When little Alfie Johnson was born the world was perfect – until doctors revealed he had suffered life-limiting injuries during birth. Dad Paul tells the family’s heartbreaking story as they remember Alfie’s life and beautiful smile as part of Acorns Children’s Hospice’s emotional Celebrate Your Star campaign. Now read their story and watch the video below.
‘A day we’ll never forget’
Alfie’s nursery was painted, his new cot was ready, and first-time dad Paul ecstatically phoned around the family with the joyous news of his son’s birth. Despite Alfie being born blue, nurses said it was nothing to worry about and he was taken as a precaution for neonatal care.
“I was so proud, he was moving around and kicking and I remember saying excitedly to my wife Vickie: ‘Look he’s going to be a footballer’,” Paul recalls.
Heartbreakingly, Alfie wasn’t just wriggling and stretching – he was, in fact, having a seizure.
“That’s when the walls closed in,” Paul said. “You’re taken into that quiet room, and the door is closed behind you, and they told us Alfie had suffered permanent brain damage during labour.
“We were heartbroken – destroyed. We’d never experienced such a high, and then four hours later, we have never experienced such a crushing low. It’s a day we’ll never, ever forget.”
Unwavering love and care
The family is telling their story and remembering Alfie’s life as part of Celebrate Your Star – a moving, festive campaign from Acorns Children’s Hospice which invites people to pay tribute to much-missed family members by dedicating a star in their memory and making a donation towards the charity’s vital care for seriously ill children.
In return, a beautiful star keepsake will be sent to their home, and another hung on trees at special festive events across the region on 6th and 7th December, to which everyone is invited to attend.
Alfie fought against the odds and after three weeks in hospital was discharged. He was later diagnosed with Hypoxic-Ischemic Encephalopathy, a term for a brain injury that happens when it does not receive enough blood or oxygen during birth.
Despite having multiple complex medical needs, Alfie was given unwavering love and around-the-clock care he needed at home. It would be six years before he and his family visited Acorns Children’s Hospice for the first time.
Hospices aren’t just a place to die
Paul said: “We’d been aware of Acorns for many years, but it isn’t what people expect. Hospices aren’t just a place for people to die, they’re very much a place for people to live.”
He added: “When I walked through the doors of Acorns, everything was bright, people were so friendly, and nothing was too much trouble. For the first time in our lives, we were able to leave Alfie in the care of someone else. They were a saviour to us.”
Alfie had regular stays at Acorns and his family have very happy memories of their visits, taking part in many joyful activities, including Christmas-themed events.
At the same time the family could rely on Acorns expert children’s nurses, health care assistants, tailored medical care, rehabilitative respite, and a range of specialist therapies.
“We had very special times for many years at Acorns,” Paul said. “Although Alfie couldn’t talk, you knew exactly how he was feeling. When he was happy he had a big, beautiful smile.
“He was a wonderful character an in between the difficult moments, he brought a lot of joy to a lot of people and he was smart too.”
Sadly, just days after Alfie’s 16th birthday he became critically ill and he was transferred to Acorns for end-of-life care. After his death, Alfie’s memory has continued to live on with a JustGiving page, and through the charity that family and friends had earlier set up in his name in 2009 called the Friends of Alfie Johnson. Together the family has raised more than £38,000 for Acorns.
Paul said: “Christmas is a special time, and we always set a place for Alfie at the table. Things will never be the same, and you never get over losing a child, but there’s so much of Alfie’s life to celebrate.
“Everyone who’d ever met him, and anyone who had the pleasure of knowing him, will remember his smile. His smile will stay with us forever. Alfie is a star who still shines.”This Christmas, the family will continue to remember Alfie’s bright shining light through Acorns Celebrate Your Star, kindly being sponsored by award-winning law firm Irwin Mitchell.
Ben Gilchrist, In Memory Manager at Acorns Children’s Hospice, said: “By dedicating a star you will help give the children and families who use Acorns invaluable memories throughout the festive season and into the New Year and to keep forever.”
He added: “Together, our galaxy of stars will help give the children and families who use Acorns magical moments throughout Christmas and into 2026. When you choose to Celebrate Your Star your gift will be a light in the darkness.”
