• A short life but one full of love - Baby Loss Awareness Week 2019

    by Sophie Batchelor | Oct 10, 2019

    Jacob only had a very short life, but it was one full of love. Jacob was born on the 14th February 2018, Valentine’s Day, which his parents said was very fitting. Jacob died 5 days later.

    Like most parents, Josi and John were excited to find out they were expecting another child. They already had a son, Oskar, who was 1 and a half years old.  This excitement was made even greater having had the devastating loss of their first born child, Minna, who was stillborn in 2015.

    For a second time, John and Josi were left devastated and all their future plans for a family of 4 left up in the air when the 22 week scan diagnosed a rare heart condition – hypoplastic left heart syndrome.  The Head of Cardiology explained everything clearly including that Jacob’s case was a particularly bad case, which was confirmed later in an MRI scan.

    At this point, Josi and John were told about Demelza and arranged a visit. “The facilities looked amazing and everyone was so welcoming and kind” recalls Josi.

    Jacob was born and the next 5 days felt like a blessing to the family.  They had a naming and blessing ceremony a few days later at home.  At this point the family were spending the days at home and evenings in Demelza as they were mostly concerned about night times. 

    “Arriving for the first time at Demelza with Jacob was surreal” remembers Josi. “Everyone seemed to know who we were and after a very short time it felt like being at home while distant relatives tended our and Jacob's every need – they made us feel so comfortable and were attentive to every need. Jacob’s room had been prepared so thoughtfully in advance and they also accommodated some changes that we requested to make things even better – the care team and nurses were brilliant”.

    Josi and John knew their time with Jacob was short so they had hand and footprints made as a family. Later that day, Jacob deteriorated rapidly and died shortly afterwards with both Josi and John beside him.

    John recalls “we believe that Jacob had life to the full. He left this world as innocent and perfect as he entered it”

    “Demelza was amazing – it’s such a special and loving place – I never knew these places existed but I can’t imagine what we would have done without them when we left hospital with Jacob.  It’s like living with a specialist family member who supports you with the nursing and care – one nurse even stayed on way past her shift had finished as she said it wasn’t the right time to hand over”.

    The Demelza care team was by the family’s side throughout. Demelza helped with memory making, offered help with funeral arrangements and arranged bereavement counselling. They supported the whole family, also helping to explain to the parents how their child Oskar would feel.

    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 up make sure every family and child can depend on us when they need us most.

  • Work In Their Shoes with Sophie - Housekeeping

    by Sophie Bourne | Oct 01, 2019

    I’m the second Sophie in the Marketing Team at Demelza, and started here in April of this year. I chose Housekeeping as my first Work In Their Shoes, and below is how I found it!

    4.30am is slightly earlier than I’m used to setting my alarm, and it was just as difficult to drag myself out of bed as I’d expected. Working in Marketing I’m very lucky to have normal office hours of Monday to Friday, 9am-5pm, so this Work In Their Shoes experience was a bit of shock to the system to say the least.

    Arriving at work I was greeted by an incredibly chirpy Michelle and Michaela, who already had on their marigolds and were hard at work. We started in the main offices, hoovering, clearing bins, cleaning kitchens, providing loo roll, refilling hand soap, and all the jobs that you don’t even notice need doing in your general day to day at work. Before hoovering the floor of all office spaces and meeting rooms at Demelza, I never really realised how many staff members there are at our Sittingbourne site, and just how much floor space that equates to!

    I also quickly realised I’d wildly misjudged how physically exerting the day was going to be, and that I should have worn my gym kit as opposed to thick jeans, t-shirt and jumper. I was red in the face, sweating profusely, and predicted I was going to ache tomorrow morning.

    Housekeeping is not only cleaning, but also ensuring everywhere looks smart, tidy and is ready to be used for the next person. Michelle was quick to readjust all the office swivel chairs I’d tucked under the tables (thinking they were all in line and looking smart) to ensure that all the legs were pointing in the same direction, arms were touching, and all at the same height – attention to detail I didn’t even realise was possible!

    We moved onto the bedrooms where I honestly thought Michelle was pulling my leg when, as part of their daily routine, she handed me a mop and asked me to start washing the walls and ceiling beams. The extent to which the children’s rooms are cleaned on a daily basis put any cleaning I’ve done in my life to shame, and is testament to the Housekeeping Team and the cleanliness standards of Demelza. From the walls and floors we moved on to the beds, cleaning every available inch of mattress, head board, and frame, followed by the bathrooms which were gleaming by the time we finished. Not only was I surprised by the extent of cleaning, but also the processes that are adhered to to ensure the safety of cleaning; colour coded cloths and buckets, charts for which bedding is to be washed in different detergents, and knowledge of the families who are currently staying and their needs.

    Whilst cleaning, the Housekeeping Team made sure the radio was on so they were able to sing along with every song. Whether you wanted to or not, they made sure everyone in the vicinity would be able to hear their dulcet tones (and some not so dulcet tones!) and hear them coming. Although hard work, the process of completing each room and leaving it spotless was incredibly therapeutic, and gave me an immense feeling of satisfaction knowing it was ready and safe for its next family to enjoy.

    On breakfast and lunch break I met Dawn, a wonderful lady who has volunteered in Housekeeping for more years than I can count, and whose ironing is second to none. She, along with the whole team, tucks herself out the way and works incredibly hard. I finished my shift with Jen, who told me insider secrets and cleaning tips whilst we swept and mopped the long Care Corridor that runs through the heart of the hospice. This was another area of the building I hadn’t appreciated the size of until I was cleaning it! And to think, the team would be doing this all again tomorrow.

