of CBT. So in 30s or so manage to get across that CBT, of the form used to help people cope with serious illness, cancer etc, we had no problem with, and could be good. But that the form used for PACE was very different, and based on the idea that people thought they could not recover from their illness, but CBT would help them push through it, no matter how they felt.

This morning my wife and I chatting about this, and we both do feel our MP really was genuinely interested, and actively engaging with us - I don't think it was simple politician's tactics, really don't. We both feel we genuinely left him feeling better enlightened with what it's all about. He did in fact make a point of saying that my persistence in emailing him ( ) had raised his interest and wanting to talk to us. If that is all true, then objective achieved!

ETA: Our MP is Matt Hancock, who was subsequently promoted to Secretary of State for Health and Social Care.

 

@Barry - I think your post is an excellent primer for anyone wondering whether to try to set up a meeting with their MP.

 

@Barry

From your account it sounds like this meeting went as well as it could have possibly gone. I echo @Sasha 's suggestion that you should start a fresh thread to get more people to read your post, because there are so many things that you did perfectly that other people might find helpful:

• prepare carefully what you want to say in advance,
  
• have a couple of main points that you want to get across,
  
• take a couple of quick to read, easy to understand documents that back up what you're saying,
  
• keep bringing the conversation back to your personal experiences and how you're personally affected by the issues you're raising.

It's also worth doing a bit of research into your MP because (as you found out) Government Ministers of all types (Secretaries of State, Minister of State and Under-Secretaries) can't support backbench debates or sign motions. The convention of collective responsibility means that they are expected to support the Government's position on every issue rather than publicly question it, so it's worth knowing in advance what your MP can and can't do for you.

I worked for a Government Minister for a number of years and my boss was routinely asked by constituents to speak in forthcoming debates or sign specific motions - none of which he could do. What he would do instead in those situations was write to the responsible minister, raising the issues that his constituent had expressed. More often than not this will just result in the Civil Service drafting a reply for the relevant minister, explaining that the Government has it all in hand - but you can then go back to your MP and explain where you disagree with the reply, hopefully further educating your MP about ME issues in the process.

I would recommend that anyone who is thinking about going to see their MP face-to-face thinks of it as the first stage in building a relationship with them - a relationship where you are going to have to (gently and politely) educate them about the problems you face and how we as a country should be doing so much better for people with ME/CFS. Don't view it as a transactional exchange - "I'm asking for X and I'm going to be disappointed if you don't support me" - but as the start of a conversation. Your MP probably won't know much about ME/CFS and may well have some misconceptions about the illness. They might not initially be sympathetic and they might have difficult questions for you. Don't be discouraged by that. If they make an assertion or ask a question and you aren't sure how to respond, say "I'd like to think about that and get back to you". And then make sure you actually *do* get back to them, with a response to the issue they raised.

If you have a good meeting with your MP, follow it up with a short letter to tell them that you appreciated their time. And don't be afraid to make a further appointment (or appointments) if you feel there are other points you want to raise. If you want a dialogue you need to keep talking and keep educating your MP. If you can keep a dialogue going with your MP over a number of months (or even years) they'll start to pay attention to ME as an issue - because they've got to know how it affects you, and they know that you'll be back to discuss it again sooner or later. If they only get the occasional letter about it, that'll never happen.

 

Out of time for a moment but will revisit.

 

@Stewart - strongly agree that relationship with MP is best seen as an ongoing dialogue not a one off communication.
@Barry- thank you for your description of how you made a connection with your MP. Very different from the template letters which do the rounds and which I suspect are not very effective.

 

Template letters simply lead to template replies, I'm afraid. When MPs start to receive large numbers of near identical letters on an issue, their party HQ (Labour, Conservative, Lib Dem, SNP, etc) will usually prepare a standard reply for their MPs to use, setting out the 'party line' (how seriously they take the issue and what they're doing to address it). Consequently if you send a template letter the MP and their team probably won't have to give the issues you raise any serious thought - they can just say "Oh - it's another letter about issue X. We'll send the standard response."

(Where template letters can be effective is if the campaign behind them is able to mobilise vast numbers of people sending identical letters - that can make MPs and Ministers aware that a *lot* of people are concerned about an issue. A good example of this was the Jubilee 2000 campaign at the turn of the millennium, which encouraged people to send their MP a £1 coin sellotaped to a postcard, asking them to forward it to the Treasury so it could be put towards international debt relief. Huge numbers of postcards and coins were sent to Westminster, which played a role in convincing No.10 and the Treasury that they should write off the debts of some the world's poorest countries.)

(I was told by a civil servant who worked at the Treasury that it cost them far more than £1 to process each postcard that they received, so they were desperate for the campaign to stop - but I don't know if that's true)

 

I'll hopefully be able to follow up on this later this evening. Bear in mind I'll not be presuming to do a "though shalt" doctrine, but simply expanding a bit on the rationale behind how we went about our MP meeting. Including my own feelings on what I think was a good approach, for others to pick up on if they wish.

Will elaborate later, but the one thing I will say for the moment, is that when asking yourself a question of how to go about it, I believe the really bad question is "What do I want to say?" ... because we want to say everything! I think the right question is "What do I want to achieve?", and let that then guide you toward what to say, and just as importantly, what not to say.

