Local families with bleeding disorders

  • Starting School: When excitement and worry come together

    Starting school is a huge milestone for any family. The new uniform, the first backpack, the excitement of a new adventure, it’s a milestone for any parent. But if your child has a bleeding disorder, those exciting feelings can often come with extra worries too. Will the school understand their condition? Will staff know what to do if they have a bleed? Will they be included in PE, trips and activities? Will they make friends and feel confident?

    If you’re asking yourself these questions, you’re not alone.

    Starting school is a big change, and for families living with a bleeding disorder, there can be an extra layer of planning. Alongside the usual thoughts about uniforms and lunchboxes, you may also be thinking about emergency plans, medication, teachers understanding your child’s needs and making sure they feel safe and supported. These worries are completely normal but being prepared can help you feel more confident.

    One of the most helpful things you can do is start conversations with the school early. Meeting with teachers, discussing your child’s needs, creating an emergency care plan and involving your haemophilia team can help everyone feel more prepared.

    It’s easy for the medical side of things to feel overwhelming, but remember your child is not defined by their condition. They are starting school to learn, make friends, explore new interests and enjoy new experiences. While it’s important that staff understand their bleeding disorder, it’s just as important that your child is seen for who they are.

    Many parents have felt those same nerves as you, the worry before the first day, the hesitation when leaving them at the classroom door, and the questions about how school life will work. Connecting with other families can provide reassurance, advice and support from people who understand. It’s completely normal to feel nervous about your child starting school. Those feelings simply show how much you care.

    With the right support, preparation and communication, children with bleeding disorders can thrive at school, build friendships and enjoy everything this exciting new chapter brings.

    At Local Families with Bleeding Disorders, we’re here to help you through every stage of your journey. Our website has a range of useful information and resources for families, including our Starting School Factsheet. Visit the Resources section to explore the guides and support available.

    We wish all children starting school a happy and confident start.

  • When pain becomes your normal – By Bonnie Charles

    For the past few months, my ankles have been causing me more pain than usual. Like many people living with haemophilia, pain is something I have learned to live with. I adapt where I can, push through the difficult days, and tell myself that things could always be worse. What I had started to realise, though, was that the pain medication I’d been prescribed just wasn’t cutting it anymore. The pain had begun to affect my day-to-day life more than I wanted to admit. It was always there, sitting in the back of my mind. Even on special days, when I should have been enjoying myself and making memories, there was always that underlying awareness of my ankles and how much they were hurting. It had started to put a dampener on moments that should have been purely happy.

    Recently, I had a routine appointment with my consultant. Nothing out of the ordinary – just one of those regular check-ins that have been part of my life for as long as I can remember. But when they asked me how I was getting on, I found myself stopping and really thinking about the answer. It made me realise just how much I had been holding in. Somewhere along the way, pain had become my normal. I had become so used to arthritic ankles due to years of bleeds and adjusting my life around them that I stopped recognising how much they were affecting me. I wasn’t really talking about it; I was simply getting on with things, as I’ve always done. Living with haemophilia teaches you resilience. You learn to adapt, to carry on and to make the best of difficult situations. But sometimes resilience can come with a downside. Sometimes it means we minimise what we’re going through or convince ourselves that because we are coping, we don’t need to talk about it.

    Sitting in that appointment, answering what should have been a straightforward question, I realised how much I had normalised the pain and how rarely I had allowed myself to acknowledge the emotional side of living with it. The frustration, the tiredness and the quiet adjustments that become part of everyday life. What struck me most, though, was how amazing my haematology team were. As soon as I explained how things had been, they listened. They reassured me that I didn’t need to just put up with life like this and immediately prescribed new medication, with a follow-up appointment arranged to see how I was getting on. More importantly, they reminded me that I should always talk to them. I didn’t have to struggle in silence or wait until things became unbearable. Help and support were there; I just needed to be honest about how I was feeling.

