Spring/Summer Newsletter 2019

News

Spring/Summer 2019

Inside: Find out what Lara loves most about the hospice Pull on your running trainers for Bluebell Wood Meet our corporate champions

01909 517 360

Bluebell Wood Children’s Hospice

Photos/graphics: Ant Oxley Photography, Freepik

@BluebellWoodCH

Sponsored by:

www.bluebellwood.org

Hello from Lara Lara is a very determined and bubbly young girl, with a smile that could light up a room. She has been visiting Bluebell Wood since she was born and really enjoys spending time in the gardens and having fun at our activity days.

When Lara was born in 2008, she was taken to the special baby care unit because of her erratic breathing pattern. During the next month or so, Lara was diagnosed with Jouberts Syndrome, a rare genetic brain condition. This means that Lara finds many things difficult: she has breathing difficulties, muscle control is difficult, and she can’t swallow.

Her dad, Jeremy, said, “Lara has the cheekiest toothy grin you have ever seen. In fact, we can’t get more than twenty yards down the road without somebody stopping to say hello to her. She can laugh, smile, play, cuddle and generally charm the birds out of the trees if she chooses; she can also kick and scream the house down if she wants to.

“Bluebell Wood has been with us virtually from the beginning; the Care Team have been fantastic and have helped us - and continue to help us - in so many ways. After Lara was born we found it very difficult to cope for a long time. Coming to Bluebell Wood was a real life line, and gave us some time to rest, and also spend time with our other daughter. Now Lara comes to the hospice or goes out on trips with the community team, which gives us chance to take a bit of time for ourselves knowing Lara is in safe hands.”

Lara’s family also enjoy coming to our activity days and events, such as our annual Christmas party. Jeremy said, “It can be difficult to go out to events because of Lara’s condition, which is why we really look forward to Bluebell Wood’s Christmas party. Lara loves getting to meet Santa, and we get chance to chat to other families over some delicious food.

“Bluebell Wood is really such a warm and fun place to be. Lara loves it here, and she gives us the most heart-warming smile whenever we tell her we are going.”

Get ready for a great British summer We all know that when it comes to the great British summer, sunshine isn’t guaranteed!

That’s why at our charity shops, you’ll find your perfect summer holiday wardrobe, whatever the weather. From colourful wellies and rain-macs, to floppy hats and sandals, you’re sure to find an outfit to suit you (and at a bargain price too)!

We’ve also got plenty of games and toys to entertain the family on those rainy days, as well as the perfect book to read while you’re lazing by the pool.

The best part is, while you’re making treasured memories with your family this summer, your shopping will be helping local children and families make memories too.

Visit www.bluebellwood.org/find-your-local-shop to find your nearest Bluebell Wood charity shop, and support us with every pound you spend this summer.

Fantastic Fundraising Your super support helps children and families during incredibly tough times. Here are just some of the fundraisers who have supported us recently.

We’re so incredibly proud to have people like you on Team Bluebell! To find out more about fundraising for local families, give us a call on 01909 517 365.

Running up a terrific total St Peter and St Paul School, in Chesterfield, have reached their fundraising target of £5,000, which is fantastic.

They’ve taken part in Shoesday, raffled off chocolate explosions, and taken on the Redbrik Chesterfield Half Marathon, with over 75 runners taking part! Well done to everyone involved.

From baking to braving the shave It’s been a close shave for kind-hearted regulars at the Wheatsheaf, in Doncaster. Together they’ve raised a fantastic £1,944 for us by shaving off their locks, baking delicious tasty treats in a team Bake-Off, and holding coffee mornings.

They’ve really gone above and beyond to make a difference to families when they need it most.

Darcy’s Memorial Cup reaches £6,000 total We’d like to say a huge thank you to Joe Gibbons, and everyone else involved with organising Darcy’s Memorial Cup. This is an annual event held at Wombwell Main FC, in memory of Darcy Jo Burke from Barnsley, who passed away at Bluebell Wood.

They’ve held the fundraising Cup for over six years, and in that time they’ve raised an incredible £6,000 to support local children and families.

