Monday, July 8, 2013


Had the following through from Edd Hair
Assistant Private Secretary, Minister of State for Care and Support

This is the follow through to the meeting we had with The Minister and the Deputy PM last year.
I hope that some of you find time to give response to teh consultation.


Further to my email below, the minister asked me to keep a watching brief on policy relating to spinal muscular atrophy, and to write back to you when I had something helpful to pass on.

First of all, I wanted to make sure you were aware that the UK National Screening Committee’s (UKNSC’s) consultation on screening for SMA was now underway. The review of screening policy for SMA is taking place from May 2013 to May 2014, and the UKNSC are seeking views by email until 5 August. Further details are available on their website, and I would encourage you and your supporters to write in with your views:

I know one of the other areas of focus for your campaign was funding for research. In particular, you mentioned the work of Professor Gillingwater's research team at the University of Edinburgh. The overall focus of their research is on cellular and molecular mechanisms that regulate the form and function of the nervous system in health and disease. The UK Research Councils are the appropriate public funders of this type of research, and the research team's webpages acknowledge funding support from the Biotechnology and Biological Sciences Research Council.

The Department of Health funds applied health research in England through the National Institute for Health Research (NIHR). The NIHR biomedical research centre at Great Ormond Street Hospital and the Institute of Child Health has carried out research on spinal muscular atrophy. Applied health research in Scotland is funded by the Chief Scientific Office.

I’m sure you / Professor Gillingwater will have already pursued a number of funding opportunities, but in case not, here are further details of the funding opportunities provided by relevant organisations:

These organisations are independent and do not ring-fence funding for particular projects, however all organisations consider applications in open competition, with awards being made on the basis of the scientific quality of the proposals made. Decisions are taken independently, according to the long-established ‘Haldane principle’. If Professor Gillingwater has not already done so, I would certainly encourage applications to these various funding sources. I’m sure the minister would want me to pass on his apologies that he can’t be more directly helpful with influencing funding bodies – which I know was the central point of your email below - but I’m sure you will appreciate the importance funding decisions being made on merit and without the interference of ministers.

You might also be interested to know that the National Institute for Health and Care Excellence (NICE) has been asked to develop a clinical guideline on neurological problems.  The guideline will provide the underpinning source of evidence for a quality standard on the same topic.  (Both documents effectively set out what good care looks like, and are used by CCGs to inform the services they commission).

The exact scope of the guidance, including which conditions will and will not be covered, will be determined by NICE through consultation with stakeholders, but you may wish to keep abreast of work on this topic as it develops.  Once NICE initiates work on this guidance, further information will be available on NICE's website at You can see ‘neurological problems’ on the list of guidelines referred on this page: and may want to write to NICE to seek further confirmation for exactly when they intend to develop this guidance further, and to ask that you are engaged / can become involved at that stage.

Finally, you may be aware that NHS England took on their formal responsibilities as of 1st April this year. This means that, in effect, NHS England is responsible for determining clinical policy (including policy on the diagnosis and treatment of spinal muscular atrophy). The government sets out a high level ‘Mandate’ to NHS England which sets out strategic priorities on a general level (including ‘domain two’ which focuses on long term conditions); and it is for NHS England to determine how to deliver against the objectives set out in the Mandate.

You can view the Mandate here:

You might also wish to write to NHS England for more information on their intentions around clinical policy in this area. The relevant contact would probably be David Bateman, who is the National Clinical Director for acute and chronic neurological disabilities.

I hope the above is of interest, and apologise for not having been in touch sooner.

Yours faithfully,


Edmund Hair
Assistant Private Secretary, Minister of State for Care and Support
Department of Health, 79 Whitehall, SW1A 2NS
E: | T: 0207 210 5549

No comments:

Post a Comment