For further details about Celebrate Your Star and how you can celebrate the memory of a loved one visit www.acorns.org.uk/star
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with more than 70% of that amount coming from generous donations and fundraising by the local community.
A very special celebrity gardener was invited along to open a brand new garden at Acorns Children’s Hospice in Walsall – completed after years of planning and months of construction work.
TV gardener David Domoney, famous for Love Your Garden and appearances on This Morning, cut the ribbon to the garden with a host of invited guests.
The £200,000 project was only made possible with generous funding from Greenfingers, a charity which creates gardens for children in hospices across the UK.
‘The Centred Garden’
It features colourful zones for children’s activities, sensory enhancements, paths and arches, a sunken trampoline, and a basket swing. Every bedroom in the hospice looks out onto the new garden, which also features planters, and multi-coloured canopies.
The designs were created by VaRa Garden Design together with the team at Taylor Landscape and Design Ltd.
It has been named ‘The Centred Garden’ and a special sign was also unveiled.
Linda Petrons, Director of Fundraising and Communications at Greenfingers, said the opening of the garden was a ‘truly special day for everyone involved’.
“From the delicious cakes to the stunning garden and the uplifting atmosphere, everything was perfect,” she said. “To see the children enjoying the outdoors was incredibly moving and a reminder of what the garden’s design and creation was all about.”
A huge thanks to Greenfingers, Acorns staff, volunteers and everyone who was involved in the design, planning and making the project a reality.
Why help for Acorns can’t wait
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with more than 70% of that amount coming from generous donations and fundraising by the local community.
Help can’t wait. Donate to Acorns today by visiting www.acorns.org.uk/donate
It was a landmark moment at Birmingham’s most iconic store when a high-profile appointment at Acorns Children’s Hospice was officially announced – with a spectacular bang.
Samantha Watson, Store Director at Selfridges Birmingham, was revealed as the charity’s new Chair of Trustees at an exclusive event, celebrating Acorns as the charity of choice for supporters across the region and highlighting its world-class care.
An unforgettable occasion
A host of children and families cared for by Acorns were invited to the store for a VIP festive extravaganza – the first ‘Stardust Spectacle’ of the season at Selfridges Birmingham, which saw Santa and fashion fairy Stardust, dancing troupes of Mickey Mouse-inspired baubles and a confetti cannon spectacle mark the occasion and ensure that the announcement was a truly unforgettable moment.
Sam will formally take on the top role in November, following the departure of Mark Hopton, who is stepping down after leading the Board for the past eight years.
Her mission is ambitious; to ensure everyone in the West Midlands and beyond knows about Acorns and its highly specialist care and recognises the charity as an integral part of the region.
Sam explained: “The work we do at Acorns should be in the hearts and minds of everyone across the region. Every family should know that if they ever need children’s hospice care, Acorns is here to provide the specialist support they deserve.
“We are just as much a part of the region as its canals, historic buildings, music legacy, culture, thriving businesses and football clubs. It’s vital that supporters, fundraisers, donors and partners see Acorns as the charity of choice if they want to give back to their own community.”
‘I am deeply honoured’
Despite joining Acorns as a trustee just two years ago, Sam already had a long-standing connection to the charity. From fundraising as a schoolgirl in Walsall to taking part in the Acorns flagship Bubble Rush event, and most recently completing a China Trek alongside families supported by the charity, she has seen firsthand the life-changing impact the organisation has on children and their families.
Sam described her new appointment as an ‘honour’.
“I’m deeply honoured to have the opportunity to Chair the Board of Trustees,” she said. “Around the table is a wealth of knowledge and experience, and to lead that team and work with the Executive Directors at Acorns is incredibly exciting.
“As a relatively new trustee, I bring fresh energy, and being Acorns first female Chair allows me to offer a diverse viewpoint for both the Executive team and the wider organisation in a really positive way.”
Sam hopes the whole organisation will join her and make even more noise about Acorns.
Acorns world-class care
She said: “I want everyone at Acorns to be loud and proud about our world-class care and will use every personal and professional connection I have to make sure Acorns is part of every conversation.