    This was an incredibly eye opening day for me; I underestimated the extent of the Housekeeping Team’s work and just how important it is to everyone at Demelza – children, families, and staff. They crack on with their never-ending list of jobs, at unsociable hours, and manage to do all of it with a smile.

    work in their shoes logo 2019

  • Italian Job cyclists raise £60,000 for Demelza

    by Sophie Batchelor | Sep 15, 2019
    32 cyclists including Demelza staff members took on the charity's Italian Job challenge this month, raising at least £60,000 between them to help fund vital support to children with serious and terminal conditions and their families.

    Over three days, fundraisers pedaled their way up steep climbs with breathtaking views of Italian lakes and Swiss mountains along the way.

    Senior Events Executive Kat organised the trip and cycled alongside participants of all skills. She said: "The event was a great success and everyone loved it! For those that had joined us on one or more of our previous challenges, they said it was the toughest one they have done yet - but so worth it. There was an incredible sense of team togetherness and camaraderie, especially at the top of the Madonna!"

    The Madonna climb was an optional addition to the challenge, famed worldwide as one of the most iconic uphill cycle routes in Europe. The fastest member of #TeamDemelza made it to the summit in just 35 minutes!

    Well done to all who put their best wheel forward for their local children's hospice - to you we say 'grazie mille'!

    Inspired by their challenge? Take a look at our Mount Kilimanjaro Trek or some of our other amazing cycling challenges!
  • Liam's Story

    by Sophie Bourne | Sep 12, 2019

    Liam was born a healthy baby but at six months old, caught a virus that would change his life completely.

    Mum Chrissie, said: “He stopped feeding, had a high temperature and kept screaming, so we took him straight to the local children’s hospital.” When a consultant noticed something wasn’t right, Liam was immediately referred for scans and tests, and was found to have a global loss of white matter in his brain.

    Liam, now 10 years old, will never be able to walk, is severely visually impaired and has global developmental delay. Not long after this diagnosis, Liam began experiencing seizures. “It was gutting to find out,” said Chrissie. “We didn’t know what the future would look like for him, but we knew it was going to be hard.”

    It was when Liam was almost five years old that it became near impossible for him to swallow or keep down his food and medication, eventually becoming so frail from that he had to be intubated and taken to intensive care. It was at this difficult time that Chrissie first faced the possibility she may lose her son. “It was decided we would try to get him home for end of life care,” she recalled.

    Liam continues to fight on however, and will soon celebrate turning 11 years old. “His health status changes almost daily,” Chrissie told us. “We deal with each day as it arrives. When times have been very dire, knowing we have the support of Angie and the Community Team at Demelza East Sussex has helped us beyond words.”

    Liam is now medicated and fed intravenously with a regime of 4-6 hourly infusions, meaning he is no longer able to attend school apart from an occasional visit, so Health Care Assistant Tammy comes to spend quality time with him. “It gives Liam a fun relationship in his life which we really appreciate,” said Chrissie. “He enjoys music and sensory play, or getting messy with paint! Tammy knows Liam well enough to understand him and also what it means to get a smile from him, because even that is difficult for him to do now.” For Tammy, Liam’s delight is the ultimate reward. “I love what I do,” she added. “I’m 68 but I’m not ready to retire yet - I’m not going anywhere!”

     

    Did you know?
    All families supported by Demelza Community in East Sussex also have use of our children’s hospices Demelza Kent in Sittingbourne and Demelza South East London in Eltham.

  • Demelza garden is a winner for wildlife

    by Sophie Batchelor | Sep 04, 2019

    Demelza’s gardening team, lead by Sam O’Brien, Head Gardener, have been awarded a prestigious Gold accolade by the Kent Wildlife Trust in their Wild About Gardens competition.

    Sam and the team have been busy creating a wildlife friendly environment at Demelza Kent, including introducing more plants that are native to the county and building creature comforts for visiting species, such as hedgehog houses and insect hotels.

    The team rely on the support of volunteers to keep the six acres looking their best for families all year round, and their hard work has paid off, as they have also been nominated for the additional 'Garden with the Best Buzz' award!

    Sam said: “We are delighted to have secured this prestigious award thanks to the dedication of the team and are looking forward to the award ceremony on 24 October”.

    If you'd like to volunteer your green fingers for Demelza, visit our Volunteering page.
  • Student nurse Holly's placement at Demelza

    by Sophie Batchelor | Aug 24, 2019

    We asked student nurse Holly to tell us about her experiences during her placement here at Demelza.

    "I am currently studying children’s nursing at the University of Birmingham, at the end of our second year we are given the opportunity to choose a placement area where we will work for four weeks so here I am at Demelza! I have an interest in the complex care offered in a hospice environment and live locally to Demelza Kent so it was the perfect opportunity for me. I came to hear about Demelza through a charity dance show I took part in which was raising money for Demelza House.

    During my time at Demelza I have taken part in a range of activities, I have been predominantly based within the care team working alongside the amazing nurses and care assistants in caring for the children staying at Demelza Kent. I have really valued being able to care beyond the typical nursing realms I have experienced on other placements, it is lovely to be able to support the children in music and art therapy sessions, relax in the sensory room, have fun in the soft play room, things that aren’t typical to a nursing environment I have been in before. The rewarding feeling you get after a shift is great, the children at Demelza really remind me of why I wanted to come into nursing.

    I have also been lucky enough to spend a day at the beach with the family support team and families from Demelza. It was so lovely to see the work that goes on outside of Demelza and to see the families having fun and really impacting from the support of the team - and to spend a day in the sunshine!  

    Whilst at Demelza I have been able to see all of the amazing work that the fundraising and marketing teams do, it is easy to forget how much behind the scenes work is needed to keep Demelza running in the fantastic way that it is.

    For now, I will be enjoying my final year as a student before entering the big world of work!"

    Thanks, Holly! 

