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Annual Review 2009-10

impact


Above: Care team member Angela Cook with Hugh Smith in the hydrotherapy pool at Robin House. Below: Singer/Songwriter Leon Jackson supported ‘Bring A £ To Work Day’ and met Amy Rose Jones at Rachel House. Right: Young volunteer Alice Eade helps in the Rachel House kitchen at the weekends.

Photo: George Mcluskie

Reflecting on our


Making a difference together

2 Children’s Hospice Association Scotland Annual Review 2009-10

I wonder if you have ever met someone who has made a real impact on your life? Perhaps you hope you have made an impact on others, at work or among family or friends. The theme for this year’s Annual Review is ‘impact’, the impact CHAS has on children, families, volunteers and supporters and, of course, the impact they have on us.

Photo: Hope Maybry

The dictionary speaks about impact in terms of effect or influence and this rang a bell with me as I thought back on the work done over the year. This Review tries to capture the essence of what we do and its pages include stories and news of our activities over the past year that shows real impact. But you know, sometimes even a small and often unnoticed thing can have a significant effect or be of some major influence. We see this all the time at CHAS; the understanding listener, the warm welcome, the reassuring word, the comforting arm. One parent summed it up by saying, “CHAS has put the life back into our family.” Last year, over 288 children, young people and their families were helped by CHAS and I hope our impact was both positive and supportive. Their involvement with us certainly influences every aspect of what we do and how we do it, from our staff and 900 volunteers to our loyal supporters who choose to donate to CHAS. Together we have all made a difference in this past year and from that solid base we plan to do it all again next year, and the year after and for as long as there is need for us. Professor Gordon Dickson Chairperson

The Children’s Hospice Association Scotland (CHAS) is a Scottish charity that provides the only hospice services in Scotland for children and young people with life-limiting conditions. A children’s hospice offers professional care, practical help and emotional support to the whole family usually from the day of acceptance, to the death of their child, and beyond. Rachel House in Kinross, Scotland’s first children’s hospice, opened in March 1996. Robin House in Balloch opened in August 2005. Both hospices are purpose-built and each can provide ongoing support for over 200 families across Scotland each year. CHAS also provides a home care service, called CHAS at Home, staffed from both hospices and with a dedicated team in Inverness. The service offers care to families in their own homes when they need it most.


Above: The Carle family – Katie, sister Danielle, dad Jim and mum Tracey. Below: Sister Danielle reads Katie one of her favourite books. Right: Mum Tracey with Katie. Bottom Right: Siblings Sam McGuire and Jordan Graham have fun at Robin House.

on families


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In their own words For Tracey and Jim Carle, Robin House has been a lifeline since their daughter Katie showed her fighting spirit and proved doctors wrong. Sitting in Katie’s bedroom at Robin House, you’d think this was any four year old’s room – bright pictures on the wall, pink bedspread and plenty of toys. Instead, this is one of the eight bedrooms at Robin House Children’s Hospice where Katie and her family are staying for a respite break.

Children’s Hospice Association Scotland Annual Review 2009-10

On Christmas Eve 2009, the family were faced with a very different situation. In December Katie had a severe seizure due to her cerebral palsy which caused brain damage. For two weeks she was in a coma and on a life-support machine in hospital, with her parents constantly by her side. The doctors told Tracey and Jim that it was time for the family to decide when to turn off the life-support machine and make funeral arrangements. It was an agonising decision for mum and dad. On 27 December Katie’s life-support machine was turned off but miraculously the family’s hopes were realised when she started breathing on her own. “Katie has a habit of proving doctors wrong,” her mum smiles, “she’s still here, beating the odds six months later.” When the family were referred to Robin House in February 2010 they were nervous and unsure what to expect. It wasn’t until they walked through the doors and met the staff that they realised it was just what they needed. As Jim explains, “We get much needed care for Katie, free time to spend with her sister Danielle or all together as a family. Plus a decent meal!” Tracey continues, “Katie’s more relaxed when she’s here and she loves playing with the sensory lights. We’ve been able to take her out on day trips and her favourite thing is being in the hydrotherapy pool with her dad and sister.” For 13 year old Danielle, who helps care for Katie when she’s not at school, Robin House enables her to simply be a teenager and meet other children. Tracey proudly admits the sisters have an unbelievable bond despite the age gap. Providing equal support for Danielle and Katie is something the family really appreciate. Summing up his thoughts on Robin House as he gives Katie a cuddle Jim says, “At home there’s always coming or going and the phone’s ringing all the time so you’re constantly stressed. The night before you leave Robin House you don’t want to leave. When you’re here you can forget what you’re here for.”