    It also made me wonder how many others in the bleeding disorders community do exactly the same. How many of us quietly carry things because we’ve become so accustomed to doing so? My ankles haven’t suddenly improved, and I don’t have all the answers, but that conversation reminded me of something important: just because something has become normal doesn’t mean it isn’t difficult. And talking about how we’re really feeling isn’t complaining, it’s being honest. It also made me think about the people around us. If you know someone with haemophilia, please understand that we don’t always talk about our aches and pains. For many of us, they’ve become part of everyday life. We adapt, we carry on, and sometimes we forget ourselves just how much we’re dealing with. That doesn’t mean we don’t struggle, and it doesn’t mean we don’t need support. We may not always want advice or answers, but knowing that someone is there to listen when we are ready to talk can mean more than you realise. Sometimes, what we need most isn’t for someone to fix things – it’s simply for someone to understand, to be patient, and to be there when we need them.

    Perhaps the biggest lesson I’ve taken from this is that we don’t have to carry it all alone. Whether it’s our haematology team, family, friends or those closest to us, there are people who care and who want to help. And perhaps it’s okay to admit that sometimes, we’re carrying more than we think.

  • An Adventure to Remember at Stubbers!

    What an incredible day we had at Stubbers Adventure Centre, with more than 60 LFWBD members coming together for a fun-filled day of adventure, laughter and friendship.

    This fantastic event was only possible thanks to the amazing work of our wonderful Admin Manager, Steph, who discovered the opportunity, applied for funding and successfully secured a grant from The Spark Foundation. Her hard work enabled our families to enjoy an unforgettable day together, with every activity, lunch and even ice creams fully funded.

    Throughout the day, our members challenged themselves to a whole range of exciting activities including archery, bushcraft, climbing and canoeing. Whether it was reaching the top of the climbing wall, hitting the target in archery or paddling across the water (which was certainly refreshing when we all decide to jump in for a swim!), everyone embraced the opportunity to try something new.

    The sunny weather made the day even more special. It was wonderful to see familiar faces catching up, new friendships being formed and children, young people and adults encouraging one another every step of the way.

    After working up an appetite, everyone enjoyed delicious pizzas for lunch before finishing the day with a well-earned ice cream – the perfect ending to a fantastic event.

    At LFWBD, we know that some of the best memories are made when families have the opportunity to step outside their comfort zone, try new experiences and spend time with people who truly understand life with a bleeding disorder. Days like this strengthen our community and remind us just how special it is to belong.

    A huge thank you to Steph for making this event happen and to The Spark Foundation (STEPH IS THIS RIGHT – IS THERE A LINK?) for their generous support. Without funding like this, opportunities such as these simply wouldn’t be possible.

    If you’d like to find out more about Stubbers Adventure Centre, visit: www.stubbers.co.uk.

    Thank you to everyone who joined us and helped make it such a memorable day. We can’t wait to see you all again at our next LFWBD adventure in Greenwich in September!

  • Thank You for Your Feedback – and Congratulations to Our Hobbledown Winners!

    At LFWBD, we are always looking for ways to make our events the very best they can be for our members. That’s why, after every event, we ask attendees to complete a short feedback survey. It only takes a few minutes, but it makes a huge difference.

    Following our Christmas Lights Bus Tour last December, everyone who completed the survey was entered into a prize draw to win a family ticket to Hobbledown. We are delighted to congratulate our winners – David, Jordana, Evie, Poppy and Nova – who recently enjoyed their well-deserved family day out.

    From meeting a wide variety of animals to exploring the adventure playgrounds and taking part in all the exciting activities on offer, they had a fantastic day together, making some wonderful family memories. We are so pleased they had such an enjoyable visit.

    While it’s lovely to be able to offer a prize as a thank you, the real value of our surveys is the feedback you provide. Your comments help us understand what you enjoyed most, what made a difference to your family and where we can continue to improve. They help shape future events, ensuring we continue to deliver experiences that are fun, welcoming and meaningful for everyone in our community.

    Your feedback is also incredibly important when it comes to securing funding. Being able to demonstrate the positive impact our events have on families provides valuable evidence for our funders and supporters, including the National Lottery Community Fund. Quite simply, your feedback helps us continue doing what we do.

