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. Douglas House is the friendly ‘It’s a good place to get respite care and let to Douglas House. I have choice over He has Duchenne muscular dystrophy and is the family have a rest. You know you’re going environment and getting what time I get up and go to bed.’ dependent on a wheelchair. He knows he has a to be looked after well here, so everyone can involved with the activities. Josh is 19 years old and has just finished progressive condition and how it affects other be reassured. My mum can have a break from I had a brilliant time on my his first year of a politics degree at the lads, but at the moment he is healthy and he looking after me, as it can be quite stressful last two visits.’ University of Surrey in Guildford. His home feels his family are key to him feeling ‘normal’. looking after a disabled person.’

6 www.helenanddouglas.org.uk www.helenanddouglas.org.uk 7 Why you make a difference…

The money our supporters donate to the charity helps us to a family support and bereavement service, to keeping run both hospice houses and provide the specialist care and the place clean and safe and buying specialist equipment. support for the families who rely on our services. Everything Here we tell you about a very important part of the holistic from paying for specialist doctors and nurses, to providing care we can offer, only because of people like you.

‘Play can be a really lovely way of bringing a family together. Doing ‘Music has the capacity to draw out responses when all other something really positive around a really horrible situation and seeing means of communication have gone. It provides the most powerful the effect the memories have on the families is so heart-warming means of communication and interaction possible, bridging the and you can’t put a price on that at all, it means so much to them.’ language barrier.’

Our Play Specialist Sarah’s role involves Music therapy plays a very important using play to create experiences and part of the holistic care for families. opportunities suited to each individual child. The Music Therapist works with children and their families. Music Sarah said; ‘This lad with Duchene muscular Therapist Ceridwen explains here what dystrophy really liked painting, but had lost a difference it makes to the children so much of his finer motor skills. So, we and families she works with. used syringes to paint and squirted it over big pieces of wallpaper to make amazing patterns. ‘Music therapy offers children and their ‘Messy play’ was a good way for him to families a chance to communicate and express experience new sights, smells and textures.’ themselves through music. The role of the therapist is to support them in this process ‘Another example is; the other day we did using a combination of singing, playing and some cooking and hooked up the blender listening. There is no set agenda, and so every A music session to a switch button. The children were able session is unique to each child, and different costs £30 to operate the blender instead of us stirring children draw different things from our time and them holding the bowl. They loved it.’ A play session costs £16 together. Music also allows them to focus Sarah also organises activities for the whole on something other than their condition.’ family. ‘I remember one week there were ‘Sometimes the whole family is involved. 3 siblings whose brother or sister had died. The point of music therapy is to see what the They were all similar ages and going through child can still do, rather than what they can no the same thing, so doing the activities and ‘Memory making is another thing we do ‘Music has the potential longer do. I remember a little boy who came in being engaged in other things gave them with the families; they do a lot of hand and to reach out to any child. for end-of-life care. His mum really wanted him the opportunity to open up and start talking. footprints and fingerprint jewellery. It’s a really to have some music therapy. They came in and They were just the best support and therapy lovely way of bringing the family together and It can touch them at at the point I was strumming on the guitar, for each other, because they knew exactly doing something really positive around a really he opened his eyes and smiled. His mum said what the other was going through.’ horrible situation.’ a very deep level.’ it was then she knew he was still with her.’

8 www.helenanddouglas.org.uk www.helenanddouglas.org.uk 9 ‘The best bit of music is singing, because it fills my lungs up with joy and I really enjoy it.’

Ellie, who visits Sian, who visits Charlie, who used to visit Helen House Helen House Helen & Douglas House

