Message from Jane
28 November 2014
Follow Jane on Twitter @JaneCColby
or read her tweets at www.tymestrust.org
YOUNG HEARTS DAY 29 NOVEMBER
*Gifts for young people
*Young Hearts Award Certificates
*New Project : Parent Perspectives
YOUNG HEARTS DAY GIFTS FOR YOUNG PEOPLE
Goodness, it's that time of year already!
To mark Tymes Trust's Young Hearts Day 2014, we will once again be
lighting a candle, and will post a photo on Facebook and Twitter. You may
like to do the same.
This year we have sent out surprise gifts to some of our young members
whom we know are going through a tough time. If you would like a gift for
your own child, please let us know by sending their details on the
Contact Us form at www.tymestrust.org
You can see some of the gifts here:www.facebook.com/tymestrust
This is a public page so you can view it whether or not you are a member
of Facebook. You can also check in regularly for Tymes Trust's news.
For those who are new to this tradition, the tragic story of why we chose
29th November as Young Hearts Day - our day to remember young people with
ME everywhere - is also there.
You can also follow me on Twitter @JaneCColby and follow the Trust
@tymestrust. If you aren't a member of Twitter, you can see my latest
tweets at www.tymestrust.org
YOUNG HEARTS AWARD CERTIFICATES
We'd also like to know about doctors, teachers and others who have been
kind, helpful and supportive to you. Young Hearts Day is a good time to
recognise these special people. You can nominate one of them for a Tymes
Trust Young Hearts Award Certificate; members of the Trust can have one
certificate free of charge. Send us the name of the person, and we will
post you a certificate. You can write to us, or use the Contact Us form
NEW PROJECT : PARENT PERSPECTIVES
As you know, 2014 is the Trust's 25th Anniversary year. We are working to
the theme FIGHTING INJUSTICE. We have chosen Young Hearts Day to launch
our final new project of the year; it will carry on through the early
part of next year and we plan to report on it for ME Awareness Day 2015.
We would like to ask you whether, from your perspective as a parent, you
feel you have experienced injustice in the way your son or daughter has
been treated. It seems to be a harsh reality that children and young
people with ME are still experiencing discrimination.
If our Advice Line Calls are representative, we realise that your
accounts may well involve the way the young person has been spoken to. A
few years ago, we reported briefly on some examples of this, and Tymes
Trust Patron Shirley Conran contacted us in concern; she, like us, felt
these discriminatory comments could only be described as 'cruel'.
As well as attitudes, we need to hear about any practical denial of
rights, for example: the children's right to education in the home whilst
not well enough to access education at school; their right to take a
public examination in the home if unable to attend an exam centre; their
right to have their disabilities taken account of when taking the exam.
Sometimes injustices happen because of misunderstandings about the
illness. It is important that we are made aware of these matters, whether
or not you feel you need advice on how to handle them. Having such
information helps when we campaign for improvements in the way that young
people with ME are treated.
Again, if our Advice Line calls are representative, you may feel you have
encountered injustice in other ways, perhaps in a medical setting. And of
course, you may have found yourself accused or suspected of neglect or
abuse; the Trust is now up to 136 such cases where we have been asked for
advice, and you will see from my 'False Allegations' paper, there are
many misunderstandings that can lead to unjust allegations:http://www.tymestrust.org/pdfs/falseallegations.pdf
It would be helpful if you could number your examples separately, rather
than running them all together. If you are emailing us, please use the
Contact Us form at www.tymestrust.org
. You can also write to us by post.
Naturally, your information will be kept confidential.
Please don't feel you have to write a long account. A short summary of
each example is fine for our purposes. We will contact you if we have
Anyone can submit information to us, whether they have joined the Trust
or not. The important thing is, if you want to be sure we include your
example in our records for this project, to let us have the bare bones of
it, whether or not you have consulted our Advice Line already. If your
child wants to include a comment, by all means include it with yours.
Now, I'm off to get our Young Hearts candle ready, and I'm hoping to hear
soon about the lovely people who have been shining examples of
understanding and support for you.
With all best wishes
Jane Colby FRSA
The Young ME Sufferers Trust
PO Box 4347, Stock, Essex, CM4 9TEwww.tymestrust.org
Tel: 0845 003 9002
Holder of The Queen's Award for Voluntary Service:
The MBE for Volunteer Groups
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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) 2014 The Young ME Sufferers Trust