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Issue 11 December 2014 www.togetherforshortlives.org.uk [email protected] Office: 0117 989 7820 Helpline: 0808 8088 100 Together for Families Helpline 7am-Midnight, 7 days a week 0808 8088 100 [email protected] www.togetherforshortlives.org.uk The Together for Families helpline provides information for families, carers and professionals; and for those calling on behalf of a friend or relative. It is open to anyone who looks after or knows a child or young person with a life-limiting condition. The helpline is open seven days a week between 7am and midnight. Outside of these hours, you can leave a message and we will In this issue: get back to you as soon as possible. Email [email protected] Text Santa to subscribe to Together for Families, or if you would like to contribute to a future edition – Meet the Team we’d love to hear from you. Family Companion Factsheets Follow us and join the conversation! Keir’s Story twitter.com/Tog4ShortLives facebook.com/togetherforshortlives Editors: Julia Hodgson and Claire Hodson Copyright © Together for Short Lives, 2014. The views expressed in Together for Families are not necessarily those of Together for Short Lives. Together for Short Lives is the leading UK charity that speaks for all children with life-threatening and life-limiting conditions and all those who support, love and care for them. When children are unlikely to reach adulthood, we aim to make a lifetime of difference for them and their families. Together for Short Lives is a registered charity in England and Wales (1144022) and Scotland (SC044139) and is incorporated as a company limited by guarantee (7783702). www.togetherforshortlives.org.uk It’s been a busy few months at Together for Short Lives Text Santa HQ with lots of exciting Save your seat on the sofa as campaigns taking us up Text Santa will be returning to Christmas! to our screens on Friday 19 December at 8pm! It promises to Text Santa will be returning to our be an evening filled with festive screens on Friday 19 December so delights including a George make sure you save your seat on the Clooney Downton Abbey special, sofa for an action packed evening filled with lots of surprises. We will be live music performances from tweeting live throughout the show so chart topping stars and surprise make sure you’re following celebrity guest appearances! @tog4shortlives for all the latest news. Together for Short Lives has been chosen as The Global Radio Make Some Noise one of six charities benefitting from the funds appeal day took place on Thursday 9 raised during the appeal, which will help October, raising a fantastic £1.1 million us continue our work with local children’s through donations, auctions and hospice services that support and care for seriously ill children and their families. fundraising events. Together for Short Lives was the main beneficiary charity for the appeal – turn to page five for a CITV round up of the day’s events. Throughout December in the lead up to the Text Santa appeal show, Our family factsheets are available to CITV have been broadcasting a series of short films, highlighting download from the Together for Short young fundraisers. Lives website for free. Turn to page three for further information on how One of the short films features an inspiring young girl called Abbi who fundraises for Rainbows these can be used alongside our new Hospice for Children and Young People. Her brother Ryan, who was diagnosed with Duchenne Family Companion. The factsheets Muscular Dystrophy at the age of six, is supported by the service and Abbi also attends the detail further information on a wide sibling support service. variety of subjects, helping to support Abbi and Ryan share a love for art and have both sold paintings to raise money for the hospice. families caring for children with a Abbi enjoys creating canvas art and uses her skills to produce bespoke pictures made from life-limiting or life-threatening condition. buttons. Over the past couple of weeks, she has been producing Christmas cards and selling them at the hospice, raising money for ITV Text Santa. You will see that we are starting a new regular feature in this edition of Together The film shows the family at their home with Tricked magician Ben Hanlin, who stopped for Families called Meet the Team. by to perform magic tricks for the family with Meet the Team will highlight someone buttons! The footage also shows Abbi selling from our organisation, asking them her Christmas cards in the hospice. Abbi is five quick questions to give you some hoping to raise hundreds of pounds selling her bite size information on their role and cards for Text Santa! involvement with Together for Short Abbi told Together for Families: “I really enjoyed Lives. Turn to page four to see our Q&A selling my cards for Text Santa and was so with parent trustee Richard Strawson. pleased to have raised as much as I did. On behalf of everyone at Together for People said they were surprised I had made Short Lives, we would like to take this the cards as they looked so professional and time to wish all of our readers a very that made me feel very proud. It was also great fun when Ben came to our house, that was the Merry Christmas and Happy New Year... best part of the day. He did lots of magic tricks see you in 2015! with buttons, which were brilliant. I have seen Claire Ben on TV so it felt weird and really special to have him in my house.” Center Parcs short breaks Over the past year, ten of our families have enjoyed short breaks courtesy of Center Parcs. We are delighted that Center Parcs have once again donated ten more short break holidays for Together for Short Lives family members. The breaks can be taken at any of the five UK Center Parcs village locations – Whinfell Forest in Cumbria, Sherwood Forest in Nottinghamshire, Elvedon Forest in Suffolk, Woburn Forest in Bedforshire and Longleat Forest in Wiltshire. Accommodation will be in a three bedroom New Style Woodland Lodge. The breaks can be taken either for a long weekend (Friday to Monday) or midweek (Monday to Friday) but excludes school and public holiday periods. We are inviting members of Together for Short Lives’ Family Community to enter a draw to go on one of these holidays. To register your interest, please email your contact details to [email protected] by Friday 9 January 2015. Please include details of your child’s condition and access requirements. Together for Short Lives will contact the lucky families and organise the holiday for a convenient time. All holidays need to be taken by 1 August 2015. Good luck! www.togetherforshortlives.org.uk twitter.com/Tog4ShortLives facebook.com/togetherforshortlives 2 Family Factsheets We’re delighted to launch our updated range of family factsheets that can be used alongside the new Family Companion. There are a total of 17 factsheets available that offer key information in bite size chunks, detailing information on the following topics: To give an idea of the type of information • Parent Support Groups that is included, we have highlighted two • Children’s Hospice Services factsheets to describe in further detail. • Making a Complaint Parent Support Groups (one for each UK nation) This factsheet provides information for • Grants and Wishes families that care for children with life-limiting or life-threatening conditions, detailing • Short Breaks and Holidays some of the main charities and support • Emotional Support and Counselling groups available for them. It includes links to organisations offering a wealth of information • Care Planning in Advance together with emotional support and/or • Transport practical help. • Aids and Equipment Understanding Siblings’ Needs • Spiritual, Religious and Cultural Wishes This factsheet has been designed to help parents who are worried about talking • Benefits to siblings about their brother or sister’s diagnosis and how this affects them. The • Understanding Siblings’ Needs factsheet also lists some useful organisations • The Child Death Review Process that can support parents and siblings. (England) You can download these resources for free at • The Mental Capacity Act the Together for Short Lives website: (England and Wales) www.togetherforshortlives.org.uk. Special Educational Needs and Share your experiences of childcare Disability (SEND) Reforms The Family and Childcare Trust want to speak to parents of Since 1 September, key parts of the new SEND system, brought about by children with special educational the Children’s and Families Act 2014, have been in place across England. needs and disabilities. The reforms, which include joined-up assessments, plans and services They are making a series of short films and for children and young people with SEND aged 0-25, should be fully written ‘top tips’ with parents of children with implemented by April 2018. special educational needs and disabilities offering advice to other parents about In the next edition of Together for Families, Don’t forget that we provide a number of accessing, choosing and paying for childcare. we will hear from James Cooper, our Public online resources to help make sure children These are funded by the Department for Affairs and Policy Manager, on whether children who need palliative care can benefit from the Education and will be shared on their website, with life-limiting conditions and families reforms: www.togetherforshortlives.org.uk/ through their network of Family Information are benefitting from the new system. In our sendproject/resources. Services and with other partners in the summer 2015 edition, we plan to reflect on Independent Parental Special Need Advice childcare sector.