Our digital heroes raise a fabulous Facebook total Since July 2018 we’ve been inundated with hundreds of generous donations on our Facebook page, from people who decided to ask for donations to the hospice instead of birthday gifts.

These wonderful gestures add up, and in 2018 you raised £12,403 for local children and families. We’d like to say thank you to each and every person who created a birthday fundraiser, and to everyone who donated. If you would like to start your own Facebook fundraiser for us, visit our page.

Raising funds in Emma’s memory Throughout the year Steve and Jane Knight hold fundraisers to remember their daughter, Emma, who was the first child to use Bluebell Wood’s end of life suite. She was a bubbly girl, who was diagnosed with a rare brain tumour in 2004. The following four years were tough for her family - she lost her sight and her ability to walk, but she never lost her smile. Sadly, in 2008 she passed away at just 13 years old.

1 2

3

In the ten years since then, Steve and Jane have raised over £80K to support other families going through tough times.

Colourful Jaguar revvs up the pounds for Bluebell Wood Stuart Dixon, a retired businessman, has raised over £70,000 for us by selling stickers to people to stick on his Jaguar. What started out as a tribute to the children at the hospice, turned into so much more when hundreds of people wanted to get involved.

Stuart said, “I wanted to do something special with my car to help raise money. I’ve already got some plans for next year, and I really want to beat my £70K total in 2019!”

6

Have you done some fantastic fundraising?

If you’ve donated to Bluebell Wood, we’ll keep your details on our database for seven years since the date of your last donation. This means we can update you on how you are making a difference to families, and so you know about all the fantastic ways you can support local children.

8

9

If you don’t want to be contacted by us again, or would prefer to hear from us by e-newsletter please email mailings@bluebellwood.org or call 01909 517 360.

Getting to know Doctor Archana Soman

Dr Archana Soman joined our team in September as a consultant in paediatric palliative medicine, a role she shares with Sheffield Children’s Hospital. We sat down together to talk about her first few months here.

What did you do before you came to Bluebell Wood?

Before coming to Sheffield, I was a paediatric consultant in Norwich for nearly eight years, where I spent most of my time looking after children with cancer, as well as providing palliative care to children with life-limiting conditions.

It was after seeing first hand the positive difference that this care made to children and their families that I decided to apply for this job at Bluebell Wood.

What makes working at a children’s hospice so special?

Every day I get to know some of the bravest children, young people, and families. They all face such different challenges, but they’re united by their resillience and their ‘can do’ attitude. It’s so rewarding working with families to help them overcome these challenges.

I am also privileged to work with a wonderful team of staff who are all enthusiastic, kind, dedicated, and fun!

What do you enjoy doing outside work?

I love the outdoors (the Peaks are one of my favourite places to go on long walks), cooking for friends, and supporting charities in palliative care and equality groups in India and the UK.

Leaving the gift

of memories Every year we hear about kind, generous people who decided to leave a gift in their Will to Bluebell Wood, to help make a difference to families across the region.

Frank Cammidge, who passed away in September at the age of 93, left a wonderful £2,967 to Bluebell Wood in his Will. Frank was a quantity surveyor who lived in Dronfield with his partner Mary until she passed away.

Mary’s daughter, Vicky Cutts, said, “My mother was married to my dad for 23 years until he died, and she met Frank a year later. Although she and Frank never got married, they became inseparable and travelled all over the world on holidays together, to Canada, Florida and across Europe. They bought a campervan and visited most of England too. They were great companions.

“Frank never had any children. He had lots of different jobs, and worked for a long time in construction, starting as a clerk and eventually becoming a quantity surveyor.

It’s lovely to think his gift will help local families in their time of need.”

Julie Booth, Trust and Legacy Fundraiser at Bluebell Wood, said, “We are so grateful to Frank for remembering Bluebell Wood in his Will. Gifts like these mean that children like Sienna can make wonderful memories - like meeting Tinkerbell, or relaxing in our spa pool.”

Making a Will is one of the most important things any of us ever do. It makes sure that our money and possessions go to who we want, and can save a lot of stress and time for our loved ones in the future. To find out more about leaving a gift to Bluebell Wood in your Will visit www.bluebellwood.org/gifts-in-wills or call Julie on 01909 508 119.

