• 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,


  • 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,

  • 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.


    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

  • A cheeky smile that touched hearts

    by Mellissa Cox | Feb 01, 2019
    Elektra-May had only a short life, but it was a full and vital one. Despite having to deal with their daughter’s serious medical conditions, parents Bonnie and Jonathan were determined to have fun as a family – so even though they lost Elektra three months shy of her third birthday, they have a treasure trove of precious memories.
    Bonnie’s pregnancy was normal, but following a difficult labour and delivery Elektra stopped breathing for 20 minutes before being resuscitated. She was transferred to the special care baby unit at the Royal Sussex County hospital in Brighton for cooling therapy, which improves the chances of survival and limits brain damage in newborns starved of oxygen by reducing their body temperature for several days.

    Doctors were concerned that Elektra would not be able to cope without life support but, showing her fighting spirit, she did so well she was transferred back to hospital in her home town of Hastings within a few days. 
    Shortly after Elektra’s birth, the family was referred to Demelza Community, our hospice at home service in East Sussex. “Demelza was life support for us,” says Bonnie.
    Our Demelza care team was on hand when the baby girl came home at five weeks, and the family also received homecare support from the local authority. Diagnosed with severe epilepsy, dystonia – which causes uncontrolled, often painful muscle spasms – and an underlying genetic condition, Elektra’s needs were exhausting but, wherever possible, normal family life went on.
    “We went on trips to London, to Brighton Pier and the Sealife Centre – the smile on her face said it all,” recalls Bonnie. Not having a car meant getting to our residential Kent hospice was difficult, so Palliative Care Nurse Advisor Jane Streeter drove Elektra there for respite breaks, and took the couple for a visit too.
    “Poor Jane – Elektra loved being on a train or the bus but she hated cars and she’d scream the whole way there and back!” laughs Bonnie. “She loved it when she was there though – the hydrotherapy pool and sensory room especially.”
    As for every young family, Christmas was an extra special time, and Demelza was on hand to create magical memories. At her first Christmas Elektra helped light the candle at Demelza’s carol concert in Eastbourne, and they always came along to our festive party for families receiving care and support.
    At the party in 2017, special guests included characters from the Disney animated film Frozen. A huge fan, Elektra was delighted. But by then her health was failing, and when she fell victim to a particularly severe seasonal flu outbreak there was no more fighting back. She spent Christmas in hospital, and died on 27 December.
    Our care team were by the family’s side, and Bonnie and Jonathan were also touched by the support given by the many members of the Conquest Hospital staff who had got to know Elektra.
    Demelza helped with the funeral arrangements and arranged bereavement counselling for the couple, who now live in Eastbourne, and will stay in touch for as long as they need. As they grieve for their daughter, Bonnie says: “It helps knowing how well-loved she was. Elektra was unique – a cheeky monkey who didn’t follow the rule book. She shouldn’t have made it to her first Christmas or first birthday but she continually surprised everyone.”
    * As a charity, Demelza Hospice Care for Children is almost entirely dependent on the generosity of our supporters to provide the funds that keep our services going. Please help us make sure every family and child can depend on us when they need us.
  • Work In Their Shoes with Sophie - Rochester Boutique

    by Sophie Batchelor | Jan 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.

    My first target had to be Shop Manager Gemma and her lovely team at our Rochester Boutique, a hotspot for vintage lovers and a favourite of locals in the high street. Gemma was equally as excited to have me spend the day mucking in.

    I arrived on a very chilly January Thursday to meet Gemma and Assistant Manager Debbie, and was delighted to find we were all wearing our Dr Martens, which I hadn’t realised was the unofficial team uniform. After a breakfast of champions – a cup of tea and a Jammie Dodger - I was shown around downstairs in the basement sorting room, which I prefer to think of as an ‘Aladdin’s Cave’. Anyone who’s ever experienced life ‘behind the curtain’ at a charity shop will know what I’m talking about – the overwhelming urge to have a nose through the myriad treasures and the mystery of what might be uncovered.

