Spring Newsletter 2018

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Update

Spring 2o18 www.martinhouse.org.uk


30th Anniversary Round-Up

1 Easy step to stay in touch Say ‘Yes’ to helping children and young adults with life-shortening conditions in your area.

Family-led care is at the heart of all we do at Martin House, so when we marked our 30th anniversary in 2017, it was important that we included families past and present in all of our celebrations.

Message from our Chief Executive

Changes to the law will soon mean that unless you tell us that you’d like to keep in touch, we will not be able to contact you again. If you don’t respond, you’ll no longer hear stories about the support you’ve helped to provide or receive news about events and fundraising opportunities. After 30 years of caring for children, young people and their families with life-limiting conditions, Martin House is now planning for the next 30 years and how we can care for more children in our area who we know need our support. You are an enormous part of our future so please take a moment to let us know how you would like to hear from us. It couldn’t be easier to keep in touch, simply: • Fill out the form enclosed and return in the pre-paid envelope • Or go online at martinhouse.org.uk/keepintouch • Or you can call us today on 01937 844569 Of course, you’re free to change your mind at any point in the future - simply call the number above or email supportercare@martinhouse.org.uk Being able to contact you about the work of the hospice is essential to us. We want to be

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We invited families to join us for a service of celebration at Selby Abbey in the summer, and to a garden party at Martin House later in the year, providing opportunities to share memories and stories together. The care team came up with the idea of a music festival for our teenagers and young adults - and LodgeFest was born. able to continue caring for those children and young adults across the region who rely on us for care, respite, for home and community visits, and for comfort and practical support in the toughest of times. You make that happen and for this we, and the families that we can help, are truly grateful. Please say ‘yes’ as soon as possible. If you don’t let us know how you would like to hear from us, we will not be able to contact you or share news and updates with you once the new regulations come into effect on 25th May 2018. From myself and all at Martin House -

Martin Warhurst Chief Executive

Thank you

We brought in bands, comedy, magicians, street food, and we had DJ sets from one of our young people and our ambassador Jeff Hordley - Cain Dingle on Emmerdale - and we managed to bring the whole music festival experience to them. It was such a hit we’re now looking to make it an annual event. It was also important to us to share our anniversary with the community, so we worked with professional artist Sarah Jane Palmer, together with our families and schools from across Yorkshire to develop an art project. Our children and their families took part in workshops to help create the design for an interactive art inflatable, while children from schools across West, North and East Yorkshire helped to create an accompanying butterfly animation. The result, called The Butterfly and The Bird, is something which we can take out to the community to raise awareness of Martin House. We also created a fundraising event - the Big Family Bear Hug Walk - which gave the chance for families and supporters to take part in a celebration of Martin House, while also raising money. Families flocked to Temple Newsam on a beautiful September day to walk through the woodland, with bear-themed activities and musicians playing on the route, before enjoying a fun day in the sun.

Martin Warhurst, chief executive, said: “We’ve had so much to celebrate in this anniversary year, and it has been a joy to see so many friends of Martin House - old and new - join us in marking this special landmark. “We’re now looking towards the future, and how we ensure that we continue to provide the kind of care and services our children and young people - and their families - need for the next 30 years.”

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Extending Our Support Continuing support for families after their child has died has always been an important part of our care at Martin House, and this takes the form of both group and individual work. Over two years ago, a community bereavement service was established as a pilot project within our bereavement team to work with families who had not previously used the hospice.

Although the majority of families come to Martin House because their child has a life-limiting condition, sometimes we receive referrals for care following a death in traumatic circumstances such as a road traffic accident or suicide. When Emma Oliver’s 15-year-old son Daniel Long committed suicide in February 2017 after struggling with stress while revising for his GCSEs, the family were offered the chance to use one of our cooled rooms. It meant Emma, her daughter Chelsea Oliver, her mum and aunt were all able to spend time with Daniel before his funeral. “We visited him every day and stayed with him,” Emma said. “The care team helped us make memory items, like Christmas baubles with Daniel’s fingerprints, so we have something each year for him and he doesn’t get left out. They really looked after us.” For Emma, being with Daniel at Martin House gave her time to start to come to terms with what had happened. She said: “It happened so quickly. When someone is poorly, while you can’t prepare for it, you know it will happen and can spend time with them. “But with Daniel it was so sudden. If he had gone to a

mortuary and I’d never seen him again, it would have been much harder. Being at Martin House gave us time to get used to the idea that he was gone; it may sound strange, but it was a nice experience.”