“The care and support we offer children and families is like no other. We should celebrate it, fly that flag with pride, and recognise that what we do is unprecedented.”
Sam also paid tribute to outgoing Chair Mark Hopton, who was awarded an MBE in the King’s Birthday Honours last year for his services to education, healthcare and charities in the West Midlands.
“Mark has been such a massive supporter and advocate,” Sam said. “I’m incredibly grateful for his guidance and the path he’s helped pave for our charity’s future.”
Mark, who became Chair in 2017, dedicated his MBE to Acorns and the children and families it supports. “It’s a profound privilege to be involved in a charity like Acorns,” he said. “This award bears testament to the children and families we are here to serve, whose courage and strength inspires us every day.”
Looking ahead, Sam is determined to grow that legacy.
“We’ve got a bright future ahead,” she said. “The task now is to take everything we do so well and build on it, ensuring Acorns is sustainable for the long term and here for generations to come.”
Acorns Board of Trustees is the charity’s governing body, made up of volunteers who bring a wide range of expertise to guide its strategy and safeguard its future.
Trustees oversee the work of the Executive team, ensuring the charity fulfils its purpose and that every decision is made in the best interests of the children and families it supports. The Board also act as ambassadors, championing Acorns in the community and helping to build the partnerships and support needed to continue its work.
Trevor Johnson, Chief Executive of Acorns, said: “We are delighted to welcome Sam as our new Chair of Trustees. Sam brings incredible energy, passion and a wealth of commercial expertise that will help us shout even louder about our children’s hospice care. Her commitment to diversity, collaboration and community will be invaluable as we continue to grow and build a sustainable future for the children and families who need us.
“I would also like to pay tribute to Mark, whose leadership since 2017 has been nothing short of outstanding. His decision to remain as Chair during my appointment as Chief Executive, to avoid two major leadership changes at once and ensure continuity for our people and the children and families we support, is a shining testament to his dedication and commitment to Acorns.
“His wisdom, support and unwavering advocacy have helped steer Acorns through some of the most challenging times in our history. We are deeply grateful for his service.”Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with more than 70% of that amount coming from generous donations and fundraising by the local community.
Help can’t wait. Donate to Acorns today by visiting www.acorns.org.uk/donate
For more details on the Selfridges Spectacle visit: www.selfridges.com/StardustSpectacle
The hospice in Selly Oak, which provides care for around 250 children and their families every year, has received the highest possible rating from Government inspectors.
In their report, published today (Wednesday 22 October), the Care Quality Commission (CQC) has described Acorns in Birmingham as ‘performing exceptionally well’. Inspectors praised the team’s ‘strong collaborative approach’ to care and focus on achieving ‘the best outcomes’ for every child and young person, with safety described as ‘a top priority that involved everyone’ and support extending to the ‘whole family and not just the child’.
Enormously proud
Katie Burbridge, Director of Care and Executive Nurse at Acorns, said: “We are thrilled to receive an Outstanding rating from the Care Quality Commission (CQC). It reflects the dedication, passion and excellence of our care team, whose skill and commitment families already know and trust. Every day, they go above and beyond because the children we care for deserve nothing but the very best.
“Acorns exists for the children and families we support, and everything we do is driven by our purpose – to positively impact children with short lives. This recognition is as much for them as it is for our team. Every smile we see and every moment we share reminds us why we do this work.
“While we are enormously proud of this Outstanding achievement, it will inspire us to keep evolving and innovating to future proof our services so we can continue providing exceptional care and support for every child and family who needs us now and in the years to come.”
Trevor Johnson, Chief Executive at Acorns added: “This Outstanding rating is a powerful reflection of the incredible work of our teams every single day. It celebrates their commitment, compassion and the exceptional standards they deliver for children and families. It also shows our supporters, donors and partners that their belief in Acorns is well placed.
“At the same time, we are reminded that our work is never done. The needs of children and families continue to change, and we will always adapt our services to fit.”
Inspected under a new rigorous framework
Acorns in Birmingham was inspected by the Care Quality Commission (CQC) in July. It is one of three Acorns hospices providing specialist palliative care for children with life limiting and life threatening conditions and vital support for their families across the West Midlands.