In 2009 CHAS spoke to brothers and sisters using Robin House to assess the effectiveness of our sibling support. The study produced a wide range of results, including that 92% of the children wanted Robin House to stay in touch with them when they were at home and 54% preferred to speak to one person about how they feel, rather than in a group. The study will help CHAS develop sustainable sibling support and address the needs and rights of every sibling that uses our services.

Photo: Paul Hampton

SIBLING SUPPORT


Above: Sara Penman and her mum Wendy enjoy some special time together. Below: Dr Graham Burt with Avais Ahmed. Right: Dad Steven Baxter spends time with Dylan. Bottom Right: Matthew McFarlane and care team member Lynne McGill.

impact of care


Providing the best care possible It has been an incredibly busy year for Rachel House and Robin House. We have seen some exciting developments in the wide-ranging care services we provide. The families we help have remained at the core of everything we do, to ensure that we consistently offer them the best possible support year after year.

6 Children’s Hospice Association Scotland Annual Review 2009-10

At Robin House we reached an important milestone this year when we opened our eighth and final bedroom – bringing the hospice up to its full capacity for the first time since its doors opened in 2005. Planned from the start, this marked the final integrated phase for Robin House. CHAS also recognised the need to recruit three new part-time doctors to support the CHAS Medical Director and provide specialist medical care at Rachel House and Robin House. CHAS staff at both hospices have been working hard over the past year as we helped more children and young people than ever before. A total of 288 children and young people used our services in 2009-10 and our dedicated team of staff are able to tailor the care each child and family receives. For one family we created a pretend beach so that their very ill baby, who had never experienced the seaside, could feel sand between her toes. We also arranged for a young girl, whose brother was receiving care in Rachel House over a long period, to keep up with her school work and spend time with her friends. Every aspect of care is considered down to the smallest detail enabling us to help families create moments they can treasure. The past year saw us review the way we provide bereavement support. It is, of course, an integral part of the care we provide. We have been alongside many families during the incredibly hard experience of bereavement with the aim of enabling them to cope with everyday life again. As a result of the review we created family support teams in both hospices, incorporating social workers, child and family support workers, chaplains and activities teams to help families every way we can through their journey. One parent who spoke of the help they received from the hospices said, “Rachel House send out their warm hands and have held us up through everything when we have needed someone.” But for us, it is our privilege to reach out to every family who enters our door, and walk with them every step of the way.

CARE COMMISSION Rachel House and Robin House both received visits from the Care Commission in autumn 2009. The Care Commission regulates care services in Scotland and visits the hospices once a year to check that they are meeting the needs of families in our care. We were delighted to receive a grade five which is classed as ‘very good’ for the quality of our care, support and staffing. A comment from the report read “They offer a flexible, individualised service which is greatly appreciated by families.”


Above: Mum Claire and care team member Susan Harvey chat in the family’s home. Below: Susan Harvey, care team member, helps care for Aidan when she visits the family. Right: The Moir family enjoys quality time together with support from the CHAS at Home team. Bottom Right: Euan and Jordan Graham helped to officially open the new CHAS at Home office in Inverness.

Creating an


Reaching out to families at home Parents Claire and Paul Moir explain how the CHAS at Home team help them: “Our son Aidan loves it when Susan and Fiona from CHAS at Home visit. Aidan is blind so he loves hearing different voices and getting lots of attention! “Their visits mean that we can do simple things, like go shopping, and spend quality time with our other two children, knowing that Aidan is being well looked after. “We can’t sing the team’s praises high enough, even through hard times we can chat to them. They just make life that little bit easier for us.”