    After being given an overview of the sorting process, my curiosity was put to good use by going through a delivery which had just arrived from our Distribution Centre at Maidstone. This central hub is responsible for sorting through and allocating donated stock to our 26 Demelza shops throughout Kent, South East London and East Sussex. A lot of thought goes into this, as each shop is unique – like the book shops in Hythe and Herne Bay, our children and baby shop in Sheerness, or the bridalwear department in Canterbury.

    Sorters at the Distribution Centre will earmark items they know will sell best at certain locations, because when they have a reputation for specialising in something, people come looking for it. I loved hearing that our shops look out for each other too, by sending items they know will get the best bang for their buck in other branches, raising more money for Demelza’s services. There’s plenty that comes in through the door as well as from our own distribution network, with locals popping in bearing bagfuls of items throughout the day.

    Gemma and I settled into unpacking 15 sacks that were dropped off by Demelza van driver Alan, including a rather thrilling one sent from Michelle at our Eltham shop. I say thrilling with complete sincerity, because I uncovered some beautifully pristine vintage garments that were perfect for the Rochester Boutique. With our mutual love for fabulous fashion from bygone eras, it was lovely to bond with Gemma over finding a rare label (anyone remember ‘Yessica’ by C&A?), or by imagining the kind of person who would have worn an immaculate houndstooth power suit. Rochester only stock the ‘best of the best’, which may seem a bit snobbish, but once you’ve taken a look inside, you’ll understand why.

    Gemma has put her menswear right at the front of the shop, which is a risky move – one that has been paying dividends. This is known as the ‘golden area’ where you put your big guns to draw people in. The trouble with a lot of charity shops is that quality menswear and accessories are scarce, meaning a lot of chaps don’t bother coming in to look. This isn’t the case here, because Gemma’s customers know that she has her finger on the pulse, and you’re guaranteed to find something that’s your cup of tea. In a trendy town full of students and tourists, the shop is a hive of activity all day long.

    There are regular customers, and some real characters – a compliment which extends to the volunteers. Joy and Julie – who absolutely, definitely, always come as a pair - cracked on with sorting and steaming. Bianca has an extremely high threshold for what is good enough to go out on the shop floor. She’s an artist, whose mesmerising mosaic work is featured in one of the beautiful windows. Pat charms the customers at the till with her friendly manner – the kind of person who gets on famously with everyone. I loved hearing them all talk about the time they spend at the shop with genuine fondness and passion.

    I was tasked with pricing an item I’d ever-so-slightly fallen madly in love with – a stunning silk beaded statement jacket in my favourite colour, emerald green. The guys at Rochester know a gem when they see one, and using the shop’s tablet, I scoured eBay and Etsy for some similar items to benchmark a realistic asking price. This was a pretty special one, so I spitballed an educated guess of £60, to nods of approval. Debbie and Gemma were confident it would sell by the weekend and it was hung front and centre of the window display on a wardrobe. Gemma and the team have been doing really well with profits, and it’s unsurprising. I was delighted to learn that they’re about to hit their target for takings two months early.

    Upstairs on the shop floor, I ‘culled’ a few items with Gemma. This means taking items down that have been on the shop floor for quite a while or aren’t the usual standard you’d expect from the Boutique, with Gemma’s criteria being ‘anything beige and boring’! It won’t go to waste though, it’ll be redistributed or sent for recycling or ‘ragging’, meaning it will be bought by weight and sent to impoverished communities in third-world countries or the textiles will be repurposed into something else. Culling also makes room on the rails for more of the pieces that will get snapped up quickly – replenishing the rails is a continuous task.

    One thing that truly amazed me was the effort that went into reducing the amount of waste that was produced – not just by Gemma and her team, but across all our trading outlets. There were so many kinds of recycling compartments that Rochester have reduced their waste output to the equivalent of one small carrier bag a day – pretty impressive once you’ve seen the sheer volume of things coming in.