The hospice was last inspected in 2016 under the adult social care system, when it was also rated Outstanding. It is among the first hospices in England to be assessed using the CQC’s new framework, which measures children’s hospices against the same rigorous standards as hospitals – recognising the high level of medical, clinical and nursing care they provide.
Following the new inspection, Acorns in Birmingham was again commended for its excellence, with inspectors rating the hospice as Outstanding for how caring, responsive, effective and well-led it is.
At the time of the visit, the hospice was undergoing improvement works. As a result, the final area of ‘safe’ was rated as Good – the highest level achievable while the work was underway. The refresh project is now complete.
Inspectors described the hospice as exceptionally well-led, with a culture rooted in transparency, equity, inclusion and a deep understanding of children and families’ needs. Leaders and staff demonstrated integrity, openness and compassion, fostering an environment where staff felt ‘valued and respected’ and able to raise concerns.
Care was praised as highly-personalised and compassionate, with each service user treated as an individual, taking into account each child’s ‘needs, culture and unique backgrounds and protected characteristics’, and with support extending to the whole family. Volunteer involvement was recognised as ‘invaluable and well received by the families’.
The report highlighted the hospice’s effectiveness and responsiveness, with staff thoroughly assessing and reviewing needs, planning care together with children and families and in partnership with other healthcare providers, so ‘people only needed to tell their story once’.
Services were found to be flexible and inclusive, tailored to diverse needs, and aimed at supporting children and young people to live as fully and independently as possible, knowing their rights and providing ‘choice and control over their own care’.
Inspectors found safety to be a clear focus throughout the service, noting that ‘safety and continuity of care was a priority throughout people’s care journey’. High standards were consistently maintained and closely monitored, underpinned by a strong understanding of safeguarding and a holistic approach to managing risk. Staff were also commended for maintaining ‘a clear focus on improving people’s lives while protecting their right to live in safety’.
Inspectors also noted that the hospice had achieved a gold accreditation by UNICEF for its work embedding the principles of the UN Convention on the Rights of the Child.
What the CQC said
Following the publication of the report, Amanda Lyndon, CQC Deputy Director of Operations in Birmingham, said: “We were pleased to visit Acorns Children’s Hospice in Birmingham and find they had maintained an exceptional level of care. They put children and young people at the centre of everything they did to provide exemplary treatment and support, making a difficult time easier for the whole family.
“People told us they were delighted with the service and that lovely staff treated them with warmth and kindness. We also heard how much families appreciated staff extending support to the whole family to support them as part of their loved one’s care.
“We observed staff involving people in their assessments and considering their communication needs and personal preferences. They ensured people were involved in decisions and could make choices about their care, while regularly reviewing assessment plans to make sure people received effective care that met their needs.
“Strong leadership helped shape care, as leaders constantly developed the service by learning from feedback and making improvements. They fostered an open culture where people and staff felt comfortable raising concerns. Managers investigated incidents thoroughly and shared their findings with staff.
“Staff continuously looked for ways to monitor and measure people’s outcomes and had identified that while several tools were available nationally for people in adult hospices, fewer existed for children and young people. In response, they worked with another hospice network to identify what data they collected and how they could adapt this, which improved their insight and understanding of people’s care and outcomes.
“Acorns Children’s Hospice in Birmingham did everything possible to continually develop their services and give young people and their families the best possible experience and outcomes. Other care services should look at this report to see what they can learn.”
Opened in 1988, Acorns is Birmingham was the charity’s first hospice site – and only the second in the world. Over the past 37 years, the hospice team has provided lifeline care to thousands of children and their families across Birmingham and Warwickshire.
Acorns hospices in Walsall and Worcester, opened in 1999 and 2005 respectively, are also expected to undergo the same rigorous inspection in the coming months.
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
Children receive care at Acorns for rehabilitative respite, pain and symptom management, emergency and end-of-life care, as well as through community nursing and family support in their homes and local communities.
Acorns needs around £35,000 each day to provide its children’s hospice care across the West Midlands, with more than 70% of that amount coming from generous donations and fundraising by the local community.