Emma and Chelsea are continuing to receive bereavement counselling and support from Martin House. “I’m quite a closed person, and I never thought this would make a difference, but actually it’s helped me a lot,” she said. “I also go to the bereaved parents’ group every month and meet other people in a similar situation. It helps knowing there are other people going through this, who understand what it’s like.” For Emma, her friends and family and Daniel’s friends, fundraising has also helped them, and they have raised more than £10,000 for Martin House. She added: “It’s given me something to focus on, for me, Chelsea and Daniel’s friends. Fundraising and being able to talk about Daniel, and what we have experienced as a family, has helped us.” Emma and Chelsea have also launched a campaign to make sure there is more counselling support for students experiencing exam stress: “It’s going well. We’ve got a petition going, some MPs are supporting, as going by Daniel’s story, there’s not enough help out there for teens.”

A Surprise Visit England football manager Gareth Southgate made a surprise visit to Martin House’s Christmas party, delighting children and families. Gareth spent a couple of hours meeting children and young people, posing for pictures, handing out FA goody bags and signing autographs. He said:

I think in football we have the opportunity to bring moments of happiness to people when they watch us but also when we spend some time to visit a place like Martin House and remind ourselves how fortunate we are. It certainly puts life into perspective and I’ve been able to make some young people very happy. We’re in a privileged position to be able to have an impact away from what we do on the field. Martin Warhurst, chief executive of Martin House, said: “Gareth made a huge impression on everyone, he took so much time to talk to our children and families. He really made it an extra special occasion.”

Firm’s generous donation We have been blown away by corporate support over the years at Martin House. Recently we were left speechless by York firm Nu U Nutrition, which began supporting us at the end of 2015.

The company has been making regular donations to our care services, so corporate fundraiser John Haigh invited Wayne Dixon and Mark Hodgson from Nu U Nutrition to visit Martin House, to learn more about how their donations support our services, and meet chief executive Martin Warhurst. When they arrived, the presented us with a cheque for £20,000, bringing their cumulative total of support to £46,600. After hearing the total figure, they topped up their donation with an extra £3,400 – making a round total of £50,000! John said: “The regular support Nu U Nutrition give to us is so important and gratefully received – but to add such a magnificent donation on top almost had me lost for words!”

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NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR

Following a jam-packed and fun-filled year of events in 2017, our events calendar is set to provide even more excitement for 2018. This year, we have a whole host of new events for your diaries. Go to www.martinhouse.org.uk for more information and to book your place. In April, we’re holding our first Martin House cycling event The Bradford ‘Big Dipper’ Sportive. Journey from Bradford across picturesque Yorkshire landscape on one of three, bespoke routes mapped for this event. Whether you’re an avid cyclist or a novice rider, challenge yourself to try something new! May is Music for Martin House month. Perhaps you play in an orchestra, or are the frontman for your band, or maybe you’re a solo artist wanting to put on your very own gig? Whatever your music genre, across May, you can raise money for Martin House by holding a musical event.

At Martin House, we cater for an array of families from all different backgrounds, cultures and religions. We pride ourselves on being a cohesive and inclusive place of care for all of our families. In May, for our Muslim families, the religious festival of Ramadan takes place. This year, we are holding a community event - The Great Giftar - incorporating breaking the fast with an iftar and charity giving. We welcome anyone who celebrates Ramadan to take part in The Great Giftar, holding an iftar in aid of Martin House. We’re running our first Yorkshire Three Peaks Challenge in June. Dust off your walking boots and get laced up to take on Whernside, Ingleborough and Pen-y-ghent! Our volunteers and field marshals will be cheering you on all the way up and all the way back down again. Gather your supporters along for encouragement!