    I wholeheartedly loved my day. I got to choose a CD to play (The Specials), look at beautiful things all day long, and learn more about Gemma and her (quite frankly) incredible shoes. I went home with a pair of black velvet trousers that were the exact length for my little legs, and Gemma and I set off for home.

    When I happened to return to Rochester on the Saturday, my favourite green jacket had gone. I hope it went to a good home where someone will treasure it with as much care as its previous owner, and though I’m sad it’s not my home, I know that the £60 it brought in could pay for a Music or Art Therapy session, or provide meals for families at Demelza.

    I recorded a vlog during my day in Gemma’s shoes – head over to Demelza's Facebook page and give it a watch! You might spot a certain green jacket…


    Until next time,


  • Meet Mirelle, Eltham's new Care Service Lead

    by Sophie Batchelor | Jan 18, 2019
    It's our pleasure to introduce you to Mirelle Cassidy, who's just joined #TeamDemelza as our Care Service Lead in South East London. What does that mean? She'll be helping to shape the future of the care and support that we provide to children and families in the area. Learn more about Mirelle in her own words.

    "I feel very privileged to have been afforded this opportunity to work with Demelza Hospice Care for Children, and over the coming weeks and months I very much look forward to getting to know everyone within the Demelza Community both internally and externally.

    To give you a little bit of background I am a paediatric nurse with over 20 years of experience. I trained at Great Ormond Street Hospital and spent the early years of my career working there on the haematology/oncology unit before moving to the Peadiatric Intenstive Care Unit. In 2009 I left GOSH and the NHS to take up the post as a nurse co-ordinator for a private provider delivering care to children and young people with complex health needs and life limiting conditions within the family home and the wider community; it is this role that has lead me to where I find myself today. 

    Over the last 10 years I have had the good fortune to work in a variety of roles that have all centred around complex health care including both direct clinical care and managerial roles.  Most latterly my focus has been on the review and re-structuring of children and young people’s continuing care services in various clinical commissioning groups.

    I first became aware of Demelza 16 years ago when I moved to the South East London around the time of the fundraising drive to raise money for the hopsice facilities in Eltham, and I cannot believe that it is now 10 years since the doors were officially opened. Professionally, I have cared for children and young people that have benefited from the incredible service that Demelza provides and often thought how much I would like to be a part of such a fantastic team. When the opportunity arose to apply for the Care Service Lead I jumped on it!

    I know only too well the difference that services such as Demelza make to the families and children we care for. My fundamental drive is to ensure exemplary service delivery, whichever role I am undertaking, but to have fun and laughter along the way.  I am passionate about teamwork and all services that a child accesses providing a joined up approach to their overall care, it really does make such a difference to the lives of the families and children we care for.

    When not at work I am a busy mum of four children (three girls and a boy), a dog and a cat. When I'm not busy playing taxi of mum, walking the dog or doing the housework, I will more often than not be found near a rugby pitch - supporting, not playing!"
  • 2019 Events Diary - out now!

    by Mellissa Cox | Jan 10, 2019
    I am very excited about our portfolio of events for the year ahead. We have worked hard to pull together new opportunities and try to ensure that we have something to offer for everyone. 

    2019 will be one of our biggest years yet, as we cycle around stunning Italian Lakes and into Switzerland, trek along one of the greatest historic sights and the longest wall in the world - The Great Wall Of China, run around some of the most prestigious running routes in the UK, or even walk upon the wing of a plane whilst 500ft in the air.

    I hope that you’ll find something in this booklet that interests you, to challenge yourself to not only accomplish something remarkable but also raise money for children affected by terminal illnesses and their families.

    To request your free hard copy of the events diary by post, please click here.

    We look forward to you joining #TeamDemelza.