  • Families enjoy fun in the sun at annual beach trip

    by Sophie Batchelor | Aug 23, 2019

    We had our biggest and best Family Beach Day yet this month when over 200 family members, staff and volunteers descended on the Margate coastline for a day of fun in the sun.

    The annual outing is organised by our Family Support Team in Kent for children with serious and terminal conditions and their families. For many of the children we care for, a trip like this is almost impossible without hours of planning around their complex care needs. For some, the day is the only chance they get to see the seaside, or feel sand, thanks to the specialist beach-terrain wheelchairs kindly lent to us again by Beach Within Reach.

    The families enjoyed lots of activities with support from local businesses and organisations and the traditional trip to adventure park Dreamland was a big hit with all ages once again. The day was a real #TeamDemelza effort with staff and volunteers from across the charity working together to arrange the day, led by Family Support Worker Zoe Workman.

    One of the families in attendance said of the day: "I always love seeing the siblings enjoying time together and the bonds they make even after a few hours. I also love chatting with the families and sharing our stories .

    I cannot really put into words what days like these make me feel. Even now hours after we've been home I'm smiling and loving looking back over the memories we have all made together today. So precious just to be with people who just get it and understand. It's the best therapy ever."

  • Cyclists raise more than £9,000

    by Sophie Bourne | Aug 09, 2019

    cyclist

    Cyclists raise more than £9,000

    A team of 30 cyclists took part in Ride 46 and Ride 100 London for Demelza over the weekend and between them raised over £9,000!

    The determined riders cycled the course through London and the Surrey Hills in beautiful weather and both participants and Demelza were thrilled to see the fantastic amount raised.

    The team included Ian Robb, whose daughter Hallie is supported by Demelza Hospice in Sittingbourne, and Demelza supporter, Leander Marks.

    Prudential Ride London sets off from the Queen Elizabeth Olympic Park and follows a 100 mile route on closed roads through the capital and into Surrey’s stunning countryside. With testing climbs and a route made famous by the world’s best cyclists, it’s a spectacular route which finishes at The Mall in central London.  For those who prefer a shorter route, Ride 46 is another option.

    Ride London is known as the London Marathon of cycling with the 20,000 places selling out in days.  For further information on next year’s event, go to: www.demelza.org.uk/support-us/challenges-and-events/detail/prudential-ridelondon-surrey-100-2020

  • Work in their Shoes with Vin - Garden

    by Sophie Bourne | Aug 08, 2019

    work in their shoes logo 2019

    August 2019
    Our Deputy Chief Executive, Lavinia, spends a Work in their Shoes day with our Gardening Team.


    I introduced this scheme to Demelza many years ago. It was originally called “Walk in Their Shoes” but we found people were only seeing certain elements of the role and weren't experiencing a 'real' day's work with each department. I love Work in Their Shoes and have learnt so much from doing it myself.

    There numerous aims for the scheme :-

    • Increase understanding of other colleagues roles and where their challenges lie, to improve team working
    • Increase understanding of the perspective of each team and generate better communications
    • Learn more about the work of Demelza as a whole
    • Increase engagement and motivate us by seeing for ourselves the difference we can make!

    ---

    I have worked in the garden at Kent. OK it was a hot August day (as opposed to the cold drizzle of November!) and I worked with a corporate group of around 30 carrying and placing heavy boulders in the sensory garden. It was hot, heavy and exhausting work but I was inspired by that corporate team who thought we were amazing for letting them come and get out of their stuffy offices and do something for the children.  They worked tirelessly all day and were pleased with what they achieved.

    I learnt the importance of great stewardship from our corporate team, I learnt the importance of good planning from our gardening team, I learnt that 6.5 acres is in fact an enormous challenge and an army of volunteers wouldn’t keep it perfect. I was able to pass on to the gardening team an email from a parent who explained why they love to visit the site, long after their daughter passed away and think of her in the Garden of Tranquility. It also confirmed what I already knew - “gardening” is jolly hard work and the Demelza site looks fantastic! 

    ---

    I have worked a night shift in the Kent care team. I was terribly nervous that I might not stay awake or I might feel unwell. I did stay awake and I did feel unwell – it's amazing the impact that just one changed sleep pattern can have on your body. We need to consider that for our care team colleagues. However, I had the most amazing insight into the extent of the work involved.

    We had a child with a complex seizure protocol (the steps you have to take if the seizure develops and/or doesn’t stop). Mum and Dad had left their precious little person with us for the first time to go to the cinema, the first time since he had been born…….he was 4 years old. If seizures got to a certain level of the protocol, Mum wanted to be contacted so she could come back if needed. I felt the pressure but all those around me were calm. I was never alone with the child but I was asked to record times and duration so that the notes could be accurately updated.  This is when I remembered ……nursing was never for me!! Of course those records would have been taken without me there and someone had a careful eye on me, but it really brought it home to me the level of responsibility our care team hold.

    There were 4 other children on site that night. One had difficulty settling with her distressing symptoms. I was so humbled by the lengths that the team went to try to offer some comfort and relief. She did settle at around 2am – that’s the norm for that little one, and her family.

    ---

    The one that has stayed with me was a home visit with our SEL Care Team. With Mum’s permission I was allowed to go on a first visit. From the primary diagnosis alone it was clear that the child would definitely meet our admission criteria. It was such a privilege to be there. The Mum didn’t want pity, she wanted practical help, and fast.  She was socially isolated from her family and friends. She lived in a beautifully kept maisonette that she couldn’t get her child in or out of due to the steps and her child’s prolonged seizures. She couldn’t use public transport and had spent the previous 10 months in King's College Hospital. The child had a central line making bathing problematic and she wanted support to be confident to do that.

