• 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

  • 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,

    Sophie

  • 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.
  • Lucky Superdraw player scoops £25,000 for Christmas

    by Sophie Batchelor | Dec 24, 2018
    Demelza Lottery player Nina Buckley received an early Christmas gift today when she picked up a cheque for £25,000, after winning the rollover in Demelza's Superdraw on Friday 7 December.

    Nina, who is from Bexleyheath, only signed up to our Lottery and Superdraw very recently along with her mum and sister after meeting Debbie, one of our Lottery Sales Advisers at a Christmas Market in Hall Place, Bexley.

    "I had seen Debbie every year with the Demelza Lottery stand but had never stopped by - it was only when my mum stopped and started chatting that I heard Debbie describing what they do at Demelza for all the children, and it sounded lovely, so I thought 'Why not?'.

    Little did Nina know that the chance encounter would earn her the incredible sum of £25,000 - in her very first week as a Superdraw player!

    'I didn't even think about winning; it hasn't really sunk in yet. I'm still thinking about what to do with the money. Paul Booth, Demelza's Head of Lottery and Gaming, had been ringing me for two weeks but I hadn't gotten around to checking my messages! In the end Paul came to my house to deliver the news in person but it was my brother who  was home. He was shocked when he answered the door. I'm still in shock.'

    Despite her excellent stroke of luck, Nina plans to continue playing the Superdraw. "I'd say to anyone who's thinking about signing up - you should definitely do it! The odds are so high, but we didn't really care about the prize. I just saw it as a small gift I could give, so I'll keep playing to support Demelza and the work they do."

    If you'd like to join Nina by signing up to our Lottery and Superdraw, you too could be in with a chance of winning - and best of all, you'll helping our vital services to continue for just £1 a week.
  • An avid cyclist in just 5 years!

    by Mellissa Cox | Dec 24, 2018
    Chis Laming started cycling at the age of 56 in 2013 just a year before the Sittingbourne to Paris cycle. Chris said “my friends and I all went out and bought nice bikes and spent months building out fitness in preparation for the event”. Chris then went on to do another Sittingbourne to Paris, a Sittingbourne to Amsterdam and the London to Brighton Cycle, and now he is looking forward to The Italian Job! 

    “When you visit Demelza and see the dedication of everyone who works or volunteers there, visit the wonderful facilities and hear first-hand from the families who depend on the care provided it is easy to want to get involved” said Chris. 

    Chris is looking forward to the Italian Job and has been working hard on his training and fundraising, Chris has held quiz nights, curry nights, static bike rides and he uses his Just Giving page. You can take a look at Chris’ Just Giving page, www.tinyurl.com/lamingride. 

    Chris’ words of advice are, “when you first start preparing for a major cycling event, you not only have the challenge of building fitness but also the challenge of raising sponsorship. This can seem daunting at first but there are many things that you can do to reach your target!” 

    Find out more about the event by visiting www.demelza.org.uk/italian-job 
  • Archbishop visits Demelza Kent

    by Sophie Batchelor | Dec 21, 2018

    The Archbishop of Canterbury Justin Welby paid a Christmas visit to the Demelza children’s hospice in Sittingbourne, Kent, where he met children, parents and staff.

    The VIP visitor had a tour of the facilities with Demelza’s President Richard Oldfield and Chief Executive Ryan Campbell, stopping along the way to chat with children who have serious and terminal conditions and their families.

    The Archbishop, who is a patron of the charity, visited a magical Santa’s grotto which had been created at the hospice and was presented with a Christmas card made by Demelza children, featuring fingerprints, handprints and footprints.

    He also visited various parts of the hospice including the hydrotherapy pool area, the soft play area, the sensory rooms and the art and the music therapy rooms, stopping along the way to speak with staff as well as some of the charity’s volunteers who help in the kitchen, help look after the grounds and assist in reception.

    The Archbishop said: “Every child and young person is a precious gift from God, and the care and support offered by Demelza is inspiring. At Christmas we remember how Jesus came to bring light to the world – and it’s been wonderful to witness the light and joy brought by Demelza into the lives of so many families.”

