Photo: Paul Hampton
Autumn/Winter 2013
Caring and Comforting Helping children and young people with life-shortening conditions get the best possible care.
Inside this issue...
Remembering my brother
Flourishing friendships
Fun, runs and adventure
Page 5
Page 8
Page 11
Welcome... Many people have a preconception that hospices are sad, depressing places, but as this parent knows it’s far from the reality, “Without Robin House families like us would be lost. It’s a lovely place filled with lots of fun and laughter, and the support from staff and volunteers is exceptional.” However, sadly it’s a fact that the children and young people using our hospice services will die young and we want them to have the best possible care as they approach the end of their life, and to give their families as much support as possible. Inside this issue you can read about new projects and collaborations we’re working on to make sure we’re providing the very best care to help us achieve this.
We know from working with families that it’s important to talk about death, dying and bereavement, so we’ve set up The 100% Project (see page 4) and when you read Douglas’s story (see page 5), you’ll see why it’s important to talk openly. We can’t do any of our work without your help. CHAS needs to raise £9 million every year to run our hospice services so children and young people with life-shortening conditions get the best possible care. However you choose to help CHAS, thank you for your kindness and generosity.
Lisa Bargon Editor
Royal seal of approval It’s an invitation you couldn’t turn down. Anne Mitchell, CHAS volunteer, and Ros Scott, CHAS Director of Organisational Development, were nominated to attend a special reception at St James’s Palace and meet HM The Queen in May 2013. The reception was held in honour of CHAS and 59 other charities being awarded The Queen’s Diamond Jubilee Volunteering Award. Anne said, “I was overwhelmed, I didn’t know I had shaken hands with her until I saw the picture! HM The Queen looked interested in everyone she met and I’d like to do it again.”
The celebrations continued in June at a reception hosted by First Minister Alex Salmond in Edinburgh Castle in recognition of the three charities in Scotland to be given the prestigious award. He said, “I am overwhelmed by the commitment and dedication of the volunteers that I have met and I am touched by the care and compassion with which they deliver their roles. I know the excellent work that all winners of The Queen’s Diamond Jubilee… do in communities across Scotland and I would encourage everyone to follow their example.” n
CHAS is a charity that provides the only hospice services in Scotland for children and young people who have a life-shortening condition for which there is no known cure. CHAS runs two children’s hospices, Rachel House in Kinross and Robin House in Balloch, and a home care service called CHAS at Home. 2
www.chas.org.uk
Autumn/Winter 2013
Urgent ap peal for retail volunteer s
Shop with CHAS Get over to Dunfermline in Fife for a fantastic shopping experience. Our new shop, CHAS at Duloch, offers contemporary and designer clothing and accessories, children’s clothing and toys, homeware and gifts. Meanwhile our other new shop, CHAS at East Port, is where to head for anyone with an eclectic taste in clothing, collectables and specialist items. For shop details and opening times, visit bit.ly/chasshops or call 01577 865557/864692. Got a few spare hours? Then why not volunteer in our Dunfermline shops? Find out more by contacting Will McLean on 01577 865005 or willmclean@chas.org.uk n
Improving care, increasing costs You may have noticed that our costs to run CHAS services are now £9 million every year. The biggest reason for this is an increase in hospice and home care staff. You can read about some of the developments in care we are planning to introduce for CHAS at Home on page 12 and transition for young people on page 7. We’re committed to ensuring the money you donate is spent wisely and always benefits the children, young people and their families who rely on us for vital care. n
Volunteers are absolutely essential to help us sort and value donated goods, so we can sell them to the public. We urgently need retail volunteers in our Kinross office to help with this. Hours are very flexible and full training is provided. Volunteer Jess Greenhill explains why she loves helping in this role,
“
I t’s intriguing when things come in to see what people have donated, I wonder ‘What are we going to find today?’ There is always the chance you find something special, worth a lot of money. It’s always busy and you’re meeting different people, and it’s great knowing that you’re helping CHAS at the same time.