Light up a Life

Kapow! is another of our new events for June. Run, jump and tumble your way through a foam-filled obstacle course. Complete all 10 obstacles and slide down to the finish line! Bring your friends and make some fantastic memories.

All new for August is our Martin House Video-Game-a-thon. Are you a gaming fanatic? Come along to eDen in Leeds for our 24-hour gaming marathon and choose from a number of different games consoles to play on!

Our Light up a Life services return this year to Boston Spa and Skipton, with an additional service to be held at Bradford Cathedral for the first time. This will enable our families and Martin House supporters based around the Bradford and surrounding areas to attend a memorial service and remember those they have sadly lost, in the comfort of a reflective environment with other Martin House families and friends.

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FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018

W 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NEW FOR 2018 • NE

A spotlight on the community In January, nine-year-old Lucy (pictured right) from Bradley in Skipton donated some of her unwanted items to our Skipton shop. She was curious to find out more about what Martin House does, so she asked our staff members in the shop, who informed her about the care we provide for children and young people. Inspired by what she’d learnt, Lucy, along with her friend Ashleigh, baked marbled chocolate cakes to sell to their neighbours. They raised £11.20 for Martin House, which is enough to buy the ingredients for a child to have lots of fun baking when they come to stay. Following their fundraising efforts, we invited Lucy and Ashleigh to visit Martin House, to see where the money they had kindly raised for us would be going. When they arrived, they presented our Community Fundraiser Chris Verney with a long list of fundraising ideas that they hoped to fulfil. In return, we provided information packs and materials that would help the girls to raise awareness of Martin House when they returned to school. Chris said: “These two young girls are truly an inspiration. It is amazing to see their initiative and creativity making a real difference to other children in their local community.”

These two young girls are truly an inspiration. It is amazing to see their initiative and creativity making a real difference to other children in their local community.

Well done and thank you for your support, Lucy and Ashleigh!

We love to hear your fundraising stories and we’re always grateful for the efforts that our community supporters go to. If you would like to share your fundraising story with us, please email: appeal@martinhouse.org.uk.

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Supporting Changing Needs

Charlotte Pethen, 22, lives in North Yorkshire, and has been supported by Martin House for five years. She has ataxia telangiectasia, a rare degenerative condition that affects the muscles, co-ordination, balance and immune system. Following the deaths of her parents, Charlotte has been living independently. She describes her experiences, and the impact of the project on her life:

More and more young people with life-limiting conditions are living into adulthood and Martin House is working on an innovative project with St Leonard’s Hospice in York to support their changing needs.

“Life can be pretty strange and quite a challenge at times. In December 2016 my mother died suddenly and then in February 2017 my father died of heart disease.

The project - Expanding Worlds - received funding from Together for Short Lives in October as part of its new Improving Transitions for Young People Fund. Advances in medical technology means the numbers of young people with life-limiting conditions are increasing, but many are not getting the support and care they need as they transition from children’s to adult services. The project aims to develop, evaluate and share an innovative service for young adults with life-shortening conditions that will benefit not only young people in Yorkshire, but across the UK. Dr Jan Aldridge, consultant clinical psychologist at Martin House, said: “These young people and their families are presented with considerable new challenges, and at this particularly difficult stage they often feel abandoned and neglected by wider society. “They are a pioneer generation and we have much to learn from them.” A group of young people supported by Martin House meet monthly at St Leonard’s, as well

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“They were remarkable parents, fun, loving and kind - the best. as making trips out as part of the project and trying activities including music, photography and brewing their own beer. In December they staged an art exhibition at St Peter’s School in York, called Legless: Challenging Perceptions, which featured photos and films they have made reflecting their experiences.

“Fortunately I have a great brother and sister-in-law, niece and nephew. They live in a small house, but they took me into their home for seven months, until something could be sorted out for me. “I have problems, but I am doing pretty well considering. I have never lived on my own and it is hard - but also exciting. I am on a steep learning curve.