    I found myself talking about acrylic nails and Justin Bieber in a conversation lead by Mum who said she stared for hours at CBeebies before she realised that her child was sleeping. I am hoping I was slightly more entertaining, although the extent of my knowledge on acrylic nails and Justin Bieber is somewhat limited! She asked what the hospice looked like, and would she be able to talk to other Mums. Could we help her get there and could she stay for a day to see if she liked it. I have worked at Demelza for twenty years and I have never been prouder to say that Mum and Son are regular attenders at the Eltham hospice where they have met new friends and have been given tremendous professional support.

    ---

    I am working with Kent Housekeeping next month, with another stint in the garden planned for September and 2 half days with our fantastic Income Generation team.

    Where will your Work in Their Shoes be?

  • Work In Their Shoes with Sophie - Events Team

    by Sophie Batchelor | Aug 06, 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.

    Like many people, I will only tolerate having to set an alarm for three o’clock in the morning if it’s because I’m heading to the airport to go on holiday. My multiple alarms set for one Sunday in July weren’t for a flight however, but an equally thrilling journey in a Luton van to Avery Hill Park in Greenwich; the site for our London Bubble Rush event; a 5k fun run through multicoloured bubble stations. At 4am I met Kat and Beth from our fab Events Team and we travelled up together, seeing in the dawn somewhere between the M2 and the A2, Jammie Dodgers (a.k.a. The Best Biscuits On The Planet™) close to hand.

    Our first challenge of the day met us before we’d even left the vehicle, as we discovered the key we’d been provided to gain access wasn’t the right fit, but we soon managed to solve the puzzle by trying another gate, and then we were in!

    On paper, getting up in the wee small hours on a Sunday to put up gazebos in the rain sounds like a miserable prospect, but there was a real buzz in the air seeing all the equipment get unloaded from the van and transform into an events village that would soon be bursting with music, colour and hundreds of families.

    Once we’d put up enough gazebos to shelter under, we had a quick break for a McDonald’s breakfast and continued with the set up. Other staff and volunteers began arriving to lend a hand and we were given a team briefing by Kat so we were prepared for all eventualities, ready to get in position for our individually assigned roles. The Events Team really do think of everything – something that comes with learning from their years of experience. There will always be something to surprise us, like the missing pink scooter I managed to track down!

    My role for the day was to be one of the event runners, which meant I was available to step in and help if anyone needed some logistical support. I had a radio with earpiece and was trained on the proper protocol and etiquette for the airwaves. We had eyes and ears all over the park which helped us respond to questions and challenges quickly and smoothly. It would be easy to spend the day in fear of something going horribly wrong, but the team were so well prepared that it was reassuring to see everyone helping each other and working so dynamically.

    Once everything (and everybody) was in place, we were ready to welcome our guests and give them the full experience, from warm ups and entertainment to sweatbands and coffee, before getting the first wave ready to go through the bubbles! I was called over to help manage the flow through the start gate, as safety is always our most important priority. There’s something about the bubbles which delighted all ages, and they couldn’t wait to get in and cover each other with the foam until actress Sally Lindsay started them off to the sweet, sweet sound of an air horn. I would like to note at this point that during the Bubble Rush in Mote Park two weeks prior, I was lucky enough to be standing on the starting platform with actor Harry Reid and our very own Chief Executive, Ryan Campbell – who had charge of the air horn – and proceeded to blow it with gusto in my direction. Thanks Ryan!

    I picked up various tasks throughout the day, running items hither and thither or scouting around for lost items. I went with Beth to check that the portaloos were in good clean working order and stocked with supplies – a dirty job, but with over 2,000 people on site it was a very important one!

    The absolute highlight of the day for me had to be walking the opposite way around the route with Beth and high-fiving as many bubblers as we could – young and old - with our foam hands. It may sound like a load of giggles but there’s plenty of serious business too, like making sure we were periodically relieving stalls of cash and keeping it safe. Events like the Bubble Rush help us to raise the much-needed funds to continue providing care and support for children and families in our area. Overall, our Bubble Rush events this year have raised over £155,000 – which is an incredible amount and one we are all really proud of. As a charity, Demelza needs to raise more than £10 million every single year to keep supporting hundreds of families across Kent, East Sussex and South East London – 88% of which is generously donated by our local community.

    By the end of the day I’d hit almost 30,000 steps on my fitness tracker – a score which Kat and Beth had both trumped me on. We packed up and made a couple of pit stops before parking the van back at Demelza Kent to be unloaded the next day. We were very, very tired, but very, very satisfied with another great event.

    See the ultra-glamorous life of an Event Fundraiser for yourself on Facebook or Instagram!

    Get your tickets for Bubble Rush 2020 at www.demelza.org.uk/bubblerush2020

    Until next time,
    Sophie

  • Demelza celebrates 15 years of outstanding care in East Sussex

    by Sophie Bourne | Jul 17, 2019

    Supporters, fundraisers, care staff, volunteers and local businesses got together at St Elisabeth’s Hall in Eastbourne to celebrate providing 15 years of outstanding specialist care to children with terminal conditions and their families in East Sussex.  Demelza  merged with James House, a charity established in East Sussex by Robin and Mary Gooch following the death of their 11-year-old son James, in 2004.  Demelza has continued to provide therapies, respite and end-of-life care in the comfort and security of a child’s own home across the region ever since.

    The party recognised the huge contribution of volunteers, local businesses and supporters that enable Demelza to provide specialist care services across East Sussex 24 hours a day, 365 days a year, completely free of charge.

    Businesses from the area donated refreshments and the cake was made by Jenna Heritage from Demelza’s care team and cut by Connie, who uses Demelza’s services.  Speakers on the night included parent ambassador Stephen Spendlove, who's  daughter Bethany is supported by Demelza, Jane Streeter and Donna from the Care Team, and Ryan Campbell, Demelza’s Chief Executive.  Demelza Trustee, Adeel Q. Khan, and representatives from MTECH, Framfield Stagers, Arlington Bluebells and friends of Sussex Hospices, to name but a few, also attended the event.