”
To make a difference, contact Will McLean on 01577 865005 or willmclean@chas.org.uk n www.chas.org.uk
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The 100% Project is a community engagement project run by CHAS which aims to start conversations about death, dying and bereavement in a life-affirming way. We want to promote positive attitudes and start to tackle the silence and isolation people experience in relation to death, dying and bereavement. We hope to raise awareness of the issues, including with families, partner organisations and the public, to help develop people’s skills and confidence in this area. n
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www.chas.org.uk
Some highlights so far have included: ■■ A vote to decide Scotland’s Top Tearjerker movie, with a special screening of the animated film ‘Up’ at Filmhouse in Edinburgh. ■■ ‘ Before I Die’ walls for people to share their hopes and dreams (see picture).
How can I get involved? ■■ Follow @100percentscot on Twitter (#startingconversations). ■■ Look out for news on The 100% Book Club. ■■ Email 100PercentProject@ chas.org.uk with your thoughts. ■■ R ead and comment on our inspiring blogs on www. the100percentproject. tumblr.com.
Autumn/Winter 2013
Remembering my brother Douglas, age 14, talks about how his world changed when his brother Patrick died, and why it’s so important to talk about death and dying. “I felt that the world I knew had ended when my little brother Patrick died and deep down I had a fear that no matter what happened, nothing would ever be or feel the same again. It was some consolation to me that Patrick had died at home peacefully in our mum’s arms where he felt safe and loved, and without the fear of being in hospital. I knew he was no longer struggling to fight his illness, but I found it so hard to think I would not hear his voice or his laugh again. “Many of my friends had not lost someone close in their family so had difficulty in understanding how I was feeling, but did offer their sympathy and support. I think some of them were scared to say Patrick’s name in case I got upset. I found that very hard as it was almost as though they had forgotten about him. Now several months later, it’s just as hard because when they are talking about their brothers and sisters if I mention Patrick, they find it awkward so sometimes it’s easier not to join in the conversation. “I was worried that I would start to forget Patrick’s voice, his laugh and things he said and did. I worried that in time he would be forgotten by many people and I would have no-one to share
my memories with. Mum included me in decisions about Patrick’s service and scattering his ashes, as well as ways to celebrate his birthday and how to remember him. In my bedroom I have some of Patrick’s favourite toys and a print made of some of his sayings hangs upstairs. It has taken away some of the fear that someday he may be forgotten as I can choose who I want to share my memories of Patrick with and always keep him with me. “CHAS were a huge help to both me and my mum. The CHAS at Home team, who had been there for Patrick and us when we needed them, helped me find ways to remember him. When special days have come round, such as my mum’s birthday, knowing that CHAS was there and thinking of us and Patrick has helped so much. “Lots of people are scared to talk about dying or about people who have died, but CHAS have not been afraid to do that and it has helped me so much to be able to talk about Patrick and what we did together. I know I will never forget him, and as time has gone on I know I do not have to hear his voice or be able to see or touch him to know he will always be with me and mum.” n
www.chas.org.uk
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Singing sensations In June 2013, Rachel House held a celebration garden party to mark the end of a two week residency by Scottish Opera at the hospice. Music is a fantastic way for people to come together, and express themselves regardless of age and ability. This is especially important for the children and young people we support who are sometimes unable to communicate verbally or have problems with their sight. The highlight of the day came when families, staff and volunteers showed off their singing voices by performing a song composed during the residency which celebrated 21 years of CHAS. n
Festival fun
Meanwhile, over in the West of Scotland, Robin House held their own garden party for families, staff and volunteers to celebrate CHAS’s 21st year. In true festival style there was music from up and coming artists and bands, food for hungry festival goers, and entertainment for the kids including a bouncy castle and face painting. Like any other festival in a rainy Scotland, ponchos were customary but it didn’t dampen anyone’s spirits. n
Did you know? CHAS cares for over 300 children and young people with life-shortening conditions, and their families, each year.
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www.chas.org.uk
Above Ph Eamonn Moto: cGoldrick
Autumn/Winter 2013
Empowering young people Over the next three years, we are helping young adults currently using our services to move from CHAS into suitable adult services as Arlene Honeyman, Family Support Manager, explains. What is transition? “Transition is the term we use to describe the process when a young person using CHAS services moves from children’s to adult services.”
What change has CHAS recently made about transition? “CHAS has introduced a process to assist young people during this transition phase. Our aim is to support and empower young people to find age appropriate services for them outside CHAS by the time they turn 21.”
Why has this change been made? “Since CHAS first started 21 years ago we’ve seen an increasing number of young people who are now living much longer into adult life than previously expected. This wonderful result, thanks to medical advances, has had an impact on CHAS as our two children’s hospices are more appropriate for young children than young adults. It’s often not suitable for them to have respite breaks alongside much younger children or babies who might have a significantly shorter life expectancy.”
How will this affect young adults using CHAS services?
How will CHAS support these young adults? “We’re employing a specialist Transition Team to support them and their carers, and we’re working hard to offer information, advocacy and emotional support. The team will create transition plans for each young adult which will be person-centred and encompass their hopes, wishes and goals in addition to supporting their care needs. We’re also helping to shape transition services in Scotland by working with colleagues in adult hospices, local authorities, health boards, Scottish Government, and other service providers, to improve the transition process and ensure young adults leaving CHAS have positive experiences of moving into adult services.”
What is the desired outcome? “It’s our hope that in three years’ time young adults over 21 years of age will have all their health and care needs met by sensitive, age appropriate and easy to access services, so they can experience fulfilled and enjoyable lives.” n
“Young adults over 21 who are currently using CHAS will continue to be supported for the next three years so that we can help them find suitable support in adult services. We’re committed to helping each individual find the right support for them to ensure they live the life they choose for themselves.” www.chas.org.uk
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Flourishing friendships Feeling isolated or lonely can affect anyone, and particularly if you are a full-time carer or you have an illness that makes it difficult to do everyday things. CHAS volunteers are providing vital befriending services to help parents and young people as Florence and Courteney tell us. 8
www.chas.org.uk
Autumn/Winter 2013
Matchmaking with a difference
Connecting to your peers
A new volunteer befriending scheme at Robin House is matching up trained volunteers with parents to offer them an individualised service.
Young people with a disability can feel alone too as their condition can stop them getting out and about with friends their own age.
Florence explains more, “I was matched to a mum with two sons and I was worried that she might feel pushed into a corner to see me. But it’s totally flexible and it’s up to her if and when she wants to meet up at the hospice. When we do, she is very happy to see me.
Courteney explains how her befriending skills help the young people she meets at Rachel House. “They can forget about their illness and have fun. We chat about all kinds of things, like movies or music. Or we might do things like play games or watch movies. It’s just nice to have someone you can do that with on visits and someone their age to relate to.
“ She will talk to me about what’s worrying her and I listen, but that’s not the biggest part of our chats. I’m not involved in her son’s care. It’s someone for her and we don’t need to talk about the kids – we can talk about the world, the weather, and she is very interested in what I am doing. It’s some time for her to switch off and have someone to confide in if she wants to.” There are plans to extend the scheme to brothers and sisters too, offering a valuable service to all family members.
CHAS needs befriending volunteers Are you aged 18 and above and interested in a befriending role with other young people or sibling s who visit Robin House in Balloc h? If so, we’d love to hear from you . We’d particularly like to hear from any young men for this role. Contact Nicola Porciani or Lynne Thomson on 01389 722055 or VSMRobinHouse@chas .org.uk
“I really enjoy befriending. Everyone is so friendly here and there’s no typical day. That’s a good thing as different people connect to you differently. It’s a nice feeling to get on with someone and feel like you are making some difference.” n
Did you know? 830 volunteers donated an incredible 78,000 hours to CHAS in 2012-13. 288 volunteers help in our care services.
Volunteering Opportunities For information on volunteering with CHAS, visit bit.ly/chasvolunteering or call 0131 444 1900.
www.chas.org.uk
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Protect the planet As a company, you can help protect our fragile environment and support CHAS at the same time by recycling. So, before you bin it, think of bagging it for CHAS. It’s really quite amazing how many items can be recycled in the workplace to stop them ending up in landfill. Here are some examples to inspire you.
If you have scrap metal, instead of throwing it in a skip and paying for a company to take it away, recycle it and donate the proceeds to CHAS. Engineering firm Thales has been doing this since 2007 and have raised an amazing £51,000 for CHAS. Employees David and Michael came up with the brilliant idea and explain more, “We separate the metals and then sell them on to a dealer, so we get full market value for the metal. It means it doesn’t go to waste and staff can get involved in charity work, so everyone wins!”
ecycle your ink cartridges and electrical items, R such as cameras and laptops, with ReThink Europe. Get rid of unwanted items taking up unnecessary space in a quick and easy way. The company has raised over £208,000 for CHAS through the scheme so far, so please keep on recycling. Find out more at www.rethinkeurope.co.uk/Appeals-andCampaigns/chas e can bring our interactive retail workshops W to you where employees learn about the value of donated items sold in our shops or on ebay. Sue Calder from Pagan Osborne said, “We had great fun as a team guessing the prices of the items. We were amazed to learn just how much money they could make for CHAS, especially the more unusual items.” Afterwards, employees are encouraged to bring in their own unwanted items from home using their new found knowledge. Feeling inspired to help the planet and children with life-shortening conditions? Then do get in touch with your nearest fundraising office (see back page for details), we’d love to hear from you. n
Cost of caring Every day it costs £25,000 to run CHAS care services and we can’t do it without your help. To make a donation to CHAS, visit bit.ly/donatetoCHAS or call 0131 444 1900. 10 www.chas.org.uk
Autumn/Winter 2013
Fun, runs and adventure
Here’s our pick of events in 2013-2014.
Look out for other brilliant events on the CHAS website by visiting bit.ly/chasevents
CHAS Ladies Lunches
Running events
Do you enjoy socialising with your girlfriends over some fine dining and a glass of bubbly? Our CHAS Ladies Lunches include a drinks reception, a two course meal and wine, a guest speaker and entertainment. Afterwards you can bid on fantastic prizes at the charity auction. Lunches will take place in Aberdeen on Thursday 19 September 2013 and in Edinburgh on Friday 1 November 2013. Book your table now by contacting Sarah Thomson on 0131 444 4908 or sarahthomson@chas.org.uk
Change lives by pulling on your running shoes for CHAS but be quick, these events are very popular.
Overseas Trek The Vietnam Hill Tribe Trek – Wednesday 24 April to Saturday 4 May 2014 The route takes you across valleys and rivers and follows winding trails through remote hill tribe villages. It’s an amazing charity challenge and a privileged chance to meet and stay with the people of the Northern hill tribes. Contact Jon Heggie or Alana Maxwell on 0131 444 4904 or getsetgo@chas.org.uk
e have guaranteed places W for Baxters Loch Ness Marathon on Sunday 29 September 2013. Contact Jon Heggie or Alana Maxwell. ank of Scotland Great B Scottish Run, 10K or Half Marathon – Sunday 6 October 2013. Contact Samantha Reilly. e have guaranteed places for the W Edinburgh Marathon Festival (a sell out every year) on Saturday 24 and Sunday 25 May 2014. Contact Jon Heggie or Alana Maxwell. Jon or Alana - 0131 444 4904 or getsetgo@chas.org.uk Samantha - 0141 779 6180 or samanthareilly@chas.org.uk n
Make a Will In 2012-13, CHAS received £2 million from legacies – this is the equivalent of 44 nurses. We all know that making a Will is a simple way to ensure that the people you care about are looked after in the event of your death. Did you know that it can also be a great way to support CHAS? Having a professionally written Will is not as difficult as you might think. Making an appointment with a solicitor is quick and easy, and you can ask for a quote up front.
