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Helen House Newsletter.Pdf Autumn 2013 Learn about the Helen House refurbishment project – you could help Read about why stays at Helen & Douglas House make a difference See how music and play opens up a world of fun and communication for young people with life-shortening conditions www.helenanddouglas.org.uk Douglas House fun! Douglas House guests had an African themed day at the end of June with YOU told us! delicious cakes and biscuits, face painting and drumming workshops, thanks to Over 400 of you responded to our Spring Newsletter Survey in April. volunteers Sandie and Freya and PR Officer Bobbie. There was a themed dinner in the evening and volunteer Gill created a floral We looked at each and every reply to make It was also great for us to hear about the masterpiece for the dining room. The day sure we’re doing the best we can at keeping different ways you support the families who probably made quite an impact on our in touch about what matters to you. come to Helen & Douglas House; through visitors from First Hospice Moscow, who were The good news is that 92% are donations, the lottery, Christmas here to learn about Helen & Douglas House! happy with how often we’re More than cards, volunteering, visiting our talking to you. shops, in your community, We’ve listened to what you want 400 through your workplace, and to hear about, and here are the of you responded in memory of loved ones – to our Spring top three: Newsletter and many more ways. Survey • Family stories – see page 6 A big Thank You • Plans for the future – see page 4 to everyone for all • How your donations are used – see pages 8-11 that you do to help. Helen House Refurbishment Helen House opened as the world’s first children’s hospice in 1982. Now, over 30 years on, we really need to upgrade the house and improve the space we have, so Connect with us on social media... that we can cope with the growing needs of children with life-shortening conditions. Follow us on twitter See page 4 for information about our aims, twitter.com/HelenAndDouglas why we plan to do this and how you can Find us on facebook www.facebook.com/ help make it happen. HelenAndDouglasHouse Oxfordshire Business Awards At an awards ceremony in June, attended by 500 representatives of ANDREW IN THE DOUGLAS HOUSE GARDEN the county’s business elite, Helen & Douglas House was named as Oxfordshire’s Charity and Community Organisation of 2013. We are thrilled to have received this marvellous accolade for the charity. The award is now proudly displayed, next to the Thames Valley Charity of the Year 2012 award, in the glass cabinet in Douglas House reception. 01 ANITA WHO VISITS HELEN HOUSE 2 www.helenanddouglas.org.uk www.helenanddouglas.org.uk 3 Helen House Refurbishment... Our Appeal to You Helen House has been a place of respite, care and support for thousands of families, since it opened in 1982 as the world’s first children’s hospice. Now, over 30 years on, we have the • A more welcoming and spacious reception opportunity to upgrade Helen House area for children, their families and equipment. and improve the space we have, so • Better use of play and holistic therapy areas, that we can look forward to the future, so that children and their families can make responding to the growing needs of the most of their time together here. children with life-shortening conditions. Here Kathy Patching, House Manager, Helen How will it happen? • Refurbish the kitchen so it can better House, explains why we need the refurbishment. We have received some money from the deal with the demands of providing It is planned that Helen House will be closed for Department of Health that will allow us all day food and drinks for families. ‘When Helen House opened over thirty the refurbishment, which should take 6 months. to carry out some of the work that is needed, years ago I don’t suppose anyone would During this time children needing respite, • Improve the ‘flow’ between bedrooms, but with your help we could do even more for have guessed how advancements in medicine emergency and end-of-life care will be looked bathrooms and family areas, for easier the families who rely on us for specialist care. and technology would impact on the lives of after in a designated part of Douglas House, accessibility with large beds and wheelchairs. children and young people with life-shortening just across the garden from Helen House. We would like to make the • ‘Plumbed in’ oxygen available conditions and their families. Many young following improvements: in all children’s rooms. people who wouldn’t have survived past their mid-teens, even as recently as 10 years ago, y are now living until their mid to late twenties Will ou join in... and quite feasibly within the next ten years ...and help improve the facilities they will be living even longer. This is an for children with life-shortening incredible advancement, but it does mean that conditions and their families? young people living longer have increasingly We are hoping to raise further funding complex conditions and needs and are physically to complete the full refurbishment. bigger. They need larger specialist equipment and Your support of the refurbishment will more of it. They need space and we need space make a huge difference to the care we to be able to offer them the best care possible.’ can offer the children and families who need it now and the thousands of those Liz Leigh, Deputy Director of Clinical Services, who will need it in the future. Helen & Douglas House adds; ‘Over the years Helen House has adapted and made the best use of the hospice that was built over thirty Would you like to help? years ago, but we can’t expand the existing walls and we cannot find space we haven’t got! Received this newsletter by post? By refurbishing Helen House we can create an Please use enclosed donation form. environment that makes the stays of children You can also make a donation (and follow and their families that much more comfortable our appeal and the refurbishment) on and we can make sure that we are providing www.helenanddouglas.org.uk. Or contact the Fundraising Team T: 01865 799150 an environment suited to modern needs and E: [email protected] the young people and their families.’ 4 5 ‘It’s somewhere to come for a bit of respite ‘It’s a good place to care and then go back home; everyone get respite care and let is a bit more refreshed and then can get the family have a rest. on with each other better.’ At University and Douglas House Josh has You know you’re going a room designed for a person with disability. Because he has a carer he is free to choose to be looked after well what time he gets up, but at home this here, so everyone can is not so easy. be reassured.’ ‘When I am at home Mum will get me up, but she has to get up a little bit earlier to get things ready for me. You’re not like ‘I’m very fortunate actually, as I have a very other people. You’re very much living with supportive family who get me involved with other people’s structures. So that’s what’s as many things as possible. They don’t really great about university and Douglas House. treat me any differently than anyone else in I have choice over what time I get up and the family. That’s the way I like it. I have a go to bed.’ stair lift so I can sleep upstairs with the family Josh loves debating and has joined the and that’s what I really value. You have to politics and debating society at university, acknowledge that you are different from other but says it is difficult to be part of group people, but you just want to continue with activities, especially at home. your daily life as everyone else does really.’ ‘At Douglas House I will often go with Josh began visiting Helen House in 2004 a carer into Oxford, to the cinema, museums, when he was 10 years old. ‘I stayed with or Christchurch Meadows. They also have my family the first time because things were group activities that you can’t do at home; ‘You have to acknowledge that you are quite new. I hadn’t really stayed away from things like the African day, The American home much and never really been cared gangster evening and the Murder Mystery. different from other people, but you just after in that sort of, how can I put it, in an Although my disability doesn’t play an awfully institutionalized way.’ big part in my life, when I come here it’s nice want to continue with your daily life to dip into that other scene; where there are Two years ago he made the transition to people like you and if you need to you can Douglas House. ‘It was nice to get away as everyone else does really.’ reach out to them.’ from the childlike environment of Helen ‘You’re very much living with other is in Buckinghamshire, where he lives with House. I’m not really nervous about people’s structures. So that’s what’s his mum Jane, sister Ella and brother Thomas. meeting new people, so it wasn’t so bad.’ ‘The best thing about great about university and coming Sadly his dad Robert died 10 years ago.
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