Read the full report here.
Thousands of people united and today their voices were heard – after the Government announced vital funding to secure the future of children’s hospice care across England.
In a ‘stunning victory’ for Acorns Children’s Hospice, more than 36,000 people backed the charity’s urgent petition to the Prime Minister to safeguard lifeline care for dying and seriously ill children.
Following months of campaigning and a huge outpouring of public support, today the Government confirmed a three-year, muti-million pound plan to provide much-needed funding for children’s hospices across England.
Families can now feel reassured
Trevor Johnson, Chief Executive for Acorns, said: “This is an incredible moment – a stunning victory for the children and families we support and the phenomenal community that always shows up for them and helps keep us going. The people spoke and the Government could not ignore us.
“Today, we celebrate the power of over 36,000 voices who came together for one simple mission; to give dying and seriously ill children the care they deserve. Care that can only be provided with sustainable funding support from the Government.
“Words cannot describe our deep gratitude to everyone who stood with us. Thanks to your unwavering support, families can now feel reassured instead of fearing uncertainty.
“Today’s announcement gives us the lifeline we needed. It means we can plan for the future with confidence and focus on what truly matters; making a positive difference for children with short lives.”
The announcement came just one day after the petition – containing a total of 36,718 names – was hand-delivered by hospice leaders to 10 Downing Street along with one-year old Harrison Grazier who depends on Acorns critical care.
A network of such amazing people
Mum Georgia Pearson, who stood with Acorns and presented the petition to Government, said: “Acorns brings light to us. It gives us the chance to be a family. Without them, our dark times would have been so much darker. In presenting this petition we have been able to give Harrison a legacy.
“Knowing that this funding has been secured means families like ours can feel reassurance that the care we desperately need will be there for us – and we can focus on making every day with our children count.”
She added: “Thanks to Acorns and we’ve got a support network of such amazing people who provide expert care and treat Harrison like their own.
“I’m just so grateful to Acorns and for every day we have with Harrison, whether that’s for two years, or ten years, they give us a chance just to be a family.”
Behind every handprint is a story
More than £26 million was received by children’s hospices in England from the Children’s Hospice Grant last year, with £2.2 million being given to Acorns. It was due to run out in just five months time and at a critical time in planning for the future.
The petition called for the Grant, or a sustainable equivalent, to be guaranteed for at least five years to ensure that heartbreaking decisions do not have to be made regarding the future of children’s hospice care.
Acorns was forced to launch the campaign in July and – to send the strongest possible message to the Prime Minister – created an emotional portrait of him made entirely using hundreds of handprints of children who are dying or seriously ill.
Titled ‘Hands for Hope’, the portrait was made with handprints created during art therapy sessions at Acorns hospices, which have now become a symbol for the campaign.
Trevor added: “Children’s hospices are not just places of care; they are places of life, love and memory. Behind every handprint is a story. Every handprint, every smile, every moment we share with a child is precious beyond words.
“That is what this petition stood for – the belief that every child’s life, no matter how short, should be filled with comfort, dignity, and joy. And for that to happen, this funding was vital.”
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with two thirds of that amount coming from generous donations and fundraising by the local community.
Join Acorns fight to save the Children’s Hospice Grant. Pledge your support at savethegrant.com now!
Acorns Children’s Hospice is marking the success of its Nursing Associates, with several team members completing their qualifications and making a significant impact on children’s hospice care. This training scheme helps us tackle nursing shortages and long-term challenges in children’s hospice care.
In Worcester, Nickie Ford and Catherine Smith have both successfully qualified. Their dedication and enthusiasm throughout the course were evident, and both expressed how much they enjoyed the learning journey.
Major milestones
Meanwhile in Birmingham, three more colleagues have reached major milestones. Louise Burrows not only qualified but did so with distinction, while Maria Ali also successfully completed her training – while becoming a proud mum – and is looking forward to graduating in January.
Michelle Parkes is now submitting her final assignment and poster. She is expected to qualify soon and hopes to graduate alongside Maria in January.
