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Autumn 2017

Update

www.martinhouse.org.uk


Introducing Our New Chief Executive

In July we were delighted to welcome Martin Warhurst as our new Chief Executive. Martin will continue to drive the development of our services to ensure we are an excellent provider of care to children, young people and their families. Martin, 43, trained as a chartered accountant, and then spent ten years working as an audit and advisory consultant to the social housing sector, before joining Cestria Community Housing in County Durham, first as director of finance and corporate services and then becoming managing director in 2014. He said: “It’s always been important to me that I work in areas where I can make a positive impact on people’s lives, and I like to be part of an organisation which has a family feel. “I am delighted to have the opportunity to work with the excellent team here, contributing to making a real difference to the lives of our children and their families and I am really looking forward to building on our many strengths. “My father needed the care of his local hospice, and the assistance it gave was the bright light in a very difficult situation. Until I experienced it first-hand, I didn’t realise the impact hospices have on people’s lives.” We wish Martin well in his new role and look forward to sharing his plans with you in the future.

A Little Each Month Goes a Long Way With your support, we want to ensure that we can continue to provide familyled care for the next thirty years and beyond. One of the ways you can help us to do this is by making a regular gift to Martin House. Making a regular donation across the year allows us to provide weeks, months and years of support for our children and young people. It also provides a dependable, sustainable income that enables us to plan for the future of our services. Over time, a donation of just £2, £5 or £10 could mean that a family referred to us following the devastating diagnosis that their baby has a life-limiting condition, can receive support for as long as they need it whether this is for the next 10 months or the next 10 years. The process of making a regular gift is completely safe and secure. We never share your details with other organisations and you can rest assured that your donation will be spent in the best way possible. We will give you full control over the amount you choose to donate and will fully respect your wishes should you change your mind at any time. You can find more information about the benefits of making a regular gift and sign up to the scheme on our website at www.martinhouse.org. uk, or contact our fundraising team on 01937 844569.

Dedicate a Light

Christmas is a time for celebration – but also to remember loved ones who are no longer with us. Our Light up a Life Appeal gives you the chance to commemorate the life of someone special with a personal dedication.

You can enjoy a rare insight to how Martin House supports families when we throw open our doors for our annual Open Day on Sunday 8th October. The event, which runs from 11am to 3pm, is a once-a-year chance to see behind the scenes at the hospice and learn what difference the money you raise makes to our families. Throughout the day our Care Team will be giving tours of the building, and there will be talks from special guests, a range of family-friendly activities on offer, and the chance to find out more about fundraising and volunteering for Martin House.

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There will also be the chance to enter our tombola and raffle, browse our selection of Martin House merchandise and Christmas cards, drop off donated goods, and enjoy a chat and refreshments with our staff and volunteers. Whether you are a regular supporter or a first-time fundraiser, don’t miss this opportunity to learn more about Martin House. For more details visit our website or call the fundraising team on 01937 844569.

For a donation to Martin House, you can dedicate a Christmas tree light in memory of your loved one, and receive a personalised keepsake card and a listing in our commemorative books. The books will remain on display at venues across the region until Twelfth Night and new additions will be accepted until 5th January. This year’s multi-faith Light up a Life services will take place at St Mary’s Church, Boston Spa on Tuesday 5th December and Holy Trinity Church, Skipton, on Wednesday 6th December.

They will include carols, readings and time for remembering. Once again you can choose to make your dedication online on our Light up a Life virtual memory page. Here, you can include a personal message alongside your dedication that can be seen anywhere in the world.

