• 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.

  • Children enjoy some festive fun

    by Mellissa Cox | Dec 12, 2018
    Recently some of the Demelza children and their families enjoyed some festive fun when they were invited to Eastwell Manor, Ashford, to enjoy ice skating.
     
    The ice rink at the Champneys hotel and spa opened towards the end of November and remains in place until January 2. Champneys invited families from Demelza Hospice Care for Children to go along and get into the festive spirit – having supported the charity throughout 2018.
     
    Jennie Steer, Demelza’s referrals and service engagement manager, said: “Our families had a lovely time and we’d like to say a big thank you to Champneys and Eastwell Manor. The staff were fantastic and did all they could to ensure our children, their brothers and sisters and their parents had a lovely time.”
     

    Sarah Kemsley, Head of Demelza’s Major Donor relationship team, added: “This was such a fun treat for our children and their families. We’re very grateful to Champneys and Eastwell Manor for the invitation and also for their continued support which makes a big difference to the support we are able to offer.”

    Thank you to Eastwell Manor for this wonderful experience. 

    The Eastwell Manor ice rink is open Monday-Thursday 2pm–8pm and on Fridays, Saturdays and Sundays from noon until 6pm. 
     
     
  • South East London parents treated to Pamper Sessions

    by Sophie Batchelor | Dec 11, 2018
    Demelza's parent and carer coffee mornings are a place for families to come for a cuppa and a chat, but sometimes a little bit of time out for themselves is just what’s needed. Last week, our Family Support team at our South East London Hospice were able to provide some special pamper sessions for mums thanks to the generosity of beauty therapists Danielle and Josie who volunteered their time and services to give either a soothing massage or a manicure treat.

    Carlie, mum to JJ, said: ‘This is my first coffee morning and I’d definitely come back. I’d come in for anything - tea, cake or just a chat. I’ve lost friends who didn’t know what to say when JJ became seriously ill. Here everyone understands; they get it. We’re all facing completely different situations but in the same boat, which makes it so easy to talk to one another.

    ‘When you’re caring for a child with complex needs, you don’t get time for yourself. I had a massage with Danielle and it was lovely – so relaxing!’

    Another mum, Lisandra, relished the rare opportunity to have a massage, telling the group: ‘I’m thinking about my son all the time. When you are always putting your children first you forget how important it is to take time to look after yourself.’

    Danielle Butcher, one of the beauticians who kindly gave their time for the mums who came along, told us: ‘I was a bit nervous before I came today, as I thought a hospice would be a really sad and somber place, but it’s not like that at all.’ After our visitors had all had some pampering, Danielle and Josie kindly offered to come back regularly to give parents and carers some precious ‘me time’ and much-needed TLC.
  • X Factor single to support children’s charities

    by Mellissa Cox | Dec 10, 2018
    Proceeds from the sale of this year’s X-Factor winner’s single will help children with life limiting conditions.

    This year’s joint beneficiaries are Together for Short Lives and Shooting Star Chase. The money raised will help both organisations to be there for families facing the heartbreak of knowing their child will die young. All UK record company profits from the X Factor 2018 winner’s single will be donated.

    Andy Fletcher, CEO for Together for Short Lives, said: “Our heartfelt thanks to our friends at The X Factor for supporting the UK’s 49,000 seriously ill children and families. Families coming to terms with the child’s diagnosis often don’t know where to turn to for help and support and many feel isolated and alone. Your support, over many, many years has helped us to reach out to thousands of families facing the heartbreak of knowing their child will die young – helping them through the toughest of times. Benefitting from the X Factor is a wonderful Christmas gift and will help us to be there for more children and families, helping them to make the most of every moment together.”

    The winner’s single is also available to download and stream and is the X Factor UK’s 11th charity release. Simco Limited will donate 100% of its profits from the sale of each download and in respect of all audio streaming of the single, and the Chancellor has also agreed to donate the VAT, in each case to be shared equally by Together For Short Lives and Shooting Star Chase.

    Together for Short Lives is a UK charity for children’s palliative care which works to support and empower families caring for seriously ill children and to build a strong and sustainable children’s palliative care sector. As well as directly supporting children and families TfSL also supports all the professionals, children’s palliative care services and children’s hospices that deliver lifeline care. It has more than 1,000 members, including Demelza and other children hospices, voluntary sector organisations and statutory service providers.

    Together for Short Lives provides a strong and unified voice for the sector and works with the public, politicians and companies to raise awareness, advocate for change and increase funding for children’s palliative care services.  
  • "Volunteering with Demelza gives my days a meaningful purpose"

    by Sophie Batchelor | Dec 05, 2018

    Collette Chesney began volunteering with Demelza this year. She wanted to share her story with you for #InternationalVolunteerDay

    “After becoming a widow back in September 2016, following early retirement back in 2013 with my husband, I found that I now had a lot of time on my hands without that special person by my side. It wasn’t until April 2018 that I felt strong enough to begin to fill my days again, when I decided to email Demelza and found the swift and friendly approach a very positive influence on deciding to apply for a volunteering position.

