Contents

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 recently extended the service that they provide for children with Sickle Cell, with the newly appointed Children’s Home Care Nurse. This position has been funded for 2 years by the Roald Dahl Foundation, which has also funded 22 other nurses throughout the UK to help children with epilepsy, head injury and haemophilia.

The North Middlesex Hospital has over recent years improved the service that they provide to children with Sickle Cell and their families by 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 new 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.

Initial projects that we are already 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 are also running a trial with this age group in the use of an interactive computer system( bio feedback) which has recently been 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 4654

  
   

 

New Service for Young Carers (London UK)

West London Family Service Unit has developed a Young Carers Project. This is aimed at young people who are caring for a disabled, sick or mentally ill parent or adult.

The project provides a group of young carers between 14-18 years of age.

The focus is on providing fun activities for the young people, enabling them to have some respite from their caring responsibilities. Alongside this their emotional and educational needs will be addressed through one to one support and through the provision of a homework club, with additional tutorial support.

How do I find out more?
By contacting Jason at:
289 Westbourne Park Road
London W11
Phone 0207 229 9941
Fax 0207221 7168
Email: westlondonfsu@contactbox.co.uk

 
   

 

We have a voice

New skills group for girls with Sickle Cell Disorder (London UK)

As well as all the usual services for children and young people provided from the South East London Sickle Cell and Thalassaemia Centre, Sarah Helps, Rebecca Harding and Kate Green, have recently started to run a group for girls with a Sickle Cell Disorder.

The group runs weekly and helps girls to get to know others with SCD, and to learn more about the disorder. Each week a new topic is put under the spotlight; how to manage pain, how to make and keep friends, worries about body image, and how to manage bullying, being just some of them. The girls have been taught relaxation strategies, which we hear have been tested, by mums, dads and siblings as well as the girls themselves! So far all the girls seem to be having a great time and learning a lot.

We are sure that the boy's group, to be run over the summer term will be just as successful. If you do not live in the South London area, but are interested in finding out more, please contact

Sarah Helps on 0207 414 1350 or e-mail: slhelps@mail.com

 

  
   

 

Hackney Sickle Cell and Thalassaemia Youth Group is on the Move (London UK)

Nice new premises, at 457 Queensbridge Road, Hackney E8 3AS. Telephone number 0207 853 6700. Fax number 020 7853 6709. They meet every last Sunday in the month. Young people between 11 - 18 are welcome! The following events are being organised for this year.

  • Young People's Talent Show
  • Disneyland Paris
  • Appreciation 'Do' for parents
  • Mystery - Annual Dinner

Don't forget if you live in Hackney, and want to meet someone of your own age with sickle cell, please come along or call the centre for further information.

Other people setting up a young persons group, Maria Denis, West London Family Service Unit, 289 Westbourne Park Road, London Wl l 1EE. Telephone 0207 229 9941.

  
   

 

Photo Shoot - Brent(London UK)

The Brent Sickle Cell Support Group (London UK) held their sponsored walk on the 3rd June 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 Vesna, Christina or Kofi from the Brent Centre on 0181 961 9005 for workshops in North London or

Beverly from the South East London Sickle Cell and Thalassaemia Centre on 0171 3588 or 0171 326 1495 for workshops in South 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 Comfort Okolo at the centre on: 020 8586 6386

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:
Christina, Elizabeth, Kofi
Tel: 0181 961 9005

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. Contact Beverly for information on the Workshops in South London on 0171 737 3588 or 0171 326 1495