8 Children’s Hospice Association Scotland Annual Review 2009-10

For families who feel isolated due to their child’s condition, their location, or experiencing additional stress, our CHAS at Home service is a vital lifeline. From the Northern Isles to Kelso in the Scottish Borders, the CHAS at Home team now support more families than ever before. Over the past year 69 families used the CHAS at Home service with an average of 27 families receiving home care support every month. Fulfilling our commitment to support families throughout Scotland was put to the test this year when Scotland faced its coldest winter for 30 years. The ever resourceful CHAS at Home team even battled heavy snowfall to reach one family 30 miles outside Inverness, walking the last mile up a farm track in the snow! The CHAS at Home team had their busiest month on record, providing 207 hours of care in February 2010. With an increased demand for home care, we recruited two new members to the team, bolstering it to seven staff across the two hospices and the Inverness office, illustrating that the development of the service remains a top priority for CHAS. For the first time the CHAS at Home service was inspected by the Care Commission. The resulting report praised the team highly for their flexible, adaptable and creative approach. We were delighted to receive such a glowing report. The creativity of the team was further highlighted when staff in Inverness started a six month webcam trial to keep in touch with young adults living in the remote Highlands. If this project is successful we plan to extend it next year. Working hand in hand with Rachel House and Robin House, CHAS at Home is now a firmly established service. The development of the home care team means that we are able to reach out to families and provide help between their hospice visits, whenever they need an extra layer of support from us.

Babs Henderson, Director of CHAS at Home: “Our move in April 2009 from a single room to five-room premises was a defining moment for the CHAS at Home team based in Inverness. It makes such a difference to be able to invite families to drop by, whether it’s for a discussion in our formal meeting room about their tailor-made care or a quick chat in the comfy seating area over a cup of tea and a biscuit.”

Photo: Ewen Weatherspoon

CHAS AT HOME OFFICE MOVE


Summary of Income, Expenditure and Funds 2009-10 Summary of Income, Expenditure and Funds 2007-08 Income Donations, fundraising and legacies Statutory funding and grants Investment income Trading income

£000 8,368 5,964 1,019 900 485

Expenditure Charitable activities Fundraising Trading expenses Governance costs and investment fees

8,679 6,965 1,078 350 286

Summary Deficit for 2009-10 Actuarial losses on pension scheme Investment losses

(311) (1,395) 6,860

Net movement in CHAS funds Funds as at 31 March 2009 Funds as at 31 March 2010 Funds as at 31 March 2010 Investments Fixed assets Other assets Restricted funds

(5,154) 36,580 41,734

27,393 12,166 2,089 42,586 41,734

These figures are extracted from the 2009-10 Annual Report and Accounts and may not contain sufficient information to enable a full understanding of the financial affairs of CHAS. The Annual Report and Accounts were approved by the CHAS Board on 28 June 2010. The Accounts have been audited by a qualified auditor, KPMG LLP, who gave an unqualified audit opinion. The Annual Report and Accounts will be filed with the Registrar of Companies following the Annual General Meeting on 13 September 2010. The full Annual Report and Accounts can be viewed on the CHAS website at www.chas.org.uk or obtained from the Company Secretary at Canal Court, 42 Craiglockhart Avenue, Edinburgh, EH14 1LT.

Below: Adele fills up a Clothes Aid bag for CHAS. Right: CHAS collecting cans. Bottom Right: Sean O’Hagan and his dad Jim at the Lads and Dads’ weekend.

Sustaining our


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Pulling out all the stops The financial results for CHAS in 2009-10 have been quite remarkable. While the UK faced the reality of the global economic recession, CHAS continued to pull out all the stops to continue raising funds. As a result in 2009-10 we recorded our highest ever total income, reaching £8.37 million.

Children’s Hospice Association Scotland Annual Review 2009-10

Voluntary income, which encompasses donations, fundraising and legacies, brought in 71% of this total income. This simply proves what we already knew to be true; that our supporters are incredibly loyal and generous to CHAS, even in the face of such a tough financial climate. An increased number of supporters were also kind enough to remember CHAS in their wills. We must also give credit to our hard working fundraising team, who ensured that the money kept coming in. Trading income increased by 24% thanks to a new partnership with Clothes Aid, a door-to-door clothes collection company, which raised over £100,000. Statutory funding and grant income that CHAS received totalled £1.02 million. CHAS secured higher contributions towards the cost of running our hospice services from the Scottish NHS Boards, Local Authorities and Government. Of course, it is no secret that running Rachel House, Robin House and the CHAS at Home service comes at a high price, and despite these positive financial results CHAS had a deficit of £311,000 in 2009-10. The increase in costs was due to a range of developments across the charity, including the opening of the eighth bed at Robin House and the expansion of the CHAS at Home team. Our investments increased in value by £6.86 million, a strong result compared to the value decrease of £5.53 million the previous year. CHAS is also proud to report that the cost of raising funds decreased in 2009-10. The ratio of cost versus income dropped from 22% to 18%. This means that for every pound we receive, 82p goes directly into providing our vital hospice services. It has been a record breaking year for CHAS financially – but we are not complacent and we are focussed on using every donation wisely, so that the families needing our services receive the best care possible.

