Issue 06/Summer 2019
Front cover, left to right: The Tucker Family – Zoë, Sol, Theo, Flint and Cherry, enjoy CLDF's Easter Picnic.
Welcome
It’s wonderful to welcome you to our latest edition and let you know more about the charity’s work over the last year. As always, the team have been incredibly busy and you’ll hear about a wealth of projects delivered, support and networking for young people and families, alongside awareness raised and information developed. The edition also features stories from our supporters, fundraisers and some of the medical professionals we work with. There are more than 1000 children diagnosed with a liver condition every year and we want each and every one of them to know about the charity, know that we are here for them and know that we can provide information, support and a community that will help them along their journey. We continue to meet people through our clinic visiting programme who haven’t heard about CLDF and we know we must do more. Although our support team travel the length and breadth of the country to attend clinics, this centrally based team can only attend around 20% of clinics in the UK. With this in mind, we took on our first remote member of staff in late 2018, and our Scottish Support Officer is already having an impact. We feel this is an idea we can expand, and so it’s our hope that we can have CLDF Support Officers working with and based at the three main liver centres to meet, and help us reach, a much higher number of families and children. We are in the process of trying to raise the funds we need to make this a reality. 2020 is a very important year for the charity. We will celebrate our 40th birthday, an amazing milestone. Like many reaching that milestone we are taking some time to reflect on how far we have come and consider where we are going. It’s simply amazing to see the transformation in the outcomes and life expectancy for children with childhood liver disease. The charity and the funds our supporters have raised has played an important role, but there’s still more to be done. During the next few months we need your help. We want to know what you value about what we do and what we should change to meet your needs, in an ever-changing world. We will launch a new strategic plan in 2020 and we want your opinion to shape our development. Over the next few months there will be a variety of ways that you can get involved. Please participate, it’s really important. My email is always open too, so if you would like to get in touch please do. It's been an incredibly difficult year for fundraising, for small charities with big missions like ours. We are continually indebted to those who raise the funds to enable the work we do. If it’s something you haven’t yet considered, do think of us, whether it’s suggesting the charity to a company you work for, a social group you know of, or a school your child attends, you could make all the difference. Our fundraising team would be delighted to help.
Best wishes, have a wonderful rest of 2019
Alison ceo@childliverdisease.org
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Contents 04
05
Keeping Yellow Alert
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Didn't They Do Well
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Meet the Support Team
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Meet New Trustees
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Gregg Joins us for Dinner
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New Education Pack
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Making Your Voice Heard
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Celebrating a Marathon Effort
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2018 IMPACT REPO Big Yellow Friday
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Corporate Round Up
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Get Involved With Research
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Children’s Liver Di exists solely to sup everyone affected disease by:
Impact Report
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Fantastic Fundraisers
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A Day For Remembering
Getting Through the Bad Times
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Saluting Our Young Fundraisers
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What I Get from Fundraising
Bringing Families Together
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How We Feel About Our Battle Scars
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National Conference
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Why I give this way
• funding and sup research • informing and e professionals, p about childhood the signs and s • campaigning to and their familie • providing childr and their famili support service
“We are the only UK charity dedicated to supporting every family who faces the sha liver disease in childhood. We know that our work makes a difference and we are de even more families to ensure every child with a liver disease can reach their full pote target but, by working hand in hand with our supporters, partners and health care p we believe we can achieve.” Alison Taylor, Chief Executive
My Liver Disease Didn't Stop Me
There are a huge liver diseases whi children and youn are largely unknow threatening and a medical care.
Family Fun Day
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40 Years of CLDF
Keeping health professionals on Yellow Alert Most of you will be familiar with Yellow Alert, CLDF’s campaign to promote early referral for testing of prolonged jaundice in newborn babies. The role of GPs, health visitors, midwives and practice nurses in spotting the signs of liver disease in newborns and arranging specialist referral is a vital one, and our Yellow Alert resources have been designed to give health professionals the information they need in the quickest, most accessible way possible. We are delighted to announce that the Institute of Health Visiting (IHV), Royal College of Nurses (RCN) and Royal College of General Practitioners (RCGP) have joined the British Association for Community Child Health (BACCH), British Association of Perinatal Medicine (BAPM) and British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) in endorsing the Yellow Alert resources. You can help raise awareness of the early signs of childhood liver disease in your community by taking our Yellow Alert poster into your GP surgery. If you would like to request copies or would like any further information about our Yellow Alert campaign please email Harpreet Brrang (Information and Research Hub Manager) at irhm@childliverdisease.org or call 0121 212 6029.
