Revision of NICE Guideline on ME/CFS – latest state of play | 21 January 2013

www.meassociation.org.uk/?p=14183

by Tony Britton on January 21, 2013

At the beginning of January, The ME Association wrote to NICE (National Institute for Clinical Excellence) to ask for clarification on what was happening regarding the expected 2013 review of the NICE guideline on ME/CFS.

The following reply was received this morning:

Dear Dr. Shepherd,

NICE’s Senior Management Team, with the approval of the NICE Board, has currently suspended the routine review of the need to update clinical guidelines 3 years after their publication. This suspension is from January 2013. A new process for reviewing and updating guidelines is being developed and we will be considering the timing and process of reviews and developing a process for faster more responsive updates of our guidelines. Our aim is to enable us to consider new evidence more frequently and to update aspects of guidelines more rapidly. A new process for both reviews and updates is being developed which we will be rolling out during 2013/14.

A comprehensive review is also being undertaken of our entire portfolio and all guidelines will migrate onto the new timings for more frequent reviews during 2013/14. Once we have firmer detail about the new timings for reviews and updates we will notify stakeholders of the new review dates.

Please let me know if you have any further questions.

Best wishes,

Oliver Bailey

Project Manager – Centre for Clinical Practice

National Institute for Health and Clinical Excellence

10 Spring Gardens | London SW1A 2BU | Web: http://nice.org.uk

The MEA is currently in the process of preparing all the data from their 2012 patient evidence survey on CBT, GET and Pacing into a report. We were intending to send this report to NICE as part of new patient evidence that would need to be considered in the ME/CFS guideline review process.

Consequently, Dr Shepherd has written back to NICE today to check on whether we must proceed on the basis that there is now some uncertainty as to whether the ME/CFS guideline will be reviewed in 2013

And with no real information as to how the new NICE guideline review process will operate in future it is impossible to assess what role stakeholders such as the ME/CFS charities will have in a review process that will clearly be much faster, and possibly more frequent, than the process it is replacing.

Our parliamentary colleagues on the All Party Parliamentary Group on ME have been informed about this development.

Educating children with health needs New Statutory Guidance for Local Authorities

www.education.gov.uk/aboutdfe/statutory/g00219676/health-needs-education/special-health-needs-education

Or  -  http://tinyurl.com/akzby6h

Department for Education accepts TYMES TRUST advice
New Statutory Guidance for Local Authorities

Following received from Jane Colby, Tymes Trust (The Young ME Sufferers Trust)
(Tymes Trust Alert 2013-01 : Dept for Ed accepts TYMES TRUST advice)




DEPARTMENT FOR EDUCATION ACCEPTS TYMES TRUST ADVICE
New Statutory Guidance for Local Authorities

======

During much of 2012 we have been liaising closely with the team at the
Department for Education writing the new statutory guidance on the
education of children with health needs. Its official title is: 'Ensuring
a good education for children who cannot attend school because of health
needs: Statutory guidance for local authorities'.

When it was finally published last week, I was delighted to see that
Ministers have kept this guidance substantially the same as the final
draft I had been working on. This draft was mentioned in the last Forward
ME meeting and in my Alert to you of 7 November.

If you are one of my Twitter followers you'll have read my tweets of 9
January, giving the link:
http://www.education.gov.uk/g00219676/special-health-needs-education

Nothing is perfect, but we believe that this new guidance is a big
improvement on what has gone before. Many former sticking points have
been addressed.

For example:

It is made clear that letters to school from your GP are perfectly
acceptable, not just information from a consultant, and it is also stated
that delays in providing suitable education due to waiting for a
consultant's opinion or asking for repeated opinions from a consultant
are not acceptable and should not occur (paras 11/12). It is spelled out
that the 15 days' absence by which time arrangements should have been
made can be consecutive or cumulative.

Virtual education can be provided on its own when necessary (para 7)
without attendance at a school or a unit being part of the package.
Whilst the government would like children to have face to face education
when they are well enough, this does not preclude a virtual education
course when appropriate.

A reintegration plan for a return to school is not required until the
child actually appears to be approaching the stage when a return might be
appropriate. This should remove pressure to plan for a return before it
is likely to be sustainable.

The Department also makes clear that sick children cannot just be
arbitrarily removed by the school from their roll.

Moreover, the Local Authority's responsibility to ensure that sick
children get the education they need applies over all types of school
including Academies and Free schools and also Independent schools.

The Local Authority, however, does not have to get directly involved if
suitable education is already being provided, so we believe it may often
fall to parents to alert the Local Authority if they feel that a school
is not providing suitable education for their child. There is plenty of
quotable material in this guidance with which to make your case, however.

I have been giving advice to government officials and Ministers about the
education of children with ME for many years and at last it has borne
fruit.

It's amazing that the first ever 'Guidelines for Schools', describing how
schools can help children with ME (which I wrote with Dr Betty Dowsett)
were launched way back in 1991. I then wrote the first specialist article
on ME and education, which appeared in the British Journal of Special
Education in 1994, entitled 'The School Child with ME'. In 2001, Special
Children journal published my '10 Points on the Education of Children
with ME', and gave Tymes Trust permission to reprint it at
http://www.tymestrust.org/pdfs/tenpoints.pdf. And there have of course
been many other articles and committee work over the years.

So whatever you are struggling with, please do not give up. Hard work and
persistence can be rewarded. The same principle applies in learning to
manage this distressing illness in the way that is right for your own
child, rather than struggling with how some official wants to tell you to
live your life!

FOLLOWING MY TWEETS

Twitter is the quickest way to find out my news (and the occasional bit
of personal chat) and if you don't want to sign up to Twitter, you can
keep up with my tweets via www.tymestrust.org.

All good wishes,

Jane

Jane Colby FRSA
Executive Director
The Young ME Sufferers Trust
PO Box 4347, Stock, Essex, CM4 9TE
www.tymestrust.org
Tel: 0845 003 9002

Holder of The Queen's Award for Voluntary Service:
The MBE for Volunteer Groups