    Not really an office type of person, I applied to help in the kitchen and housekeeping and I was lucky enough to be accepted and thoroughly enjoy every shift. The people at Demelza are so friendly, the children are magical and the whole place has a lovely ambience.

    After a while, I felt I would also really like to be involved with the children and so I applied to assist the Care team. Again, I was fortunate enough to be accepted. The children are delightful as are the Care team and it is an honour to volunteer with them. I have since been involved in helping at events and involved with a new pilot project for providing practical support in the children’s homes.

    I had never set foot in any hospice before joining Demelza, so I did not quite know how I would feel but I can honestly say I enjoy volunteering there very much. It certainly gives my days a meaningful purpose. My late husband had a very soft spot for Demelza and I think he would be proud.”

    We are so grateful to Collette and the hundreds of other volunteers who support Demelza, who we simply couldn't function without. Our 1,000 volunteers gifted us 158,000 hours of their time, saving us an incredible £1.24 million!
     
    If you would like to join Collette and become a volunteer for Demelza, check out our Volunteering page to learn how donating even a little bit of your time could make a big impact, or apply now at http://bttr.im/c35j3
  • Help needed at Hythe shop

    by Mellissa Cox | Nov 29, 2018
    If you have a few hours spare each week, like meeting new people and want to get out of the house, we have the perfect opportunity for you at our Demelza shop in Hythe, Kent.

    More volunteers are needed to help with a variety of tasks at the busy shop – and even just four hours a week would be welcomed.

    Shop volunteers could help out with a variety of tasks from sorting and pricing stock, to serving on the till and dressing the windows.

    Lucy Vint is the new shop manager at Hythe, previously having worked as an assistant manager at Demelza’s Tenterden shop.

    She said: “I currently have about 15 volunteers but I am in need of more. Ideally volunteers will do at least four hours a week and this really helps. Every extra pair of hands makes a difference. It helps us to raise money.

    If you’re bored, lonely, always wanted to work in a shop and want to feel valued then we would love to hear from you! And you’re never too old to volunteer. Indeed, we have one volunteer who is 96.

    Working in the shop is very varied and volunteers don’t have to do the till if they don’t want to. They could accept donations, thank people for donations, sort through donated items, price them and put them in the window. There’s also cleaning to be done and hanging and steaming.”

    Anyone who would like to volunteer is asked to phone the shop on 01303 237457 or to pop in.
     
  • Actor Daniel Radcliffe backs Demelza Christmas appeal

    by Mellissa Cox | Nov 26, 2018
    Actor Daniel Radcliffe is using his star power to back our Christmas appeal. Daniel, 29, who is currently on Broadway in New York starring in the play ‘The Lifespan of a Fact’, has narrated our two-minute Christmas fundraising film.

    In the film, Daniel poses the question of what it means to live a #FullLife, a hashtag shared on social media every day by our friends, family and colleagues. But then he asks what it means for a child with a terminal condition.
     
    Daniel continues with the message that Demelza believes a short life should be the fullest of them all. The film makes a play on other often-used social media hashtags such as #OOTD, #MeTime, #Love, #NoLimits and of course #Xmas and what it means for the children that we care for. 
     
    Glynnis, mum to Elke, says: “Everyone expects when they are pregnant to have a healthy child and I was no different. But when Elke was starved of oxygen at birth, doctors didn’t expect her to survive - we were told she wouldn’t make her first Christmas. As a family we approach each day as an opportunity to find something fabulous - even on the bad days. We are so lucky to have been supported to find the best in every day and solutions to problems, thanks to Demelza Hospice Care for Children. 
     
    We come to stay at Demelza, and I’ve often likened it to being at Disney. Not because of the rides, although we’re on our own rollercoaster ride as it is, but, more about the fact that Demelza has thought about everything. It’s like coming to a home from home. It’s like having a supportive family, which can do all the things that you need to do with Elke. Demelza allows us to do the fabulous things that most families would take for granted. This isn’t a place for children to come and die. It’s a place for children to come and live. And their families to live with them. It’s an amazing place.”
     
    Daniel has donated his time for free and the film has been made pro bono by Tunbridge Wells-based advertising agency Southpaw. The music has also been provided free of charge, written by Robert Primrose from Swimming Girls.
     
    Daniel, who is a Demelza Vice President, explained why he chose to voice the Christmas campaign, saying: “Demelza is a charity very close to my heart, having been a supporter for many years now, and I jumped at the opportunity to voice this inspirational video.

    A short life should be the fullest of them all so please watch, share and donate to Demelza to help children with terminal conditions and their loved ones make the most of the precious time they have together.”  
     