You can make your dedication online at www.martinhouse.org.uk, in one of our shops, or by calling our fundraising team on

01937 844569 Martin House Autumn Newsletter 2017 3


Business Club’s Third Birthday Celebration This summer, our Business Club celebrated its third birthday in style with a meeting in the luxurious surroundings of Oulton Hall Hotel in Rothwell. Kindly hosted by Business Club member Leeds Audi, around 40 members and guests attended the event. One of the hospice’s founding figures, the Venerable Richard Seed, gave a moving talk about how Martin House was established and the role it has played in the lives of families since the doors first opened in 1987. The Business Club meets four times a year and is an opportunity for our corporate supporters to meet, share information and experiences, raise funds and demonstrate their commitment to children’s hospice care in the region. Members make a contribution of £250 (plus VAT) each year, providing a regular, sustainable income for services across West, North and East Yorkshire. For a no obligation chat about our Business Club, or to find out about upcoming networking events, contact us on 01937 844569, or email jhaigh@martinhouse.org.uk. You can also sign up online at www.martinhouse.org.uk.

Anniversary Raffflle Success

Our 30th Anniversary Raffle raised over £30,000 and saw one lucky winner take home the keys to a brand new Citroen C1. A huge thank you to everyone who took part this year, and especially to sponsors HARIBO and Evans Halshaw Citroen, Leeds, and prize sponsors The Fizz Company and Walker Morris. The support of our sponsors ensures that more money from your ticket goes towards supporting children and families. You can find out more about this year’s winner on our website, as well as purchasing tickets for our Christmas Raffle, which closes on Monday 27th November. Good luck! 4 Martin House Autumn Newsletter 2017

Get Go- Go- Going for Christmas is the time for presents, mince pies - and donning your Santa suit to run for Martin House. Join us at Stockeld Park, Wetherby, on Sunday 26th November for our favourite festive 5k, Santas on the Run. Santas young and old will put on their red suits and white beards to walk or run around Stockeld Park’s magical Enchanted Forest. Perfect for Saint Nicks of all ages, shapes and athletic ability, you can tackle up to five laps of the 1k route around the sculpture-filled forest among a sea of other Santas. This popular event is suitable for all the family and is a great way to start the festive season while raising vital pounds for Martin House. It costs just £10 for adults and £7 for under 16s, while children under five go free – and the price includes your Santa suit!

Sign up online at www.martinhouse.org.uk

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or contact our events team on 01937 844569 or events@martinhouse.org.uk

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Thank you Thank you Thank you Thank you Thank you Thank you Thank you Thank you Than

Spending a penny in a York department store has helped Gillygate Friends’ Group raise more than £31,000 for Martin House.

Community Fundraiser Alison Wragg said: “It’s a remarkable amount of money to raise and has taken a real commitment from Gillygate Friends, Gillygate Friends, who have supported the hospice for who have been in store with their collecting tins four days a week, every week, for two years. The over 15 years, were given a collection pitch outside the toilets in Marks & Spencer on Parliament Street as support of groups like the Gillygate Friends and part of the ‘Spend a Penny, Donate a Penny’ appeal. organisations like Between April 2016 and March 2017, the group has Marks & Spencer collected £28,985 from shoppers and visitors to is invaluable the city, and with a further £2,464 raised by staff at to us and we M&S York through bake sales and other fundraising thank them activities, a grand total of £31,449 has been handed wholeheartedly over to Martin House. It is the second year the group for all their has collected in the store, raising around £50,000 in dedication and total. hard work.”

Hospice Team Joins Iftar in the Park

(Picture by Michelle Heseltine) Martin House joined a massive community celebration in Bradford this summer as part of the Great Get Together in memory of MP Jo Cox. Iftar in the Park saw hundreds of people of all faiths gather at City Park, and coincided with the Muslim fasting month of Ramadan (the Iftar is the breaking of fast after dusk). The Muslim Women’s Council worked with a wide range of local organisations, including

To help us celebrate 30 years of family-led care for children and young people with life-limiting conditions, the team at Harrogate-based commercial gas supplier CNG Ltd took on one of their biggest charity challenges to date – a 30,000 step staircase challenge. The team of 100 staff, glammed up in full 1980s regalia, completed the mammoth task in relay throughout the working day and have so far raised over £8,000. They are now encouraging other groups and organisations to put their running shoes on and do the same. Corporate Fundraiser for Martin House, John Haigh, said: “We are privileged to have so many organisations across the region supporting our work, but it is always a pleasure to see companies thinking outside of the box. The team should be immensely proud of their efforts and we hope that they will inspire many more to do likewise.” Find out more about organising your own challenge, or fundraising in your workplace, by contacting our corporate fundraising team on 01937 844569 or emailing appeal@martinhouse.org.uk

Uncle Mick’s Bike Ride Success

Martin House, to organise the event, which included guest performers and speakers.

Uncle Mick’s Bike Ride from Liverpool to Leeds has this year raised more than £10,400 for Martin House, with 49 cyclists and a 14-strong support team riding 127 miles along the canal path between the two cities in May.

Chris Verney, Martin House Community Fundraiser for Bradford, said: “It was amazing to see so many people from all different faiths celebrating and eating together on such a beautiful night. Community and sharing food is a central part of life at Martin House and it was great to be a part of that in Bradford, the home of so many of our families.”

It was the fifth and biggest event since being started by Mick Mason in 2013 with just himself, his brother and a neighbour. The final total raised in sponsorship this year of £10,414.02 brings the overall amount raised in the last five years to more than £32,000.

If you would like to find out more about fundraising in the Bradford area, or request a Martin House collection tin, contact Chris on 01937 844569 or cverney@martinhouse.org.uk.

Could you become a friend of Martin House? We’re always keen to hear from groups and individuals interested in committing their time and energy into fundraising for our families. Whether you’re organising a one off event or looking to set up a fundraising group in your area, contact our Community Fundraisers on 01937 844569 or email appeal@martinhouse.org.uk

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CNG Go Footloose for Charity Challenge

Mick’s nephew Alex Mason, 13, was diagnosed with Frederich’s Ataxia in 2008, a life-limiting condition that affects the central nervous system, causing complications such as poor muscle growth, curvature of the spine and fatigue. He has attended Martin House regularly since 2010.

amazing result. I want to say a huge thank you to everyone who took part or has supported us, including the dozens of local businesses who gave funds or provided supplies, because without them none of this would happen.”

Mick said: “We had a few bumps along the way, and more punctures than I could count, but it was an incredibly successful weekend, and this is an

To sign up for next year’s bike ride, contact Mick on umbr.needinfo@virginmedia.com.

Thank you Thank you Thank you Thank you Thank you Thank you Thank you Thank you

Over 3 Million Pennies Spent in York Store

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Martin House Autumn Newsletter 2017 7


group are just not suitable for her, so I’ve spent a lot of time researching toys for visually impaired children and thinking about how I can help her to engage with the world around her.” For parents of life-limited children, the word, “hospice” can be difficult to comprehend, particularly given its connotations of end of life care and, ultimately, death. But one of the things many of our families tell us is that these myths are immediately dispelled when they first encounter Martin House. Julia said: “One thing I’ve learnt about Martin House is that it’s about helping families on their journey, however long that journey might be. It’s not just about those last days.

Happy Birthday, Alice! The first year of a child’s life can be a rollercoaster journey for parents – with many highs and lows along the way. Alice Wilkinson turned one in July this year, but for mum Julia the past 12 months have posed the additional challenge of coming to terms with Alice’s life-limiting illness. Shortly after birth, Alice was diagnosed with porencephaly, a rare neurological condition that causes epilepsy, developmental delay, muscle weakness and visual impairment. She was referred to Martin House by her neonatal consultant at only three months old and is now supported through respite stays and regular visits at home from the community team. Just a few weeks before Alice’s birthday, she

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Alice at just a few weeks old

was admitted to hospital in an attempt to control an episode of severe seizures. For Julia, each day with Alice is a blessing but also tiring and difficult at times as she negotiates the challenges of Alice’s condition She explains, “Alice’s care is relentless, and living on my own with her means that there is no one else at home to help with everyday things like changing a nappy or getting up in the night, or to give me a break when I need one. Although Alice is stable at the moment, tomorrow could be completely different. Everything can change in a split second so we just have to take one day at a time. “The hardest thing for me is Alice’s visual impairment. There are so many beautiful things in the world and it’s heartbreaking for me that she won’t see them. I quite often have to think outside the box in terms of her learning and development. Toys designed for Alice’s age

“At first, Alice’s referral left me feeling a bit taken aback. I thought, “But she’s not dying”. Then as soon as I walked through the doors at the hospice I understood why we had been referred. It suddenly all made sense. Whether I’m feeling up and down when I get to that front door, I know that we will be looked after.” “For me, the support at home is just as important as the hospice itself. A member of the community team visits us regularly, giving me the chance to take the dog for a walk and have some thinking time by myself. It really helps to clear my head so that I’m refreshed when I go back to Alice.” “Alice enjoys lots of cuddles so having the community team visit always brings a smile to her face. Now that she isn’t suffering so much with reflux, she is much happier on her back and enjoys her play gym. She has started to hit some of the things, mostly at random, but it’s wonderful to see her doing it herself. The team sometimes bring special toys that she can use, and this all helps with her development. “Martin House has been a lifeline for me. It helps me to be at 100% so that I can be there to help Alice. I know that things will be more challenging as Alice gets older and that we will have new barriers to overcome. But I also know that the hospice will be there with us on our journey, whatever the future holds.”

“For me, the support at home is just as important as the hospice itself. A member of the community team visits us regularly, giving me the chance to take the dog for a walk and have some thinking time by myself. It really helps to clear my head so that I’m refreshed when I go back to Alice.” Julia Wilkinson Alice’s Mum

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A Little Slice of Paradise Sally’s four-year-old son Danny was diagnosed with Mucopolysaccharidosis (also called Hunter Syndrome MPS Type II) in July 2015. Her blog, A Hunter’s Life, is her personal account of family life with this condition. Sally and her husband made their first visit to Martin House with Danny and their older son (Twiglet) in June. Here we share an extract from her subsequent blog post: I’ve been walking around since Monday morning like a swan with an elegant long neck rising effortlessly out from my shoulders. I had forgotten what feeling truly relaxed is like. The norm for me had become anxiety and stress, both emotional and physical – pushing the buggy, coercing a reluctant child up the stairs, carrying the heavy weight of an MPS diagnosis and all that it entails. So what has changed? The paradise on earth that is Martin House Children’s Hospice. When Pudding was first diagnosed, several people mentioned Martin House to me, but I pushed that idea away as fast and far as I could. To me, a hospice meant dying children and that was something I did not want to think about. Earlier this year though, I was finally ready to take that step and got in touch. It’s hard to describe what a special place it is. Sitting here I’m stuck for words. But I can close my eyes and see… Rabbits on the lawn. Jars full of cake. Paths that twist and turn through peaceful gardens. Communal tables set out for dinner. The patter of Pudding’s feet when he takes a break from TV to run to me for a cuddle.

A carer is allocated to each of the children to give parents a break from the constant monitoring of vital signs or medications. In our case, it was freedom from the need to be on constant high alert. It’s only when we got a break from that that I realised just how wearing it is. It was odd at first to let go. After all, it’s second nature for me to jump out of my chair to follow him when he runs. But for the whole weekend someone else was there to do that. They even sat with him at meal-times so we could eat our food without having to persuade him to eat or stop him from cramming too much in. So I sat in the sunshine and read a book, played with Twiglet and the other siblings, and chatted to other parents. I was so relaxed I barely took any pictures. It was a little slice of paradise. A weekend that meant more to us than I thought any holiday could. As we drove away on Monday morning back to normal life Twiglet asked, ‘When are we going back?’ As soon as possible please!

The Butterflfly and The Bird As part of our anniversary celebrations, this year we entered new territory for children’s hospices in commissioning a bespoke piece of inflatable artwork that encapsulates the essence of Martin House. The final piece was unveiled at the Yorkshire Sculpture Park in August and will appear at venues across the region over the next year.

conditions, whilst the bird represents the house martin – an enduring symbol of Martin House and our families’ freedom to return to this, their home from home, as often as they need to.”

In partnership with Yorkshire artist Sarah Jane Palmer and inflatable artwork specialists Spacecadets, based in Todmorden, the 3m high dome incorporates ideas from Martin House families and staff following a workshop at the hospice in June. In addition, Sarah Jane and our Community Fundraising team have worked with pupils from primary schools across West, North and East Yorkshire in creating a unique butterfly animation that can be projected both inside and alongside the main piece.

“We are enormously grateful to all who have been involved in the project to date. The inflatable will provide a powerful awareness-raising tool out in the community over the coming months, as well as a usable space for our children and families at the hospice.”

The full title of the project – The Butterfly and the Bird, The Fragile and The Free: Celebrating 30 years of hospice care for children and young people – takes its inspiration from the themes identified during Sarah Jane’s work with staff and families at the hospice, and both feature prominently in the final piece.

Adel Primary School, Leeds • Bramcote Junior School, Bramcote • Clifton Green Primary School, York • Eldwick Primary School, Bingley • Farnham Primary School, Bradford • Fieldhead Carr Primary School, Leeds • Grassington Primary School, Grassington • Oldfleet Primary School, Hull • Wigton Moor Primary School, Alwoodley

Community Fundraiser, Alison Wragg, explains: “The butterfly is a widely used symbol of the beautiful, but tragically short lives of children with life-limiting

A huge thank you to staff and pupils from:

You can follow Sally’s blog and read the full post at

You can find out more about the project and request an appearance at your venue at

www.hunterslife.co.uk

www.martinhouse.org.uk/butterflyandbird

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Martin House Autumn Newsletter 2017 11


Tim began his career as a dentist, working in general practice and community services before training as a Chartered Accountant. He has subsequently worked mainly in the NHS in a number of local and national finance and general management roles. In recent years, Tim has developed a particular interest in Citizen Driven

Trustees... What do they do?

The role of trustee is undertaken on a completely voluntary basis. Amongst their many duties, they must ensure that: • Martin House carries out its activities for the benefit of children and families • The charity complies with its governing document and the law • Resources are managed responsibly • The reputation and values of the organisation are safeguarded • All decisions protect the long-term future of Martin House

If you can help, contact our team on 01937 845045 or email volunteering@ martinhouse.org.uk. You can also find more opportunities at www.martinhouse.org.uk 12 Martin House Autumn Newsletter 2017

Health, which includes supporting people to take more control of their health and wellbeing using information and the latest technologies.

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Earlier this year, Tim Straughan joined our Board of Trustees. In this voluntary position, Tim will play a key role on the Finance and Resources Committee, ensuring that every penny you raise is spent wisely and for the benefit of our families.

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Tim said: “I am delighted to become a trustee of Martin House and hope to bring all my experience to assist this fantastic organisation to go from strength to strength. I am looking forward to meeting many families, staff and supporters over the coming weeks and months, and finding out more about the inspiring things our communities do for the benefit of children and families.” We wish Tim the very best in this exciting new venture and hope that he will enjoy attending some of the events coming up over the next few months.

Could You Lend a Hand? Ebay Volunteer

Our eBay account is us ed to sell particularly unique an d valuable items that are donated to us. The ideal volunteer will be came ra and computer savvy and be able to res earch more unusual items, liaising with local auctioneers as needed . You will be located in Boston Spa or Thorp Arch with flexible hours to su it.

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Retail on the Road

This summer, we were delighted to launch a new and unique project as part of the expansion of our retail operations. The Martin House pop-up shop will play a key role in increasing revenue from your donations, as well as raising awareness of hospice services in communities across West, North and East Yorkshire. The first strand of the project will involve taking a mobile shop out to regular markets in towns across the region, as well as being present at specific events or locations where we can theme the popup shop to suit. Of course, this will also mean that we are able to accept donations of stock, engage with members of the local community and raise awareness of Martin House and its services across our whole catchment area. The second strand of the project will see project manager Karen Shah develop a range of high quality crafted and upcycled goods for us to sell. We will be taking goods that have been donated but cannot be sold (either because they are

damaged, incomplete or unsaleable) and passing these to eager volunteers in the community who will give them a new lease of life. Materials otherwise destined for landfill will be transformed into new items including jewellery, clothing and furniture. As well as raising vital funds, we hope to build long term relationships with individuals and businesses across the region. We look forward to sharing updates on products and partnerships as the project develops and will have a stall at our annual Open Day at the hospice in October if you are interested in finding out more. You can also learn more about volunteering and donating stock at www.martinhouse.org.uk

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30th Anniversary Service In July, we held our celebratory service at Selby Abbey, with over 400 Martin House families, friends and supporters in attendance to mark 30 years of hospice care for children and young people in the region.

Milestones All Round! Martin House is not alone in reaching its thirtieth year. Four of our young people are also celebrating turning the big 3-0! Over the past three decades we have seen an increasing number of our young people live longer, more fulfilling lives, despite their initial diagnosis, and we have been privileged to work with so many on their journeys into adulthood. This has only been made possible because of your support. Sarah Walker has been supported by Martin House for 16 years and recently enjoyed a luxury thirtieth birthday tea with Care Team member Faith at Betty’s Harlow Carr. Sarah thoroughly enjoyed the trip out to one of her favourite destinations, and those in Whitby Lodge that day were lucky enough to share some of the tasty treats brought back from Harrogate. Reaching thirty is a milestone for any young person, but it is even more so for one living with a complex, life-limiting condition. This year we are addressing a similarly major milestone in services for young people with the development of a new service for 18-30 year olds, in partnership with St Leonard’s Hospice York. Dr Jan Aldridge, Consultant Clinical Psychologist at Martin House explains “The collaborative work with St Leonard’s is a wonderful opportunity for our teams to share experiences and improve services for young adults across the region. We are looking forward to working with our young people on developing this service.” Congratulations to all of our young adults turning 30 with us and thank you to everyone who has supported us over the past 30 years. Your ongoing support will ensure that more young people can reach their own milestones and live fulfilling lives. 14 Martin House Autumn Newsletter 2017

The service was designed to reflect the rich and diverse spirituality of Martin House, incorporating popular music, dance and images, as well as prayers reflecting the wisdom of different faith traditions. There was also a special procession by the children, young people and families involved in our Northern Ballet Projects. As part of the celebrations, those attending were invited to join in with the creation of a huge star of shared hopes and feelings about Martin House, which was raised at the beginning of the service. Speakers included children and young people supported by the hospice and we were also privileged to have the Bradford Academy School Choir supporting the event. Martin House chaplain Mark Clayton said: “Even though Martin House has outwardly changed since 1987, the original ethos remains intact. It was important that our families were placed at the centre of the abbey, as they have always been at the heart of everything we do. We are so grateful to all the children, young people and families that participated and hope that every person was able to take home something precious and truly Martin House.” Thank you to everyone who attended on the day and to all the staff, families and volunteers who helped to make the occasion one we will remember for many years to come.

One in four of our children and young people are cared for thanks to gifts left in wills. Your legacy could help us to provide our vital services for the next thirty years and beyond. Find out more at www.martinhouse.org.uk or contact our fundraising team on 01937 844569 for a confidential chat. Martin House Autumn Newsletter 2017 15


Martin House Children’s Hospice, 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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Autumn 2017 Newsletter  

Autumn 2017 Newsletter