    While at the hospice the Archbishop also recorded a Christmas interview with ITV News, which will be broadcast over the festive period.

    Demelza President Richard Oldfield said: “It was wonderful to have the Archbishop at Demelza and to see him spending time with children and their families. It was really inspiring for all of us. The connection between the Archbishop’s office and Demelza is very special.”

  • Motorcyclists make a Christmas delivery

    by User Not Found | Dec 21, 2018

    Motorcyclists paid a surprise visit to Demelza, Kent, to deliver gifts, vouchers and donations, just a few days before Christmas.

    A group of 15 bikers roared into the car park to deliver the presents, with motorbikes decorated with tinsel and teddy bears sitting on handlebars and seats.

    The visit was by the Kent Advanced Motorcycle Group, who meet at Brands Hatch. They have previously visited children’s hospice in Sittingbourne on an Easter egg run and during the festive season.

    After their delivery in the wind and cold Demelza treated them to hot drinks and mince pies to say thank you.

     

     

  • Footballers make festive visit

    by User Not Found | Dec 21, 2018

    There were smiles and giggles galore when children were given some early Christmas presents to unwrap – thanks to Charlton Athletic Football Club.

    Players, coaches and other members of the club pay an annual visit to Demelza’s children’s hospice in Eltham, South East London – and every year the trip generates lots of excitement for youngsters and parents alike.

    Charlton’s Assistant Manager Johnnie Jackson, Team Captain Jason Pearce and Midfielder Mark Marshall gave out presents which included chocolate, toys and books. They talked and played with some of the families who use the services of Demelza and also met delighted staff and volunteers.

    Nicola Irvine, Senior Community Fundraising Manager, said: “We’re very grateful for the support we receive at Christmas and throughout the year from Charlton. It was wonderful to have them with us for the afternoon. They really brought some festive cheer to the hospice. The children really enjoyed the visit and loved the presents.”

     


  • A roar of approval for big cats prize

    by Mellissa Cox | Dec 19, 2018
    For Lisa Cruttenden, winner of Demelza’s Moments That Matter competition, spending time with her husband and family is what makes for her most precious memories. And having recently enjoyed her prize of a weekend at The Big Cat Sanctuary in Smarden, she now has a whole lot more to add to her store.

    Lisa says she couldn’t believe it when she was announced as the winner of our Children’s Hospice Week competition on Facebook Live. “My mum told me and I was shaking when I saw my name,” she said. “I said to her I was just disappointed I couldn’t take her as well as my husband Simon but then I realised it was for four people, not two!”

    As well as mum Pat, Lisa also shared her prize with her mother-in-law, Maggie. “They have done a lot for me and Simon so it was nice to be able to give something back,” she said.

    Lisa, who lives in Walderslade, knew about the Big Cat Sanctuary and its work in supporting the conservation of endangered species from an open day visit. But getting the chance to get up and personal with the wild animals as special guests was something else.

    They enjoyed a personal tour and got to enter the small cats’ enclosure. Meals were eaten in the conservatory with only a pane of glass separating them from the lions, and after a night in a luxury lodge they woke to the sound of them roaring. The absolute highlight, though, was feeding tigers and a snow leopard by hand.
    “They have been trained to take the food very gently so we were able to feed them chicken legs through the fence – it was amazing!

    “I can’t thank Demelza and the Big Cat Sanctuary enough for giving us this incredible experience.”

    Lisa, who has dressed up as Peppa Pig to entertain young visitors at Demelza Kent open days, is now also helping the Big Cat Sanctuary too by being a front of house volunteer.

    The keen supporter also helped boost our funds by buying her wedding dress from our Canterbury bridal shop. “I saw the wedding dress stand at the open day on my break from being Peppa Pig. The dresses were gorgeous.”

    Encouraged to visit the shop, she was impressed by the selection. “I tried on several dresses with my mum and the very helpful lovely lady who worked there at the time, who made me feel so at ease.”