Bought a round? Donate a £1!

Ask your local to turn into a purple pub for Bluebell Wood

Did you know that the next round you buy at your pub could help to support children and families going through the toughest times imaginable?

If you’re a regular at your local pub, asking them to become a Purple Pub is a great way to turn an evening out with your friends into a fundraising opportunity. We’ll supply them with everything they need - from beer mats and bunting to posters and pop-up collection boxes - to go purple for a week, a month or more!

• • • • •

We’ve even put our heads together and come up with a few fun-filled activities for your pub to try: Host a pub quiz night Raffle one of our chocolate explosions Selling a special ale? Donate a percentage of your profits to the hospice Get competitive and hold a darts or pool competition Get active with a charity football match or sponsored walk (ending at the pub!)

To find out more about turning your local into a Purple Pub to raise money for Bluebell Wood, visit www.bluebellwood.org/purple-pubs.

Rother Valley Country Park, Sheffield.

To get your tickets: www.bluebellwood.org/bubble

Sponsored by:

It’s time to #GetActive Could you swap an evening on the couch for a session at the gym, and #GetActive for local families? Why not take a look at some of the inspirational stories below, and visit our ‘Get Active for Bluebell Wood’ Facebook group to share your own fitness tips and successes?

Proud mum takes on Chesterfield Half for Bluebell Wood Mum of two, Kerry Salt, took on the Chesterfield Half Marathon in October 2018 to raise money for Bluebell Wood. Kerry’s son, Adam, was starved of oxygen at birth, and now he visits the hospice for short breaks, alongside his sister, Isla.

Kerry said, “Bluebell Wood is my family’s support network. They give us time to be together as a family, and also get some much needed rest as parents.

“Adam and all the other families who we’ve met through Bluebell Wood are the reason why I decided to take on the Chesterfield Half. It was a fantastic experience - the weather was perfect and people lined the streets to support us. I completed the course in a very respectable 1hr 49min 30sec. Yes, there were blisters, aching muscles, and fatigue, but that’s nothing compared to what Adam faces on a daily basis. I also managed to smash my fundraising target, raising over £1,200, and I loved the day so much that I’ve already signed up for 2019!”

The Sheffield Half was no match for Interserve’s Chris Mason 27 year old, Chris Mason, proves that anyone can take on a half marathon for the first time, especially if it’s for charity. Chris found out about Bluebell Wood through his employer, Interserve, who regularly support the hospice. He decided to take on one of the UK’s most scenic half marathon routes; the Sheffield Half.

He said, “I’d never done a half marathon before, so I made sure I trained for all courses - flat, hilly, uneven - about four times a week. I recommend giving yourself every opportunity to beat your target, to overcome your fears. The atmosphere on the day was incredible, and I’d encourage everyone to give it a go - it was so rewarding, and it was good to know I was helping local families.”

Ready to lace up your trainers to support Bluebell Wood? Visit www.bluebellwood.org/getactive to find out more.

You can support Bluebell Wood across the region by Retford Half - 10/3 taking part in a 10K, half marathon, or marathon and Sheffield Half - 14/4 raising sponsorship. It’s a great way to keep healthy, Great North Run - 8/9 and the best part is you will be making a difference with every step you take.

Yorkshire Marathon - 20/10 Call 01909 517 365 to find out more, and #GetActive!

Chesterfield Half - 20/10 Worksop Half - 27/10 Doncaster 10K 24/11

Meet

This newsletter is proudly sponsored by Shepherd Distribution Services from Sheffield, who have supported the hospice for over six years. Laurence Abel, Shepherd Distribution Services’ Managing Director, said: We offer full, part load and groupage services throughout the UK and Europe and have an excellent reputation for meeting our customer’s every need for transport and distribution.

“We are so proud to be sponsoring the spring edition of the Bluebell Wood newsletter. From being part of their 365 Business Club to raising over £3,000 in a charity golf day, it’s means so much to everyone in our team to be able to give back to such an important cause.”