‘Charlotte enjoyed all types of music; (Charlie’s brother). He had 1-1 sessions lungs and a ventricular septal defect (VSD) Ellie she came alive and it seemed to give her with the music therapist and sometimes with pulmonary atresia. This means she is extra breath. Although she had difficulty group sessions, right from the start. on oxygen for at least 12 hours-a-day and Ellie visits Helen House. Her mum, Denise, with her breathing she could always sing. Charlie’s favourite musical was needs lots of medication. Breathing can be explained what music therapy means to ‘Les Miserables’. The Music Therapist difficult for her, but singing helps with this. her daughter; ‘Music was a way for Charlie to express her feelings without fear and take a more active at Helen House brought the music to the She said; ‘The best bit of music is singing, ‘Ellie loves her music therapy sessions. role at school. It was music therapy and Helen hospital when Charlie was in a coma.’ because it fills my lungs up with joy and She uses her hands independently, which House that gave her an outlet for this. She I really enjoy it’. she finds difficult, as she wants to play the was able to express anger and the fact that chimes. She smiles, giggles and vocalises Sian she often felt invisible. She used the words to join in with the songs.’ ‘help me’ in her music. She was allowed to When Sian stays at Helen House she has The Helen & Douglas House carol service is on Sunday, ‘play around’ with music and was encouraged music therapy and she loves playing the piano Charlotte 15th December at 4pm at to explore and experiment. She didn’t really and singing. She says; ‘I sometimes play on the Wesley Memorial Chapel, get the chance to do that in any other way. the piano. I did a performance for everyone of New Inn Hall Street in the Charlotte (Charlie) came to Helen House as ‘Twinkle Twinkle’. I’d only just learned to play.’ centre of Oxford (OX1 2DH). a child and later Douglas House. Sadly she Whenever we were in Helen House and For more information please contact died aged 18 in March of this year. Here her there were ‘music for all’ sessions we all took The music making she enjoys best is singing our Chaplain, Stephen Harrison mum Sue tells us about the impact music part. We would be in the garden banging on and for very important reasons. Sian has E: [email protected] therapy had on Charlie and the family. tambourines! It was the best thing for Adam congenital heart disease, high pressure in her

10 www.helenanddouglas.org.uk www.helenanddouglas.org.uk 11 HELEN & DOUGLAS HOUSE - SANTAS ON THE RUN Cooking up a HELEN & DOUGLAS HOUSE - SANTAS ON THE RUN storm of support!

Economics consultancy and long-term supporters, Oxera, have been busy raising money for us through a cookbook called ‘We Love Food’, which features recipes submitted by guests and staff at Helen & Douglas House. The decision to create the book came from a Dragons’ Den-style Team Day, run by Helen & 15 DECEMBER 2013 Douglas House. On the day, Oxera staff pitched 02 H&DH their fundraising ideas to the ‘dragons’ to win the investment needed to bring their concept to life. The team behind the winning recipe book idea were then given a target of 6 months to raise Oxera’s Chief Operating Officer a minimum of £5,000. Help bring some festive Paul Breakwell presenting a £1,000 A bake-off at Douglas House back in February saw investment to the winning team. guests like Fleur (pictured) baking her ‘fancy plum cheer to the heart of Oxford! and almond smiling cupcakes’, to be taste tested by local cake baker and decorator Tracey Mann and Since the book was launched in April, Oxera have acting compère, Oxera’s Alison Gomm. Oxera helped managed to raise a whopping £8,700 through This will be the seventh Helen & Douglas House Santa Run make the event happen by sponsoring the cost of book sales and other fundraising activities, including the ovens needed for the bake off and the guests’ – and we hope to make this year’s the biggest and best yet! a coffee morning and an auction at the North recipes then went on to feature in the recipe book. Oxford Golf Club. Since 2007, 7,000 people have donned a red Santa The sight of 1,500 people dressed as Santa suit to take part in our fun run and for many it has taking over Oxford city centre is one to behold – ‘The icing on the cake’ become part of their Christmas calendar and marks from teams of friends, families and colleagues, the start of the festive period. So far the event has to groups of students and Helen & Douglas House Not only did the team smash their target to raised an amazing £309,000. This has really helped families. The Santa Run appeals to the young and raise vital funds for the hospice, they also raised us towards providing specialist care and support the young at heart alike! awareness of Helen & Douglas House in the for children, young adults and their families. local business community. Future book sales will Hannah, who took part in 2012, had this to say continue to boost invaluable donations for the about her experience; ‘The Santa Run was really hospice too! good fun. It was amazing to see hundreds of people dressed up as Santa and it was such a Thank you to our friends at Oxera for your hard ‘This festive themed run great atmosphere! It’s so lovely to see everyone work and dedication to this exciting project, as well out to support such a great cause; from 2 year as many other local businesses who contributed is suitable for all the family, old Santas to 70 year old Santas! It’s a really through sponsorship, or donating their time and is just amazing so close brilliant community event!’ expertise. We have loved working with you all! Registration will open in early October via to Christmas and is for our website www.helenanddouglas.org.uk. For a copy of the cookbook, priced Be sure to sign-up early to secure your red suit! such a good cause!’ Fleur and helper Jackie at £5 each, please contact the For more information contact the Fundraising Team preparing for the Bake Off! Fundraising Team T: 01865 799150 Kate, who has taken part every year T: 01865 799150 E: [email protected]

12 www.helenanddouglas.org.uk www.helenanddouglas.org.uk 13 Take up one of our charity JOIN US ON A ONCE IN A LIFETIME places in this iconic event EXCLUSIVE TRIP TO VIETNAM

