#4 Letters to my MP on APPG on ME

I now have the Minister’s reply to the letter my MP wrote on my behalf as part of our correspondence on the APPG on M.E.

The Minister, Mr Paul Burstow, talks about the National Service Framework (NSF) for Long-term Conditions and their Quality Standards. He also talks about the work of the group formed in 2008 at the Medical Research Council (MRC) who are looking at new approaches for research into ME/CFS, the MRC CFS/ME Expert Group which is definately progress for ME/CFS research funding in the UK.

I’m very glad The Minister says “As a neurological condition of uknown cause, the Quality Requirements of the NSF apply equally to CFS/ME as they do to any other neurological condition”.  It’s always good to have a Minister re-iterate the Chief Medical Officer’s report findings in the early 00’s that ME/CFS is classed a neurological condition.  Even if a lot of GP’s don’t seem to know that. Which brings me to the next point.

He doesn’t make any mention of the concerns of the West Midlands ME Groups Consortium (WMMEG) , which I raised, over the British Association for CFS/ME (BACME), who have taken over as the training forum for NHS staff involved in the care of people with ME/CFS.  I clearly raised with my MP that:

“The WMMEG feels that BACME “needs to be more publicly accountable, would benefit from wider patient participation and is too much under the influence of the psychiatric lobby.”

 Also “not only is BACME not monitored by the Department of Health, but neither are the NHS services for CFS/ME”.

Perhaps the Minister thinks he covers this when he talks about the NSF’s Quality Standards and perhaps the suggestion is that BACME should be aiming to achieve those standards too. Also perhaps he is addressing this when he says how “it is for local NHS organisations to plan, develop and improve services for local people.  These bodies are therefore best placed to respond to patients’ concerns and needs”.

But I’m not sure that is relevant to addressing the accountability, transparency and approaches of an organisation responsible for delivering training to key NHS staff nationwide.  Perhaps I’m not joining the dots here or perhaps the Minsiter is dodging the issues?

I suspect that the response doesn’t really address the issues raised and I need to ask my MP to write to the Minister again to clarify – focusing on one or two key points.  That’s going to take me a bit of time to figure out.  Firstly because it’s complex and secondly because I have a slightly broken brain thanks to ME/CFS.  So it’s going to take some energy and effort to distill the relevant points into a tidy succinct letter.

All of this reminds me of the last Government and politician’s response to the barrage of criticism of the NICE guidelines for ME/CFS from patients and their groups.  Saying that NICE is an independent body so the Government is powerless but thanks for your letter.  Even if you are questioning accountability – such as did NICE use bias when drawing up the guidelines – most MP’s and Ministers are powerless and in fact say they value NICE’s findings despite patient groups saying the guidelines are not fit for purpose.

Like when questions were asked between 2002-2008 when the MRC spent almost all of  three million pounds on psychologically based research studies into ME/CFS – MP’s and Ministers said MRC is independent and so we can’t do or say anything but thanks for your letter.

Creating these bodies as independent was supposed to give more autonomy, control and fairness but it just seems to be a neat way to pass the buck and give away all the power – or should that be responsibulity? Unless you can commit to make them properly accountable, open to public scrutiny and answerable to someone who upholds the best interests of those directly effected by the outcomes of that organisation how can we ever be sure that they are operating properly and spending that public money well?

You can see I am having difficult right now in pinning down one or two succinct points to raise with direct relevance to the Minister and being sure those are things that Parliament could take action over.

But I am sure there will be a follow up letter/email to be sent – and writing this blog post has helped me a little to see how that letter could take shape.

My MP’s cover letter in full:

13 August 2010

Dear Mrs Groves

I have now received a reply to my letter from the Department of Health regarding Myalgic Encephalomyelitis.

I am enclosing the Minister’s Reply which, as you will see, sets out the current situation with regard to this issue and confirms the website address on which further information can be found.

My thanks, again, for having raised this important matter with me.

Your sincerely

pp Michael Fabricant

The Minister’s response in full to my original emails forwarded by my MP:

2 Aug 2010

Dear Michael

Thank you for your letter of 20 July on behalf on your constituent Ms Rachel Groves of xxxxx, Lichfield, WS13 XXX about chronic fatigue syndrome/myalgic encephaloyelitis (CFS/ME).

I assure your constituent that we understand how distressing CFS/ME is for individuals and their families and carers.

The National Service Framework (NSF) for Long-term Conditions, which was published in March 2005, set out a clear vision of how health and social care organisations can improve the quality, consistency and responsiveness of their services and help improve the lives of people with long-term conditions, including CFS/ME.  NHS organisations are expected to demonstrate that they are making progress towards achieving the level of service quality described in the NSF.  As a neurological condition of uknown cause, the Quality Requirements of the NSF apply equally to CFS/ME as they do to any other neurological condition.

Funding for CFS/ME services is currently a local matter for Strategic Health Authorities and Primary Care Trusts.  Although the Department provides strategic leadership to the NHS and social care organisations in England, it is for local NHS organisations to plan, develop and improve services for local people.  These bodies are therefore best placed to respond to patients’ concerns and needs.

Your constituent may also be interested to know that the Department of Health funds research for health policy development, clinical and applied health research in the NHS, and the NHS costs incurred in supporting research funded by other bodies such as the research councils and charities.

As far as current UK research into CFS/ME is concerned, the bulk of the publicly funded work is being undertaken with funding from the Medical Research Council (MRC), which is one the main agencies through which the Government supports medical and clinical research.  In 2008/09, the MRC’s total expenditure realting to CFS/ME amounted to £728,000.  The MRC is an independent body that receives its grant-in-aid from the Department for Business, Innovation and Skills.

In 2008, the MRC set up a new group to consider how it might encourage new high-quality research into CFS/ME and partnerships between researchers already working on CFS/ME and those in associated areas.  The Group is chaired by Professor Stephen Holdgate and brings together leading experts in CFS/ME and from associated fields that may be involved in the underlying mechanisms of CFS/ME, as well as from the charity sector.

The aim of the Group is to look at new ways of encouraging new research in the CFS/ME field by looking not only at new technologies but also at associated areas that could help inform on the diverse range of symptoms and possible underlying causes of CFS/ME.  The mRC hopes that this will encourage new research towards understanding the causes and subtypes of CFS/ME and lead to an advancement of knowledge in this field and the development of new therapeutic approaches.  The Group has met twice and notes of the meetings can be found on the MRC’s website are www.mrc.ac.uk by typing ‘cfs/me group notes’ into the search bar.

I hope this reply is helpful.

Paul Burstow

Approved by the Minsiter and signed electorincally in his absence to avoid delay

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