You can also use online sites such as www.Login2Law.co.uk. Login2Law offers the speed and convenience of the internet with the assurance that you’re dealing with qualified professionals. CHAS benefits too as we receive 10% of the cost of making a Will. If you would like to speak to us about leaving a gift in your Will to CHAS, please contact Ali Patterson on 0131 444 1515 or FundraisingManagerSE@chas.org.uk n
www.chas.org.uk 11
Care inspectors rate CHAS services
Healthcare Improvement Scotland (HIS) visited both Rachel House and Robin House and spoke positively about the quality of care and support. The inspection teams described how our services are tailored to the individual needs of children and families, by a dedicated team. Inspectors spoke directly to families who use the services with one family saying, “the care provided is second to none”. Families also said they felt listened to and this was confirmed by inspectors who said, “we saw throughout the inspection that parents are at the heart of the hospice’s work”. Care Inspectorate described the quality of care and support by CHAS at Home as ‘very good’. They noted that staff work closely with families to provide a flexible service that meets their individual needs. Parents made comments such as, “my child still has a smile on her face” and “home care has been wonderful”. Families identified that they would like longer or more frequent home visits, which
Photo: Paul Hampton
This year we had unannounced inspections from our new regulators and we were delighted to receive lots of praise and strong grades for all CHAS services.
CHAS will aim to accommodate by increasing the number of home care posts in the future. Praise is important, however, the inspections also guided us on areas we need to improve and develop. One area we will be working on is around the management of medication at the hospices. Inspectors noted the achievements to date in this complex area and gave some clear guidance on how we could improve our work further. Already we have made great strides in achieving their recommendations. To see a full copy of reports, visit www.healthcareimprovementsscotland.org or www.careinspectorate.com n
Historic funding deal Earlier this year an historic deal was agreed with Scotland’s Council Leaders to set up a National Funding Agreement between the Convention of Scottish Local Authorities (COSLA) and CHAS. The two year deal, which came into force on 1 April 2013, will see Scotland’s 32 councils pay CHAS £679,405 per annum. Maria McGill, CHAS Chief Executive, said, “Ever since CHAS began providing care to children and young people, we have never been guaranteed funding from Scottish councils. This significant agreement means that by working together with 12 www.chas.org.uk
local authority colleagues, we now have secured funding from every council across Scotland. “We believe this not only marks the start of increased funding, but also increased awareness of CHAS, which will enable us to reach more families who need our help. CHAS can now plan ahead to ensure we continue supporting severely ill children and their families, in the best possible way.” n
Autumn/Winter 2013
Stronger together than apart CHAS strives to give children, young people and their families the best possible individual care but, like other care providers, we face challenges in areas such as funding and resources. However, these challenges also present opportunities to join forces with other organisations to share resources and expertise, as these two collaborations show. Emma Cameron Foundation When your child is seriously ill and approaching the end of life, many parents want to do everything they can to care for them at home. It often means sitting up overnight which is exhausting, as one parent explains, “You’re so busy and emotionally wrecked that you’re ready to crash out. If the main carer is alert 24 hours a day you’re going to struggle.” In response, the ‘Sleep Tight’ night sitting service was developed by CHAS and Yorkhill Hospital with advice and financial support from the Emma Cameron Foundation. The Foundation was set up
Photo: Paul Hampton
by Alan Cameron, a bereaved father, in memory of his daughter to help families in the West of Scotland who have a child with a cancer diagnosis. By joining forces, the Foundation is funding the service while overnight care is provided by CHAS nurses and support workers to give families a much needed rest. Already it’s making an impact with one parent saying, “I feel comfortable about leaving my child in their safe hands. The staff are so experienced and friendly.”
Marie Curie Cancer Care Although our hospices can help children and young people in their last days of life, some young people have expressed a wish to die at home in a familiar and comfortable environment. To help them fulfil their wishes, CHAS is working with Marie Curie Cancer Care to provide any end of life care at home for young people aged 16 and over. Babs Henderson, Director of CHAS at Home, said, “With this new collaboration due to begin in autumn 2013, CHAS can work with Marie Curie to address and fulfil the young person’s needs. This joint planning and co-ordination between charities encourages a more efficient and effective service, and ultimately means the young person can achieve their wish.” n www.chas.org.uk 13
Photo: Paul Hampton
More choice for babies Over recent years, CHAS has been supporting more families with very small babies, which is not so surprising when you look at the statistics. In Scotland, approximately 430 children (aged under 18 years old) die every year and a staggering 32% are babies aged one year and under. 14 www.chas.org.uk
Autumn/Winter 2013
Andrew Wallace explains how Rachel House helped his family in the final few days of his daughter McKenzie’s life (pictured below). Andrew said, “We arrived here and it was like a weight being lifted from our shoulders.
