Contents UK Youth National Members Group (UK) Extended Services for Children with Sickle cell (London UK) New Service for Young Carers (London UK) We have a voice - New skills group for girls with Sickle Cell Disorder (London UK) Hackney Sickle Cell and Thalassaemia Youth Group is on the Move (London UK) Photo Shoot - Brent (London UK) Brent Sickle Cell & Thalassaemia Centre - Adolescent Group (London UK) Newham Young Person's Support Group (London UK) Children's Workshop (London UK) If there is not a group near you or you cannot get to a group why don't you get a pen-pal?

	LET OUR VOICES BE HEARD!!!!! UK Youth National Members Group (UK) Encourages participation from young people in the decision making process, and empowers them to be counted within the structures that are key to them. The National members group is made up of young people aged 15-25 from across the UK. Young people are elected to the group by young people themselves. Elections take place at the groups annual youth conference including England, the Channel Islands, Scotland, Wales and Northern Ireland. A key activity of the NMG is the organisation of an annual youth conference. These conferences aim to develop members themselves in areas of decision making and organisational skills as well as giving young people from the UK a platform to express their views on issues such as education, bullying and young peoples rights. This years conference ‘Mission Impossible focussed on issues surrounding youth participation. In addition to this, the group advise other organisations on issues relating to young people take an active role within other organisations and promote youth participation locally on issues relating to young people.

	Extended Services for Children with Sickle cell (London UK) The North Middlesex Hospital NHS Trust (London UK) has extended the service that they provide for children with Sickle Cell, by having a dedicated Sickle cell Nurse. This position has been funded by the Roald Dahl Foundation. The North Middlesex Hospital has over recent years improved the service that they provide to children with Sickle Cell and their families by the setting up of the Fast Track Access System. This allows direct access to the Paediatric Unit when the child is unwell, thus avoiding lengthy waits in the Accident and Emergency Department and inappropriate treatment. The aim of this service is to provide a home service for children during acute episodes of pain as well as periods of good health, therefore reducing the frequency of hospital admissions, and length of stay. We hope that by providing support and advice at home for the child and their family during a painful crisis, it will encourage self management and promote healthy living. Projects that we have been looking into is the provision of a support group for older children/adolescents to help with the transition to the adult service at the hospital. We have also run a trial with this age group in the use of an interactive computer system( bio feedback) which has established with the adult sickle cell group to improve relaxation and coping strategies during crisis. For more information, please contact : Debbie Twist Children’s Home Care Nurse For Sickle Cell Keats’s Children’s Outpatients North Middlesex Hospital NHS Trust Telephone: 0208 887 4301

	Information about Local Groups There are a large number of Support Groups around the U.K, which provide care and support to Sickle Cell sufferers and their families. Many of then arrange activities, outings and events for the whole family, which includes the children. So why not contact us to see what is available in your area. Contact Lorna Fletcher for children’s Groups and Support Groups.

	Young People Support Groups As a sickle cell sufferer like myself, I am sure that you will agree that the support of families, friends and associates plays a vital role in our lives, especially during adolescence. When I was eighteen I came to appreciate the help given to me, which enables me to cope with my illness, and the ability to deal with every day life. I believe that further benefits can be derived from sufferers like you and myself, getting together to discuss issues and situations such as education, peer group pressures, achievements and relationships and other problems which we may encounter in our every day lives. Forming a support group would enable us to provide a forum where we could discuss how to communicate better with the NHS, doctors and other agencies, which provide medical care and treatment for us. There is an existing support group, but adolescents are not adequately represented. This is mainly because not many young people get involved in it's activities. However, I believe we could work alongside this group to promote a greater impact of awareness in our community, and to enhance our ability to cope with the condition.

	Sickle Cell Society 30th Anniversary Workshop A number of children attended our fun- filled IT workshop on 29th May 2009 to celebrate our 30th Anniversary. The children became Apprentices for the day and met Alan Sugar-Lumps in the boardroom. The young Apprentices were split into two teams (the Eagles and Dragons) and were challenged by Alan to complete a number of IT related tasks, for a job in his Sugar- Lumps factory. Both teams worked hard and impressed him with their new skills, which they learnt on the day. All the young Apprentices were awarded medals, but the team Leader (trainer) of the losing team, the Eagles was fired!! and sent home without any pizza! After, they had a great game of “Deal or No Deal” and won prizes and a cheque for £25,000. They generously donated all of it to the Sickle Cell Society. What good role models they are, it’s a shame it’s only pretend money. Why not watch the video clip (click here) and take a look at their photos below.

	Photo Shoot - Brent(London UK) The Brent Sickle Cell Support Group (London UK) held their sponsored walk to raise money for an annual day trip for people with a sickle cell disorder. They walked from Putney Bridge to Vauxhall Bridge Well Done!

 

	Brent Sickle Cell & Thalassaemia Centre (London UK) Adolescent Group We realise that growing up with sickle cell and pain is difficult, and especially when you are an adolescent. One issue is being admitted to the adult ward when you are in hospital and being seen as an adult. We have had the chance to speak with many of you about some of these things and have also spoken to the doctors. Our talks made it clear that we need to pay attention to the idea of transferring from child care to adult care, and to prevent the problems often said to go with adolescents who have sickle cell. We are trying to do something about this and need your help. We would like you to give us your thoughts on this issue by filling out a questionnaire, and coming to one of our group meetings. Because of your experiences of living with sickle cell disease, your feedback will help us decide if a programme of support is important. Your feedback will also help us know exactly what to do. Please phone us if you are interested, or if you have any questions to ask. Venue: Central Middlesex Hospital, Postgraduate Centre, London, NW10. UK In the school holidays throughout the coming year, we will be organising a number of Sickle Cell educational workshops for young people aged 14-18 in North and South London, so contact Kofi from the Brent Centre on 0208 453 2050 for workshops in North London You can also have a look at our web site

	Newham Young Person's Support Group (London UK) Newham Sickle Cell & Thalassaemia Centre in London is setting up a young persons group. They meet in the holidays and need lots of young people with ideas how you would like to run the group and what activities you would like to do. If you live in the area and would like to go along please contact the centre on: 0208 821 0801 Everybody welcome!!!!

	Children's Workshop (London UK) We realise that having sickle cell and pain is difficult when you are a child. Sometimes you may not understand what the doctors or your parents tell you about sickle cell, or you may not find it easy to explain and talk to your friends or other children in school about it. We have been thinking and after talking to a lot of children about this, we decided to do some workshops. For these workshops, we would get together some children with sickle cell and find out how we could help. We would talk, draw, and show you some videos about sickle cell. We would also tell you some things that you can do at home to make you feel a bit better when you are ill and in pain. We would have these workshops during your school holidays so that you do not miss school. In order to help us find out how much you know about sickle cell, and the things you do, and what you have learnt, you would be asked to fill out some questions before we start and at the end. You would be invited to attend 4 workshops and we think that you would find them interesting. You can think about it and phone us if you are interested in taking part or if you have any questions to ask. CONTACT: Kofi Tel: 0208 453 2050 Brent Sickle Cell & Thalassaemia Centre VENUE: Central Middlesex Hospital Postgraduate Centre NW10 There are workshops during the school holidays for 7-13 years old in North and South London.