Barbara Gelb, CEO of Together for Short Lives, said: “Too many young people face significant barriers to getting the right care and support as they make the transition from children’s to adult services. Supporting new initiatives in this area is absolutely vital in enabling seriously ill young people to realise their full potential.

“It is quite lonely at times, but my two amazing dogs, Baby and Prince, help me get through.

“I can’t wait to see the results as these young people are given the tools and help they need to grow and achieve their dreams.”

“You never know what is round the corner, so make the most of your life while you can.”

“This new project is perfect. I have been involved in its development from the beginning. The voices, wishes and needs of the young people are central; it is not just something that is being imposed on us. There is so much to learn about life, and the plan is that we do it together.

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Leading our nurses in the right direction Dr Michael Tatterton has been a member of the leadership team here at Martin House for four and a half years. Last year, he took on the role of Nurse Consultant a role that exists in only five out of 49 hospices in the UK. The Nurse Consultant role combines leadership in clinical practice, education and research. Michael leads the nursing team, introducing new practices and providing relevant education to develop the abilities of our nurses further. He also undertakes research to provide evidence-based care development, working with other professionals interested in palliative care and presenting research across the UK. Michael has worked as a children’s nurse, health visitor and specialist practitioner, as well as in nursing leadership roles and lecturing,

giving him a range of experiences to draw on in the Nurse Consultant role. His PhD, which focused on how grandparents experience the death of a grandchild, recognised the need for broader palliative care support within the extended family. Michael is looking to integrate this further into Martin House, among a range of new initiatives including non-medical prescribing, the care we offer to premature babies and their families, and the care we offer in the community.

Make a Will month 2018

Each May, we offer our Martin House supporters the chance to take part in Make a Will Month, giving you the opportunity to make or change your will at a discounted rate with one of our participating solicitors. At the small cost of £60 for a basic will, or £110 for a pair of basic matching wills (prices include VAT), you can ensure that the people and causes you care about are provided for.

Legacies make up a significant part of our voluntary income, with one in four of our children and young people being cared for by a gift left in a will. You are under no obligation to leave a legacy in your will to Martin House, but if you choose to do so, please be assured that your gift will enable us to care for families in the years to come. To take part, simply book with one of our participating solicitors mentioned on the attached form during May and present your voucher.

If you would like a confidential chat about how leaving a gift could benefit our families, please email appeal@martinhouse.org.uk or speak to Thomas Piercy on 01937 844569. 10 Martin House Spring Newsletter 2018

Out and About in Our Shops Our retail chain is a vital link to communities, and a new programme of refurbishment is strengthening that bond by bringing a piece of Martin House into our shops. Visitors to Martin House will be familiar with the striking mural decorating our walls, created by our artists in residence Helen Scouller and Sarah Aspinall, which reflects the aspects of care we give to families. As part of a programme of refurbishment, we are bringing the same artwork into our shops to help bring the story of Martin House to the community.

Vicki Burnett, Head of Retail, said: “As Martin House covers such a wide area, our shops are often the main port of call for supporters, as a place to donate, to buy our goods and to find out about our fundraising events. “But we want to make sure they are also a place where people can learn about Martin House and what we do, so we wanted to bring a sense of Martin House into the shops by incorporating Helen and Sarah’s amazing mural into the shops.” In recent months our Acomb, Headingley, Yeadon and Wetherby shops have had a refit, introducing bold colours and a shabby chic style, in addition to the bespoke artwork.

Vicki added: “The new look has given a tremendous boost to our managers and volunteers, and the artwork on the walls gives them an opportunity to talk to customers about Martin House, and what children’s hospice care means.

“We’ve also seen an increase in sales at every shop we’ve refurbished, which is fantastic of course, and across all our shops we’ve performed well in the last year, with sales up by 8.5 per cent in 2017.” Some of our shops, along with Martin House Makers, are also joining social media, with Facebook pages and Instagram accounts, as another way of connecting with their communities. Our retail operation is also growing, as we have taken a second warehouse at Thorp Arch, which neighbours our existing furniture warehouse and showroom.