To find out more about Shepherd Distribution Services, give them a call on 0114 253 1355 or visit www.shepherd-distribution.co.uk. If you are interested in sponsoring our next newsletter, please contact our Corporate Fundraising Team on 01909 517 360 or email rachael.dawes@bluebellwood.org.

Could you lend us a hand in 2019?

Our volunteers do some amazing things.

From baking to bucket collecting, their skill and dedication means we can be there for children and families who need our help.

We’re always on the lookout for fantastic people to join our team, so if you’ve been thinking about giving back in 2019, why not get in touch? Whether you want to help out in one of our shops or keep the hospice looking spick and span, we’ll find the perfect place for you.

Visit www.bluebellwood.org/volunteer or call 01909 517 360 for details.

Charlie’s story Charlie lives in Chesterfield with his mum, Anna, brother, George, and sister, Evie. He enjoys playing his guitar, going to college, and visiting Bluebell Wood. Anna shares their story: “From when he was two years old, I knew Charlie was different. He was developmentally challenged and didn’t want to hang out with other kids. In 2016 we went on holiday and he couldn’t walk properly in his flip flops. Over the next six months he developed a turned out foot, and started slurring his speech. One day my sister took him to the cinema and on the way home his legs just gave up. We were all really worried, especially Charlie – he kept asking me if he was going to die, but all I could say was ‘I don’t know’.

“Finally, in 2017 we found out that he has complex Hereditary Spastic Paraplegia. He can’t walk on uneven ground, and he gets tired easily. The condition is neurological, so he also has dementia, which is heart breaking. Sometimes he’ll talk to you and he thinks he’s making complete sense, but he’s actually just mumbling. He can get up six or seven times a night and needs almost 24-hour support. I even have to have a baby monitor in his room so I can hear him if he wakes up or falls.

“Our community nurse suggested Bluebell Wood to us, and at first I was nervous, but Charlie loves it. I was worried he would worry about how sick he was when he saw the other children, but he really enjoys going.

“Looking after Charlie can be mentally and physically exhausting but at Bluebell Wood I feel supported. Getting to know parents who understand is so important; they get that some days are just really bad. I hate using the word normal, but that’s how I feel at Bluebell Wood.

“If I feel stressed I go for a walk in Bluebell Wood’s garden and watch the brook. I take a deep breath and I know it’s going to be OK. We’ve faced a lot since Charlie’s diagnosis, but now I know that Bluebell Wood really is the best thing to come out of such a bad situation. They really do support the whole family. Without the hospice our lives would just be so different.”

Corporate champions We work with some incredible corporate supporters who have gone above and beyond to make a difference to local families. Here’s what some of our corporate partners have been getting up to since our last update.

Bank Park brings in the pounds Car parking company, Bank Park, have worked with us since 2012, giving a donation to Bluebell Wood for each car which parks in their Pay and Give car parks. In that time they’ve raised an incredible £100,000 across their sites.

Their most recent car park is now open, just by Bassetlaw Hospital, on Kilton Hill in Worksop.

ITI’s pedal power ITI have been fundraising for Bluebell Wood since 2017, and since then they have taken on some incredible challenges along the way to tot up an amazing £20,000.

Last year ITI used their pedalling power to fundraise, with 11 staff taking part in the 250 mile long cycle from London to Paris!

They’ve got lots of fundraising planned for the next few years too, including climbing Mt Kilimanjaro!

Quinn’s have the drive to fundraise Quinn’s Car Transport joined our 365 Business Club back in 2015, and since then they’ve gone out of their way to support Bluebell Wood in any way they can.

In the past three years, they have raised over £25,000 from generous donations, fundraising at their Christmas parties, and taking on Tough Mudder. Great work everyone!

Shake, rattle, and roll!

We’d like to say thank you to Leeds Building Society, who recently gave us a grant of £993, which we have used to buy new music equipment for our music therapy sessions.

These sessions are a great way for children and young adults to express their thoughts and feelings using songs and music.