When: Sunday 13th April 2014 Where: Central When: Thursday 16th To Saturday 25th October 2014 Where: Vietnam

Virgin London Vietnam Trek & Community Project Take part in the Virgin This trip to Vietnam is – exclusively for hospice one of the world’s charities, so join us most iconic runs – in aid of to support Helen & Douglas Helen & Douglas House. It House. You will experience takes place in central London traditional minority tribes, and you will run by all the mountain passes, breathtaking major landmarks, whilst being views and being involved in a cheered on by crowds of community project. For those of spectators. The atmosphere is you seeking the challenge of a spectacular and you’ll feel a lifetime, Vietnam will leave you part of something very special. with memories that last forever.

Throughout the year route will give runners a glimpse of the Mini Plant, APRIL 2014 JULY 2014 as well as the stunning Christ Church Meadows. Keen to get involved with this event Tea at 3 ND th but not on running? Virgin London Marathon WEDNESDAY 2 to sunDAY 6 Support Helen & Douglas House by hosting a tea party! You can volunteer! As the partner charity for See top left page for details London to Paris the event we need people to help out on the Wherever you are - at home, We have a number of charity places in the Cycle Ride in the office, at school, in day – things like manning water stations, giving out medals and goody bags. Get in touch if 2014 London Marathon. Cycle 300 miles, over four church - put the kettle on, bake days, between two of the you’re interested. Our ballot will be drawn shortly after the results a cake, open the biscuits and ask world’s most chic capital of the public ballot are released in October. your guests to make a donation. You can host cities! The route passes your ‘Tea at Three’ any time or anyplace, it’s up to MARCH 2014 through lovely English villages you! Get in touch with us to request your ‘Tea at and the stunning countryside of Three’ pack. MAY 2014 rural , ending at the spectacular SUNDAY 2ND Eiffel Tower. TH th October 2013 Silverstone FRIDAY 16 to sunDAY 18 Half Marathon Ten Peaks Challenge OCTOBER 2014 SUNDAY 13TH A fantastic opportunity This challenging one day trek in the Lake to follow the tracks of the District takes in England’s tallest mountain Vietnam Trek & Oxford Half Marathon world’s greatest racing drivers. Scafell Pike and the surrounding nine peaks. Join the Helen & Douglas House team for this run If this is your first marathon, the We begin at Buttermere and finish at the equally Community Project through the historic heart of Oxford. The unique flat circuit of Silverstone is perfect! beautiful Langdale. See above for details

» Contact the Fundraising Team T: 01865799150 E: [email protected] for more information » Contact the Fundraising Team T: 01865799150 E: [email protected] for more information Tha n k you ...

Jack who visits, Helen House

» We care for children, young people and their families from Berkshire, Buckinghamshire, A Lasting Legacy Gloucestershire, Northamptonshire, Oxfordshire, Warwickshire, Wiltshire Did you know that the equivalent and parts of London. of 1-in-5 of young people and their families we care for are funded by The charity has to raise £5 million every year » gifts in Wills? to run the two hospice houses. We rely on people like you across our region to raise Legacies are absolutely crucial to us. over 80% of this amount. Without them we just wouldn’t be able » Thank you to all individuals, schools, colleges, to help as many families as we do. groups, businesses and Trusts for your amazing We would therefore like to say a big thank support. We sincerely appreciate your time, you to the solicitors who participated in donations and fundraising activities that Free Will Writing Fortnight back in April, enable us to do the work we do. and also to those who included us in their wills, or made generous donations. Connect with us on social media... We are planning to repeat this offer in spring 2014. For further information Follow us on twitter about this, or any queries you have about twitter.com/HelenAndDouglas leaving us a gift in your will, please contact Find us on facebook www.facebook.com/ Kim Hall E: [email protected] HelenAndDouglasHouse T: 01865 799150.

About this newsletter Contact us • Could you receive this newsletter by email and cut Helen & Douglas House our costs? Please also let us know of any changes 14A Magdalen Road, Oxford OX4 1RW to your postal or email address. Contact Lin Beekar E: [email protected] T: 01865 794749 F: 01865 202702 • The newsletter is also available as a downloadable PDF on our website www.helenanddouglas.org.uk E: [email protected] • Photo credits: Front and back cover – Kate Raworth. Helen & Douglas House, a Company Limited by Guarantee in England & Wales under • With many thanks to all the families, young people, staff, Company Number 4120488. volunteers and supporters who appear in this newsletter. Registered office: 126 High Street, Oxford OX1 4DG Design: Chris Woodrow [email protected] Registered Charity Number: 1085951

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