    Ryan Campbell said “I am so proud of the work we do at Demelza in supporting children with terminal conditions and their families. A heartfelt congratulations to all of the team across East Sussex – including the care staff, fundraisers and the volunteers who keep everything running. This incredible team ensures Demelza provides care and support to families when they desperately need it. Here’s to another 15 years of outstanding care.”

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  • Avast CEO donates his director's fee to Demelza

    by Sophie Bourne | Jul 17, 2019

    If you’re not an avid reader of the business press, you may have missed the announcement last week that Ondrej Vlcek, recently appointed Chief Executive Officer of Avast, has generously donated 100% of his director's fee to support the work we do at our hospices in Eltham and Kent and across the community in East Sussex. 

    Ryan Campbell, Chief Executive at Demelza, said “We are absolutely delighted to receive such a fantastic and generous donation from Ondrej himself – it demonstrates such incredible values of a CEO to do this.  For Demelza this donation comes at a time when children’s hospice funding is under considerable strain.  We are nearly entirely funded by generous donors -  88% of our funding comes from our supporters and we could not offer the specialist care and emotional support to our children with terminal conditions and their loved ones that we do without the generosity of our donors. Thank you so much to Ondrej for this incredibly selfless gesture”.

    This donation will go towards helping families like Elliott's (pictured). We are excited that Avast’s support will not end with Ondrej, this ongoing donation is only the beginning of our partnership with Avast in the UK. We will be engaging their staff through fundraising and volunteering activities at their London office as well as utilising Avast’s considerable knowledge and expertise in the safety, protection and products arenas to contribute to potential pro-bono projects for Demelza staff, children and families. 
  • Thousands enjoy Bubble Rush in Eltham

    by Sophie Bourne | Jul 12, 2019

    Once again, our amazing fundraising team pulled off a hugely successful and enjoyable Bubble Rush event, despite some slightly damp conditions!  The second Bubble Rush of the year took place at Avery Hill Park, Eltham on Sunday 7 July.  The event, which was started by Sally Lindsay, best known for roles in Phoenix Nights, Coronation Street and Still Open all Hours, saw 2000 runners, walkers, pushchairs and wheelchair users run, walk and toddle through a sea of bubbles.

    Participants of all ages made their way through 4ft walls of coloured foam bubbles, going twice around a 2.5 km course at the park and getting covered in multicoloured bubbles in the process.

    Each of the 3 waves began with an energetic warm up and competitors were encouraged on their way by Sally Lindsay, whose boys wasted no time in wading in to the sea of coloured foam.  Compere, Rob Johnson, kept the crowds buoyant and the event had a festival feel with stalls selling Demelza merchandise, as well as food and coffee stalls.  Families and friends brought picnics to enjoy the lovely park surroundings and join in the fun.

    Sally Lindsay, who set off the first two waves of runners, said “This is a fantastic event and I’m so proud to be a long-term supporter of Demelza.  Funds raised today will go towards supporting children and families who access Demelza’s vital services.  Thanks to everyone who made this such a successful day”.

  • Eltham Summer Party - Richard Jones

    by Sophie Bourne | Jul 03, 2019

    Lance Corporal Richard Jones, the only magician to ever win Britain’s Got Talent, popped in to the Metrogas Sports Club in New Eltham on Sunday 30 June to entertain some of our children and families in honour of our Eltham hospice’s 10th anniversary. 

    The Care team organised a fantastic summer party with families making the most of the warm weather, enjoying a performance by a Royal Mail choir, and circus entertainers, whilst relaxing in the gardens with tea, cakes and a BBQ.  Police horses and a local fire engine also dropped by and Demelza’s fantastic team of volunteers ran a tombola, raffle and plant stall.

    Richard Jones performed a spectacular routine to an enthusiastic audience, enthralling children and adults alike with his sleight of hand and spent time with the children individually, entertaining them with his magic tricks.  Richard, Ambassador for Together for Short Lives, the UK charity for seriously ill children, said “I’ve had a lovely afternoon spending time with such a responsive crowd, thank you very much to Demelza for inviting me along.”

  • Children's Hospice Grant

    by Sophie Bourne | Jul 02, 2019

    Children’s Hospice Grant

    Last night it was announced in Parliament that the Children’s Hospice Grant will increase to £25m, ringfenced for hospices and distributed centrally rather than through a complex matrix of local NHS organisations.

    This is the entirely successful outcome of a campaign fought by children’s hospices, our national advocates Together for Short Lives and Hospice UK, the All-Party Parliamentary Group for children’s palliative care, and lots of other helpful and influential/persuasive people.  It is everything we have asked for in this particular campaign.  We are all delighted, and so grateful.

    But I’ve been feeling just a little bit awkward, and guilty, throughout.  It’s a feeling I’ve put to the background and not vocalised but this is why: the most successful hospice campaign since the one that founded the grant in 2008 has once again been about organisations and their funding, not directly about families in need. 

    Of course, the two are inextricably linked.  This campaign had to happen and was the right thing to do.  Hospices are already closing and cutting back due to a funding crisis, and if that goes much further the consequences for children with terminal conditions are dire.

    But I suppose what I’m trying to say is that I would much rather be voicing a campaign that wasn’t just about the funding of organisations, but about the children and families too, because many of them are suffering unnecessarily.  They are not suffering needlessly because of the health needs of their children, but because they are not getting the services, support or in some cases income which is required to lead a decent life when you have a child or children with very serious and complex conditions.