    Hayley Richardson
    Head of Community and Events

  • Notes on the NHS Long Term Plan: What it is actually for, and what we should do with it

    by Ryan Campbell CBE | Jan 09, 2019
    Following their recent announcement of plans to allocate more funding to children’s hospices (more here), NHS England have published their Long Term Plan in which it states that children’s palliative and end of life care is “an important priority for the NHS”.  Demelza’s Chief Executive Ryan Campbell CBE has taken some time to digest the plan in full, and has prepared some thoughts about what it really means for organisations like ours.

    1. It’s not a 10 year Plan

      There is no such thing as a 10 year Plan, because no-one knows what will be happening in 10 years’ time.  What this is, is a statement of intended direction for the next 10 years.

      That is a different thing and the distinction is significant.  This is not a blueprint that people will still be reading in 10 years’ time, or eight, or probably even three years.  All the important decisions will happen (or not) in the next two years, although the impact of those may still be felt in 10 years’ time. 

      It means we have a two-year timescale to generate tangible action in this long-term direction or it will fail.  So we need to get moving.

    2. It’s hard to do anything but welcome the report

      Demelza has welcomed the mention of children’s palliative care and increased funding, and every interest group has welcomed their own little bit, basically because this is a document that mentions most areas of healthcare and says it will improve each one.  But some of what is promised isn’t even possible yet.  We need to work on, perhaps fight for, the actual Plans, to ensure those improvements are delivered.

    3. Modernising infrastructure is a given

      The Plan is specific on some technology improvements to NHS infrastructure.  But in a 10 year timescale something like that should really happen anyway.  It’s certainly not a bad thing, but it’s not a revolution.

    4. Children’s palliative care

      We welcome the statement that children’s palliative care will be a priority (see Point 2. above).

      The Plan says that there will be an increase in funding to make up for historic underinvestment.  We welcome that statement as well.  It even mentions a figure: £25m total annual funding, linked to local NHS spending, rising from the current children’s hospice grant of £11m.

      In an ideal world this could be brilliant.  Local NHS bodies, NHS England, children’s hospices and everyone else will get together, look at implementing all the stuff in the 2016 NICE Guidance which isn’t in place, get some funding from NHS England to supplement the local budgets, and children’s hospices will get a greater amount of funding than they do now for providing essential healthcare services to the highest quality.

      But that’s a complicated amount of aligning of interests to do.  If it goes wrong the money could be misspent and hospices could end up with less than they get now.

      I don’t think that will happen.  The vision is worth going for.  Demelza will go for it, and I think NHS England are pretty committed to it too.  But there are big risks here and a lot of work to be done.  As a starting pledge, it’s a good one.

    5. Workforce
      Everyone agrees that the measures proposed so far will not be sufficient to meet workforce requirements in the future.

      However, there’s a slightly hidden bit in the Plan which is very ‘techy’ and not obviously connected to workforce, but which I think could have an extraordinarily positive impact.

      NHS England are asking for the Health and Social Care Act of 2012 to be amended so that care services with a value of more than £615k do not have to be regularly retendered.

      Very dull I know, unless you’ve worked in those services, which I and thousands of other healthcare workers have done.

      What happens now is that healthcare services go up for tender usually every three to five  years, and often change provider, because people who make decisions that don’t affect them like to change things.  That means that the workforce is ‘transferred’ each time, to new employers, structures and new models.  These models are sometimes unsuitable because the new provider hasn’t been allowed to talk to the people providing the service about what should be provided.  Employment terms and conditions, including salary, are protected, but you are not protected from redundancy, and there always are some. 

      As a care professional, you get that every few years.  You obviously do not develop any connection to your employer, because you haven’t chosen to work for them, and what’s the point, you’ll be transferred again next time round?  You may have thought you were joining the NHS, or a charity, and end up working for a profit-making company; people who believe in the NHS and see it as a vocation really don’t like that.  Performance and quality dip on each transfer and you have to claw it back every time to where it was. 

      And every single time this happens you are forcibly reminded that you’re just a cog in a machine and the system does not care what you think, who you are or what you might want.  You have to do the work but no-one even asks your opinion on matters that affect you directly.

