#3 Letters to my MP on APPG on ME

It’s time to report the third installment on my letters to my MP on the APPG on ME and the EDM’s I asked if he would sign. 

After the initial letters to my MP  he then replied saying he had referred my letter to the relevant Minister and as a Minister he was “not permitted to join All Parliamentary Groups or sign Early Day Motions“.

So I questioned why he had referred my request for him to join an PPG to a Minister and seeking some clarification because I had found out that as a Whip he was entitled to join APPG’s and even to hold an officer position.

Here is his reponse in full:

2 August 2010

Dear Mrs Groves

Thank you for your further very thoughtful e-mail of 28th July and for all the links you have kindly researched.

As a Government Whip I am indeed a Minister (Lord Commissioner to HM Treasury and The Government Pairing Whip) and will not be joining any All Party Parliamnetary Groups (APPGs) or signing any EDMs.  I am expressly forbidden from doing so by the Ministerial Code and have sought advice from the Cabinet Office regarding this.

This is not a personal snub to any constituent. Indeed, even when I was a Backbencher, there simply was not the time or point to join every single APPG brought to me attention by constituents, most of whom were more than happy that their concerns were, instead, brought to the personal attention of Ministers which is far more effective.  Being a member of an APPG, like signing an EDM, is passive and has little influence on policy.

I have no further comments to make on this whole matter except to reiterate that I am more than happy to write direct to Ministers on your behalf to ensure that your very important concerns are addressed.  As you know, I am currently in correspondence with the Department of Health regarding ME. However, if there are any other issues you wish me to raise, I am happy to do so.  Are there or not?

Your sincerely

pp Michael Fabricant

I’ve sent a short reply, but I rather wish I had also mentioned that I will take on board his comments that his writing to Ministers is more effective than EDMs and APPGs and try to adjust my thinking accordingly.  I didn’t say that – perhaps next time.  Here is what I did say:

6 August 2010

Dear Mr Fabricant

Thank you for your letter dated 2 August 2010 and for stating your position clearly.

I think it’s wise to wait for any feedback from the relevant Minister to whom you passed my original messages and take it from there.


Rachel Groves

I’m new to this lobbying stuff – at least for anything beyond participating in mass lobbying like on behalf of Amnesty and Oxfam.  So I am learning.

I’m not convinced that APPGs or EDMs have to be passive.  But as my MP is not allowed to participate it’s dead end for me.  I’m going to have to try and figure out how to play to the strengths of what’s on offer.

I found some interesting advice about How To Lobby Effectively including that Ministers will not read letters sent from members of the public so I need my MP’s involvemebt to reach them.  However with some MP’s there’s a danger that they become little more than a post box between constituents and Ministers – so I need to watch for that too.

The most effective way to lobby, and the most challenging for someone whose political alliance doesn’t match their MP’s, is to find a way to make the issue relevant and interesting to the MP.  To make them want to be involved.

But I realise possibly the biggest obstacle I have to overcome right now is to be very clear and very concise on what I want to lobby for.  I realise that many of the problems people with ME face which relate to government can sound distinctly like conspiracy theories and that I need to avoid.  I need facts and evidence and to be very clear.

What I’d really like is for a lobbying group of ME advocates to direct me in what to ask for.  Do I focus on:

  • the difficulties we have accessing benefits and assistance
  • the unfairness of medical assessments on our fluctuating condition
  • the lack of funding from the British Medical Research Council on bio-medical research, the NICE guidelines which direct GP’s to offer CBT and GET (shown to be harmful to many with ME) whilst tying their hands to offer various other drug therapies and suppliments which can often give improvement
  • the specialist treatment centres for ME still only really offering CBT, GET and pacing advise as treatments often condeming patients to struggle on alone as they are or having to seek & pay for private treatment
  • the lack of diagnostic testing to be developed and funded, which could be offered to us on the NHS – where a combination of tests show abnormalities . Such as SPECT scans with blood flow to the brain and scarring, T-cell abnormalities, OI/POTS response, exercise testing over 2 days, developing gene expression diagnostics and more. 
  • the GP’s who still can refuse to treat or even believe ME as a physical neurological multi-system illness despite the Chief Medical Officer’s report as such in 2004 and the NIC guidelines – perhaps as many as half of GP’s currently practicing and continue uncheked to dismiss or belittle ME patients leaving them effectively without medical care
  • the cases of parents with children who have severe ME who are accused of child abuse because of a lack of knowledge, expertise and training from the professionals involved
  • how little attention, funding or prioritising ME has had from the government despite it costing the economy millions of pounds and laying waste to hundreds of thousands of lives which are lived in the shadows

There are more.  And with those I have listed there are more concise issues to be picked out and addressed.

I guess I might have to raise every single one of them. Drip drip drip.

Explore posts in the same categories: activism, cfs, chronicfatigue, disability, letter, m.e., MP

2 Comments on “#3 Letters to my MP on APPG on ME”

  1. Philip John Says:

    The response you’ve received actually reminded me of Fabricant’s criticism of Gordon Brown when he raised the Chasewater issue at PMQs: http://thelichfieldblog.co.uk/2010/01/21/lichfield-mp-criticises-prime-ministers-insensitive-response/

    Rather than offering any level of comfort that your concerns won’t fall on deaf ears it does sound like he’s just passed the buck. Certainly disappointing.

    Also, the whole thing about being unable to join APPGs and sign EDMs makes me wonder whether he’s a bit of a lame duck MP? He passes on our letters to other ministers and can’t express the concerns of his constituents in parliament… what can he do for us?

  2. […] Dizzy Sky Blue Sky with a Twist of Dizzy « #3 Letters to my MP on APPG on ME […]

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