    The best bit of yesterday’s announcement is the bit we haven’t given as much attention to yet, but it’s potentially much, much more important than hospice funding, as important as that is.  This is a quote from Simon Stevens, CEO of the NHS:

    “We also recognise that palliative care services provided by children’s hospices are currently not universally available. We will therefore run a needs assessment to understand whether additional investment nationally or from CCGs is required where palliative care is provided by other means.”

    This is hard to decipher.  But what it could mean is a wider examination of children’s palliative care in its entirety.  That could lead to an understanding of what must be available in every area, and a funding settlement that will deliver it.  This is massive because:

    • Support to families with palliative care needs is inconsistent to a huge degree, with black holes of lack of service in some areas that don’t even know there are black holes
    • This doesn’t just cover children’s hospices; it’s everything (NHS, social care, education, communities…).That’s a total budget that dwarfs £25m by an amount I can’t even work out, but it’s substantial
    • For the first time children’s hospices and statutory services could be looked at as a single system, not the statutory system plus hospices as a nice-to-have on the outside.That will involve hospices having to get over their inherent isolationism and start to fit in better.I’m up for that challenge
    • For the first time ‘children’s palliative care’ might be considered as a defined category of service delivery.It is what children’s hospices do, but in the statutory world at local level the specific field of children and young people with terminal conditions is not seen as a service area in itself – it is a small subset of the overall sphere of children with disabilities.There is some government and clinical guidance which covers palliative care, but it tends to be focussed on the end of life stage, not on whole-life care

    There will be battle lines and engagements drawn up and questions that need to be answered.  If we all get it wrong, then essential services like short breaks, post-bereavement care or support to siblings might get left out.  If we get it right, we might find the best way to spend the limited resources we have.  That would be a million miles better than what we have at present.

    I am delighted to be sitting on the NHS working group looking at this.  A working group can’t do it though.  It will also need widespread engagement from local statutory bodies for instance.  And it needs to be guided by the young people and families affected.

    Children’s hospices are great at being a rallying call for the voice of children and families.

    Now THAT is what I want to be campaigning on….

     

    - Ryan Campbell CBE, Chief Executive Officer 
  • Bethany's story

    by Sophie Batchelor | Jun 22, 2019

    Bethany was born with a congenital heart disease called Hypoplastic left heart syndrome (HLHS) and an underdeveloped aorta, which restricted blood flow through her heart. Her mum, Sabrina, told us their story.

    “I learned that something wasn’t right with the baby during a routine 22 week pregnancy scan at Kings College Hospital, where I work in Maternity. Afterwards, it felt like all I could hear was white noise and I just cried my eyes out. I went back to my colleagues, who were so supportive. One of the consultants took my scan report to another and they sat and read it, and they were the ones who mentioned the possibility of HLHS before it was even verified.”

    Sabrina’s care was transferred to St Thomas’, where cardiac specialists conducted more tests and HLHS was confirmed. Bethany was born on 10 May 2018, and her family, including Dad Andy and brothers Kameron, seven and Joshua, four, had to face knowing that their little girl would have a difficult start in life, with numerous surgeries needed and the constant threat of infection.

    “I was adamant that I wanted her home,” said Sabrina. Bethany did indeed make it home in the August of that year, but only for three days as she’d contracted sepsis. “She fought the sepsis and we got to home again, but we went back the same day because she still wasn’t right.”

    Because of Bethany’s condition, it was too difficult to give her the eight different medications she needed with an intravenous line, which meant she needed an uncomfortable Transhepatic line directly to her liver. “Her veins were rubbish, just like mine – she got that from Mummy. She looked like a pin cushion,” recalls Sabrina. “The line had to be removed, and we were told that once it was out, she would only have between eight and 24 hours to live.”

    But tiny Bethany continued to fight. The family were referred to Demelza beginning of October by the children’s palliative team at Evelina London Children’s Hospital. “I was scared of the word hospice at first,” Sabrina admitted. “The thought of palliative care really scared me. Some of the nurses from Eltham came to see us, sat with us and chatted to us. We came straight from the hospital to Demelza with Bethany for step down care.

    Upon arriving at Demelza, it was so different to what we imagined it to be. The atmosphere was lovely – it was like a home from home. Everyone was so friendly and loving to our family, the care assistants and nurses were looking after the boys and we didn’t have to worry about anything but Bethany. It was so nice not to think about what we were going to have to eat or cooking dinner. They took care of anything we needed.

    Bethany had a room downstairs, and we were given a family room to stay in upstairs, but we also had the choice to sleep on little beds in her room if we wanted to stay near her. We had time to catch up on some sleep after being dealt the blow that she wasn’t going to survive, but she did – she lived for another four months.”

    Sabrina and Andy were able to take Bethany home to care for her themselves, and not only did they get to spend Christmas together, but both Daddy and Mummy’s birthdays. “We were actually staying at Demelza for respite care on my birthday, and the care team told me to go and enjoy myself, so I got to stay with Bethany all day and go out in the evening for a bite to eat with my friends.”

    Even with the support of Demelza, Sabrina, Andy and the family lived with the constant uncertainty that any moment spent with Bethany could be their last together.

    “She was a smiley girl who seemed to have thrown away the rule book. She’d just started to learn how to grab her tubes out - she was cheeky, but she could get away with it.”

    At the beginning of February, Bethany had caught a head cold that began to spread to her chest.

    “My instinct told me something wasn’t right with her breathing, and I was worried about her, so I liaised with the out of hours palliative care team overnight,” Sabrina said. “The GP came in the morning and immediately called an ambulance because her chest sounded so ‘crackly’, so she was taken straight to Evelina.