      I haven’t seen any studies on this but I’m going to guess that removing this foul way of mistreating a workforce might have positive benefits to retention, recruitment and productivity.

      I came to work in the hospice sector to get away from that system.  For the sake of those I left behind I truly hope this part of the Plan is enacted.

    Ryan Campbell CBE
    Chief Executive

    Read the full Long Term Plan at: https://www.longtermplan.nhs.uk/wp-content/uploads/2019/01/nhs-long-term-plan.pdf

  • Candlelight Walk and Festive Market photos now online

    by Mellissa Cox | Jan 08, 2019
    Despite the weather on Sunday 16th December, friends in the community turned up to our annual Candlelight Walk and Festive Market which raised over £1000. 

    It was fantastic to see so many of you at our hospice and that you were here to get your Christmas festivities in full swing.

    To view the online gallery of photos please click here.
  • Sign up now for some bubbly fun

    by User Not Found | Jan 04, 2019

    Families are being urged to sign up for some frothy, family fun – and to take advantage of an early bird discount by registering now.

    The event is the Demelza Hospice Care for Children Bubble Rush, with one event taking place at Mote Park, Maidstone, on Sunday 23 June at the other to take place at Avery Hill Park, Greenwich, on Sunday 7 July. Both start at 10am.

    Bubble Rush sees participants, both young and the young at heart, make their way through walls of bubbles and foam, going through different coloured zones and having lots of fun along the way. The route is pushchair and wheelchair friendly, with no minimum age limit, so the whole family can take part. Those taking part can choose to do the 2.5 km course once or twice.

    Participants can run, walk, or toddle and this year Demelza hopes to raise even more from the annual event. There is no official fundraising target, but all participants are asked to try to raise a minimum of £15. By doing what they can, participants will help Demelza to provide specialist care and emotional support to children with serious and terminal conditions and their families.

    Early bird ticket prices are £12.50 for adults and £8 for children (aged under 16) – with prices increasing Monday January 14.

    For more details please visit our events page or phone Demelza's events team on 01795 845 200.

  • NHS announces £25 million boost for Children's Hospices

    by Sophie Batchelor | Dec 27, 2018
    NHS England today announced its plan to increase funding for children's hospices to as much as £25 million a year, following a campaign led by Together for Short Lives.

    The #fundnotfail campaign, launched in summer 2018, called on the government to increase the children’s hospice grant to £25million, provide parity of statutory funding between children’s and adult hospices, and introduce a children’s palliative care strategy. 

    As part of the NHS long term plan, additional funding will be available each year over the next five years, increasing by up to £7m a year by 2023/24, if clinical commissioning groups (CCGs) also provide additional match funding. 

    Demelza's Chief Executive Ryan Campbell CBE has welcomed the news, saying: "We are heartened that the Government have recognised the crucial contribution of children's hospices to the overall care of children with terminal and life-limiting conditions and their families. Hospices are still very much reliant on charitable funding for the majority of their income but this makes a meaningful difference.

    "We have campaigned for this for years, alongside Together for Short Lives and the children's hospice movement. We are delighted, as will be the families now and in the future who rely on us for their care."

    The funding will enable children’s hospices like Demelza Hospice Care for Children to maintain and develop their services for the most complex children, and in doing so help reduce pressure on the NHS, keeping children out of hospital longer and supporting the wider family.

    Demelza only receives around 20% of its funding from the NHS and local authorities. Across England as a whole, children’s hospices received on average 22% of their funding from statutory sources in 2016/17, compared to 33% for adult hospices. Hospices like ours rely on donations and fundraising for the remainder of their costs. 

    At present, we are currently only reaching about 20 percent of families who could benefit from our support, and because of advances in medical practice there are more and more families in need. The work we do is getting more and more complex.

    The Together for Short Lives petition called for fairer and sustainable funding for children’s hospices. It was delivered to Downing Street on 11 September 2018 by representatives from across the children’s palliative care sector.