Louise said: “Completing the course has been an invaluable opportunity for me to grow from my role as a Health Care Assistant into a Nursing Associate. Since finishing, I’ve really noticed the impact of my learning and how it has shaped both my professional practice and the way I understand care.
“My external placements gave me exposure to a wide range of experiences, which broadened my perspective. I now feel I can offer even more to the children and families at Acorns, which is at the heart of why I wanted to take on this challenge.”
Acorns Clinical Practice Educator Jamie Wyton has worked closely with the Birmingham trainees praised their transformation.
Jamie said: “Their commitment, enthusiasm, and willingness to embrace the hard work required of a Nursing Associate is inspiring, and it reflects the potential of this pathway to strengthen the future of children’s hospice care.
“The success of this group underlines the growing value of the Nursing Associate role within Acorns. As the charity looks to the future, it is clear that this pathway is not only nurturing compassionate, skilled professionals but also strengthening the sustainability of care for children and families across the region.
“Through my fortnightly meetings with the university, I was genuinely overwhelmed by the outstanding feedback they received – both academically and professionally. It was incredibly positive to hear how well they are progressing, and it reinforced what I have seen day to day in their practice.
“I believe their success highlights just how valuable the Nursing Associate role is to Acorns. It not only develops skilled and compassionate professionals but also helps us to build a sustainable workforce that will benefit the children and families we care for, both now and in the future.”
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with more than 70% of that amount coming from generous donations and fundraising by the local community.
Join Acorns fight to save the Children’s Hospice Grant. Pledge your support at savethegrant.com now!
A powerful message took to the road as Acorns Children’s Hospice revved up its fight to save vital Government funding for children’s hospice care.
A truck bearing the striking portrait of the Prime Minister – created entirely from the orange painted handprints of children with life limiting and life threatening conditions cared for by Acorns – toured the region, urging the Government to safeguard the future of children’s hospice services.
Acorns has been urging the public to support its campaign at www.savethegrant.com and has been out in public and all its shops collecting signatures for a petition to be handed to 10 Downing Street.
The need has never been greater
The evocative artwork, titled Hands for Hope, was first unveiled outside the Houses of Parliament in July to launch Acorns urgent campaign. Now, the image has returned to Acorns home region, as the charity continues to rally public support and press its plea directly to the Prime Minister.
Without sustainable Government funding, Acorns fears it may be forced to turn away a seriously ill child for the first time in its 37-year history.
Trevor Johnson, Chief Executive at Acorns, said: “Like Acorns, all children’s hospices are facing extreme financial pressures – but the need for our services has never been greater. Demand for end-of-life care at Acorns has almost doubled in the past year, as more families rely on our specialist care more than ever before.
“The Hands for Hope tour across the West Midlands is a reminder that the future of children’s hospice care is in the Prime Minister’s hands. We need the Government to act now and guarantee long-term, sustainable funding so that no child or family is ever denied the vital care they need.”
The artwork, featuring hundreds of handprints made during art therapy sessions at Acorns hospices, is a symbol of the children and families behind the campaign.
Our message is simple
Trevor added: “These handprints aren’t just a piece of art. They represent lives, memories, and the unique bond we share with every child we care for. Our message is simple: without this funding, heartbreaking decisions will have to be made. With it, we can continue to provide lifeline care and support to hundreds of families across the region.”
The Children’s Hospice Grant, worth £26 million to children’s hospices across England and £2.2 million to Acorns, is due to end in March 2026, with no commitment from the Government to extend or replace it.
Acorns is urging the public to back its campaign by raising their hand, sharing the message on social media, and signing up for a free Save the Grant window sticker at savethegrant.com.
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with more than 70% of that amount coming from generous donations and fundraising by the local community.
Join Acorns fight to save the Children’s Hospice Grant. Pledge your support at savethegrant.com now!
An open letter from Trevor Johnson, Chief Executive at Acorns Children’s Hospice.
The announcement of Government capital grants for adult and children’s hospices is welcome and valuable. These funds will undoubtedly help improve facilities, upgrade equipment, and enhance the environments where care is delivered.
However, there’s a reality that needs addressing: these grants don’t pay for a single minute of what truly matters, the compassion and love that defines hospice care.