    So, if you receive one of our surveys after an event, please do take a few moments to complete it. Every response really does count, and together we can continue building an even stronger, more supportive LFWBD community.

    Congratulations once again to David, Jordana, Evie, Poppy and Nova, and thank you to everyone who continues to support LFWBD by sharing your feedback.

  • Summer Picnic in Kensington Gardens

    Our annual LFWBD Summer Picnic in Kensington Gardens was a wonderful reminder of just how important our community is.

    We were delighted to welcome both familiar faces and new families joining us for the first time. It was lovely to see everyone relaxing together on a beautiful sunny day, enjoying picnics, playing games and spending time with others who truly understand the realities of living with a bleeding disorder.

    One of the highlights of the day was our circus skills workshop. Our talented circus instructor had children and adults alike trying their hand at a range of new skills, bringing plenty of laughter, encouragement and a little friendly competition along the way. It was fantastic to see so many people getting involved and having fun together.

    Perhaps the most special part of the day, however, was the opportunity to connect. There is something incredibly valuable about being amongst people who simply “get it” – sharing experiences, swapping stories and knowing you do not need to explain every detail because others understand exactly what you mean.

    As an added bonus, we even caught a flypast from Trooping the Colour overhead, making an already memorable day feel even more special.

    Thank you to everyone who came along and helped make the day such a success. We look forward to seeing you again at our next LFWBD event.

  • Thank you!

    As Chair of Local Families with Bleeding Disorders (LFWBD), I want to say a huge thank you to the wonderful members of our community who have recently taken part in the fantastic Haemcast podcast series.

    Sharing personal experiences can be incredibly difficult, particularly when those experiences involve the challenges, worries and emotions that can come with living with a bleeding disorder or caring for someone who does. That’s why we are so grateful to the families who have spoken so openly, honestly and bravely for the benefit of others.

    At LFWBD, this is exactly what we are all about — sharing stories, building support, creating community, and helping people feel understood. There is something incredibly powerful about hearing someone say the things you’ve thought or felt yourself. It reminds people that they are not alone.

    The recent podcasts have explored family life, treatment, parenting, emotions, and everyday experiences in such a real and relatable way. They have highlighted the empathy, kindness and understanding that exists within our community and shown how much we can learn from one another when we create safe spaces to talk openly.

    We have been incredibly proud to collaborate with Haemnet on these episodes and are so thankful to everyone who has contributed their time, honesty and experiences.

    If you haven’t listened yet, we would really encourage you to look up Haemcast on your favourite podcast platform. There have been some brilliant episodes recently – always expertly hosted by the lovely Kathryn Jenner, and we hope they continue to help families feel connected, informed and supported.

  • Service of Recognition, Remembrance and Reflection at St Paul’s Cathedral

    On 19th May 2026, members of the Local Families with Bleeding Disorders (LFWBD) community attended the deeply moving Service of Recognition, Remembrance and Reflection at St Paul’s Cathedral in London.

    Hundreds of people gathered together to remember and honour all those affected by the infected blood tragedy, a tragedy that has had a devastating and lasting impact on so many within the bleeding disorders community and their families.

    The service was thoughtful, emotional and incredibly powerful. There were moments of sadness and reflection, but also moments of compassion and recognition. Hearing Michael Ball sing within the magnificent setting of St Paul’s Cathedral added to the emotion and significance of the occasion.

    Another particularly moving moment came when the cathedral fell completely silent as thousands of campaign-coloured petals were released from the Whispering Gallery above, gently falling through the cathedral in memory of all those we have lost over the many decades since this tragedy first unfolded. It was a beautiful and heartbreaking tribute that will stay with many of us for a very long time.

    We were also each given the name of someone who wanted to be remembered and aske to read out their names in unison and ask that they be remembered.  Such a touching action to be part of.

    A number of political figures attended the service, including Prime Minister Keir Starmer, Theresa May, and Diana Johnson, alongside many others who have supported the fight for truth, justice and recognition for those affected, as well as many members of the Inquiry team including Sir Brian Langstaff who gave yet another poignant speech about just how unimaginable and unforgiveable this tragedy is and has been for so long.

    A special mention must go to Clive Smith, Chair of the Memorial Committee, who did a truly outstanding job in helping shape such a sensitive and inclusive event. The care, thoughtfulness and compassion shown throughout the service were evident in every detail.

    Our thoughts remain with everyone affected, both within our own community and across the wider bleeding disorders community.

  • A Special Afternoon Tea to Say Thank You

    This weekend, we had the pleasure of hosting a very special afternoon tea at the Covent Garden Hotel in London to say thank you to the incredible nurses who support our families.

    At Local Families with Bleeding Disorders (LFWBD), it is really important to us to hold space where we can recognise the care, dedication and kindness these nurses show every day. They are often the first point of contact for families, providing not only medical expertise but also reassurance, guidance and understanding during some of the most challenging moments.  They become another family member to many of us, and I know from personal experience, bring much needed support and comfort at difficult times.

    Our nurses are a vital part of our community, and the support they provide extends far beyond treatment. They help families feel informed, confident and cared for — something that makes a real difference.

    The afternoon was a chance to step away from the hospitals and come together. It was so nice to spend time chatting and saying thank you in person. 

    We are so grateful to each and every one of them. Thank you for everything you do — this afternoon was just a small way of showing how much you are appreciated.

  • World Haemophilia Day 2026 – Diagnosis: The First Step to Care

    As Chair of Local Families with Bleeding Disorders (LFWBD), World Haemophilia Day is always an important moment to pause, reflect, and come together as a community. This year’s theme, “Diagnosis: The First Step to Care,” set by the World Federation of Hemophilia (WFH), highlights something fundamental — that without diagnosis, access to treatment, support and understanding simply cannot begin.

    The WFH reminds us that more than three-quarters of people with haemophilia worldwide remain undiagnosed, with an even greater gap for other bleeding disorders. This means hundreds of thousands of individuals are still living without access to even the most basic care. It’s a powerful and sad  reminder of how much more needs to be done globally.

    Here in the UK, we are fortunate to have access to high standards of care and treatment. But today, we are encouraged to reflect on those who came before us, when diagnosis and treatment were far more limited, and to think of families around the world who still face those challenges today.

    At LFWBD, we see every day the difference that diagnosis and support can make — not just medically, but emotionally and socially too. World Haemophilia Day is also about connection: bringing people together, sharing experiences, and supporting one another, just as we aim to do within our own community.

    Today, we stand in together with families across the world, recognising how far we’ve come, while acknowledging how far there is still to go.

    Together, we hope to move closer to a future where diagnosis — and care — is truly available to all.

  • New Haemcast Episode –Real Conversations from our  Community

    We’re delighted to share the latest episode of Haemcast, created in collaboration with Haemnet and some of our wonderful LFWBD families.

    This second episode, titled “Sticky blood, teddies and teens,” features parents Hannah, Mark and Jackie, who speak openly and honestly about how they talk to their children about their bleeding disorder. From explaining where it comes from, to helping children understand what it means for their daily lives and why treatment is so important, the conversation is both insightful and incredibly relatable.

    These are the kinds of discussions that don’t always happen easily. Knowing what to say, when to say it, and how much to share can feel overwhelming for many families. What makes this episode so powerful is the honesty and reassurance it offers — hearing from other parents who truly understand can make all the difference.

    At Local Families with Bleeding Disorders (LFWBD), creating spaces where families can share experiences and support one another is at the heart of what we do. This podcast is another brilliant example of how those conversations can reach even more people, helping families feel less alone and more confident in navigating everyday life.

    A huge thank you to Haemnet and to Hannah, Mark and Jackie for sharing their experiences so openly.

    You can listen to the episode here: https://loom.ly/_Pr-GBk

    Or search “Haemcast” on your favourite podcast platform.

    We hope you enjoy listening as much as we did.