Tymes Trust Alert 2013-04 Message from Jane 3 April 2013 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== JANE COLBY'S RECORDED PRESENTATION For schools, parents, Local Authorities ====== Just 25 minutes long, this talk with 10 slides shows how the Department for Education's new statutory guideline helps children with ME. http://www.nisai.com/Articles/350386/Nisai/News/Jane_Colby_on.aspx ME can be so severe and chronic that the education system has great difficulty in coping with it. As a Head Teacher I learned that the best thing to do, is just to do what works. And that will be different in different cases - but it must comply with this new government guideline, and that's what my talk explains. It is significantly different from its predecessor (the 'Access to Education' guideline). I start with a look at the title: 'Ensuring a good education for children who cannot attend school because of health needs'. The Department states that this 'applies equally, whether a child cannot attend school at all or can only attend intermittently.' It applies to children in all types of school, free schools, academies, state schools, private schools, and those who are not on the roll of a school. It's the Local Authority's responsibility to ensure that these children get a 'good' education. The whole guideline is based on the question of what's best for each individual child. In my emails and phone calls with the Department, they have said to me that they really do want the child to know that: 'It is not their fault'. They are ill. It is so easy for a child to feel a failure when actually it's the system that is failing them. Remember, a keynote of the guidance is that there must be *no blanket policies* for any particular health condition, nothing inflexible, no lists of what will and won't be done for any specific condition. That's one of the 'should nots'. I have taken care to examine the growing controversy of hospitals 'prescribing' graded attendance programmes which schools and tutors often feel they must follow, despite families telling us they have become a focus for conflict between them and the school. Such programmes that I have so far come across have run contrary to several aspects of this new statutory education guideline. In this talk, I explain why. It is important that in liaising with medical professionals, education professionals do not abdicate their own role. Disability and equality legislation is also relevant. ME involves disability within the brain, something I discuss in my talk, and we must not be guilty of discrimination. It takes time and energy to heal, together with sufficient recuperation, and because there is no cure, the National Institute for Clinical Excellence makes it clear that no treatment of any sort need be accepted. I understand that some schools have erroneously believed that the family must accept a hospital's management programme for their child, which is clearly contrary to NICE. To go back to the key point of this guideline; everything must be done to address the child's individual needs, rather than impose some blanket policy or programme. But there are many practical ways of doing this, and really much of it is down to common sense and building trust and good relationships. And, of course, modern technology and virtual education are becoming very successful and an excellent alternative or adjunct to other forms of education. In that connection, I must thank the Nisai Virtual Academy for enabling me to make this presentation and for hosting the webinar on which it is based. Without going into lots of medical detail, I do touch on the problem of the different terminology (ME and CFS) so that any school listening to the talk understands that they need to play safe, because of the potential for relapse in cases of ME, under whatever name. So now it only remains for you to click on the link! There should be something there to help everyone and this is a tool you can send around to others. The link to the guideline itself is also there, if you wish to read it after listening. All our best 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 ====== READ ALL PREVIOUS ALERTS AND SUBSCRIBE TO MY LIST AT www.tymestrust.org To unsubscribe, send an email via the website Contact Us form. ====== You are welcome to redistribute or reprint this email without seeking our permission provided: 1) you do not abbreviate, add to, or change the text in any way; 2) the authorship information is retained; and 3) www.tymestrust.org is credited as the source. Jane Colby is Executive Director of The Young ME Sufferers Trust. She was a Headteacher for nine years, a member of the government Chief Medical Officer's Working Group on CFS/ME and co-authored ME/CFS In UK Schools, the largest epidemiological study of ME to date. She is a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts. Copyright (c) 2013 The Young ME Sufferers Trust