October 2006
As you know the next phase of the EPICure study is well underway and many of you have already had visits from the assessment team. With the help of all the EPICure children, parents and teachers the study continues to go from strength to strength. It remains the best long-term follow up study of extremely premature babies in the world. This success meant that we were able to get funding from the Medical Research Council. With this funding we have been able to put together a very comprehensive assessment that will tell you many things about your child’s skills and health. Fortunately this assessment is also great fun to do!
We realise that not all of you have returned your consent forms to us yet, but it is not too late so post the forms back to us as soon as you can. If you need some more forms, or if there is anything you would like to talk about first, please phone Heather on the number above, or email us: epicure@nottingham.ac.uk. The assessment can be done at home or at your local hospital; it doesn’t have to be done at school.
We visited Rabeka at school and she has written about what the day was like
Mum and Dad told me that some Doctors were coming to my school to talk to me and do some games and I had to ask a friend to do this with me. The Doctors were really nice and I had a very nice day. Some of the games were easy and some were a little bit not as easy. But mostly the day was lots of fun. When we finished, we felt very special. We were the only ones in our school to help with the study and Mrs Hickman our Headteacher was very proud of us. I think all early babies should do this study as it helps other early babies and it is lots of fun.
We’ve not had our visit from EPICure yet – what does it involve?
Usually we come and visit you in school. You’ll see two people, one of them is a children’s doctor and the other is a psychologist. The visit lasts most of the school day and during that time you get to do loads of games and puzzles. This time around we’ve even got some computer games to play! None of the tests hurt or are unpleasant and there are definitely no needles! We’ll see how tall you are, how heavy you are and how big your head is! There’s a little bit of drawing, reading and a tiny bit of maths. You also get to blow into a machine to see how big a breath you can blow out.
A Parent’s View
When we first were asked to take part in the study and assessment we were naturally concerned that this might make our child stand out from the rest of her classmates and peers. We all want our children to 'fit in' and not be seen to be different. However, to us the importance of the study outweighed any fears we had. Joe and Sam who spoke to us about the study put our minds at rest that the day would be seen as great fun for the children involved and it would give us an understanding of how far Rabeka had come. Rabeka had been born at 23 weeks 5days, and weighed in at a massive 550grams (1lb 3oz in old money). So for us although we had our concerns, and a big part of us didn't want to revisit old ground, we were curious.
The day itself was brilliant, we stayed initially but soon realised that us being there had an adverse effect on Rabeka's performance in the games. She was more worried about our reactions than anything else. So, after 10 minutes we excused ourselves and let her get on with it. Sometimes you just have to let them go. When we returned later in the day, both Rabeka and Lauren (she was the other girl) had become even better friends and both of them felt very special. None of their peers had poked fun or made them feel awkward or uncomfortable, in fact quite the opposite they were both made to feel very important by the school.
The feedback ourselves and the school got was excellent, this has enabled us and the school to help with Rabeka's school needs even more, for us it was a win win situation for everyone, the study got what it needed, we as parents found how well our child was doing and the school got to understand how to help Rabeka with her education needs. So from being a 'scary' dealing with the unknown situation it became a very 'put your mind at rest' situation. I would recommend that if you find yourself not knowing what to do regarding the study, put the same amount of trust in the staff involved in the study that you had in the Special Care Baby Unit staff when your child or children were born. Trust them you just might be pleasantly surprised.
Getting to see everyone
When the EPICure children were 6 years old we managed to see 241 of them, thanks to everyone’s enthusiasm to take part. So far about 190 people have sent their forms back to say they want to take part this time. We’ve already seen about 160 of them!
We really need the rest of you to take part to continue this important work. Ideally we try and see children in their primary school before they go onto senior school. However, we can also arrange home visits or assessments at your local hospital if you prefer or if your child is already in senior school. All the information we collect is kept completely confidential.
The telephone interview
A few days after the visit we try to arrange a telephone interview with either Mum or Dad. This is aimed at getting information about children’s strengths, social skills, worries, mood and behaviour.
We tend to get much more information by asking parents rather than talking to the children about these issues. The interview varies in length depending on how much you want to say about your child. Usually it takes between 45 and 60 minutes so we arrange it at a time that is convenient for you.
Your chance to go to London and visit Great Ormond Street Hospital
If you enjoyed the breathing tests and computer games during your EPICure visit then you can, if you like, do some more at the world famous Great Ormond Street Hospital in London. We are working with the lung specialists there and they are seeing some of the EPICure children. They have loads of really clever machines that can tell you how well your lungs work and how good your breathing is.
We are generally offering these tests to anyone who lives within two hours travel of London because of travel costs, but anyone can do them if they are really interested. All the travel costs are paid and the children get a bit of extra pocket money for taking part.
In London you get to blow into a special machine, watch DVD’s and sit in a special box that looks a bit like a telephone box.
None of the breathing tests hurt at all. Between your 2 visits to London you get to wear a little thing on your belt that says how much exercise you do!
What are we going to do with all this information?
The previous EPICure studies have already been published in some of the world’s most important medical journals. The results have been presented and discussed all over the world. Already the results have helped to improve how preterm babies are treated.
We hope that the 10 -11 year follow up study will give us much more information about how the EPICure children are doing in school, both academically and socially. It will look closely at problems with concentration and attention span. We will understand much more about how children’s lungs are affected if they have spent a long time on a ventilator whilst on a baby unit. The study will tell us more about growth & development, behaviour and how the children think. The questionnaires you fill in for us will let us know about impact on family life and general wellbeing.
What else is going on?
You may have heard that a new EPICure study called EPICure2 has started. This study will follow all the babies born in 2006 between 22 and 27 weeks gestation throughout England. This will help show how neonatal care has improved since your EPICure study started in 1995.
That’s about the end of this newsletter; we hope to have seen all the children by Easter 2007. Once we’ve done that we will start analysing all the information. Then we will be able to send out another letter with the results of this part of the EPICure study.
Thank-you all very much! Without the help of all of you the EPICure study would not be the important, successful study that it is. This newsletter goes out to families who have had very preterm babies and families that haven’t but are taking part in EPICure. We want to thank all of you for your hard work.
Parents, doctors, teachers, psychologists and many other people around the world are eagerly awaiting the results that together we will be able to discover.