The new warehouse will give us more storage space to support our shops, and a base for our eBay sales. It will also provide a place for our upcycling and pop-up shop project, Martin House Makers, to hold ‘make and take’ craft workshops. Vicki said: “This is an exciting time, with lots more plans in store to make 2018 an even more successful year for our shops.”

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Meet Daniel who comes to Whitby Lodge

A personal reflflection on our day- to - day care

Daniel Allen has just celebrated his milestone 30th birthday and has been visiting Martin House since the age of eight. Renowned across Martin House for his warm smile, infectious laughter and gentlemanly nature, we caught up with Daniel to ask him about why he enjoys visiting Martin House, and to find out a little more about how Daniel likes to spend his time. What do you like to eat when you come to stay?

Have you been on any trips with Martin House?

I like to eat meat and potato pie and lasagne!

Yes I have. I have been to Goathland, York Dungeons and York Railway Museum recently. I also went to see Paddington 2 at the cinema.

What activities do you enjoy doing when you’re here? I like watching Chitty Chitty Bang Bang on the television in the lounge.. and Ghostbusters, and The Goonies! I like taking part in music quizzes and sometimes I play on the Nintendo Wii. I bring my colouring book and pens with me and sit on the comfy sofa. When I stayed last Christmas, I baked some cheese scones with my friends.

And what do you like doing when you’re at home?

Do you feel relaxed when you come to Martin House?

My favourite Disney film is Pinocchio. In February, I went to see it on stage in London with my mum! And I’ve been to Disneyland in Paris.

Yes, I do. I have a very comfortable stay. I like to have a bubbly bath! And when the sun is shining, I like to go out in the garden. I have made a bird box for the garden (pictured). Do you like meeting other young people when you’re here? I do. I like to see my friends.

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I like listening to my music and singing. What sort of music do you like listening to and singing along to?

At Martin House, no two days are the same for care team member Rachel Greenwood. When Rachel, a paediatric physiotherapist of 30 years, isn’t delivering physio or medical duties, she could be making pom-pom birds for a wall display or supervising play in the garden. She tells us how her physio experience paired with learning new skills and having fun enables her to fulfil her role on the team. “Being a part of the care team allows me to provide hands-on, practical care of the children and young people. My full focus and attention is on the needs of the children and the family.

we decided to take our children, young people and staff to the Yorkshire Wildlife Park in Doncaster. Robin made up 19 packed lunches at the drop of a hat and within an hour we were on the road!

“I love the extended nature of the role and the new things I’ve had to learn. While I continue to deliver specialist physio input as necessary, I’ve learnt many nursing skills that were new to me. All the members of the care team bring different qualities and competencies, allowing us to provide our holistic approach to care. We’re very much supported by Martin House in clinical practice development and supervision sessions, where we learn from others and reflect on how we can do things better. It’s a truly collaborative effort.

“Or, like recently, when one of our children who was staying in the house made friends with a sibling who was of a similar age. She’d never had a sleepover because of her complex medical needs, but her newfound friend was able to stay on the sofa bed in her room. She was so unbelievably excited to experience her first ever sleepover. It’s times like these that really make me feel privileged to be in this job.

ABBA, the Beatles and Disney. What is your favourite Disney film?

Do you take part in any groups or clubs? Yes, I go to Jennyruth workshops, where I learn woodwork and painting. I made my bird box for Martin House there. I’ve also made a nativity scene, a heart for the wall and cloud chalkboards for Martin House bedrooms (pictured). How did you celebrate your 30th birthday? I had a cowboy party! I learnt to line dance with my friends. And, I had a Hogwarts train cake!

Rachel on our trip to Kielder last year

One of my favourite areas of the role is trying to make the stay as fun as possible for our children and young people. Those days when we can throw caution to the wind make for some of the best times and memories.