Insight continue to go the extra mile Leading IT products and services provider, Insight, have supported Bluebell Wood for the past two years. They frequently offer their expertise to the hospice, and recently worked outside of hours to completely re-wire our network cabinet, which would have cost us £748. In 2018 they raised over £100,000 through fundraising, donating bags of clothes for our shops, and taking part in events (their Head of Sales, Rob Glegg, even got sent to ‘prison’ in our Jail’n’Bail event).

Their staff have had so much fun during the last two years that they’ve chosen us as their charity of the year once again - we can’t wait to see what they get up to in 2019.

Celebrating ten wonderful years of care Last year was a very special one for the hospice, as we celebrated ten years of life-changing care. In that time we’ve been a home from home for families during the toughest times imaginable.

Over the year we celebrated our tenth birthday in lots of exciting ways; from holding a birthday bash at the hospice to hosting the Paulette Edwards show on BBC Radio Sheffield.

One of the special ways we celebrated our anniversary was by holding a birthday ball at Sheffield City Hall. Stilt walkers, fire-eaters, a magician, singing waiters, and singers Luke Sabatino and Sydney Barlow (who is the sister of one of the young adults supported by us) gave the evening a magical feel. Family members, supporters, volunteers and staff all dressed up in style, helping to raise an incredible £16,000.

Helen Mower, our Head of Fundraising, said: “It was a wonderful night and brilliant to see so many supporters of Bluebell Wood in one place. We’d like to thank everyone who contributed to the evening, whether they sponsored the event, bought a ticket, or made a donation.”

The ball was so much fun, we’ve decided to hold another one! If you’d like to find out more about our Masquerade Ball on Saturday 21st September, please visit www.bluebellwood.org/events.

Saturday 18th may, 10am - 4pm Clifton Park, Rotherham

Sponsored by:

Come cheer on the craziest carts at our soapbox derby or sign up your own mean machine at w ww.bluebellwood.o rg

One of the teams flying through Clifton Park in May is Ethan’s Rocket, who are racing in memory of Ethan Muffett. Ethan passed away at Bluebell Wood when he was just six days old, after being born with a heart defect.

His parents, Anna and Matt, were told that it was only a matter of time before they would have to say goodbye to their baby, so they moved to Bluebell Wood where they could be a family.

Matt said, “When we arrived, we were made to feel at home straight away. The room we stayed in meant we were with Ethan day and night, which was something we didn’t get to do in hospital. For the first time we got to take care of him as parents do.

“On our third day with Ethan, we knew his heart was beginning to fail. The night before he died, we sat with him in our arms and watched him sleep. I told him I loved him and we read ‘I love you as big as the world’ to him. He looked into my eyes for the last time and drifted off. ”Two of the nurses bathed Ethan and dressed him in the clothes I had chosen. I couldn’t bear to do it myself. I held him in my arms for three hours after he had passed because I couldn’t let him go. But at the point that I did, I knew it had to be the last time I held him.

“The Care Team made us feel at home and gave us chance to be a family in a safe, comforting place.

We had people around us supporting us when we needed. It was like being in a safe bubble.”

Anna added, “Everyone at Bluebell was amazing, which is why we’d like to raise as much money as possible so they can continue to support families like ours.”

Want to fuel Ethan’s Rocket this year? Come and cheer them on at Clifton Park on Saturday 18th May.

Researching hospice care at Liverpool University Last April we partnered with Liverpool University to see how we could improve our hospice care. The team had previously studied adult hospices and wanted to speak to parents, young people and siblings to find out about their experiences at a children’s hospice, and how hospices could use these experiences to improve their services.

The team used ‘touch points’ - cards of pictures and prompts to help spark conversations with families - to look at all areas of our service. After they interviewed families they looked for themes to help us see what we were doing well, and gain valuable feedback.

We’ve outlined some of the findings below: •

•

•

•

Families told the team they felt reassured as soon as they walked through our doors. They said Bluebell Wood was a happy, welcoming place - ‘Bluebell Wood just surround you with love’. The research team suggested we find ways to provide more information to new families, so we updated our website last summer to help convey that ‘magic’ to new families.