Care is in the hands of people who deliver it
Capital grants focus on the tangible in modern equipment and updated facilities. These improvements are genuinely valuable and needed. A hospice with outdated facilities or inadequate equipment cannot provide the best medical or supportive environment that children and families deserve when facing the darkest times in their lives.
The heart of hospice care isn’t found in the buildings or the equipment. It’s in the hands of the people who deliver it – our nurses who adjust medication at 3am, the gentle voice that comforts a child and the support that guides families through impossible moments. The care teams who provide the specialised palliative care that makes our hospices unique remain unfunded by capital grants.
Behind the welcome news of facility improvements lies a deeper funding crisis. Hospices across the country are struggling to maintain staff levels and provide vital care, not because they lack commitment, but because they lack sustainable funding for essential roles. The specialised training required for palliative and end-of-life care, combined with the emotional demands of the work, means hospices need competitive salaries to attract and retain care staff.
Who will provide that care?
This challenge becomes even more acute in children’s hospices, where nursing requirements are more complex. Paediatric palliative care requires specialised training in child development, family dynamics, sibling support, and the consideration of the unique medical needs of children with life limiting conditions. These highly skilled professionals are even scarcer than adult hospice nurses, yet children’s hospices face the same capital-focused funding approach that fails to address such critical staffing needs.
Capital grants create better spaces for care but don’t address the fundamental question: who will provide that care, and how will it be funded?
A new patient room funded by a capital grant costs money to build and equip. However, the nursing care required to make that room meaningful in providing 24-hour support, specialised pain management and symptom control, family support, and end-of-life expertise costs significantly more and requires ongoing, reliable funding.
In children’s hospices, these economics become even more challenging. Children’s hospices often need higher staff-to-patient ratios, with nurses trained not only in paediatric palliative care but also in supporting entire families through unimaginable circumstances. They must be equipped to comfort a child, support exhausted parents, and help siblings understand what’s happening – all while managing complex medical conditions that vary dramatically from adult care.
This isn’t to diminish the value of capital improvements. Patients deserve quality environments, and families need comfortable spaces during difficult times. However, even the most sophisticated facility becomes merely an expensive shell without adequate nursing staff to breathe life into it.
The hospice sector needs a balanced approach to funding that recognises both infrastructure and operational realities. While celebrating capital grants, we must simultaneously advocate for sustainable core funding: regular, predictable funding streams that allow hospices to maintain appropriate nurse-to-patient ratios and competitive salaries. As well as long-term operational support: understanding that the ongoing costs of compassionate care far exceed the one-time costs of facility improvements.
There’s a risk that capital grants, while well-intentioned, may inadvertently mask the more pressing operational funding crisis. Ribbon-cutting ceremonies at new facilities make for positive headlines, but the real measure of hospice success happens in quiet moments between care teams and families that require adequate staffing levels to achieve.
This disparity is particularly stark in children’s hospices. The most modern hospice facility cannot compensate for understaffing or the inability to retain experienced staff.
The Government’s capital grant program represents an important step forward, and the hospice sector is genuinely grateful for this investment. However, it must be part of a broader commitment to hospice care that includes sustainable operational funding.
As we welcome these capital improvements, let’s not lose sight of what makes hospice care truly exceptional: the skilled, compassionate care teams that no grant for bricks and mortar can provide.
Our teams support families in their darkest hours, providing medical care, emotional support, and practical guidance in a situation that otherwise would be unbearable. As a parent said to me earlier this week: “I have positive memories of my daughter because of the hospice.”
The question isn’t whether capital grants are valuable. They are. The question is whether we’ll complement these physical improvements with the operational funding needed to ensure they’re staffed by the people who make hospice care meaningful.
Until that happens, we’re building impressive shells around an increasingly fragile core, leaving the most vulnerable people, especially children, without the specialised care they desperately need.
Acorns is now calling on the Government to secure vital funding for children’s hospice care across England. Visit savethegrant.com to add your voice to our campaign.
Acorns Children’s Hospice has welcomed a ‘one-off’ allocation of capital funding from the Government towards upgrading buildings, facilities and digital infrastructure – which will help ensure it has the ‘very best facilities’ to deliver care to children across the region.
