• 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.

  • Felicity shares her experiences for #VolunteersWeek

    by Sophie Batchelor | Jun 06, 2019
    Over half of our 1000 volunteers lend a hand with our Trading team, keeping our 28 shops and distribution centre running smoothly and helping to bring in the much-needed funds for our services. Here, Felicity shares her experience as a volunteer in our Tenterden shop.

    “After I moved to Tenterden from West London I was looking for something to do with my time that would also be a great way to make new friends in the area. I’m an ex-teacher so I knew I wanted to do something that helped children. Back when I was at university writing my thesis I visited a children’s hospice as part of my research, so when I heard about Demelza I knew it was exactly the kind of thing I had been looking for. I began volunteering in Demelza’s Tenterden shop and have been here for more than two years now.

    Somewhat unusually, I was the only female volunteer! I work with Dave and John and I love their company – it’s a great team and I get on well with everyone. I help out by working on the till, which is fantastic because I love meeting new people and chatting with our regular customers. People in Tenterden are very aware of Demelza and the important work the charity does, which is lovely.

    I also loved going to Sittingbourne for a tour, and Chief Executive Ryan answered all my questions! It was great to see first-hand what my time is helping to support and learn about the impact Demelza’s volunteers have on the services for children and families. I found the hospice so colourful, bright and cheerful – a very welcoming place.

    I’m so pleased and proud to be a volunteer for Demelza and would encourage others to give it a try – there are so many areas you could lend a hand with or bring your skills to. By giving a few hours of you time to help children and their families, you do feel that you are doing an extremely worthwhile job."

    Want to join #TeamDemelza and give the gift of a few hours in one of our shops? Check out some of the exciting roles we have available here.

    For a sneak peek at life behind one of shop fronts, watch January's edition of Work In Their Shoes with Sophie when she was put to work in our Rochester shop!

  • Cultural diversity within bereavement at Demelza

    by Sophie Batchelor | Jun 01, 2019

    London is one of the most multi-culturally diverse cities in the world with over 300 languages spoken in our capital city. As an organisation that works hard to empower families to make choices around their child's care, our teams at Demelza support a variety of cultures, faiths and spiritual beliefs. We know every family is unique and do all we can to allow them the opportunity to honour their child according to their wishes at end of life. Demelza's Director of Care, Beth Ward, explains how we achieve this in a guest blog for our Bereavement Suite Appeal.


    Background: Approximately half of families accessing Demelza South East London are from Black Asian Minority Ethnic (BAME) backgrounds, which is very much representative of the communities Demelza serves.

    Demelza understands that a child’s death has a wide impact not just on their immediate family but socially and culturally, amid complicated cultural meaning. It is also important to understand that this is a time of tremendous vulnerability for families and it is so important to realise that ideas about death and dying are not universal across or within cultures.

    Culture: Demelza understands that culture is fluid and not a fixed to a set of principles. Valuing and respecting cultural diversity is very important, it is about negotiating care and support when at least some beliefs, values and attitudes and experiences differ between families and Demelza’s teams.

    It is important to value and respond to cultural difference, avoiding stereotyping and vital that families are asked for their views and preferences. Much of Demelza’s focus is on enhancing the team’s communication skills, rather than learning about cultures per say, and making sure, where possible, that families’ expressed wishes are respected and carried out. 

    By building an understanding and knowledge of families’ cultures, Demelza’s teams learn to value, promote and support cultural differences. It would be all too easy to impose personal beliefs on to families, expecting them to follow others’ practices.

    To give an example, a mother, on realising that her baby was nearing death, carefully placed her on her bed and stepped away, rather than cuddling her and holding her close. Later she explained that in her culture it was important to let loved ones “leave freely”, without holding on and, by physically letting go, her spirit was free to leave peacefully. It would have been easy for Demelza’s Care Team to encourage this mother to cuddle her baby, which would have reflected individuals’ own views of a meaningful death and not necessarily in keeping with her mother’s beliefs.

    When talking with families, it is essential to convey openness. Families rarely mind being asked about their faith or cultural practices around death. Choice is crucial. Spiritual faith and faith in God is of utmost importance to some families and Demelza works closely with local Faith Leaders to ensure that the child/young person’s spiritual needs are met.

    Post Death Care: When considering cultural preferences, it is very important not to generalize, but most crucially ask families about their individual faiths and beliefs and how they would like to be involved in their child’s care after death.

    For some, it is forbidden for parents to see their child once they have died and the responsibility of preparing the child’s body for burial or cremation is with the Elders within the families’ community. To give an example, one mother explained that it was forbidden for her to see her child after he had died, as if her tears were to fall on him, he would have an unhappy “afterlife”.

    Opposing this, within some post death practices, it is very common to have a strong community presence, with a particularly high number of visitors, who may wish view the body of the child who has died, as a mark of respect. Irish Travelers and Romany Gipsy families will travel for miles to support a child who is end of life, ensuring that the child is never alone.  With both cultures, there is a constant flow of visitors after death, who come to pay their respects to both the child and family. 

    Caring for the Whole Family:  Some parents are separated or estranged, and  it is clearly really important to work with both parents, ensuing that each have a private space to be with their child and say their ‘goodbyes’.  This is often managed by carefully negotiating the timings of visits and being clear of the needs of both parties.   

    Occasionally, there may be conflict in what is shared with other family members, especially children. In this situation, it is important to respect families’ views, whilst maintaining honesty in communication. What Demelza aims to achieve is that parents, brothers and sisters and those who love the child find peace and build their story, continuing their lives with very positive memories of their child and, most importantly, with no regrets.

    by Beth Ward

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

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

    by Sophie Batchelor | May 30, 2019

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

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

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

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

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

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

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

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

    By Millie Mae's mum, Emma.

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

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

    by Sophie Batchelor | May 25, 2019

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

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

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

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

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

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

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

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

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

  • Lucy's story

    by Sophie Batchelor | May 24, 2019



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

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

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

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

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

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

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

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

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

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

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

     

  • Bereavement Suite Appeal launched to help grieving families

    by Sophie Batchelor | May 22, 2019

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

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

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

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

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

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

  • Six ways to support a grieving parent

    by Sophie Batchelor | May 19, 2019

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

    1. Be an extra pair of hands

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

     

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

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

     

    3. Let them cry, and cry with them

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

     

    4. Listen

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

     

    5. Be the person you have always been to them

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

     

    6. Remember that grief has no time-limit

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

     

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

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