Story book wins national award In last year’s Liver Life, we told you about Joe’s Liver Transplant Story, the book we published to help young children and their siblings understand the concept of liver transplantation. The story was written by Dr Saskie Dorman as she sat by the bedside of her five-year-old son as he recovered from a liver transplant in 2015. We’re delighted to report that the book was named winner of the Information for Children Award at the 2018 British Medical Association Patient Information Awards.
CLDF launches new Hepatitis B leaflets CLDF has launched two new information leaflets on Hepatitis B – one aimed at teenagers and another for parents and guardians. Information and Research Hub Manager, Harpreet Brrang, who has developed the leaflets in conjunction with medical professionals, said: “There is still a large degree of misunderstanding and stigma regarding Hep B so we are delighted that we can now provide leaflets which contain clear information both on the virus itself and its implications for parents and children. “We are not aware of any other information on Hep B which is specifically aimed at young people so we are particularly pleased that we can make this available. I would particularly like to thank the healthcare professionals at Birmingham Children’s Hospital, Leeds and Kings College Hospital for their input into what we see as a valuable new resource.” You can order a copy of either of the new leaflets at: childliverdisease.org/liver-information/childhood-liverconditions/hepatitis-b/
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The award judges described Joe’s Liver Transplant Story as “a unique resource – vitally important in explaining a lifechanging massive operation to young children….it deals with a sensitive topic in a way that is highly accessible to its target audience.” Alison Taylor commented: “We know that the hospitals who use ‘Joe’s Liver Transplant Story’ find it extremely useful and to win this prestigious BMA award is a great accolade and a real endorsement of the quality of the information we provide.” BMA President, Professor Dinesh Bhugra (left), and chair of the BMA’s women in academic medicine group, Dr Carmen Soto (right), present the award to (left to right) Mairead Ritchie, CLDF Press & PR manager, Harpreet Brrang, Information & Research Hub Manager, and Dr Saskie Dorman, parent volunteer and story writer.
Didn't They Do Well? Bertie takes a dive Eleven-year-old Bertie is taking up scuba diving. “He was keen to have a go when his brother had a lesson,” explains mum, Alice. “But of course when it came to filling in the medical questionnaire I realised I would have to get permission from our GP. However, we got the necessary permission without a problem and Bertie really enjoyed the experience. Now both boys have signed up for a course this summer!”
Elen is right on track Twelve-year old Elen, who has biliary atresia, and underwent a successful Kasai as an infant, has been competing in all kinds of sports pretty much since she could almost walk, according to her mum, Ruth. “Her main focus is triathlon. Last year she was the South West Series Triathlon Champion, she represented the South West at the National Finals in September last year, and has just qualified to do so again,” says Ruth. “Elen’s training requires an awful lot of swimming, cycling and running. She has gained county swimming times and represented the South West in the National Cross Country Championships in April 2019”. Elen also finds time for her school sports and other interests. We don’t know how you do it but we’re very proud – go Elen!
Emma gains her Silver Award Congratulations to 18 year old Emma for completing her Duke of Edinburgh Silver Award. “I volunteered in the school library, did swimming for my sport and cooking and baking for my skill,” she says. “Unfortunately, our expedition was called off due to Storm Hannah, but we still succeeded in passing our Silver Duke of Edinburgh and it was great fun, if a little exhausting. If I can, I’d like to carry on and do Gold next year”. Best of luck to you, Emma.
If you have someone you would like to be considered for Didn’t They Do Well email press@childliverdisease.org.
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Gregg joins us for the Chefs’ Gala Dinner Chefs from around the country came out in force on March 18 to help us raise a fantastic £110,000 at the Chefs’ Gala Dinner.
The evening also proved a great experience for some of our families who took a table at the event:
The event took place in the magnificent ballroom of the Jumeirah Carlton Tower in Knightsbridge and was hosted by executive head chef, Simon Young, and Gregg Wallace of BBC’s MasterChef.