    The nurses there had been taking care of Bethany since she was three weeks old. They wanted me to get some rest, because I hadn’t slept or eaten. I was so used to providing 24-hour care at home for her, but they reassured me they would give her the care that she needed, so we went home. I spoke to them that night at 11.30pm, and she was still the same as when we left her. The next morning we received a phone call at 6.00am to tell us that Bethany was in cardiac arrest. By the time we got to her, she had died.

    I did her last rites and I washed and dressed her, which is something I’ve done for other parents in my job at King’s, but it was different when it was for my own child. I just couldn’t get my head around it. We had forgotten how poorly Bethany was on the inside because she’d been putting weight on, she was smiling, she was bouncing back. But we have those nice memories of her to look back on. Considering her diagnosis, she did really well.”

    The family were able to take Bethany to Demelza’s Eltham hospice just a few hours after she had died, to stay in one of their specialist Bereavement Suites.

    “We found it very therapeutic to be able to use the Bereavement Suite at Demelza. It was nice to just sit there and hold her, and to have her for that little bit longer. Family members would take the boys out for a bite to eat and Kameron would come straight back into the Butterfly room to see Bethany, because he wanted to check on his little sister. The nurses and carers were so soothing and supportive at such a difficult time. Everyone did everything they could to make sure we were okay and had everything we needed. Even Amelia, our Family Support Worker, would bring sandwiches up from the kitchen on a trolley to make sure we were eating.

    We were able to get Bethany’s hand print in the middle of one night with the help of the nurses, and the next day we let the boys add theirs to the canvas so we could have all three children together on the canvas. Having family come to visit Bethany in the Bereavement Suite and having access to the family lounge really opened everyone’s eyes that a hospice isn’t as scary as you first think.

    We’ve got a teddy bear made out of Bethany’s baby clothes, which has got her ashes inside. The boys treasure it and so anywhere we go, Bethany comes too. They’ll always be her big brothers. It’s so nice that we’ve still got the support of Demelza as a family – they haven’t forgotten about us even though Bethany’s not here with us anymore. Amelia from the Family Support team has been supporting the boys, she goes to their school every week.

    It would have been Bethany’s first birthday in May. We made her a birthday cake in the shape of a number one and lots of her family released balloons with messages tied to them. I would rather have done something to celebrate her life than sit at home and mope. We’ve been doing loads of fundraising for both Demelza and Evelina, and we want to raise as much money for them as we can.

    I’ve realised that we won’t ever get over our grief, but we can learn to live with it. I don’t think you ever get used to it. We have good days and we have bad days, but we’re getting there. We can’t fault the support that we’ve had from Demelza, and still receive. They were so attentive and supportive, and made the experience so much better than it could have been.”

    Can you spare a few pounds to help more children and families? Please make a donation to our Bereavement Suite Appeal here.

    Thank you.

  • Demelza's CEO calls on government to commit to increase funding for children's hospices

    by Sophie Batchelor | Jun 19, 2019
        

    Demelza’s Chief Executive, Ryan Campbell CBE, is calling on the government to guarantee more funding for children’s hospices across the country during Children’s Hospice Week.

    On Tuesday 18 June, The All Party Parliamentary Group (APPG) on children’s palliative care hosted a drop-in session to mark Children’s Hospice Week 2019 which is running until Sunday 23 June. MPs, Peers and non-Parliamentarians dropped in throughout the day to hear from children’s hospice Chief Executives, including Ryan Campbell, bereaved parents and representatives from NHS England on how the current funding system is impacting on the delivery of children’s hospice services.

    In his address to the group, Ryan stressed the need for government to address the difficulties with continuing to raise funds faced by hospices up and down the country, with an ever-increasing demand for children’s palliative care services.

    “The fundraising activity has to be continual. Demelza are very, very fortunate in Kent and the rest of the areas that we serve that people are very generous – we only exist because of that generosity really.

    We don’t hope to be here forever; we need to be here forever, because the number of children with terminal conditions is quite rapidly increasing because of those advances in medical science. That’s a great thing, but unfortunately the funding within the health service to manage the level of need that’s there isn’t keeping pace, so that’s where we have to step in really, and we can only do that with the support of everyone out there who helps us get the money in.”

    Between 1 and 2pm, Dr Caroline Johnson MP and Catherine McKinnell MP chaired a round table discussion to learn in greater detail about NHS plans for future funding.  The drop-in session continued throughout the afternoon, with visits from, among others, Caroline Dinenage, Minister of State for Social Care, Rehman Chishti MP for Gillingham and Rainham and Roger Gale MP for North Thanet. Leading figures from children’s hospices asked government to work with them on a long-term solution. Speaking to Nicola from KentOnline, Ryan explained the core reason behind their campaign for greater funding:

    “In the latest NHS England Long Term Plan they have made a commitment to increase funding for children’s palliative care, but that’s only to £25 million across the whole of the country and none of that is allocated specifically to children’s hospices. Although £25 million sounds like a lot of money, actually when you divide that up across the whole of the NHS local authorities and hospices, it really isn’t very much at all. There is certainly some listening going on from some parliamentarians and some people in government but what we’re not yet seeing is this commitment to ‘Yes - the need is there, yes – the need is increasing, yes – children’s hospices cannot be expected to fund forever an increasing rate what they’re currently doing’.”

    Earlier this week, HRH The Duchess of Cambridge has sent a Royal message of support to celebrate & mark Children’s Hospice Week. She described children’s hospices as ‘vital sanctuaries for those experiencing the very toughest of times’ and ‘a lifeline to children and families for however long support is needed’. You can read her full letter on Together for Short Lives’ website here.

    To listen to Ryan’s full interview, visit KentOnline.

  • Why memory making is important for grieving families

    by Sophie Bourne | Jun 14, 2019



    What are memories? Memories reaffirm that loved ones will go on living in our hearts and minds, and that they will always be an important part of who we are. By taking time to do things to remember the deceased, we keep their memory alive. They are a part of us, and we a part of them.

    Memories are made naturally throughout life and are created from attending special occasions or outings and sometimes simply through daily, spontaneous moments. It could be a funny mishap, a first trip on a boat, the feeling of touching a dog’s fur for the first time. A memory is attached to a moment in time; sacred, special and unique.

    For families caring for a child with a terminal condition there is a heightened importance in retaining these memories so they can be revisited and drawn upon after the child’s death.

    When a baby dies, the mum is given very few choices as to medical procedures, and she may feel as if she has no control over her body. Memory making helps the family weave the baby into the fabric of their lives and continue parenting the baby. Not being offered the opportunity can have a detrimental effect and interfere with grieving. Limbo and Kobler (2010) reported that mothers who do not spend as much time with their baby as they want can experience a seven-time greater risk of developing depression.

    Journal writing is another way of healing through memory making. “I remember thinking… how can I ever be happy again?” said Sandy, a bereaved mother who wrote an open letter to fellow grieving parents for HuffPost. “I felt as though my pain was visible to others, and I would forever be wearing grief as a mask and a tagline…”I’m Sandy and I’ve lost a child.”

    “Then a friend gave me a journal and said, “Write. Just write.” The first blank page was so difficult. I could only put down one sentence, “My son died and my life will never be the same.” The next day, I wrote a paragraph, and each day after that I found words came more easily. My journal became my safe haven to empty the well of my sorrow, pouring tears of ink onto paper”

    There’s no magic secret to the journal. Just pick up a pen and begin with one word or sentence. Keep writing. Healing is not on a timetable. In fact, time doesn’t fix this kind of loss. Healing comes from actively pursuing life again. After a while, you’ll look back on your words and not recognise the person you once were. You’ll see how strong you really are.”

    Some examples of memory making include:

    § Time spent with family and friends

    § Sibling/family activities such as cooking together, games

    § Holidays

    § Day trips and outings such as going to the zoo

    § Plaster/Ink hand and footprints

    § Photographs and videos

    § Scrapbooking photos or craft

    § Lock of hair

    § Comfort objects- blanket, cuddly toy

    § Special items of clothes

    § Jewellery

    § Planting a tree or a plant

    § Lists of favourite sayings, toys, etc

    § Preparing favourite foods

    Whether their life lasted many years or just a few moments, each child earns the right to be remembered by those who loved and lost them. Memory making is a vessel in which to capture the love a family has for the child after they have died.

    “Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”
    ― Jamie Anderson

  • Skating legend Robin Cousins visits Demelza

    by Sophie Bourne | Jun 10, 2019

    Staff and children were treated to a visit from Demelza Vice President, Robin Cousins, and his therapy dog, Monty, on Wednesday 5 June. 

    Robin and Monty 02

    Robin, who has been a passionate supporter of Demelza for over 15 years, spent some time chatting to Demelza’s retail and trading teams, as well as meeting children attending the Little Dots session.  

    Robin said “Demelza is so special – families come here and are taken care of by the best”.  Monty thoroughly enjoyed his afternoon being petted by the children and snaffling left over crisps!

  • Eight books to comfort a bereaved sibling

    by Sophie Batchelor | Jun 08, 2019

    The death of a sibling can be an unsettling time for a brother or sister as they encounter many feelings surrounding their grief, many of which will be new and difficult to understand. A child may feel their loss in a different way to their parents and have a lot of open-ended questions. Our Family Support and Therapies teams are trained to help siblings work through their emotions and questions, often using workbooks. Books and storytelling are a powerful way for children to relate to their situation, and to be able to fully comprehend what death means.

    For our Bereavement Suite Appeal, here are some recommended books to help a sibling through this very confusing and sad time, to celebrate a life as well as to mourn it:

     

    Always My Brother by Jean Reagen

    Always My Brother is a sensitive, realistic story about the process of grief, acceptance, and recovery. Phyllis Pollema-Cahill's lovely illustrations bring readers right into the heart of Becky's family as they struggle to move forward and enjoy life again after the loss of her brother, John.

    No Matter What by Debi Gliori
    This is a beautiful picture book for younger children about an unconditional love that continues even when we are gone. This one may be especially helpful for children who may be afraid to show their grief for fear it may impact the rest of their family.

    The Dragonfly Story by Kelly Owen

    For those with a faith or belief in heaven, this one is ideal. Using the tale of the waterbug and the dragonfly, this story follows Jenny and Joe after the death of their sister Abi.

    Good Night, Mr. Tom by Michelle Magorian

    A timeless story set in the time of World War Two, where evacuee Will is sent to live with grumpy widower Tom. The loss of one of his friends is utterly devastating and Will’s grief is accurately and poignantly captured by Magorian. One that acknowledges a range of emotions and doesn’t shy away from the reality and pain of bereavement.

    Losing Someone You Love: When a Brother or Sister Dies by Elizabeth Richter

    Sixteen young people between the ages of 10 and 24 recall siblings they loved and express their loss. One for young adults, the experiences shared here will encourage others dealing with a similar pain.

    What Does Dead Mean? By Caroline Jay

    A beautifully illustrated book that helps to answer some of the questions children may have about what it means when a loved one has died.

    Michael Rosen’s Sad Book

    Written after the loss of his son, this honest portrayal of grief shows it’s okay to feel sad, accompanied by exceptional illustrations by Quentin Blake.

    The Invisible String by Patrice Karst

    A mother tells her two children that they are all connected by an invisible string. “Even though you can't see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love.”

    £5 could pay for a book for a brother or sister, to help them understand and cope with their grief. Please support our Bereavement Suite Appeal by making a donation at https://www.justgiving.com/campaign/bereavement

    Thank you.