But Chief Executive Trevor Johnson has continued to call on the Prime Minister to provide long-term sustainable funding to help deliver vital care to children with life limiting or life threatening conditions and support for their families.
Acorns is set to receive £906,009 for 2025/26, which can be spent on modernising hospice buildings and facilities.
Trevor said: “We appreciate this one-off investment because it is important that we have got the very best facilities to deliver care to children across the region who are seriously ill. But we are not allowed to use this money to pay for a single nurse, or a single minute of care.
“At Acorns, the thing that makes the difference is the specialist palliative care we provide for children and support for their families who are facing the darkest times in their lives. This money does not help us with that.
“For these families the future is uncertain, and that’s why we are continuing to call for the Government to guarantee the Children’s Hospice Grant, or equivalent sustainable funding, to enable us to continue to provide the care they deserve for years to come.”
As part of this campaign Acorns unveiled a powerful portrait of the Prime Minister – made entirely using the handprints of children cared for by the charity.
Trevor said: “We’re asking everyone to support our campaign at www.savethegrant.com to secure the future of all children’s hospices, like Acorns, across England. Without this funding, we fear a future where we may be forced to turn a child or family away.”
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care. This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with two thirds of that amount coming from generous donations and fundraising by the local community.
To support the campaign visit www.savethegrant.com. Every click counts.
Following the announcement from the Prime Minister on the publication of the 10 Year Health Plan for England (Thursday, 3 July), Acorns Children’s Hospice has welcomed the Government’s commitment to ensuring ‘every child has the best start in life’ – and is urging Ministers to ensure this includes children with complex care needs.
The charity, which provides specialist palliative care for children with life limiting and life threatening conditions, this week unveiled a striking portrait of Sir Keir Starmer, created using the handprints of children Acorns supports.
Children with complex needs
Behind the artwork is a powerful message calling on the Government to guarantee sustainable funding for England’s children’s hospices – vital funding that enables the charity to continue providing the care that enables children with complex needs to live their lives well.
Acorns has also welcomed the Government’s plan to achieve its ambitions through three radical shifts, including a greater focus on care in the community and closer collaboration with other healthcare providers.
Trevor Johnson, Chief Executive at Acorns Children’s Hospice, said: “We welcome the Prime Minister’s announcement of the 10 Year Health Plan for England and the Government’s commitment in making sure that every child has the best start in life. We hope this includes ensuring children with complex care needs have access to the best palliative care that only hospices like Acorns provide.
“We welcome the confirmation that the Government will ‘break the old, short-term cycle of financial planning by asking all organisations to prepare robust five-year plans’ – which is exactly what we have been calling for in order to provide stability across the children’s hospice sector, and give long-term reassurance to families facing the darkest times in their lives.
Acorns ready to play a key role
“We are also encouraged by the Government’s ambition to shift more care into the community and work more closely with other healthcare providers. As specialists in children’s palliative care in the heart of our communities, Acorns is ready to play a key role in delivering this vision.
“But in order to plan our services effectively and develop longer-term strategies to continue our high-specialist care, we need the Government to commit to sustainable funding for England’s children’s hospices.
“Acorns continues to urge the Prime Minister to protect the Children’s Hospice Grant or provide an alternative equivalent. Without it, we fear that in the future we may be forced to make heartbreaking decisions that could mean turning a child and their family away due to a lack of funding.
“This week, we took our message straight to those in power when we unveiled our emotional portrait of Sir Keir Starmer outside the Houses of Parliament in London, made entirely from the handprints of the children we care for at Acorns. Every handprint tells a story, and every handprint is a direct plea to him to secure the future of children’s hospice care.
“We hope that the Prime Minister saw this powerful portrait and our message that the future of children’s hospice care is in his hands.”
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life limiting and life threatening conditions, and support for their families.
In the past year, the charity has cared for more than 780 children across the West Midlands, and supported over 1,000 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £35,000 each day to provide its children’s hospice care, with two thirds of that amount coming from generous donations and fundraising by the local community.
Members of the public can support Acorns campaign by visiting www.savethegrant.com – every click counts.