“The Chefs’ Gala Dinner gave us the opportunity to meet celebrity Michelin star chefs and TV personalities whilst tasting the most exquisite food in an intimate setting, it was truly the most amazing experience,” said Jofi Alexander. “My wife and I invited close friends and senior executives from my company. They were so touched to hear about the great work CLDF undertakes and said that they were very privileged to be part of the evening’s fundraising.”
Our 270 guests enjoyed a first-class menu designed and supervised by five of Britain’s top chefs – Simon Hulstone, Shay Cooper, John Campbell, Claire Clark MBE and Sarah Crouchman. Each table was joined by a chef from one of the country’s finest kitchens, who gave generously to the raffle and silent auction. Guests also heard about the work of CLDF from our patron, Sue Cook, and Professor Richard Thompson, CLDF’s honorary medical adviser, before taking part in a live auction under the direction of auctioneer, Charles Hanson, from BBC’s Bargain Hunt. “It was a wonderful evening,” says Chief Executive, Alison Taylor. “Gregg was a wonderful host - he knew so many of the chefs who attended and he was fascinated to learn about our work. Not only did we raise a fantastic amount, but we were able to raise awareness of CLDF and childhood liver disease amongst many people who previously knew very little about us"
Gregg Wallace of BBC’s MasterChef was a wonderful host for the evening.
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The evening concluded with a wonderful surprise when Benjamin, Sebastian, Eliot and Kaspar Budd took to the stage to announce that they would like to make a donation of £25,000 to CLDF in memory of their brother, Dominick. It was a touching and hugely generous gesture which provided a fitting close to a memorable night and will enable us to continue making a difference to young people with liver disease. Thank you, boys. Our next Chefs’ Gala Dinner will be taking place in March 2021 and we’ll be announcing the date and venue very shortly.
Left to right: Sebastian, Kaspar, Eliot and Benjamin Budd made a surprise donation at the end of the evening.
Over 270 guests enjoyed a first-class menu at the Jumeirah Carlton Tower.
Celebrating a marathon effort This year a team of 18 runners completed the London Marathon for CLDF raising an amazing £54,801.94. We were there to cheer them on and very proud to report that from our cheering point in Birdcage Walk we spotted almost everyone. Michael Evans was first over the finish line for CLDF this year, completing the course in an impressive three hours 15 minutes, but we are delighted that everyone in Team CLDF made it safely round. The highlight for us was meeting so many of our runners and their families afterwards when we joined forces with the British Liver Trust for a reception. Running a Marathon is such a huge commitment in terms of training and fundraising and we feel so privileged that they chose to do it for us. If you would like to apply for a place in the 2020 London Marathon visit childliverdisease.org/support-us/ fundraise-for-us/challenges/london-marathon-2020/ Left to right: Michael Butterfield, Katie Flatters, Paul Jenkins, Liz Jenkins and Gill Douglas, some of CLDF’s 2019 London Marathon team.
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Meet the Support Team Many of you have met members of our Support Team at CLDF events and clinics. But if you haven’t and you would like to put faces to the names you speak to on the phone or by email, here they are:
Michelle is our Head of Support “I lead on the delivery of high-quality support services to children, young people and families affected by childhood liver disease. This encompasses clinic and ward visits, family events, residential trips for young people and one -to-one support. As the Designated Safeguarding Officer for the organisation, I also ensure that all safeguarding requirements are adhered to. Through my role I ensure that families have access to a team who are there for them on a daily basis. I am honoured to work with such brave and resilient families and to be able to offer them support throughout their liver journey. “
Lois is our Children and Families Officer “My role centres around the families, so whatever hurdle they face, I can be there to support them. This can involve me in many things from supporting applications or appeals for Disability Living Allowance to sleeping out in the forest! I am lucky that I get to meet so many families face-to-face, whether that’s on hospital wards at Kings, Birmingham and Leeds, or at clinics throughout the UK. "I have spent time researching families’ needs and opinions and helping to produce support packs for siblings and for educational settings. I also help organise our family days and weekends. "My favourite part of this job is supporting families at a time that they really need it, when they feel at the end of the road and that they have no options, and then meeting them at an event when things have settled down… it makes my work so worth it.”
The Support Team clockwise from top left Louise, Abigail, Michelle and Lois
Louise, whom we introduced in last year’s Liver Life is our Young People’s Digital and Engagement officer. Louise is our point of contact for all young people aged 11 – 24 and is responsible for all our young people’s residential projects.
Abigail is our Services Administrator “I will most likely be the first person that families speak to when they ring CLDF for support, advice or any general enquires. I process all the literature requests and send out letters, packs and information with the help of our volunteers. I’m very involved in the planning of our event programme and my favourite part of the job is creating and sending out certificates to young people who have attended an event and got so much out of it.”
More support for our Scottish families This year, thanks to funding from the Robertson Trust, we are delighted to introduce a new role into the Support Team as Kate Conroy has joined us as Scotland support officer. Kate has enhanced the support we offer in Scotland by meeting families at clinics and introducing them to our services. She also works with Lois, to provide support to individual families where needed. “I have already met so many exceptionally brave families and children, helped them to meet other families going through a similar experience and know they are not alone,” she says. “My highlight so far has been the Scotland Family Weekend. To be part of something so special, bringing together families from across Scotland was amazing. The effort families made to come was inspiring, a lot of people travelled quite far and it took lots of planning from everyone. But how it paid off! To see the older children flying off on Segways and learning archery and the younger ones scavenger hunting and making new friends was fantastic. It was a privilege watching mums, dads and carers supporting each other, sharing experiences and making new friends while listening to inspiring speakers. It was a fantastic day in a beautiful setting and I can't wait to do it again next year.” Contact families@ childliverdisease.org
Kate Conroy
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CLDF launches new education packs Starting or changing school is a big event for any child but when your child has a liver condition, it is understandable that parents may have real concerns about how their needs will be met. It’s why we produce an education pack which tells schools, nurseries and colleges what they need to know about having a pupil or student who has a liver disease. We’re delighted to tell you that we have now updated our education pack to make it even more comprehensive for parents and teachers and to take into account the different provision for special educational needs in England, Scotland, Wales and Northern Ireland.
The packs are particularly valuable for Special Educational Needs co-ordinators. Amongst the positive feedback we have received is this: “I just wish there was something so competent and informative for more conditions, this was fantastic and will help us keep children in school for longer.” So if your child is about to start or change school and you do not yet have an education pack, please do get in touch with us at families@childliverdisease.org.
The new packs are proving valuable to parents. One mum who is preparing to send her little boy to nursery for the first time said: “The thought of him being cared for by anyone else terrifies me but we cannot afford for me to not work long term so that is a worry too. And we obviously want him to go to school and have a normal life, so your education pack is amazing as most people know nothing about caring for a transplanted immunosuppressed child.” Another said: “I could tell the school were a cross between nervous and dismissive and didn’t really understand the seriousness of what I was telling them. I was also terrified that I would forget to tell them something important! This is a great resource”. Schools are also finding them useful. We have already had feedback from a head teacher who commented: “I found this really useful as I did not know a lot about liver conditions before, but I would be well equipped in the future.”
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BP embrace the Big Yellow
Once again, Big Yellow Friday saw supporters all around the UK doing all manner of crazy yellow things to raise awareness and funds for CLDF. Schools, workplaces and community groups had parties, baked cakes or simply wore yellow to contribute to our fantastic total of ÂŁ65,848 and we are so grateful to all of you who took part. This year we enjoyed fantastic support from BP petrol station stores with 260 taking part on Big Yellow Friday and throughout that weekend. The staff were inspired by the story of six-year-old Enola, daughter of South East Regional
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Manager, Adam Whitehouse, who was very poorly and awaiting a liver transplant as Big Yellow Friday drew near. Keen to raise as much as they could, staff throughout the country showed their creativity and competitive spirit as they came up with a host of fundraising ideas from fancy dress days and filling a car with yellow balloons to static cycle rides and sponsored leg waxes. The result was a brilliant fundraising total of ÂŁ27,756.
Friday spirit “BP made a significant and highly visible contribution to Big Yellow Friday this year,” said Head of Fundraising, Sophie Burt. “And it was great to see how much fun their staff had doing so. We had many comments from families who were really pleased to see a household name supporting a cause which means so much to them. In fact, several of the stores are planning to continue fundraising for us which is great news. “We are also delighted to report that little Enola, who inspired BP, has had her transplant and is recovering well.” Big Yellow Friday will take place next year on March 6. For further details visit bigyellowfriday.org or contact fundraising@childliverdisease.org.
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Corporate round up Over the past 12 months we’ve enjoyed the support of a number of companies who have been fundraising for CLDF as their chosen charity. Bruntwood have raised an amazing £50,000 over the past three years through a mix of challenge events, quiz nights and golf days. The Birmingham-based property specialists chose CLDF because they wanted to support a smaller charity where they could make a big impact. You have certainly done that Bruntwood and on behalf of all our families a huge thank you!
Some 22 staff from Noble Interiors in Lincolnshire braved torrential rain and high winds to complete a 23 mile cycle around Rutland Water in September, raising a fantastic £2,830. “The conditions were awful but we’re a brave bunch and were happy to take on the challenge for such a great cause,” said team member, Virginia Moran. The Birmingham branch of office refurbishment specialists, Overbury, have chosen CLDF as their charity of the year. They began their fundraising with the Birmingham Velo and are already half way to their £3,000 target. Kelly Services in Birmingham chose CLDF as their charity partner for six months last year and raised £200 from a variety of fundraising activities.
Golf days have proved a successful fundraiser for Bruntwood.
The Birmingham office of the national law firm, Mills and Reeve, adopted CLDF as their chosen charity in January this year. Staff kicked off their partnership by holding a contest to decide which partner was their ‘Top Banana’. The lucky winner had the dubious pleasure of assisting with Big Yellow Friday bucket collections while dressed as banana! A challenge event is planned for later this year and the firm are also keen to help with one of our family or young people’s events.
Higgs and Sons Solicitors of Brierly Hill made a £1,130 donation to CLDF from the Higgs’ Charitable Foundation in December. They also took the opportunity for some unique corporate hospitality by taking a table at the Chefs’ Gala Dinner in March.
CLDF is rarely chosen for support by a business unless they have a personal connection. Please encourage your friends and family to nominate us as the Charity of the Year at their own place of work. Our fundraising team will work with them to create wonderful ideas and events, and, as our current partners tell us, staff love making a big impact on a smaller charity. Contact fundraising@childliverdisease.org
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Oxford based Perspectum Diagnostics have chosen CLDF as their charity for 2019. They began their fundraising by taking part in the Town and Gown 10K. To date they have raised a fantastic £1,700. And finally, we were delighted to receive a fantastic £11,700 from Waitrose. CLDF was one of three charities whom online shoppers could vote for between June and August last year. You can still nominate CLDF to be a chosen charity for your local Waitrose branch. Just pop into your local store and ask for a nomination form.
Haven't heard from us in a while? We love to keep in touch with you and update you on all the news and opportunities happening at CLDF, but under the General Data Protection Regulation (GDPR) we can only contact you about anything fundraising related if we have your consent. As we’re a charity fundraising news is obviously a regular feature, so if you think we’ve gone a bit quiet it’s likely that we simply aren’t able to send you certain information. To keep up to date with fundraising news, events and opportunities please complete a short form
on our website at childliverdisease.org/keep-in-touch/ where you can tell us how you want to hear from us by letting us know your preferred method(s) of contact. We want to contact you in the ways that suit you best and you can update your contact preferences or unsubscribe at any time by simply re-completing the form. If you would prefer to receive a paper copy of the form to complete please email us at info@childliverdisease.org or call us on 0121 212 3839.
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Making your voice heard As the voice of young people and families affected by childhood liver disease, CLDF gets involved with a number of other bodies to ensure your voice is heard. Here is a round-up of our activity over the past year: • Fighting obesity As members of the Obesity Health Alliance, we share and co-sign any letters and news that may be related to childhood health, exercise, obesity and its implications on Non Alcoholic Fatty Liver Disease. This year we have shared their messaging regarding sugar reduction and taxation on social media, we have also co-signed the Cancer Research UK statement which addresses decreases in and lack of public health funding. • Having our say on Scottish legislation As the Scottish Government considered a move to an ‘opt-out’ system for organ donation, CLDF attended the Scottish Parliament’s Health and Sport Committee to give evidence as a witness at stage one of the Human Tissue (Authorisation) (Scotland) Bill in November last year. Our Information and Research Hub Manager, Harpreet Brrang, provided comments and concerns regarding how this would affect families affected by childhood liver disease. As well as having an input into vital legislation, CLDF’s input gained 100 items of press coverage through this across the UK. • Meeting with Pfizer about vaccination in high risk groups We provided our families' views on vaccinations (in particular flu) as well as the barriers they face in receiving them. We also discussed how the voluntary sector can encourage behaviour change and work together to improve take up of vaccinations. • Representing liver transplant patients CLDF Chief Executive Alison Taylor co-chairs the Liver Patients Transplant Consortium. In this capacity, she wrote to the Health Minister and Head of NHS England to seek assurances around resource allocation to support increased activity as a result of changes to the organ offering system and higher donation rates.
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This group also sent letters to each of the Chief Executives of the liver transplant centres in the UK to ask for financial support for the British Liver Transplant Group to conduct a large-scale study into the experiences of liver transplant patients to help inform the developmental needs of the services. This support was forthcoming and the resulting project is gathering momentum. In November, CLDF was actively involved in lobbying with the NICE special technology appraisal panel to vigorously support the adoption of liver perfusion technology across the NHS to increase the viability and number of livers available for transplant. We were delighted to learn earlier in the month that NICE have approved the technology, paving the way for access across the country. Alison also sits on the Liver Advisory Group, which is the group of clinicians, surgeons and NHSBT staff who oversee the strategic operation of UK liver transplant activity. CLDF is represented on the British Lancet Commission on Liver Disease which released its fifth report in November 2019. Following the success of the Lancet Commission, the first European-wide commission has now been established and CLDF will be centrally involved in the paediatric project.
Presenting to European liver community In November, Alison presented at the annual conference of ESPGHAN (the European Society for Paediatric Gastroenterology, Hepatology and Nutrition) in Hamburg on CLDF’s experience of supporting young people during adolescence and transition. The presentation was very well received and the conference was also a great opportunity to network with pharmaceutical companies working in our sector.
Networking with UK clinicians CLDF had a stand at the annual conference for BSPGHAN (the British Society of Paediatric Gastroenterology, Hepatology and Nutrition) in Oxford in January. As well as attending a variety of working groups and meetings, we made connections with researchers who investigated prolonged jaundice and use CLDF Yellow Alert resources as well as meeting trainees who had not heard of us previously and took many of our resources to educate themselves further.
Making a difference in Wales We are delighted to be sitting on the Welsh Liver Implementation Board, supporting the significant development of liver care services in Wales. As a by-product of our work, the board awarded CLDF a further £10,000 to support our Wales family weekend in June.
And as part of National Voices, CLDF were co-signatories of a letter to the Prime Minister about the importance of avoiding a no-deal Brexit. We continue to work closely with NHSBT organ donation to promote Max and Keira’s Law and encourage the public to make their organ donation wishes known to loved ones.
Did you know? We are now involved in 11 networks which enable us to feed back patient and family voices and also make our families aware of developments discussed by these networks which may directly affect them: • Genetic Alliance UK • Rare Disease UK • Obesity Health Alliance • EURORDIS (European Organisation for Rare Diseases) • Prescription Charges Coalition • Liver Patient Transplant Consortium • National Voices • Specialist Healthcare Alliance • European Reference Network (ERN) Liver • European Reference Network (ERN) Transplant Child • AMRC (Association of Medical Research Charities)
Sharing your views on prescription charges As part of the Prescription Charges Coalition we provided comments during the NICE consultation on this issue and have also supported all lobbying for exemption from prescription charges for young adults with childhood liver disease.
Alison Taylor (centre) with some of her fellow ERN delegates at the annual EASL congress meeting in Vienna
Prescription charges are a real concern for many of our young people.
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Meet our
new trustees
CLDF’s trustees provide an oversight of our activities, contributing to the development of our strategy and future vision. Their faces and voices may not be as familiar to you as those of our support and fundraising teams, but they play a crucial role, ensuring that our policies and practices are in keeping with our aims and that we adhere to the legal and financial requirements of a charitable organisation. So we’re delighted this year to have appointed five new trustees to our board, all with different backgrounds and experience. This will further widen the range of skills our trustees bring to CLDF and be of real benefit as we seek to achieve our objectives over the next five years.
Phil Orme Phil, who has recently returned to the Midlands after 35 years living abroad, was keen to put something back into the community. “I was familiar with the charity’s work because I have known Mairi Everard, one of your current trustees, for many years and have always taken an interest in her role here, so when I heard that CLDF was looking for trustees I jumped at the chance,” says Phil. “I’m now semi-retired so have time to give to this role and with grandchildren of my own, I can really appreciate the impact that a diagnosis of childhood liver disease has on the whole family. “I’m an accountant by profession and the owner of a business which operates tug-boats in the Middle East. I’m also chairman of a marine insurance company and a director of an IT company so I’m hoping that my knowledge of the finance, business and IT sectors will be of benefit to CLDF.”
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Joel Glover Joel knew about CLDF as his son has biliary atresia. “I have a vested interest in the charity from a parent’s perspective,” he says. “My day job in HR for the Cabinet Office enables me to take leave for volunteering, so I’m delighted to be able to give time to a cause which is so important to me. I have ten years’ experience in a finance and commercial role so will bring my knowledge of the way organisations work. Having only known CLDF from a parent point of view, it’s been great to learn more about how the charity works and meet the staff. My first opportunity to do so was at the Chefs’ Gala Dinner which was a really slick, well-run event. I’m determined to help the charity to achieve its goals and, in particular, to increase revenue.
Dr Simon Colson Simon, a qualified medical doctor who worked in the NHS before pursuing a career in finance, is now working part time and was looking to offer his services to a charity. “I was keen to find a smaller charity without any statutory funding or significant public profile, but which was nonetheless doing invaluable work so when I heard about the opportunity with CLDF I saw it as a perfect match,” he explains. “I hope to offer my commercial experience to provide additional opportunities for the charity to secure donations and longer-term funding. I have strong governance skills and I believe that my financial experience (including having been an investment manager) will be of use in monitoring the charity’s non-cash investments. I am impressed by the professionalism with which the charity is run and I hope to help develop a more resilient financial position through some diversification of the income base.”
Professor James Neuberger
Kate Dinwiddy
Professor Neuberger may be a name familiar to some of you as he is consultant hepatologist at Queen Elizabeth Hospital in Birmingham. He is also Professor of Medicine at University of Birmingham and Associate Medical Director at NHS Blood and Transplant.
Kate is Chief Executive of The British Association of Perinatal Medicine, a professional association for people who work in neonatal units.
“I have over 35 years’ experience in adult liver disease and have seen at first hand the tremendous advances that have been made in the diagnosis and management of liver disease and transplantation,” says James. “Although I have not worked in a paediatric unit, I have seen the adolescents and those in transition to adult care and noted the impact of long-term conditions on the young person themselves and on their family and friends. So I hope I can bring some understanding of the patient and family perspective. As I have been active in clinical research, I hope to bring some knowledge and understanding of the benefits research brings and also help distinguish those ‘breakthroughs’ that are genuine and those that are more wishful. As I am now retiring from clinical practice, I will have more time to help and pay back all the benefits I have had.
“I've always worked in professional associations which are normally also registered charities. I wanted to take on a volunteer role and with my background, becoming a trustee seemed like something I would enjoy and have something to offer,” explains Kate. “I think I am a pragmatist, when there are lots of ideas flying around, I like asking the questions to work out exactly what needs to be achieved and make sure people are being realistic about how that’s going to happen. “My first impressions are that CLDF is a well-run friendly organisation that does a great deal with limited resources. I’m looking forward to being a part of planning the strategy for the next few years. I really enjoy the process of reviewing what has worked well and discussing where the gaps are. It will be a good opportunity for the charity to revisit it's aims and I’m hoping I will be able to offer some fresh ideas”
“I have little experience in money matters, both fund-raising and accounting but I am hoping to do what I can to improve the experience of adolescents and those moving towards adult care.”
Several of our trustees, long-serving and new, joined us for the Chefs’ Gala Dinner in March. From left to right: Tom Ross (chairman), Professor John Iredale, Georgina Sugden, Nick Budd, Alison Taylor (Chief Executive), Kate Dinwiddy, Mairi Everard, Joel Glover and Philip Orme.
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Get involved with research In October 2018, we launched the CLDF Research Hub, a ‘one-stop shop’ for families and patients to engage with research into paediatric liver conditions. Here Harpreet Brrang, our Information and Research Hub Manager, explains why it came about and how it will work: Over the last few years, in our conversations with patients and families, although it was clear that research was a key area of interest, the same themes kept popping up: • Difficulty navigating the research environment • Difficulty finding what is relevant in a way that is easy to understand and accessible • Desire to engage more and directly with researchers The voice of our families led to us taking action, and the CLDF Research Hub was launched!
