UK General Election: Template letter to parliamentary candidates

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UK General Election: Template letter to parliamentary candidates

The UK General Election takes place on Thursday June 8, and we know that people may want to contact their local parliamentary candidates to inform them about issues of key national concern to people with ME/CFS.

You may also want to raise local issues – especially in relation to subjects such as social care and the general lack of care in the community, lack of medical education for local GPs and problems with hospital-based referral services for people with ME/CFS.

The MEA has produced a basic letter that can be used as it is, or modified to meet your individual requirements.


http://www.meassociation.org.uk/201...ing-the-general-election-campaign-9-may-2017/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 

AndyPR

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This is great, we need more things like this to assist patients in their advocacy efforts in this country. While I appreciate the need to keep it as brief as possible, I personally I feel that it needs some emphasis on the economic burden, pointing out that it's a false economy not to put more money into biomedical research. It might not matter so much to other parties, given they may have more compassion for suffering, but it would seem your typical Tory needs to be talked to in monetary terms for them to take notice.

I have had the idea of taking the figure for the overall economic burden of patients for the country and then working it out for each constituency, enabling people to show their local MP the likely burden of the people they are representing. And I will do it, once I find that elusive amount of sufficient spare energy...
 

SamanthaJ

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This is from the Labour manifesto:

Labour will address historic public- health injustices. We will hold a public enquiry into contaminated blood. We will also hold a public inquiry into medicines, including Valproate, medical devices and medical products licensing and regulation.
If you're writing to a Labour MP or candidate, might be worth adding a reference to this bit, and how it's relevant to ME.

Edit: Not trying to start a political debate, just worth knowing what each party is promising when writing these letters.
 
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This is great, we need more things like this to assist patients in their advocacy efforts in this country. While I appreciate the need to keep it as brief as possible, I personally I feel that it needs some emphasis on the economic burden, pointing out that it's a false economy not to put more money into biomedical research. It might not matter so much to other parties, given they may have more compassion for suffering, but it would seem your typical Tory needs to be talked to in monetary terms for them to take notice.

I have had the idea of taking the figure for the overall economic burden of patients for the country and then working it out for each constituency, enabling people to show their local MP the likely burden of the people they are representing. And I will do it, once I find that elusive amount of sufficient spare energy...
Fair point

Could add in this info if people want to:

The scale and impact of ME/CFS on individuals and society is significant.
Around
250,0001 people in the UK have ME/CFS which is at least as disabling as multiple sclerosis and
congestive heart failure.
Many more people – carers, children and family members – are directly
affected by the illness each year.
The economic cost of ME/CFS was estimated at £6.4 billion3 per
year in the UK in 2006, and this figure will certainly have increased since.

Ref for economic cost to the country:
Bibby J, Kershaw A. How much is M.E. costing the country? Report prepared by the Survey &
Statistical Research Centre. Sheffield Hallam University, 2006.
(not available on line)

CS
 
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Thanks for the additional info @charles shepherd

Can I ask what the thinking is behind the call to set up a new APPG on ME? Why would this be an improvement on the existing APPG?
Re the APPG on ME at Westminster:

This is largely a procedural matter after a General Election

All APPGs have to be reconstituted after an election, and in the case of ME/CFS this nearly always means that we are chasing round to find MPs and members of the House of Lords who are willing to be involved in the running of the group

Retirements, loss of seats and deciding that one full term of parliament of close involvement is enough normally has an effect on what happens next……..
 

AndyPR

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Useful links to find the contact details for candidates;
https://www.conservatives.com/
http://www.labour.org.uk/people
http://www.libdems.org.uk/candidates

If those links don't offer the information on the candidate in your area, the next solution would be to internet search on your local constituency and the party you are trying to find e.g.. North West Hampshire Liberal Democrats. If you don't know your local constituency, simply use the search on the homepage of https://www.theyworkforyou.com/.

Prevalence and economic cost.

If you want to add in more individualised details on these two then this might be useful.

Prevalence in a constituency - population in a constituency (Wikipedia normally will have a figure for this) multiplied by 0.004 e.g. North West Hampshire, in 2010, had an electorate of 77,020. Multiplied by 0.004 gives approx 300 adult patients.

Economic costs to a constituency - population in a constituency multiplied by £25,600 e.g. North West Hampshire, patient population of 300, has an economic burden of £7,680,000 per year.
 
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slysaint

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then there's always this one:D
"The Loony party campaign is now in full swing with fifteen candidates declared so far"
https://www.omrlp.com/


Some Brexit Policies
30th April 17
  • Health – Germany to pay for all treatment of German Measles, and Spain ditto for Spanish Flu.
  • France must give us back Brittany.
  • All Europeans to pay to use the English Channel, and all Creme Anglais to be made in Britain.

sorry; I know this is a serious issue........just couldn't help it.

eta:
"2017 General Election Manifesto

We will stand on a platform of free woollen hats for all, so we can pull the wool over peoples eyes.."
 
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AndyPR

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In case anybody is interested, here is my modified version of the MEA's draft letter to MPs.
Dear [Local MP candidate]

I have an illness known as M.E. (Myalgic Encephalomyelitis), also often referred to as Chronic Fatigue Syndrome (CFS) or ME/CFS, which affects around 250,000 people¹, children as well as adults, here in the UK. Around 25% of people with ME/CFS are severely affected² – meaning that they are wheelchair-bound, house-bound and in some cases bed-bound. Within North West Hampshire, this estimate would mean that over 300 adult constituents are affected, with over 75 of these sufferers house or bed-bound.

In 2006, it was estimated that the economic burden to the UK of M.E was £6.4 billion per year³, due to, but not exclusively, loss of earnings and patient management costs. In North West Hampshire, this means a local economic burden of £7,680,00 per year. For children and adolescents, ME/CFS is the commonest cause of long-term sickness absence from school4.