In March, Rachel House held its inaugural Lads and Dads’ weekend to give dads quality time with their sons. Each father and son formed a team and competed in a series of challenges against the other lads and dads. The tasks included cooking a three course meal, ‘Guess the Film’ and wheelchair football where the dads got to grips with manual wheelchairs. The weekend was a huge success and although only one family left with a trophy, everyone left full of fun memories to treasure.

Photo: CHAS

LADS AND DADS’ WEEKEND


Photo: Hope Maybry

Above: Volunteer Ian Cairns helps siblings Nia and Josh Simpson with their jigsaw during their stay at Rachel House. Below: Retail volunteer Sandra Thomson sorts out the clothes in the CHAS Bazaar charity shop. Right: Employees from John Lewis help in the Rachel House garden. Bottom Right: Pupils from St Mungo’s High School in Falkirk act out a scene at the schools workshop.

Our volunteers


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Helping us help others At CHAS we rely on our volunteers day after day. Diligently working across Scotland, our volunteers help us in a variety of ways working alongside our 232 members of staff, interacting with families using the hospices and helping to shape our relationships with the wider community. Now more than ever, our volunteers are the link between our services and raising awareness of CHAS in their local neighbourhoods, bringing the local community into the hospices and helping to make services accessible.

Children’s Hospice Association Scotland Annual Review 2009-10

Our 900 volunteers from all backgrounds and ages provide support across the whole organisation encompassing the hospices, fundraising, retail and in our offices. Volunteers donated 81,300 hours of their time last year which would have cost us £1.25 million. Amazingly, 14% of our dedicated volunteers have now given at least ten years service. A number of new volunteer roles were created this year, including volunteer photographers, who work alongside our fundraisers to provide us with an invaluable image library of events and activities. There are now six volunteers working across the fundraising offices and, as we increasingly rely on photography, this will continue to develop next year.

Photo: Paul Hampton

Over the last year we have had tremendous support from 14 companies undertaking Employer Supported Volunteering (ESV) projects. Giving their time for a few hours or a few days, teams from organisations across Scotland including Barclays, British Airways, John Lewis and Walkers Snacks have taken on diverse projects for us from data inputting to gardening and painting at the hospices. Some of these companies have found the experience so rewarding that they have formed longer term links with us. In the fundraising community we now have 19 Friends of CHAS groups, community volunteers who organise local events and help spread the word about CHAS. From fashion shows to coffee mornings and Christmas card sales, the groups work tirelessly to support CHAS and help communicate our work. The success of our programme to encourage young volunteers in the hospices continues to grow. There are now 43 young people under the age of 18 volunteering with us. A number of these have now been with CHAS for over three years, having first been introduced to CHAS while at school, and they have continued to support us at university or at work. We are incredibly fortunate to have volunteers who form an integral part of our care and support. Not only do they donate their time, skills and experience but they champion our cause and help raise awareness of our vital services for children, young people and their families throughout Scotland.

SCHOOL WORKSHOPS Garry Sloan, South East Volunteer Speaker, has been leading CHAS school workshops since December 2009:

“The primary school kids ask the most interesting and insightful questions and the high school workshops use drama techniques which means they’re always very creative – everything from a group of pupils on an imaginary trampoline right through to a roller coaster- hilarious!”

Photo: CHAS

“Working with children is great fun and very rewarding. I really enjoy helping pupils get a better understanding of the challenges facing children with life-limiting conditions.


Photo: CHAS

Above: CHAS supporter Claire Kelly raised over £1,800 for CHAS on an eight day cycle around Vietnam and Cambodia. Below: Real Radio presenters Robin Galloway and Ewen Cameron with ‘The Rachel’ and ‘The Robin’ pizzas. Right: Retail volunteer Mairi Wheeler serves a customer in the CHAS Gift Shop. Bottom Right: Staff member Michelle Robertson, family member Shahida Ahmed and staff member Evelyn Cairns.