“One of my favourite areas of the role is trying to make the stay as fun as possible for our children and young people. Those days when we can throw caution to the wind make for some of the best times and memories. Last summer, for example, on a beautiful, sunny day,

“I really value making time for the siblings of our children and young people, who are often quietly struggling. Only a few weeks ago, I spent an hour with a sibling of one our children, where we sat in the art room, just the two of us, and made all things glittery and wonderful. It wasn’t about the work of art produced, but rather for the sibling to experience uninterrupted support, to give them chance to talk and express their feelings. “Night shifts are always interesting, particularly in Whitby Lodge. As our care is very much led by the needs of the young people, the care team can be playing UNO until the early hours of the morning, or cooking chicken nuggets at 3am by request! In the house, it tends to be more settled and peaceful – an ideal time for us to spend with families. “Ultimately, the care team share some of our families’ most difficult times and walk alongside them on their journeys, guiding them through the care of their children, while creating happy memories along the way.” Martin House Spring Newsletter 2018 13


Volunteering Volunteers provide vital support across many areas of Martin House, helping us to continue providing our service.

Ev en tv olu nte ers at

We have more than 350 active and regular volunteers, manning our shops, helping to maintain and drive our vehicles, supporting our chefs in creating meals for families, keeping the Martin House grounds looking beautiful, supporting fundraisers and admin staff, and so much more.

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Supporting Us r be m e t ep in S our Big Bear Hug walk

It’s important to us to ensure our volunteers know how valued they are, so recently we’ve held some events to thank them for their efforts. An afternoon tea took place at Martin House for our events volunteers, who help to set up, steward and support staff at our fundraising events. We also held a special day for our community ambassadors - volunteers who represent Martin House in partnership with our community fundraisers - a chance to thank them and keep them briefed on what’s happening at the hospice. Heather Griffiths, volunteer co-ordinator, said: “Our volunteers are so important to us, they do so much to help us. On average, Martin House volunteers give around 64,000 hours of their time to us every year, which is worth more than half a million pounds - but that is a fraction of the value of what their support means to us.”

We always need volunteers to join us, and there are a variety of roles available. If you would like to find out more, contact Heather on:

hgriffiths@martinhouse.org.uk

or visit www.martinhouse.org.uk to find out more

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We really value your support which we receive in so many different ways. Whether you give us a regular gift in the form of a direct debit, fundraise for us, leave us a gift in your will or donate to our shops - we really are very grateful. We also take your security seriously and as such no longer accept payment by credit card through the post. If you would like to make a donation or purchase raffle tickets there are still many ways that you can do this.

Stay in touch... Go online by going to our website

www.martinhouse.org.uk it’s quick and easy to purchase your tickets or make a donation.

Call us - our team are poised and ready to take your call. Call us on 01937

844569 from

8.30am - 5.30pm Monday to Friday. Send us a cheque - cheques are always

welcome - please use the pre-paid envelope that we have included. Plus, you can also include your mailing preferences form so that we can stay in touch.

Thank You

Drive Away in a Brand New Citroen C1 Thanks to the generous support of our longstanding sponsors, HARIBO and Evans Halshaw Leeds, our Grand Car Raffle returns this summer for its eighth year, having clocked over £250,000 for children’s hospice care in our region. For only £1 per ticket, you could be in with the chance of owning a brand new Citroen C1 with a 3-year warranty, servicing and - best of all zero-rated road tax. This compact and stylish little motor could be the perfect run around for a busy mum or a great first-time car for heading off to Uni, so there really is no reason not to have a go. Every ticket you buy will make a difference

to a family in your area, ensuring they receive very best care of support wherever and whenever they need it. We are very grateful for the support of confectionery firm HARIBO and car dealership Evans Halshaw Citroen of Whitehall Road, Leeds, ensuring that all proceeds go towards supporting Martin House families.

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Martin House Hospice Care for Children and Young People, Grove Road, Boston Spa, Wetherby, West Yorkshire, LS23 6TX Tel: 01937 845045 appeal@martinhouse.org.uk www.martinhouse.org.uk Follow us on

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Linkedin by searching for Martin House Children’s Hospice

Registered Charity No. 517919. A Company Limited by Guarantee Registered in England & Wales No. 02016332. VAT Registration No. 686 5694 67


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