The ‘little extras’ we provide mean so much to families - from the delicious food cooked by our chef, to the Amazon Echos installed around the hospice. It was suggested we could make our parent bedrooms more comfortable, so we’re currently refurbishing all our rooms to make them feel more like home.

Our family support services are really important to families. We were asked to provide more opportunities for teenagers and young adults - we now have a new Transition Co-ordinator who is working to provide this support.

Our Care Team helps families cope with the hardest of times, and we were told we offer excellent support after bereavement. One parent said, ‘I think they’ve got the best staff they could possibly have’.

Before

After

We hope you’ve enjoyed finding out about this research, and how we’re continuing to improve our services for local children and families.

Date:

1st February 2019

To do today:

Make memories!

Help us make a difference I’m Gemma, a Nurse Team Leader in Bluebell Wood’s Care Team. I’ve worked here since 2008, before the hospice even opened its doors.

One of my favourite things about coming to work is hearing so much laughter every day. Bluebell Wood is a home from home for families, a world away from the hospitals most of them have been to before. Our work doesn’t just take place within the hospice, either. Our team also visit children and young adults at home, giving parents some much needed me-time.

Amelia had so much fun

Our nurses are there to help our families last weekend! make the most of every moment. Whether they’re talking to new parents about the hospice (and reassuring them it’s not a scary place), helping to give medicine, or creating masterpieces in our messy play room; our specialist nursing team, provide expert one to one care, while making sure families can have a well deserved break. £159 could pay for a day of specialist palliative nursing care, and I would love it if you could make a donation to help us reach that goal. Please turn over to get involved, and help us continue to be there for children and families when they need us most.

I love this photo !

I didn’t realise I’d end my last shift covered in so much paint!

Make a donation

NURSE19

To make a difference to local families, please fill in the form below and return it to us at Bluebell Wood Children’s Hospice, Cramfit Road, North Anston, Sheffield, South Yorkshire, S25 4AJ using the FREEPOST envelope provided.

Title:

Name:

Address: Postcode: Email: Donation amount:

Tel.: £13

£26

£53

Other: £

Two easy payment methods: 1. By cheque - made payable to Bluebell Wood Children’s Hospice 2. Please charge my Credit/Debit Card with the total donation value above.

Card number: Valid from: Switch card issue no.:

Expiry date:

Security no. (Last 3

digits on back of card):

Signature:

Keeping in touch: It makes perfect sense to us that we should only contact you to tell you about things we do that you are really interested in.

Tick here if you WANT Bluebell Wood to keep you informed BY EMAIL about the impact of your fundraising and other ways to get involved, including future events, campaigns, and appeals.

Tick here if you DO NOT WANT Bluebell Wood to keep you informed BY POST about the impact of your fundraising and other ways to get involved, including future events, campaigns, and appeals.

We hold your data on our supporter database for a maximum of 7 years from the date of your last donation. We use your data to contact you about appeals, events and ways to support us and for anonymised statistical analysis. We will never pass your details to any other charity. From time to time we may pass your data to data cleansing companies, to make sure our database is up to date and we are not mailing to supporters who have passed away or moved house. We never append or buy data to add to what we have collected from you. You can find more details on how we protect your personal data and privacy at www.bluebellwood.org/privacypolicy or by calling 01909 517 360. If you don’t want to be contacted by us again please give us a call or email m ailings@bluebellwood.org.

Boost your donation to us by 25p of Gift Aid for every £1 you donate at no cost to you: • I want to Gift Aid my donation and any donations I make in the future or have made in the past four years to Bluebell Wood Children’s Hospice.

• I declare that I am a UK taxpayer and that if I pay less UK Income Tax/Capital Gains Tax than the amount of Gift Aid claimed on my donations in that tax year it is my responsibility to pay any difference.

• I will notify Bluebell Wood Children’s Hospice if I change my name or address, no longer pay sufficient UK Income Tax/Capital Gains Tax, or if I wish to cancel my declaration. If you pay Income Tax at a higher or additional rate and want to receive the additional tax relief that is due to you, you must include all your Gift Aid donations on your Self-Assessment tax return or ask HM Revenue and Customs to adjust your tax code.

Signature:

Tick here: