• Millie Mae's story

    by Sophie Batchelor | May 30, 2019

    "Millie Mae was a sassy, tomboyish, six-year-old who knew her own mind. My mum always said that Millie Mae must have been here before because ‘she knew too much’. Millie Mae was diagnosed with a brain tumour in April 2014, which is when we first heard about Demelza through our support worker.

    We went to see the hospice in Eltham and were shown the Bereavement Suites, though I never thought we’d need to use them. We had made bookings for Millie Mae to stay at the hospice a few times, but sadly she was always too poorly to travel.

    Millie Mae never complained throughout her illness. She was such a brave, headstrong girl. She spent the last six weeks of her life in hospital surrounded by clinical things - machines, drips, nurses and noise. Millie Mae was taken to the suite the same day that she passed away. I didn’t think it would be possible to as she hadn’t been able to use Demelza’s other services – I had no idea that we could still have use of the rooms.

    Demelza helped make a hard time that little bit more special, just by allowing us those five days to be able to let go of Millie Mae a little more slowly. Family and friends could come and visit and we were able to have her favourite things around her – Millie Mae’s One Direction memorabilia, her teddies and her wrestlers.

    I appreciate that the Bereavement Suite may not be for everybody, but in my experience it made saying goodbye to Millie Mae an easier process than it would have been had she been at a funeral director. There’s no way I could have just left Millie Mae there at the hospital. I was able to get up when I needed to and go in and see her; to take the time I needed with her.

    Demelza has always been a massive support, it’s a special place to me. Whenever I go back it’s a bittersweet feeling, but I always feel comforted. I pop in to see the room again if I can, just to take two minutes in there or in the quiet room, to remember the last place Millie Mae was. It’s a shame the staff at Demelza never got to meet her when she was well.

    We’ve been to memorial days and the other events staff organise for bereaved families, and it helps us to meet other parents there. Sometimes you feel a bit crazy with some of the thoughts you are having, but you soon realise that you’re not alone as there are others who know exactly what you are going through.

    The Bereavement Suite is an amazing thing to have for families – it was a blessing to go there and for family to come and see Millie Mae. There should be more funding for places like this. I can honestly say I wouldn’t be here today without having the space and time Demelza gave us."

    By Millie Mae's mum, Emma.

    Help us to be there for more families by giving what you can to our Bereavement Suite Appeal at https://www.justgiving.com/campaign/bereavement

    Help us spread the word by signing up to our pack at demelza.pack.org - thank you!
  • Sam's story

    by Sophie Batchelor | May 25, 2019

    In the Spring of 2018 Sam was a healthy, happy teenager; attending college, playing an active part in his local Scouts group and helping his mum, Linda, with her party planning business by appearing as Spider-Man to entertain children.  It was at one of these parties when alarm bells started ringing for Linda.  There had already been a couple of incidences where Sam had experienced unusual pain in his hands and hadn’t been able to tie his shoelaces, but on this day, Linda had asked him to move some tables for her.  Half an hour later, she found Sam standing motionless next to one of the table with no idea where he was or what he was supposed to be doing.

    A trip to the GP followed by a barrage of hospital appointments, blood tests and scans, Sam was eventually, via stays at hospital in Margate, Canterbury and King’s College Hospital, London, admitted to the National Hospital for Neurology and Neurosurgery in Queen Square, London.

    On 9 August, following a biopsy, Sam was diagnosed with a rare form of brain cancer.  “Sam was fading away in front of me,” said Linda. “The last time I really spoke to Sam was on 11 August”. Sam suffered a massive seizure that day and the family were told his condition was terminal.

    Sam was moved to the Demelza Hospice in Sittingbourne on Bank Holiday Monday in August 2018 and died there on 2 September.

    Linda has nothing but praise for the support she received from the staff at Demelza and the bereavement facilities the charity offers:  “Being at Demelza was such a relief.  You don’t want your loved one to be taken away and put in the dark. The Bereavement Suite was amazing – it gave all of us the opportunity to take stock of what had happened, and we were able to say goodbye to Sam in our own time. It’s so, so worth it, to be able to say goodbye when it’s in your control.

    The nurses and carers were so thoughtful – they put a Spider-Man picture on Sam’s door and we could decorate the room just how we wanted to.  Sam’s nieces and nephew were able to draw him pictures and staff made their understanding of death so much easier.  Friends and family visited Sam and we had hand and footprints made, plus lots of other keepsakes. Everyone was so professional but at the same time so human, and one of the team even came to Sam’s funeral. 

    Every family in this situation should consider the Bereavement Suite, even if it’s just for one day. I can never repay Demelza for what they did for me and for my family, and especially for Sam.”

    As a charity, we cannot continue providing specialist care and support to babies, children, and young people like Sam and his family during end of life and through bereavement without the help of our kind supporters.

    To make a donation to our Bereavement Suite Appeal, visit: https://www.justgiving.com/campaign/bereavement

  • Lucy's story

    by Sophie Batchelor | May 24, 2019



    Lucy and her family stayed in the Bereavement Suite at Demelza South East London after she died.

    As a baby, Lucy was diagnosed with interstitial lung disease of an unknown cause. She was on oxygen from 9 months old and was unable to walk, so depended on a wheelchair to get around.

    In December 2013 Lucy’s condition deteriorated and she was moved from Great Ormond Street Hospital to Demelza Children’s Hospice in Eltham. Lucy remained at the hospice for four months before sadly passing away in her sleep in March 2014, aged 6.

    Lucy’s mum, Lynn, spoke to us about the care that the family received at the end of Lucy’s life.

    “Lucy’s room in the butterfly suite was the same as her bedroom downstairs – filled with fairy lights, toys and dolls. We wanted it to feel like her room. 

    We chose to have her favourite music playing so that the room wasn't so quiet and it felt like Lucy had company when we were away from her. We spent a lot of time with her and loved the fact that we could be with her day or night. It was such a difficult time and the emotions would hit us frequently and this flexibility of being able to visit her, talk to her and hold her as often as we wanted - and whenever we wanted - was invaluable. If Lucy had been in a traditional chapel of rest we wouldn't have had this opportunity.”

    The Bereavement Suites have a Quiet Room nearby; a comfortable and tranquil lounge which allows additional family members to visit, but also provides a space for families to make their funeral arrangements in private, but with their child still close.

    “It would have been a completely different experience for our family if we hadn’t had Demelza - they gave us the support we needed, when we needed it. It would have been harder to face everybody and everything at home. Our time with Lucy in the Bereavement Suite gave us the break that we needed to get our heads around everything.

    Coming home from Demelza a week after she died was hard. This time I came home from Demelza with an empty wheelchair. That was tough. Lucy loved her pink wheelchair. The physical signs of Lucy’s presence are gradually disappearing but even bigger than that is the emptiness. In the blink of an eye, I lost my child and I also lost everything that revolved around keeping her alive for six years.

    Without Demelza I wouldn’t be who I am today. I will always be grateful to them. Demelza kept Emily, my dad and me going and supported us as a family. They welcomed us to stay for another week and even helped arrange Lucy’s funeral.  The care Lucy and my family received from Demelza was outstanding - they supported us when we needed them the most. Demelza will always be a special place to our family.”

    You can help us to support more families like Lucy’s who need space, time and comfort when their child dies. Please give what you can to our Bereavement Suite Appeal. Visit www.justgiving.com/campaign/bereavement

     

  • Bereavement Suite Appeal launched to help grieving families

    by Sophie Batchelor | May 22, 2019

    Today, we launch our appeal to raise the £25,000 needed to refurbish the bereavement suites at our hospice in Eltham, South East London.

    Demelza provides specialist care and emotional support for children with terminal conditions and their loved ones, so they can enjoy their time together as a family for as long as they have. The bereavement suite has rooms where, before the funeral, families are able to stay close to their child after they have died.  Having this private space to say goodbye and spend time together as a family, is a crucial first step in the grieving process.

    The Eltham hospice marked its 10th anniversary this year and both bereavement suites are in desperate need of an update, having not been refurbished since the hospice opened in 2009.

    Ryan Campbell, Chief Executive at Demelza said “the recent report published by Hospice UK has highlighted the lack of funding for hospice care. At Demelza, we’re almost entirely dependent on the generosity of our supporters to provide 80% of the funds that keep our services going. Bereavement suites and support services are key to the grieving process for families and are a neglected area. Last year alone, the bereavement suites in our hospices were in use for over 80 days and this appeal is crucial to fund these vital improvements so that time spent in the suites with a child is as positive and supportive as it can be for families who find themselves in this unimaginable position”.

    Linda Thorne, whose son Sam died at the Sittingbourne hospice in September 2018, said, “The bereavement suite was amazing and the staff were so thoughtful, giving us time to say goodbye to Sam in our own time. We were able to personalise the room just how we wanted to. Sam’s nieces and nephew were able to draw him pictures and staff made their understanding of death so much easier. Friends and family visited Sam and we had hand and footprints made. Every family in this situation should consider the bereavement suite, even if it’s just for a day“.

    Backed by some of our Celebrity Ambassadors, including Jayne Torvill, Robin Cousins, Cheryl Baker, Sally Lindsay and Dave Berry, the appeal runs for a month until Sunday 23 June and marks the end of Children’s Hospice Week. To find out more about the appeal and to donate, please go to https://www.justgiving.com/campaign/bereavement

  • Six ways to support a grieving parent

    by Sophie Batchelor | May 19, 2019

    There are no words to describe how it feels to lose a child, and hard to find the ones to comfort those who have.  So how can friends, family, neighbours and co-workers support a mother, father or caregiver through this unimaginably difficult, sad time? For Dying Matters Week, we’ve prepared some insights and words of wisdom from bereaved parents to help others to understand and make it easier to have those conversations.

    1. Be an extra pair of hands

    Little things like doing some shopping, putting a load of washing on or hoovering the house can be enormously beneficial to a bereaved parent. Not only do they not have to worry about household chores, they also get your company. And while they may not feel like opening up, your presence can be comfort enough. Even if your offer is declined, the gesture will be appreciated more than ever.

     

    2. Don’t be afraid to talk about their child

    “I have four children, not three”, one mother has said. Though it may feel like you are reminding a parent of their grief, even saying their name aloud acknowledges that the child had a life and is still loved. The child’s presence will always be felt by their parents, long after a death. Remembering the individual they were and talking about them is a great way of keeping their memory alive. If the conversation turns to reminiscing, express what the child meant to you and what you loved most about them.

     

    3. Let them cry, and cry with them

    Crying is part of the healing process, whether in private or in public. If a parent wants to cry, let them. Comfort them with a simple cuddle and reassure them that they can express their emotions fully with you, without fear of judgement or feeling weak.

     

    4. Listen

    The most important thing you can do is to be present and available to the parents. Each parent will have a different way of approaching bereavement, but a simple message or a phone-call can make all the difference. Let parents show you pictures and talk about their child. Be a good listener. Don’t worry about filling gaps with words but try to avoid empty ‘comforts’ that can actually do more harm than good such as “I know just how you feel” or “you have your other child(ren) to keep you busy”.

     

    5. Be the person you have always been to them

    If the parent asks about you, talk about you, because sometimes your own life can be a welcome distraction from their sadness. Your loved one or friend who is grieving is still the same person they were before they experienced the death of their child, and you are still the person you were to them. Though their life has changed, your presence in it can anchor them to reality and remind them that good remains in their world.

     

    6. Remember that grief has no time-limit

    Grief never lets go or gets easier. A bereavement is not something to ‘get over’, but something that one simply learns to cope with one day at a time. Many bereaved parents and families have told us that the most difficult moments have come after a funeral, when everyone has gone home and life after death keeps ticking on. Many find anniversaries and birthdays especially hard, but they can also be positive occasions too – a chance to celebrate and remember the life of their son or daughter.

     

    Demelza’s support does not stop after a child or young person dies. We continue to provide practical and emotional support for the whole family. Our aim is to help families understand their loss and begin to face life, whilst remembering their child. We give them the time and space to make precious memories to treasure.

    This week, we’ll be launching our new Bereavement Suite Appeal to raise funds to make the time families spend together at the end of a child’s life the most precious it can be. Please follow our social media channels to hear more about our vital work and how you can help us be there for more families in future.

  • Local MPs visit Demelza South East London

    by Sophie Batchelor | May 03, 2019
    Demelza South East London recently hosted two visits from local MP’s whose constituencies are served by the hospice in Eltham. James Brokenshire MP and Clive Efford MP came to see the facilities and learn more about the care provided to families in the area.

    James Brokenshire and his wife, Cathrine, paid a visit to Demelza’s hospice in Eltham on Friday 26 April.  Mr Brokenshire, MP for Old Bexley and Sidcup, took a tour accompanied by Demelza’s Chief Executive, Ryan Campbell, and met with families and children who use the service.

    Mr Brokenshire, Secretary of State for Housing, Communities and Local Government, toured the care rooms, day room, therapy rooms and family bedrooms, as well as chatting with the Care team and support staff, as well as parents and children.

    Mr Brokenshire said “Thank you to the team at Demelza, Eltham for showing me around. I am so appreciative of the amazing work the care team do here 24 hours a day. The thought, kindness and compassion shown supporting children with terminal conditions and their families is humbling. To see the difference Demelza makes in the community underlined to me the real value of the incredible work Demelza does.”

    On Friday 3 May we also welcomed a visit from Clive Efford, MP for Eltham, Plumstead and Kidbrooke. Mr Efford met with Victoria, whose daughter Sophie attends the hospice situated in his home constituency.

    Ryan Campbell. Chief Executive said, “We are pleased to welcome both Mr Brokenshire and Mr Efford to the hospice and for giving us the opportunity to highlight the work we do here to support children with terminal conditions and their families right here in the community we share”.

     

  • Dulux donates to Demelza

    by Sophie Batchelor | May 02, 2019

    Dulux Trade Centres in Medway and Maidstone have offered to donate paint to Demelza Hospice Care for Children as part of their innovative Practical Support Project.

    The Practical Support Project aims, through a team of volunteers, to offer support for families by tackling those every day jobs, like ironing, walking the dog, cleaning, gardening, decorating and even helping with homework that are hard enough to keep on top of without adding in round-the-clock-care and hospital visits in to the mix.  The donation of paint will be an added bonus that can help support these families.

    Mary Goodger, Project Coordinator at Demelza, originally met with Richard Caplan and Steve Mellers MBE from Necessary Furniture and Community Repaint in Hersdon, near Canterbury who generously donated several litres of paint to the project.  Steve, who had taken part in a sponsored abseil over 20 years ago which provided funding for the original hospice building in Sittingbourne, very kindly put Mary in touch with Dulux trade centres in Medway and Maidstone.

    Mary said “a huge thank you to Steve and Richard from Necessary Furniture and Community Repaint for their donation of paint and introducing us to Lee Brookwell and Gareth Chick at the Dulux Decorator Centre in Rochester.  As a charity, we’re almost entirely dependent on the generosity of our supporters and we’re very excited to be working with Dulux on this project.”

    Lee Brookwell, Manager at the Dulux Decorator Centre in Rochester, said “We are delighted to be involved in Demelza’s Practical Support Project and looking forward to working with the team.  We are also hoping to talk to our regional managers about the possibility of providing decorating equipment for Demelza families in the future”.

    The donated paint will be used by Demelza families to decorate at home, as well as being used in Demelza’s retail outlets across the South East.

    If you are able to give some time to help support families in their own homes with some practical everyday jobs as part of the Practical Support Project, please contact Demelza’s Voluntary Services Department for further information on 01795 845170.

  • Work In Their Shoes with Sophie - Garden

    by Sophie Batchelor | Apr 30, 2019

    Hello! I’m Sophie, and I work in the Marketing Team at Demelza. My role is to share the wonderful goings on here, from children, families, volunteers, fundraisers and more. I find it a real privilege to get to know the people of #TeamDemelza, as everyone comes with a unique story.

    This year, inspired by our #NewYearNewYou campaign, I set myself a challenge to spend a day every month with one of the many teams that make up our organisation. Through a programme we have for staff called ‘Work in Their Shoes’, I’ll be showing you the many different facets it takes to make up Demelza as a whole, and recording it in a vlog.

    I had my heart set on working in a particular pair of shoes for the month of April – Spring had finally sprung (yet remains indecisive about its arrival), the sea of Daffodils had crashed upon the grassy banks of Demelza’s Sittingbourne hospice, and there had even been a few butterfly sightings. With my bright pink wellies, I marched down toward the rear of the building to meet Sam, Demelza’s gardener.

    If I had been in need of a sign that I would enjoy working in Sam’s shoes, it would have certainly been the packet of Jammie Dodgers (a.k.a. The Best Biscuits On The Planet) that Sam had brought for us. I’d asked Sam if I could spend the day with him early in the year and he’s watched all of my vlogs so far so I was really touched by the gesture – I have a fan! Sam has a few of his own fans around Demelza, as he pulls off a pair of red polka dot suspenders like no other.

    There are a whopping six acres of land to look after at Demelza Kent, which as you can imagine takes a lot of work to maintain and keep looking beautiful through the changing seasons. Sam depends on a team of volunteers who bring their own experience, passion and enthusiasm to nurture these special areas. I met a few regulars who often come in and blitz a huge patch at a time – something that makes a noticeable difference to Sam.

    The children, families and staff really do make use of the outdoor space, and it’s a delight to see the Care Assistants taking them out for a stroll to enjoy the sensory stimulation. It’s clear that a lot of thought has gone into how the space can be interacted with and enjoyed by any child with delightful sights, sounds, smells and grasses to touch.

    One of my first tasks of the day was to prune back a beautiful buddleia tree in the Garden of Tranquillity so that it could grow back renewed and strong. As we were clipping back to new growth, Sam and I began chatting about how we ended up working at Demelza, and the conversation turned almost serendipitously to end-of-life care and how being ‘on the inside’ of an organisation like ours gave us a closer look at the reality of a children’s hospice. We notice how comforting it can be for families through the most unimaginably difficult times. The gardens undoubtedly play a role in that. It gives families space, and it gives them nature.

    Sam kept me very busy with tasks all day like painting, weeding, feeding the Koi carp, planting sunflower seeds, deadheading wilted daffodils and even giving the playground a health and safety check. The highlights for me had to be driving a tractor (two speeds: tortoise and hare) and visiting the new area that had been cleared of debris and rubble to make room for some wild flora and fauna. Doesn’t a hedgehog hotel sound like the best place on Earth?

    What impressed me most from my day with our Sam was the care and dedication to thinking about the families – taking care of what needed maintaining, and thinking about the future. He explained that a gardener always has to think a few seasons ahead to make sure each and every plant is the best it can be. Sam’s commitment to quality really shows in his passion and is a value that I encounter time and time again at Demelza.

    I remember a very specific feeling I had during a quick coffee break in the afternoon (with Jammie Dodger, of course) and I noticed how clear my mind felt in the peace of the garden, grounded in the present with the fresh air and the birdsong. I thought to myself; "Sam might just have the best office out of all of us."

    If you want to check out my impressive tractor-driving skills and Sam’s jazzy suspenders, you can watch my vlog on Facebook and Instagram!

    Until next time,

    Sophie

     

  • Demelza family opens new shop in Petts Wood

    by Sophie Batchelor | Apr 26, 2019

    The 28th addition to Demelza's shop family was officially opened in Petts Wood today. The ribbon was cut this morning by Shannon and her son Royston, from Bromley.  Royston, aged four, attends Demelza Hospice in Eltham, South East London.

    The Petts Wood store is a family boutique with fashion for ladies, gents and children. It has a dedicated children’s area and disabled access and changing room.

    We have loads of designer gear on sale right now in all of our shops for tiny prices as well as summer and tropical themed recycled and new goods to give as gifts or to treat yourself or garden!

    Our charity shops are more than just shops for our charity. Through our up to date styling, our involvement in the life and activities of the communities we’re based in, and the discerning eye we take to shop dressing and stock, we aim to be at the forefront of keeping life and vibrancy on our high streets.

    And we’re saving the planet.  All by finding new homes for lovely things, and rehoming your lovely things.  Please do bring your clothes, ornaments, toys, books etc. to us so we can keep these precious items out of landfill.

    Of course we can only do all this because of volunteers. They are the life in our shops.  If you would like to join in, please give our volunteer team a call on 1795 845170 or email volunteering@demelza.org.uk - they would love to hear from you!

  • Spring clean, declutter and donate to Demelza!

    by Sophie Batchelor | Apr 11, 2019

    Why not take advantage of a spring clean by decluttering your home and donating any unwanted items to our new charity shop which is due to open in Petts Wood on Friday 26 April?

    The Demelza Hospice Care for Children shop will be at 22 Station Square, Petts Wood and will be open to accept donations from Monday 15 April with an official opening and ribbon cutting ceremony planned for Friday 26 April.

    We are asking householders to donate a whole host of items from clothing, lingerie, shoes and accessories to books, CDs, DVDs, toys and bric-a-brac as well as electrical items including old laptops or iPads.

    The only items that can’t be donated are very old TVs (they must be flat screen TVs), safety equipment such as crash helmets or child car seats and duvets and pillows.

    Donations can only be left at the shop from 15 April, at our donation station at our Sittingbourne hospice or at your nearest Demelza shop.  Find your nearest outlet here: https://www.demelza.org.uk/shop-with-us/local-shops

    We are always on the lookout for volunteers too. Tasks carried out by volunteers include working on the till, serving customers, sorting through donated stock, pricing stock and creating eye catching window displays. Volunteers must be aged over 16.  For further information on volunteering, go to https://www.demelza.org.uk/work-with-us/volunteering

  • "Mo can talk to Courtney about things he doesn’t feel he can say to us.”

    by Sophie Batchelor | Apr 10, 2019

    Nine-year-old Kaddeisha and her brother Mo, 11, have a special sibling bond that would make any parent beam with pride, and for their mum Laura, this couldn’t be more true. “Mo adores his sister and plays so nicely with her,” she said, “especially when he thinks no-one is looking.”

    What makes the Sarr family unique is that Kaddeisha wasn’t expected to survive birth, and has defied all odds to be here. “We first knew something was wrong during my pregnancy with Kaddeisha when multiple problems were found at my 20-week scan. We were advised to consider a termination at this stage as doctors told us our baby’s complications ‘were not compatible with life’", Laura recalled. "I told them I wanted to say hello before I said goodbye.”

    Laura and husband Dawda had prepared themselves to welcome baby Kaddeisha knowing that they would have to face losing her so soon. “I remember the note the midwife had made on my paperwork: ‘If born alive, Baby Sarr will live for a maximum of one hour’. After her birth, we were left alone with her and were told to call for a nurse when she died. I kept passing her around to family members because I didn’t want her to die in my arms. An hour passed, then another. She was still with us.”

    Kaddeisha continued to thrive, though doctors were unable to provide a clear diagnosis. Her chromosome abnormalities are unique, with no-one in Europe or the USA like her. After two weeks of checks and testing at different hospitals, her family were able to take Kaddeisha home to Maidstone – on her due date. It was the one thing Laura hadn’t prepared for: “I’d sold all the baby stuff I’d bought, and I’d only gone into hospital with one nappy.”

    The Sarr family were first introduced to Demelza around the time that Kaddeisha had her tracheostomy fitted after spending the first two years of her life in and out of intensive care. “It changed her life,” Laura explained, “She was struggling before; working hard, sweating. I didn’t want her to have the tracheostomy at first but once I saw the difference it made to Kaddeisha I wished I’d done it sooner. We could live as a normal family, we could go on holiday. We went to Africa to see her family.”

    Though Kaddeisha’s paediatrician had recommended that the Sarr family get in touch with Demelza to help with respite care, Laura and Dawda didn’t feel they needed those services as they were managing fairly well as a family. “I love being Kaddeisha’s mum, and looking after her. She’s always such a happy little girl and every day with her is a blessing. She and her dad are so close, she’s his little angel.”

    It is actually Mo, Kaddeisha’s brother, who now benefits from the charity’s unique services after the family learned more about Demelza’s Family Support services at a picnic event for families. After attending his first Siblings Group at Sittingbourne, Mo returned home saying, “Mum, they’re just like me!”

    Many siblings of children with complex needs may not often have the opportunity to go out and have fun with activities like laser tag or visiting an escape room, because their brother or sister can’t come along. Mo has relished the chance to have fun and socialise, telling us; “I love going to Siblings Group because I can make friends with people who know me more than others do. I can be myself.”

    Mo also receives more one-to-one help in the form of Family Support Worker, Courtney. Mo recently started secondary school and Courtney is helping the school to understand his situation and that, with a sister as unique as Kaddeisha, he needs extra support. “Family Support is a bridge between home and school," explained Courtney, "I’ll check in with the family from time to time and we’ll have catch ups to make sure things are okay and to see if they need help with anything.”

    Laura described how this benefits everyone, not just Mo: “Having that extra support takes some of the pressure off of us as a family. It’s just nice to know that someone is fighting your corner with you,” Dawda agreed: “For Mo to have someone he can trust outside the family with what he's going through is good for him. He doesn’t want to tell us when he’s sad because he doesn’t want to upset us. With Courtney he can stretch his heart out the way he wants to speak; he can talk to her about things he doesn’t feel he can say to us.”

    With thanks to the Sarr family.
  • Gravity Trampoline Parks jump to support Demelza’s children and families

    by Kate Barber | Apr 03, 2019

    Gravity Trampoline Parks has become a charity partner of Together for Short Lives, supporting local children’s hospices, including Demelza Hospice Care for Children.

    Gravity’s aim is to make a difference to the lives of children, raising money for the delivery of play therapy for the whole family and reaching out to isolated families that are in need of a family day out.

    Demelza will be twinned with Gravity Trampoline Parks in Bluewater and Maidstone, Kent.

    Lila Dowie, Head of Corporate Partnerships and Trusts at Demelza said: “Partnerships with generous companies like Gravity make a massive difference to the children and families at Demelza.  Gravity will help us raise the funds that keep our services going, as well as raising awareness of the need for children’s palliative care and what it actually means living with a child with a terminal condition. We will be able to give children and families time out at the fabulous Gravity parks in Bluewater and Maidstone to make lasting memories. We are so grateful and can’t wait to get started!”

  • Work In Their Shoes with Sophie - Demelza South East London

    by Sophie Batchelor | Mar 31, 2019

    Hello! I’m Sophie, and I work in the Marketing Team at Demelza. My role is to share the wonderful goings on here, from children, families, volunteers, fundraisers and more. I find it a real privilege to get to know the people of #TeamDemelza, as everyone comes with a unique story.

    This year, inspired by our #NewYearNewYou campaign, I set myself a challenge to spend a day every month with one of the many teams that make up our organisation. Through a programme we have for staff called ‘Work in Their Shoes’, I’ll be showing you the many different facets it takes to make up Demelza as a whole, and recording it in a vlog.

    March 2019 has been a special month for our South East London team as Demelza celebrated the 10th anniversary of the opening of our hospice in Eltham. For this month’s Work in Their Shoes day, it couldn’t have been spent anywhere more fitting than with the care team at Demelza South East London.

    The Eltham hospice offers much of the same facilities that can be found at Demelza’s first hospice in Sittingbourne, albeit in a much more compact setting. We often joke that the building has a TARDIS effect, as first-time visitors are often amazed by how much we’ve managed to fit into the space – especially thanks to the Space to Grow project; adding an extension in 2017 made possible with the generous support of Osborne.

    I pulled up on a Saturday morning in the subterranean visitors car park decked out with jolly farmyard murals and took the lift up to reception. I chatted with the lovely volunteer receptionist, Veera, for a few minutes before I headed to the nurses station in the heart of the building to catch up with the Lead Nurse on Duty, Mel, to find out what was in store for me. I was to spend the day working in the shoes of Debbie, a Palliative Care Assistant affectionately known as ‘Debbie Doo’. I was given a run-down of the children who were staying that weekend and the activities that were planned in for the afternoon.

    There is an unfortunate assumption that a hospice is a miserable, gloomy and sombre place. A fear often shared by parents who are referred by healthcare professionals to Demelza is that the very word hospice means the worst possible outcome; that a hospice will be a horrible, joyless place to take a child. I can vouch that you will find the complete opposite is the case, as it was when I made my way to the playroom to meet Debbie, only to find her Irish dancing in the middle of the room with fellow Care Assistant Emma. Music Therapist Victoria was holding a session themed for St Patrick’s Day. Thankfully the tunes were a little more authentic, and I watched as Victoria interacted with the children using her voice and instruments, which included a bodhrán drum.

    Lots of the children who use Demelza’s services are particularly fond of Victoria, as Music Therapy enables them to communicate and explore their feelings in different ways; particularly beneficial to those who are non-verbal. Once Victoria had sung her soothing goodbye song, Debbie introduced me to the children and the rest of the team.

    Mel and Aphra were the two nurses on duty for the day shift, supported by three Care Assistants: Vicky, Emma, and Debbie. Debbie’s ward was 14-year-old Rory, a young man who I soon learned had an intense appreciation for DVD’s and coleslaw, but appeared to dislike wearing socks. Rory, along with 15-year-old Bashir, enjoyed the interaction and activities carefully thought out by the team, but was happy to do his own thing, too. Debbie explained to me that though they may plan a few fun things in, they follow the lead of the child and whatever it is they are interested in doing. This will be different for each young person, so there’s always plenty of choices around to suit all levels of ability.

    We all headed for lunch in the dining room, where catering volunteer Luke had prepared some scrummy-looking meals for the boys. I really enjoyed the togetherness of staff and children, with the kids being helped first where needed. It’s no secret that we have an intense cake-loving culture here at Demelza, so it was particularly heart-warming to see the kids get in on the action too. Whereas Rory could feed himself, Bashir enjoyed his serving with the help of Emma and some custard – and his face said it all.

    After lunch, I helped Debbie lead on some multi-sensory storytelling. We took it in turns to read a story and take the accompanying elements to the children to interact with. I was unsure how the boys would react to me, a stranger, attempting to play with them, but led by the care team I felt completely at ease. I needn’t have been nervous, as Bashir happily let me gently lead his hand to feel rubbery spiders, and Rory was curious enough to look up from the train set to smell some ‘candyfloss’ during a funfair story.

    We then had a bit of free play as the care team took it in turns to cover each other’s breaks. Emma and I helped with potting some plants as Mother’s Day gifts in the playroom, and we marvelled at how much more soil was getting on Bashir than in the flowerpot. Luckily Rory happens to enjoy hoovering, so under careful supervision he was delighted to have an opportunity to help us clean up. When Debbie took her break, I kept Rory entertained at the computer with some interactive nursery rhymes, a game of soft darts, and by constructing a pretty impressive train track together replete with bridges and railroad switches.

    One by one, the kids were taken off for their baths. Each child stays in their own outer-space themed bedroom with a name like Moon or Rocket, which is equipped with a bed that is most appropriate for their needs and an adjoining bathroom/wet room. Debbie showed me how laundry is sorted for washing by the room for our housekeeping team – we take infection control very seriously at Demelza.

    After a bubble bath with his dinosaurs, Rory was ready to join everyone for dinner. Anyone walking in on our communal dinner would have heard lots of laughter, joking with the kids, and a gentle bit of banter with Luke about the density of his carrots. Doesn’t sound very much like the earlier picture we painted of a gloomy place to be, does it? I asked the Care Assistants what led them to their roles at Demelza, and each of them had taken a different path to get there. Debbie, for example, has a background in adult mental health care.

    While Mel handed over to the night shift team, I helped Debbie to update her notes for Rory, including what he’d eaten, how his demeanour had appeared to be on the day, and other care factors. I asked Debbie what the difference was between a Palliative Care Nurse and a Palliative Care Assistant. Debbie explained that while she had never held the aspiration to be a nurse, she is able to support ours by executing much of the same duties including administering a child’s medication and meeting many of their immediate care needs. The operative word in Debbie's title is 'care'; which is very fitting for someone who cares as much as she does. It seems obvious to me now, like the penny had finally dropped. It's easy for me to write about it but seeing it up close and noticing the positive impact it had on the children made it so real. 

    There were many highlights from my day that will stay with me for a long time, one of which happened as I sat with Bashir for a while to keep him company - just to be near him, really. He was dozing off after having a bottle of his favourite hot chocolate, expertly made for him just how he likes it. I had been told he was an affectionate young man, so I wasn’t surprised when he reached out for my arm and playfully clapped my hand for a few minutes, putting a smile on both our faces. It was when he pulled me in for his famous bear hug that Vicky said, “That’s it, you’re one of us now – welcome to the team!”, that I briefly entertained the idea of going back to school and switching careers. It was an absolute pleasure to spend a shift with the team, and when I popped back into the playroom to say goodbye to the kids, I was genuinely a bit sorry to be leaving.

    I recorded a vlog during my day in Debbie’s shoes – head over to our Facebook page to give it a watch! It features never before seen footage of Debbie’s dancing…

    Until next time,

    Sophie

  • Gallagher Group continue fundraising journey with Italian Job

    by Sophie Batchelor | Mar 23, 2019
    A team of fundraisers from Civil Engineering company Gallagher Group have pledged their ongoing support to Demelza by signing up to the European cycling challenge; The Italian Job. This will be the fourth sponsored challenge event the group of fundraisers have signed up to, having successfully completed Demelza 101 cycles from our Sittingbourne hospice to Paris in both 2014 and 2018, and to Amsterdam in 2016. To date, Gallagher have raised more than £45,000 to help fund Demelza's specialist care and emotional support.

    Gallagher Group employee and keen cyclist, Adrian Hollamby, says: "I am incredibly honoured and proud to be part of a Gallagher team taking part in this year’s cycling event The Italian Job. Having visited the Sittingbourne hospice and seeing and hearing first-hand the amazing work the Demelza Team does in supporting children, young adults and their families in the toughest of times is truly humbling. To provide the services and support they do with such passion and compassion is truly inspiring and Demelza Hospice care for Children is a cause Gallagher Group are incredibly proud to support and assist in any way we can.

    "I have been involved in other Demelza cycling adventures and, being part of the collective drive to complete these challenges to help Demelza continue to provide for the people that need them is fantastic. It’s amazing to see people push themselves to edge of their comfort zone and succeed, knowing that in doing so, they are raising valuable funds for Demelza. The knowledge that you are supporting Demelza provides you with the fuel to succeed and achieve things you didn’t think you could.

    "The Italian Job is definitely a bucket list event - cycling around the Italian lakes and up iconic climbs with stunning vistas - what a setting to challenge yourself in!"

    Demelza's Italian Job is a 3-day cycling challenge with breathtaking views of seven of the most stunning Italian lakes and Swiss mountain terrain. This ride is tailored specifically for a mixed cycling group where both trained novices and elites will each feel an incredible achievement on completion, plus an option to tackle the famous Madonna Climb.

    There is still time to join the team and get training in before we pedal off in September 2019! Find out more and sign up to this once-in-a-lifetime challenge at www.demelza.org.uk/italian-job
  • Fundraiser Beth shares her Apprenticeship story for #NAW2019

    by Sophie Batchelor | Mar 08, 2019

    Beth Murrell first joined #TeamDemelza through an apprenticeship with our Fundraising department, before earning her permanent role. For National Apprenticeship Week 2019, she kindly shared her story with us. 

    "University was not an option for me, so when I finished college I chose to go straight into work. After working abroad for six months and then working in England in a job I didn't really enjoy, I felt it was time for me to find a career. I was worried that being 20 years old with no higher education qualifications was going to set me back before I even began, so I decided to try looking for an apprenticeship.

    Finding the right role for me was tough, as I don't much like sitting still! I eventually found something that sounded ideal - an Events Administration Apprentice role at Demelza, which had the balance between office and off site working I was looking for, without the financial worry of tuition fees. 

    Undertaking an apprenticeship has allowed me to get into a job and gain experience in a professional environment along with a business administration qualification which will help me on any career path that I choose. Within my role I go to networking events, give talks to community organisations, and act as a local face of Demelza to our supporters. Working and learning at the same time is perfect for me as I gain experience and put everything I'm learning into practice.

    The assignments that I completed during the apprenticeship taught me so many new things about business administration that I didn't know before. Along with the business element of my course, I was also able to complete an IT module, which is a really useful skill.

    Personally, my biggest challenge during my apprenticeship was managing my time to complete the coursework, so I made sure to set aside time each week to stay on top of my assignments and get my work handed in on time.
     
    My role is now completely different to where I started 18 months ago. I work in the Community Fundraising team, spending more time away from the desk and out meeting local Demelza supporters.

    Thinking back to 18 months ago when I first started my apprenticeship, if anyone had told me I would be standing in front of packed school assembly halls and large groups of people to talk about Demelza, I would have run a mile! Now, having completed my apprenticeship and additional training, I feel confident enough to stand up and speak in front of a group.

    I would absolutely encourage other young people to try pursuing an apprenticeship, especially anyone who feels uncertain about which path to take, like I once did."

    Beth Murrell, Assistant Community Fundraiser

  • Work In Their Shoes with Sophie - Family Support

    by Sophie Batchelor | Feb 28, 2019

    Hello! I’m Sophie, and I work in the Marketing Team at Demelza. My role is to share the wonderful goings on here, from children, families, volunteers, fundraisers and more. I find it a real privilege to get to know the people of #TeamDemelza, as everyone comes with a unique story.

    This year, inspired by our #NewYearNewYou campaign, I set myself a challenge to spend a day every month with one of the many teams that make up our organisation. Through a programme we have for staff called ‘Work in Their Shoes’, I’ll be showing you the many different facets it takes to make up Demelza as a whole, and recording it in a vlog.

    For the month of February, I spent my day working in the Dr Martens of Courtney, a Family Support Worker based at Demelza’s Kent hospice. The words Family Support may seem like a pretty broad umbrella term, as supporting families is the very essence of what Demelza does ‘on the tin’. My day with Courtney showed me that the purpose of her team is not so easy to describe in simple terms.

    We agreed to meet just after 8am so we could head out to visit a family at home. Courtney does a lot of work with siblings, who often find it difficult to process the complicated emotions that come with having a brother or sister who has complex needs. It’s not just about the demands for the focus and attention of parents or carers – there’s often guilt, fear and anxiety in the mix too, which is not an easy thing to bear as a young person navigating ordinary growing pains.

    I met nine-year-old Kaddesha, her brother Mo, 11, and their mum Laura. We talked for more than an hour about their story and how Demelza fits into their lives, in the form of Courtney. Mo recently started secondary school and Courtney’s support is helping the school to understand his situation and that as a sibling, he needs extra support. "It’s just nice to know that someone is fighting your corner with you,” Laura said. Dad Dawda joined us later and shared the same sentiment, telling me: “Mo can talk to Courtney about things he doesn’t feel he can say to us.”

    Laura awarded Courtney the highest compliment in her book, describing her as ‘real’. Speaking as a mother, Laura confessed that she doesn’t really like a lot of people, and is protective of her family. I got the impression that having a consistent presence in their lives that they feel they can trust to talk to – and that Mo can open up to – is a true comfort. When we said our goodbyes, I was beyond touched to receive the seal of approval from mum, whose parting words were: “I like you; you’re real.”

    When we left to drive to our next stop, Courtney explained the breadth of her role and the level of involvement with families. Firstly, she is not to be confused with a counsellor, as Family Support offer a different kind of emotional support in the form of listening sessions. Whilst one could argue that the empathy and warmth Courtney brings to her day job could almost be a form of therapy by itself, her objectives are to help give families gentle nudges in the right direction. “My job isn’t to do everything for families,” she mused, “it’s to help give them the confidence and resilience to do it for themselves.”

    Secondly, it became very clear why Family Support is a tricky one to sum up concisely: no two families are the same. Even when faced with a similar situation their stories are completely different each and every time, which demands a unique and personal approach, each and every time. After sharing a lunch of egg sandwiches, a pot of tea and a slice of chocolate cake, I realised I had much more in common with Courtney than a food order (and a shoe size). It’s fair to say that if you work for a cause like Demelza, you’ve probably heard something like “I don’t know how you do it,” or ”that must be so hard”. When you spend your days supporting vulnerable people, it’s important that you get support too.

    Whilst I feel beyond privileged to be in a position to talk intimately with families who receive support from Demelza, the Family Support team are, unsurprisingly, the ones who are often by their side during the most crucial and difficult moments. We had a wonderful discussion about the importance of self-care and looking after your mental health in the workplace. Turns out tea and cake really can fix a lot of things.

    Back at the Kent hospice, we met with another family in the TIZ room. Mum Jude brought daughters Aimee, 12 and Willow, who is six, to catch up with Courtney. It’s their elder brother Jamie, 16, who lives with a complex condition, but the impact is felt by everyone in the family.

    We talked about their needs as siblings, and like Mo, they value having Courtney’s assistance with school matters. The girls also make use of sibling groups and enjoy Art Therapy. Aimee in particular finds comfort and kinship in making friends ‘who get it’, and when life is tough, Courtney’s there. Aimee said, “If you’re having problems at school, it’s someone else to talk to.” When the conversation turned to future career goals, Jude told us that Aimee wants to be a medic someday. When pressed for comment, Willow divulged that she aspired to play hide and seek for a living.

    Wrapping up the day in the office, Courtney caught up with her paperwork whilst I seized the chance to learn more from her colleague, Zoe. Whilst on the surface it may seem to some that it’s all cups of tea and chit-chat, the work that goes into delivering that personal support for each family is truly phenomenal – and very, very carefully planned out.

    Zoe explained the journey of support the team provide from the first time they meet a family to assess their needs, and how they determine how to help them - whether that’s through advocacy work, signposting or bereavement support – always reassuring families that Demelza is more than the word ‘hospice’. The team are well-versed in looking at the bigger picture. “We work with families on building their resilience, confidence and self-esteem up to deal with difficult or crisis situations,” Zoe told me, “even if that is just calling to ask for help.”

    The teams utilise their professional networks to provide the best-rounded support they can, and this can go beyond schools to housing and other service providers and charities.

    I couldn’t let Courtney leave without a parting gift – my signature biscuit and highest accolade; the Jammie Dodger. I learned so much from my day with her and, not unlike the families who hold her in such high esteem, I feel like I’ve made a firm friend.

    I recorded a vlog during my day in Courtney’s shoes – head over to Facebook and give it a watch! It features an exclusive interview conducted by six-year-old Willow…

    Until next time,
    Sophie

     
  • EastEnders Actor Harry Reid pledges his support during visit to Demelza Hospice

    by Kate Barber | Feb 19, 2019

    Actor Harry Reid, best known for his role as Ben Mitchell in EastEnders, visited our Kent hospice earlier this month and met with families, staff and volunteers.

    Harry, who recently starred as Dandini in the Marlow theatre’s production of Cinderella in Canterbury, alongside Demelza’s VIP Supporter, Sally Lindsay, was given a guided tour of the hospice not only by staff but also by Jack who’s older sister, Chloe, is currently staying at the hospice.

    Harry said "I have been privileged to visit several hospices before, and having a mum who works in the field has given me an insight into how necessary they are for their local communities. Children's hospices in particular make a huge effort to make their environment as welcoming, friendly, colourful and fun as possible, but Demelza goes above that.  I was shown their room for soft play, a cinema, a swimming pool, a sensory room - they've even got a pirate ship - it has everything! I was blown away by the attention to detail, and the facilities for families to stay in are so beautifully thought out.”

    Harry, who also gave a reading at our carol concert at Canterbury Cathedral last December, has vowed to lend his support to Demelza.

    Harry said "I walked out of the building feeling so proud to have met the people who make the hospice what it is. I feel proud to know that there is so much good in the world; so many people willing to help - I can promise the families of Demelza and all associated with this charity that I will help too. Here's to the future of Demelza!"

  • Juergen Teller unveils photographs of Demelza Children's Hospice for New Exhibition

    by Mellissa Cox | Feb 12, 2019
    Demelza invited Teller to visit our hospices in Sittingbourne and Eltham to document the crucial, life-enhancing work we do with local babies, children and young people who have terminal conditions and are in need of support. 

    Teller made multiple trips to the hospices and dedicated much of his personal time to getting to know the children and their families, sometimes visiting them at their homes if they were unable to travel. Initially taking his professional SLR camera, Teller quickly swapped to his less-intrusive mobile phone so that he could integrate himself into the hospices as sensitively as possible. 

    Juergen Teller says of Demelza Kids: “I approached this project as I do with any other: the same respect, directness and honesty – how I truly felt it should be done – the way I might photograph a portrait of a friend, a celebrity, a landscape scene or my own children. I photographed the children as honestly as I could without shying away from the brutal truth of what I was confronting.”

    “What struck me most was the overwhelmingly warm response from the parents and how thankful they were. To see and feel the parents’ pure love, patience, care and the challenges they face was the most amazing and touching experience. Working with Demelza has moved me deeply.”

    Ryan Campbell CBE, Chief Executive of Demelza, says: “Demelza provides hospice care for children with terminal conditions, but there is so much more involved with what we do than those words convey – our work is about life, not death. The images in Demelza Kids convey it much better. There is more joy, laughter and fun than there is sadness. Children are children; the children we have the privilege to work with are amazing and inspiring, and that is why we have partnered with Juergen Teller. These families want to be seen, not hidden away and pitied.”

    Juergen will be exhibiting his work to raise awareness for the specialist care and emotional support Demelza provides for hundreds of children with terminal conditions and their families.

    Ralph Taylor, Bonhams’ Global Head of Post-War and Contemporary Art, has said of the exhibition: “Juergen Teller is one of the most influential and relevant photographers today. It is an honour to have his new work on show at Bonhams, especially as it highlights the work of such an extraordinary charity. These are images that will long live on in the mind.”

    Demelza Kids by Juergen Teller will be on display at Bonhams, New Bond Street, Private opening of the exhibition by invitation, Tuesday 9th April.

    Public viewing, Wednesday 10th - Monday 15th April (closed on Saturday) 9.00-5.30. Please check Bonhams website for Sunday opening times.

    For more information, please visit: www.demelza.org.uk/juergen-teller or www.bonhams.com/juergenteller
  • Adventures abound for teenagers at weekend social

    by Sophie Batchelor | Feb 07, 2019
    Demelza's Kent Hospice was host to rollercoasters, tarantulas and the Wild West during a recent TIZ weekend.

    The Family Support and Kent teams hosted a weekend full of fun activities for teens aged 14 and above, along with their families in the dedicated 'TIZ' (Teenage Inclusion Zone) space.

    The young adults enjoyed takeaway night with pizza and burgers and a visit from Creepy Claws Animal Displays, who brought a Tarantula, African Pygmy Hedgehog, Giant Centipede and snakes along for the guests to hold and interact with.

    Layla, who attended the weekend, said: "The animals were amazing and we learned so much from Creepy Claws, who taught us loads about them and answered all our questions."

    The group also adventured and explored through a Virtual Reality headset, simulating exploration in an underwater submarine, flying an aeroplane or riding a rollercoaster, thanks to TJs Virtual Reality World, who also donated some headsets to the hospice for young people and siblings to enjoy.

    The weekend wrapped up with a Wild West themed murder mystery evening, with family members and staff playing characters for added theatre in the 'Whodunnit' fun.

    One teen told us "It's nice getting to spend a weekend with other people my age going through the same experiences as me."
  • Demelza staff share their memories for Story Telling Week

    by Sophie Batchelor | Feb 02, 2019

    For #NationalStoryTellingWeek, we asked staff members to share their favourite experiences from their time working here at Demelza. Read three special memories below...

    "In my first week at Demelza I met a newly admitted child the same age as my own. He was slumped in his highchair and had spent his entire life in hospital. I couldn’t help but think about the experiences my own child had had: playing in a park; swimming; going to children’s parties and making little friends, and compare this to his experience of spending two years in hospital. I wasn’t sure I could work somewhere like this…

    But each time I saw this child, there was a change. When he came to Demelza the care team took him swimming in our hydro-pool, they took him horse riding, and even ice-skating! They helped him move about more, and before long he was charging about the place, dragging his oxygen supply behind him!

    He got to play outside in the playground, to go to parties and to do the things other children his age were doing. After seeing the incredible difference staff at Demelza can make, now I’m not sure I could ever leave."

    - E

    "One moment I'll always remember was meeting a particular mother at Demelza's Eltham hospice for the Parent & Carer forum. The group was fairly small but crucial to the parents who were attending as a way to connect with other families who were struggling with similar issues such as finding school places, or getting around London with a child who had complex care needs.

    I found out that not only was it this mum's first time attending the group, but the very first time she had opened up with anyone about her child's condition. She was understandably a little shy at first but once she realised that she was surrounded by other mums who understood exactly what life was like for her, she relaxed and started opening up amongst her new friends. When I left she was deep in conversation with a smile on her face and I knew she'd be back for the next one."

    - S


    "My favourite moment from my twenty years here at Demelza was being able to help a little girl with no muscle tone who was nonverbal but desperately wanted to ride a pony. After working out the necessary risk assessments and insurance bills, my pony, Lacy, arrived ready to oblige. 

    The little girl was transformed and animated beyond recognition.  We struggled to get her off the pony in the end. Her mum cried as she had always wanted to do it but couldn’t find anyone to make it happen. My two daughters who were present still reflect on that moment today, and so do I - some things stay with you. The memories we can create for families can never be underestimated.

    -L


    We hope you enjoyed these reflections from staff. It is only with your help that we are able to keep making moments like these for the families who need them. There are many ways you can lend your support to children with terminal conditions and their families