    Lisa found the perfect strapless white embroidered gown for her and Simon’s wedding in Mallorca last year. “Now I recommend the Demelza bridal shop to people all the time.”
  • Demelza’s annual Canterbury Carol Concert returns raising £18,000

    by Mellissa Cox | Dec 18, 2018
    Around 1,000 people turned out for an evening of festive songs, readings and live music at Demelza’s annual Canterbury Carol Concert. 
     
    Our annual Celebration of Christmas event took place at Canterbury Cathedral on Monday 17 December, and saw magical performances from harpist Emma Hopper, the Kent School of Performing Arts and the Canterbury Cathedral Choir. 
     
    The congregation enjoyed readings from former EastEnders star Harry Reid, Heart FM Radio Presenter Jonny Meah, Demelza founder president Derek Phillips and parent Glynnis Wisby. 
     
    Mum-of-two Glynnis shared a touching moment when she lit a candle with 16-year-old daughter Elke, who has been cared for by Demelza since she was just two years old. The pair can be seen in Demelza’s #FullLife Christmas Appeal video which has been narrated by actor and Vice President Daniel Radcliffe. 
     
    Lucy Hudson, 24, a member of the Demelza Young Adult Forum, also shared her positive experiences of Demelza in a moving poem she had written called ‘Home from Home’. 
     
    More than £18,000 was raised on the sell-out night which will help Demelza to provide care and emotional support for children with terminal conditions and their loved ones, living in Kent, South East London and East Sussex. 
     
    Hayley Richardson, Head of Community and Events at Demelza, said: “We are truly grateful to everyone who attended this beautiful evening of carols and festivities and to all the performers and readers. 
     
    “As a charity, Demelza is almost entirely dependent on the generosity of the public to provide the funds that keep our services going. We very much look forward to seeing our supporters in 2019.”
     

    Donate to the Demelza #FullLife Christmas Appeal here:
    www.demelza.org.uk/christmas
  • Find out more about The Italian Job cycle challenge

    by User Not Found | Dec 17, 2018

    Challenge enthusiasts, keen cyclists and those with a desire to get fit or to travel are all urged to consider taking part in an exciting event being organised by Demelza Hospice Care for Children.

    Throughout the year Demelza Hospice Care for Children puts on a range of events to encourage fundraising, with something for everyone from walks, runs and cycles, to overseas treks, garden openings, fairs and even wing walks.

    And next month, January 2019, the charity, is to hold two information evenings for people who would like to find out more about The Italian Job cycle challenge.

    The information evenings will take place at the charity’s Eltham hospice, in Wensley Close, on Tuesday 29 January and at the Sittingbourne hospice, in Rook Lane, on Wednesday 30 January. Both events will be from 7pm – 9pm. All are welcome, including current supporters and those who might not know very much about Demelza.

    The evenings will include the chance to hear more about the 225 mile ride, which will be set against the stunning backdrop of seven stunning Italian lakes and which takes place from September 4-8. Demelza is the first hospice in the UK to offer this once in a lifetime three-day fundraising cycle, which has been purposely designed to suit all biking abilities.

    Challengers will need to purchase their own flights, travel insurance and raise £1,650 sponsorship, with all money raised helping Demelza to provide specialist care and emotional support for children with terminal conditions.

    Riders will also have the option to tackle the famous five mile Madonna del Ghisallo climb – certainly not for the faint-hearted!

    The information evenings will also be an opportunity to find out more about Demelza and its amazing work to support children who have serious and terminal conditions and their families.

    Events Executive Emma Cox, said: “This promises to be a fantastic event, with breath-taking scenery and views and experienced cyclists who really want to push themselves can also do the Madonna climb, if that’s something they want to tick off their bucket list. We hope individuals and teams will join us for this unforgettable experience, knowing that their efforts and their involvement will help us to continue to be there for our families, whenever they need us. Please come along to one of our information evenings in January to find out more.”

    Those interested are asked to register by Friday 25 January at:  

    eventbookings@demelza.org.uk

    Alternatively please phone 01795  845 200 and ask for Events.