Part 4.  Worcestershire County Council SEND, TYMES TRUST, and All Party Parliamentary Group (APPG) on SEND
 
Welcome to SENDIASS Herefordshire and Worcestershire
Special Educational Needs and Disabilities (SEND) Information, Advice and Support Service (IASS) covering Herefordshire and Worcestershire.
 
Listed under ME/Chronic Fatigue Syndrome   in the Worcestershire County Council SENDIASS support *A - Z*
Information

• Website: The ME Association
• Website: Tymes Trust

 
 
TYMES TRUST’s four page pdf
Response to the DoHSC Consultation Interim Delivery Plan on ME/CFS, begins with TYMES Trust appreciates the time and dedication of everyone contributing to and compiling the DHSC My full reality: the interim delivery plan on ME/CFS.  For too long this devastating illness has been shrouded in controversy; far too many Children, Young People and their Parent/Carers (and some professionals) have been harmed by ignorance and misunderstanding of the illness, resulting in inappropriate medical care, social care, education provision, child protection proceedings and professional gaslighting.
 
The recent changes within the NICE guidelines, and this UK Department of Health and Social Care Interim Delivery Plan on ME gives us some long-awaited hope; however, we have some reservations and comments.  Overall, the plan is positive, and the crucial task of re-education (if implemented appropriately) will certainly support system improvement and support professionals to deliver individualised, quality, care and understanding to those living with ME.
The needs of children and young people are different to those of adults. Ideally, discussions and planning for children and young people should be progressed as an independent section within the Interim Plan.  The changes within the plan need to be implemented with a sense of urgency to avoid further harm and subsequent declining health for our children and young people as ME has a huge negative impact at such a vulnerable stage of life.
 
TYMES TRUST also list their recommendations, including the fact that “a firm diagnosis of ME is needed as early as possible to ensure protection from disbelief and needless pressure from education and Social Services.”  TYMES Trust concurs with the comments and responses of their fellow Forward ME members including The ME Association, 25% Group, BRAME , ME Research UK.
 
 
All Party Parliamentary Group on SEND.  The Inaugural meeting of MPs to re-establish the All Party Parliamentary Group (APPG) on special educational needs and disabilities (SEND) took place on Wednesday 16 October 2024. It was standing-room only due to the level of interest from MPs and a long list of others who couldn’t attend but wish to be members of the group.
 
We are pleased to confirm that NAHT will again be providing the secretariat for the group. Olivia Blake MP was duly re-elected to chair of the group, along with Greg Stafford MP, Shockat Adam MP and Jen Craft MP, who were elected as vice-chairs,with a full list of 42 MP members.
The meeting discussed the previous work of the group, focusing on the importance of early intervention and had a brief discussion about next steps. The meeting was cut short by the division bell during a busy day in parliament.  The group will now be re-registered as an APPG and we will be arranging next steps and will keep you all up to date with progress and details of future meetings.  The officers of the group are now as follows:

APPG officers
Olivia Blake, Labour, Sheffield Hallam
Greg Stafford, Conservative, Farnham and Bordon
Shockat Adam, Independent, Leicester South
Jen Craft, Labour, Thurrock
 
The membership of the group are listed with this announcement, and include Chris Bloore, MP Redditch.

• You can follow the APPG for SEND on X via @appg_send
• To join the APPG for SEND mailing list, please click here
• If you or your organisation would like to speak at an upcoming meeting of the APPG for SEND, please express your interest here

•  A.P.P.G  •  Children  •  Forward ME  •  Government U.K.  •  M.E. Association  •  MP  •  N.I.C.E.  •  Tymes Trust  •  Worcestershire County Council  

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