SPEECH AT THE HOUSE OF LORDS
I am putting my Executive Director's speech here on my blog as it will be a while before the official commemorative booklet about Tymes Trust's 25th Anniversary is available for you to read.
SPEECH BY JANE COLBY, HOUSE OF LORDS AFTERNOON TEA, 5 JUNE 2014
After the welcome and introduction by Lord Clement-Jones, Tymes Trust Founder Patron
Well, a 25th anniversary is really special, isn't it? It's something to celebrate. Or is it? If we didn't have this dreadful disease to contend with, if there were a cure, so that children didn't have to spend years of their life in darkened rooms, in pain, Tymes Trust wouldn't be needed.
Maybe one day. Until then, what we are celebrating is the success of young people succeeding against the odds, and the dedication of those who are helping them. And of course, there are presentations to be made. More of that shortly.
This week is volunteers week. As you know, everyone at the Trust works pro bono. Along with our guests, we have some of our Advice Line Team here. All of them are either parents of young people with ME, or people who've had to cope with ME themselves. That's because it's so important, when people call us, that they have confidence in the person they speak to, someone who knows from personal experience what they are going through. We also have Trustees here, and Patrons. Our newest patron is John Whittingdale MP, who's often on our screens because he chairs the Select Committee on Culture, Media and Sport. And we have some of the professionals who work with the Trust. A great team. And of course, we have our partners, the CEO and staff from Nisai Learning.
So let me give you a theme for our 25th anniversary year: FIGHTING INJUSTICE. All of us are doing that. It's a big part of our work. Because, in helping families whose children have ME, we are seeing some appalling injustices. How can this happen? In my view, it's because people who should be listening to the children themselves, about how they feel, how ill theyare, often don't. The successes of the young people we're going to hear about show how important it is that we do listen to them and meet their needs. Because that's why they've been able to succeed.
I first became aware of injustice at the age of 4. In hospital, on my own (no parents allowed) sharing the room with two big rough boys. Their dad was let in. I think the nurse liked him. [Laughter] And he gave them a water pistol. When he left, they squirted it at me. Down my neck. Sounds funny now, but it wasn't. I'd just had my appendix out, I was cuddling the blanket round me, my mummy wasn't there, I wanted to go to sleep. I asked them to stop. When they wouldn't, I told them to 'Shut up!' I'd recently heard that somewhere and I knew it was rather rude.
When the nurse came I told her all about it. She rounded on me. "Where did you get that from? You mustn't use that sort of language." I have no idea whether she told the boys off. I don't remember that. I do remember the injustice. From a nurse. Whom I had trusted. On my own, at the age of 4. Why am I telling you this? Because children remember. If an adult doesn't listen, isn't kind, doesn't help, they remember. It can colour their whole lives.
Terry Waite, one of our Patrons who's here today, launched our book of poetry by young people with ME in 2004. Here's what one of them wrote.
Please don't tell me I look just fine,
Please don't say that I'll be right in no time
When I can hardly make it through the day.
You don't have to live this life
So please don't tell me you know what it feels like
Or how it really is to be this way.
Please don't tell me I'm just a little tired,
Don't shake your head and say I'm not really trying
When I want to spend some quiet time in bed.
"Come on, let's get you out the house,
We all have our ups and downs."
You haven't heard a single word I've said.
Then there's the little girl on the back of our new poster. Eight years old, writing to her therapist to say she doesn't like coming to see her because all she does is push her to do more, when she's not well enough. And on the cover, our new Young Officer, Ben Burgess, age 11: "No, you don't know best!"
I'll just read you what the late paediatrician Dr Alan Franklin said about that. I asked him, "What is the effect of trying to force children with ME into school?" He answered: "The family usually say, "We've had enough of this and wse're not going to see you any more. We're going somewhere else." So I asked, "Do you feel that's a healthy reaction?" Dr Franklin: "On the whole, yes. I think parents are pretty good at recognising what's what."
Ben isn't well enough to be with us today but we have his Young Officer's pack with us, and his Young Officer's Card : his title is Young Campaigner. Could Carla collect it for him, and maybe post it on? Carla was one of our young members for years and she's just joined our 26+ group. Let's give Ben a clap, in his absence. Well done, Ben.
During this 25th anniversary year, then, we are focusing on the theme of FIGHTING INJUSTICE. I was commissioned by an academic journal to document how parents of children with ME are, almost routinely it seems to us, blamed for their children's illness. And of course, once that happens, the children also don't get the education they need. This is a huge injustice. The working title of my piece is Nature Abhors a Vacuum: in the absence of a cure, doctors are blaming sick children's parents when their treatment doesn't work. Then at the end of June, we shall be alerting the media to proceedings the Trust is taking. I have promised not to say more at this stage, but it is quite high profile. And we are about to launch an investigation to gather more data on the bullying of families that is going on. And we shall publish that. Because it's wrong, isn't it?
As well as all this, we have just launched our Good Practice Guide to Education for Children with ME. This is for GPs, schools and families and you all have one in your pack. The GP is the doctor closest to the family and in the best position to offer regular support as needed. We're happy to talk with GPs and we do get approached by professionals for advice. It's an empowering document for GPs, who often feel they just have to go along with something educationally unsuitable, just because it came from a paediatrician. That's not correct.
Just as children remember injustice, they also remember those who really have listened, and have helped them. Music teacher Paul Willsher was nominated by a Tymes Trust member for all his help and support, to receive the Trust's Young Hearts Award. I should just say that the Young Hearts Award developed from the project with Terry Waite, because the day he launched the book became Young Hearts Day, when we remember children with ME everywhere. And what better than to recognise the teachers and doctors who will be remembered by their pupils and patients all their lives, for their kindness and support. [Paul was unable to attend; his Award was presented locally.]
And now we come to the Awards to students studying with Nisai Learning. I'm absolutely thrilled that last year 100% of the ME students passed their GCSEs and A-Levels, and 80% of them were A-C grades. That's above the national average.That really is a testament to their application and to the work of their teachers. [Citations and Awards].
Well done all of you. One more round of applause please.