[I added a section here on how ME has affected me to personalise the letter]

I would therefore be grateful if you could look at five key concerns below that affect people with ME/CFS and let me have your thoughts on what could, and should, be done at a government level if your party is elected on June 8th:


  • DWP BENEFITS

    Along with other fluctuating medical conditions, people with ME/CFS often have great difficulty in obtaining DWP sickness and disability benefits (ie ESA and PIP) to which they should be entitled. They are often only able to do so after going through a long and stressful appeal process.

  • MEDICAL EDUCATION

    Many people with ME/CFS experience long delays, sometimes over a year, in obtaining a formal diagnosis. As a result they are often given inadequate, or even inappropriate or harmful advice on management. This is because medical education on both the diagnosis and management of ME/CFS at undergraduate and postgraduate level is often inadequate or even non existent.

  • MANAGEMENT

    The 2007 NICE guideline on ME/CFS does not meet the needs of people with ME/CFS and requires a comprehensive revision. This was confirmed by Professor Mark Baker from NICE when he spoke to a meeting of ME/CFS charities at the House of Lords in June 2014. However, there are still no firm plans in place carry out a much-needed revision.

  • RESEARCH

    Although the Medical Research Council has identified a list of high priority biomedical research items, funding for key areas of biomedical research, which also includes clinical trials of drug treatments and research infrastructure such as the ME/CFS Biobank at the Royal Free Hospital, still has to be largely funded by the charity sector.

  • NHS SERVICES

    In many parts of the UK, people with ME/CFS still do not have a local hospital-based multidisciplinary service to whom they can be referred by a GP for further advice on either diagnosis or management. For children and adolescents, the availability of specialist referral services is extremely patchy. And for the 25% of people who have severe ME/CFS, domiciliary services and in-patient facilities are almost non existent.
As you can see there are very real concerns about the way in which the Department of Health is dealing with an illness that affects around 250,000 people in the UK and which is costing the country an enormous amount of money in lost revenue through the prolonged ill health and the disability it causes.


IF ELECTED, PLEASE HELP FORM A NEW ALL PARTY PARLIAMENTARY GROUP ON ME



The current All Party Parliamentary Group (APPG) on ME is aware of these concerns and before the election was announced was in the final stages of conducting an inquiry into social care for people with ME/CFS.

So my final point is to ask whether you would be willing to be involved with a new APPG on ME after the General Election?

Thank you for reading this.

I look forward to your response.

Yours sincerely


[Your name here]

  1. NHS website - http://www.nhs.uk/conditions/chronic-fatigue-syndrome/pages/introduction.aspx

  2. Pheby, D; Saffron, L (2009), "Risk factors for severe ME/CFS" (PDF), Biology and Medicine, 1 (4), eISSN 0974-8369

  3. Bibby J, Kershaw A. How much is M.E. costing the country? Survey & Statistical Research Centre. Sheffield Hallam University, 2006.

  4. Dowsett, E; Colby, J (1997), “Long Term Sickness Absence due to ME/CFS in UK Schools: An Epidemiological Study With Medical and Educational Implications”, Journal of Chronic Fatigue Syndrome, DOI: 10.1300/J092v03n02_04
 

AndyPR

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No problems :)

If anybody wants to use this but needs to adapt the constituency prevalence and economic burden figures then all I did was to use Wikipedia to look up the constituency to find out the population figure (it actually gives the electorate figure but I thought that would be good enough).
For prevalence, multiply the population by 0.004 (e.g. 77,020 x 0.004 = 308 PwME)
For economic costs, multiply constituency figure by £25,600 (e.g. 308 x £25,600 = £7,884,800 per year)

Or if brain fog doesn't allow you to do this, post your constituency (or even just post code) in this thread and I'll work it out.
 
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Well, for what it's worth I've got a response from the candidate most likely to be elected
View attachment 21439
@charles shepherd , having as much notice as is possible about the APPG meetings will make following this up easier, thanks in advance. :)
Thanks for posting this reply

I will be in touch with Kit Malthouse if elected on June 8th!

CS
 

Cinders66

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But fundamentally the MEA and AFME do not think that the MRC should be under pressure to allocate us more money or certainly are not asking members to apply that pressure in any form of lobbying so I don't see what difference individuals writing to MPs on that calling will make. Whenever I've raised the lack of MRC etc doing more to put in funding etc I'm told by MEA that that's not what they normally do (so accepting no ring-fencing) and that the issue is therefore lack of voluntary research interest, something an MP will see as beyond them, unless name and definition were changed. I've written to both to my MP and to DoH previously, including on false economics and economic burden and got nowhere except the standard MRC has had CFS as a highlighted area for several years and welcomes research applications etc. I've also written about lack of medical services for ME and the old lines get trotted out.

its worth raising our matters with prospective MPs , especially in parties like the greens where social justice , rather than status quo, is more what they're about. But unless we have mass movements on things I'm not sure anything will change and it's organised campaigning on specific issues I would like to see.

My own priorities are research funding and severe ME medical care provision, which will require a letter from scratch, but I don't know if I will be well enough to formulate one in timtb.
 
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Cinders66

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Just to add of people write to female MPs raising the three times number females affected and the children angle might be a draw, as well as the typical marginilisation of women's illness. Giving them something they can feel more empathy with it relate to and also as a way in to understand that this is a social justice issue. There was a thread elsewhere where a green manifesto was declaring that MUS shouldn't be treated as psychological so a green female MP candidate might be won over. We really need a powerful, vocal woman to look at ME history, look at current failings and take this on as her cause, MP or not.