Photo: Real Radio

Our supporters


Supporters show their generosity

14 Children’s Hospice Association Scotland Annual Review 2009-10

What a year it has been for CHAS fundraising. As the recession settled in at the end of last year, belts and purse strings were tightened across Scotland. It’s no secret that, although determined to succeed, we were preparing for a tough year ahead.

So how did we achieve this? The result was wholly due to our incredible supporters, who continued to show their generosity in difficult times. Individuals who kindly left us legacies made a huge impact, raising over £2 million alone – the most money CHAS has ever raised from legacies in one year.

The astounding outcome was that, thanks to a lot of hard work, we not only reached our voluntary income target during a ‘credit crunch’ year but we raised £5.96 million – the highest income ever from fundraising, trading and legacies.

Our retail team also had their best trading year thanks to a new partnership with clothes collection company, Clothes Aid, which brought in £100,000 from doorstep collections. The retail team also opened temporary shops in Dunfermline and Livingston which enabled us to reach out to more people in these communities. The entire fundraising team have worked incredibly hard over the past year, and thanks to their determination and creativity they grabbed every opportunity available to them. They built new relationships, started new initiatives and worked hard to maintain and strengthen our existing partnerships. Corporate supporters continued to be important contributors. Highlights included a new cycling event called the Artemis Highland 100 which raised £87,000 and Real Radio’s ‘Bring A £ To Work Day’ extravaganza which raised £150,000 and involved 439 participating companies. Frankie & Benny’s became the official restaurant partner for ‘Bring A £ To Work Day’ and sold pizzas created by children at the hospices called ‘The Rachel’ and ‘The Robin’. In August 2009 we launched our innovative and interactive school workshops. The team presented workshops to 90 schools, taking pupils on a journey through the misconceptions and challenges facing young people using the hospices. Since then, many schools have fundraised for CHAS and requested further visits. This year has also seen the increased use of social media for CHAS and enabled us to engage with a new audience. The CHAS facebook site has dramatically expanded and we now have over 3,000 fans mostly aged between 18 and 44 years old. It has been an outstanding year for fundraising and with continued enthusiasm, dedication, hard work and our wonderful loyal supporters, we will continue to build on these successes in 2010 -11.

A FEW WORDS FROM MARIAN Thank you for taking the time to read this Annual Review. If you are an existing supporter of CHAS, we hope that this publication has given you a thorough update on our activities over the past year. If you are reading about CHAS for the first time, we hope this has been a positive introduction to the charity and the work we carry out. Old or new, do get in touch if you would like to know more, we would love to hear from you. Marian Keogh, CHAS Chief Executive


We would like to say a sincere thank you to all our Board members who volunteer their time for CHAS.

Above: The Ahmed family in the garden at Rachel House.

Board Members:

Members of the Senior Management Team:

Professor Gordon C A Dickson (Chairperson) Dr Mary Ray (Vice-Chairperson) Tabitha K M Bell Barry G Cameron Rory R D Farrelly Dr Peter W Fowlie Maureen Fraser (retired 29 June 2009) Susan H Green Jack G Lyall George M Reid Frederic A Strachan (retired 29 June 2009) Ian M Thomson Dr, The Hon. E Claire Walker Kenneth W Wilson

Marian G Keogh - Chief Executive Andrea Cail - Director of Service Development Dr Patrick J Carragher- Medical Director Libby Gold - Director of Care, Robin House Babs Henderson - Director of CHAS at Home Sue Hogg- Director of Care, Rachel House Moira J McCaig- Director of Finance and Administration Roslyn Neely - Director of Fundraising and Communications Ros Scott - Director of Organisational Development

Cover: Struan Jeffrey enjoys a music session with care team member Caroline Clarke.

CHAS Head Office Canal Court, 42 Craiglockhart Avenue Edinburgh EH14 1LT tel: 0131 444 1900 fax: 0131 444 4001 email: info@chas.org.uk

www.chas.org.uk CHAS is a Scottish charity and a company limited by guarantee. Scottish charity number SC 019724. Scottish company number SC 136410 Published August 2010 Design by OneWorld Design, Edinburgh Photography Sean Bell unless indicated otherwise

The photos in this annual review have been funded thanks to the generous support of Aviva.

CHAS Annual Review 2009-10  

CHAS Annual Review

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