Fellowship Award
Huge congratulations to Dr Carragher, CHAS Medic al Director, on being elected to the Fellowship of the Royal Co llege of Paediatrics and Child Hea lth. This prestigious award recogn ises his excellent standard of edu cation, training and commitment to the health and welfare of childre n.
CHAS is working with experts in the field to come up with a series of palliative care options for very small babies in Scotland in the final days or hours of life which requires a different set of skills to older children. Dr Carragher explains, “We are proposing to have a pilot running in Lothian before the end of the year, to trial this new ‘care pathway’. “We hope to involve newly formed baby palliative teams in hospitals to work alongside CHAS staff, so families have the choice to transfer their child either to Rachel House or Robin House, or back home with help from the CHAS at Home team, if they prefer. By working in partnership with hospitals, we’re investigating how CHAS can provide the very best palliative care for the babies who need it, and for families who might not know we exist.” n
National Square Table Report, Scotland
Nationa Table l Square R Scotla eport, nd
In the last issue we told you about the National Square Table event to discuss the future of children’s palliative care. You can now read the report containing a summary of the event, which includes organisations’ pledges to take action to improve care, by visiting bit.ly/squaretablereport or call 0131 444 1900. n www.chas.org.uk 15
Paul Hampton
“At CHAS we’re seeing a steady rise in young babies and up until now the children’s hospice movement hasn’t concentrated on this area. Currently 98% of babies with life-shortening conditions die in neonatal wards in hospital. So we are challenging this and asking ourselves if this is the very best care for those babies and their families, and whether we can provide more support to families like the Wallace family whose daughter needed end of life care.”
“McKenzie wasn’t wired up to machines anymore, she was just a wee baby, she was dressed, no nurses, no noises, nothing. Just a normal room. Joanne got to be a normal mum… it was amazing, I got to be a real dad. Instead of looking at baby through a plastic cover in hospital on a cot to keep her warm, we came here and we got to hold her, we got to feed her and dress her normally.”
Photo:
Dr Pat Carragher, CHAS Medical Director, is looking closely at this issue and how it affects CHAS. Dr Carragher says,
£3.49
CHAS Christmas cards Here’s a selection of fantastic CHAS Christmas cards on offer. We aren’t printing a brochure this year so to see the full range of Christmas cards and gifts, visit our online ebay shop at bit.ly/qreshop. Or you can pop into one of our shops (visit bit.ly/chasshops for shop details) or call us on 01577 864692. n
£3.79
Santa and Tree Pack of 10 cards
Gathered at the Manger Pack of 10 cards
£3.49
Tartan Scotties Pack of 10 cards
£3.49
Tree of Owls Pack of 10 cards
Keep up to date with CHAS news...
Contact us...
www.chas.org.uk
tel: 0141 779 6180
CHAS Glasgow email: glasgow@chas.org.uk
CHAS Kinross www.facebook.com/ childrenshospiceassociationscotland
tel: 01577 865222
email: kinross@chas.org.uk
CHAS Edinburgh www.twitter.com/supportchas
tel: 0131 444 1515 email: edinburgh@chas.org.uk
www.youtube.com/CHAScharity
CHAS Aberdeen tel: 01224 645000
email: aberdeen@chas.org.uk
Retail Team tel: 01577 865557
email: retail@chas.org.uk
Head Office tel: 0131 444 1900
Scottish charity number SC 019724
16 www.chas.org.uk
email: info@chas.org.uk
Canal Court 42 Craiglockhart Avenue, Edinburgh EH14 1LT