 

Yes, this really struck home with me at our meeting, and made me think I may just have been slightly unfair previously. My wife and I really felt he was genuinely pleased with the chance to be enlightened on the issues, and tht we did it in a strongly positive but non-confrontational way.

Absolutely. It is on my To-Do list this weekend.

Yes. In my thank you email I shall clarify I'm happy to help further if he wishes, even if that means just putting him touch with people better able to help than me, if I find myself out of my depth.

 

This. This multiplied by a million.

There's a limit to how much ground you can cover in one meeting, so don't try to cover everything. You won't do the issues justice, and you'll leave the MP confused rather than enlightened (best case scenario) or thinking you're a bit loopy (worst case scenario). As Barry says, start by working out exactly what you want to get out of the meeting - in other words, what you're going to ask of the MP - and then ensure that everything you're planning to say is in support of that request. Don't worry if this means leaving out details that you think are important - you can raise those another day.

 

That's nice to know .

 

Indeed one of the initial objectives probably needs to be to not kill your chances of raising something else another day. Which I think means to try and help people understand, and want to understand.

 

I think from my wife's and my meeting with our MP, which we feel went well, these are some pointers of what I think we did right:

• Some preparation is vital, but the initial stumbling block is what form should it take. Read on ...
• I think a good question to ask yourself is "What do I want to achieve?" In our case we had two things, but I would think between 1 to 3 maximum.
  • I think a bad question is "What do I want to say?" We want to say everything! Likely resulting in an information-overloaded and disinterested MP.
• Had a bullet-point list of issues to touch on. Our meeting was not as structured as my original post might imply, but the list certainly helped.
• I decided it would be counter-productive trying to discuss aspects I'm just not savvy enough to discuss. So stuck to what I felt OK with. This will clearly vary greatly according to individual.
• Wanted to help our MP to understand PwME better, and maybe he then might be motivated to want to help. No motivation equals no go. In my case I printed out a couple of posts I did in the "Introduce Yourself" forum, and asked him to read that first, as an efficient orientation exercise.
• Wanted to help our MP to understand the PACE issues better. Recognised no hope of getting it all across in short session, so printed some material off. But with a view help aid his understanding and motivation; not make him vow to never go near any of it again!
• Showing the number of signatories to David Tuller's letter to the Lancet, as thickness of paper, seemed to impress.
• I think it is important to stay within your expertise level.
• Anything else is in posts above.

 

I have just emailed my wife's and my thanks to our MP. I have included a link to this thread, given it is publicly visible. My gut feeling is that kind of openness might help build better trust.

 

"Health Secretary Matt Hancock reveals his dyslexia"

https://www.telegraph.co.uk/news/2018/10/02/health-secretary-matt-hancock-reveals-dyslexia/

Does this impact how best to communicate with him? I have tended to send quite wordy missives to him, and indeed now I get no auto-responses or anything, as if I've been blocked or something (absolutely not done anything to warrant that). My next approach is to follow up with snail-mail communication, but with this I'm wondering if an different approach is needed anyway?

 

One thought - my understanding is that an MP is obliged to send a written reply to a constituent who has asked a question, if the letter is received by post.

So I would agree that you could write a(nother) (brief) letter, asking a direct question and ‘look forward to his prompt reply’!

How about using Tewkesbury MP Laurence Robertson’s recent Written Parliamentary Question?

https://www.theyworkforyou.com/wran...06.h&s=section:wrans+speaker:10505#g173506.q0

The response only came from a member of his team, Caroline Dinenage, last week, once the Conservative Conference was over. You could connect the letter with one of your previous emails and comment that the answer provided by Ms Dinenage does not actually answer the question that his Tory colleague asked.

My MP Alex Chalk (also Tory, Cheltenham), is Matt Hancock’s new Parliamentary Private Secretary. He has become very interested and supportive of ME research and, we are hoping, has had some conversations with Matt (well we can dream!).

Trying to get those MPs on board, one by one.....

Good luck @Barry , keep us informed how you go.

 

I've heard/read people say this on many occasions, and I'm afraid it's just not true. MPs have no legal obligation to respond to their constituents, regardless of the method of communication used. Having said that - it's rare for an MP to choose not to respond to their constituents, because that's a sure-fire way of ensuring you won't have their support at the next General Election. Most MPs want to be seem as accessible, engaged and responsive, so they'll try to respond promptly even if the response isn't what the constituent in question wants to hear.

I think there's a relatively simple explanation for your MP's recent silence @Barry which is that since July he's been the Secretary of State for Health. When you contacted him previously he didn't have any kind of ministerial responsibility for issues relating to ME. Now that he does I imagine his office staff will have forwarded your messages to his ministerial office at the Department of Health, so that the civil service can prepare an official departmental response on his behalf. As you might expect, correspondence that goes through the Departmental Correspondence Unit can take much longer to be dealt with, due to the considerable volume of letters they receive that require a detailed reply.

In terms of your next steps, you could either follow up with a phone call to his Parliamentary or Constituency office (telephone numbers are here) to check that your messages have been received and are being looked at - or you could make another appointment to see him and take print outs of your messages with you. If your wife is well enough (and I appreciate she may not be) I would suggest the second option, as it seems to have gone very well last time.