    Tamsyn Clark, Director of Marketing & Fundraising, from Demelza said: “We’re very grateful to our Vice President Daniel Radcliffe, the fantastic team at Southpaw and everyone else who has contributed to this magical appeal. Most importantly, we extend our gratitude to the stars of the #FullLife campaign – the children and families who appear in it. They are at the heart of everything we do here at Demelza and we’re beyond grateful to everyone who donates to ensure we can be there for every family who needs us.” 
     
    Tom Poynter, CEO, from Southpaw explained why they decided to help Demelza, saying:We were given a wonderful opportunity to work with a remarkable charity and we just had to help them.  With so many friends and families who have overcome challenges with their own child’s development, it was a subject very close to our heart and a place where we can make a real difference to the charity. At its heart, we want to dispel the myths about hospices being a place where children with a terminal condition go to die – at Demelza, it’s where they go to live.“
     

    View our Christmas appeal and watch the video here.
  • Footballer Johnnie Jackson to captain Demelza London Marathon team

    by Mellissa Cox | Nov 23, 2018
    Those who will be pounding the streets and clocking up the miles to train for next year’s London Marathon for Demelza, are going to be given a helping hand – thanks to footballer Johnnie Jackson!

    Johnnie, Charlton Athletic Football Club’s Assistant Manager and former player, is to captain the Demelza Hospice Care for Children London Marathon team and will also be doing the 26 mile event himself. Running with him and also helping to coach the Demelza team will be Ben Talbot, the club’s first team sport scientist.

    Johnnie and Ben will be giving members of #TeamDemelza running and training advice – along with tips on warming up and cooling down, stretching, avoiding injury and nutrition. The Demelza runners will be invited to the Charlton Athletic grounds for several training sessions and will also get the chance to do a few runs with Johnnie and Ben.

    Johnnie has been a Demelza supporter for many years and is a regular visitor to our Eltham hospice. 

    He said: “I always said I would run a marathon as soon as I retired from playing and so here I am – I’ve signed up for the challenge!

    I will be running to raise money for Demelza as this is a cause close to my heart, having visited the children’s hospice in Eltham many times. I’ve been privileged to have met some of the inspiring children and families who use the hospice and I’ve also seen first-hand the amazing work the staff do.

    Ben and I are looking forward to helping the other runners with training, fitness, injury and nutrition advice and we’re looking forward to meeting them all. It would be great if other people who have places decide to run for Demelza so that they can join us too.

    I hope to raise as much as possible for Demelza so the charity can continue with its amazing work. I’m also aiming to beat my Dad who ran a marathon many years ago and claims to have run it in three hours 20 minutes!"


    There are currently 23 runners in our London Marathon team with all 18 charity places allocated and a further five own place runners have also chosen to run for us.

    If you have your own place in the 2019 London Marathon and would like to run for a charity, then why not take advantage of this expert coaching? For more information and to sign up contact our Events Team on 01795 845200.
  • A Christmas wish at Demelza

    by Mellissa Cox | Nov 20, 2018
    We would like to ask the local community to give support to babies and children with serious and terminal conditions this festive season by buying specialist items from our Christmas wish list.

    Due to the nature of the conditions of the children and young people using our services, we are always happy to receive sensory toys, CDs, DVDs, computer games, vouchers, books and toiletries, which can be dropped off at either of our hospices in Sittingbourne and Eltham or our office in St. Leonards. Gifts will be given out throughout December and at our New Year Parties in January. Any gifts that cannot be given to families will be used for fundraising and retail, with the money going back into providing care to our children, young people and families. 

    We would also like to invite those who would like to spread a little Christmas cheer to help purchase a piece of equipment if you would prefer. We would kindly ask people not to buy and donate items not on the wish list, as often they might not be suitable for our children, many of whom have very specialist needs. Instead we would it if you could either buy a gift from the wish list, or to give money or an Amazon gift card.

    A message from Chief Executive Ryan Campbell:
     “We are always amazed at the generosity people show our children and families, particularly at Christmas. At this time of year their thoughts often turn to presents, toys and sweets, but unfortunately many of these gifts just would not be suitable for our children’s very special needs.

    Many of our children have very specific dietary requirements and some are tube fed, which means they would not be able to enjoy sweets, like others their age.

    So instead each Christmas we ask those who like to give a gift to purchase something from our wish list, to give an Amazon gift card or a donation direct to Demelza to help us to continue to support our children and their families.

    Every single penny is so desperately needed and we can do so much with your donations, no matter how big or small. A donation of just £25 could provide a family with all their meals for a day during their stay with us, or a donation of £60 would allow a child an art or music therapy session to help express thoughts and feelings they may not be able to put into words.

    Demelza supports the whole family and every Christmas we like to give gifts to brothers and sisters that visit the hospice with their siblings. We’re very fortunate that our present needs will be broadly met by the valued partnership we have with Heart FM’s Giving Tree."