So how does it work? The Hub aims to facilitate two-way communication between our families and the research community in a variety of ways: • Regular communications to our supporters, patients and families via news articles, social media posts, blogs and lay research summary posters to provide updates about what is happening in the research field.
• Enabling researchers to access those affected by a paediatric liver condition to participate in studies. • Patient and public involvement (PPI). The Hub enables our families to get involved in the design of research by becoming part of the Research Hub network. We will work with researchers to facilitate effective involvement, from the start of a study to the dissemination of the findings.
How is it going? At the end of 2018 we launched the Research Hub webpages childliverdisease.org/research/research-hub/ to communicate news and updates about research. We also began recruiting for parents, family members and young people affected by childhood liver conditions to become Research Hub members. It’s a work in progress but we hope to support two projects with involvement in 2019. We are incredibly grateful to all of our passionate members that have contributed to the development so far and to INVOLVE (UK National Advisory Group) and AMRC for the support we have received during the launch.
How can I get involved? If you want to become Research Hub member or want to simply find out more, visit the CLDF Research Hub webpage: childliverdisease.org/research/research-hub/
Professor Davenport shares developments in biliary atresia research Many of you will know Professor Mark Davenport, consultant surgeon at Kings College Hospital, who has a particular interest in biliary atresia. We’re delighted that Mark has produced for CLDF an overview of the latest research into and treatments of this condition which is now available at our Research Hub childliverdisease.org/biliary-atresia-20th-anniversary-ofcentralisation/ Thank you, Mark, for compiling such a comprehensive picture of research which is of huge interest to so many of our families.
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2018 IMPACT REPORT There are a huge number of different liver diseases which can affect babies, children and young people. The causes are largely unknown; many are lifethreatening and all require a lifetime of medical care. Children’s Liver Disease Foundation exists solely to support the needs of everyone affected by a childhood liver disease by: • funding and supporting vital research • informing and educating healthcare professionals, parents and the public about childhood liver disease and the signs and symptoms • campaigning to give young people and their families one strong voice • providing children, young people and their families with tailored support services.
“We are the only UK charity dedicated to supporting every family who faces the shattering diagnosis of liver disease in childhood. We know that our work makes a difference and we are determined to reach even more families to ensure every child with a liver disease can reach their full potential. It’s a tough target but, by working hand in hand with our supporters, partners and health care professionals, it’s one we believe we can achieve.” Alison Taylor, Chief Executive
Research Research lies at the heart of providing a brighter future for children with liver disease. In 2018 CLDF made research funds available via two grant rounds. BSPGHAN (the British Society for Paediatric Gastroenterology Hepatology and Nutrition
Information and Education We continued to review our medical and support literature to ensure it is concise, patient-friendly and updated with the latest information. It is available to young people, parents and health professionals in leaflet form or via our website. Last year we distributed 45,742 leaflets using all media channels. Our children’s story book, ‘Joe’s Liver Transplant Story’ is now being used by specialists as part of their preparation of children for transplant. In September 2018 the book won the Information for Children award from the British Medical Association. The award judges described it as
‘A unique resource – vitally important in explaining a life-changing massive operation to young children….it deals with a sensitive topic in a way that is highly accessible to its target audience.’
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At our National Conference and Family Weekend in Stratford upon Avon in October, experts gave a total of 30 presentations on topics ranging from the latest developments on research into childhood liver disease to the psychological impact of growing up with a liver condition.
Presentations
“Children’s Liver Disease Foundation is important to us because they provided us with information about our daughter’s rare condition and were there with emotional support through what was an incredibly difficult time.”
“The information CLDF provided gave me a much greater understanding of her liver disease and that helped me to become a better ‘more together’ parent.”
Supporting families and young people A diagnosis of childhood liver disease means a lifetime of medical care and has a huge impact on the child, their family and friends. CLDF’s role varies according to the needs of the individual - from helping families find their new normality to supporting young people to take responsibility for their liver condition and ultimately transfer into adult services.
Throughout 2018
We attended
hospital clinics
across the UK
1,051young people
had contact with CLDF.
connecting with c
715 families
We also had
and we increased support
for families
and young people
1,816
contacts with parents, friends and relatives.
At our CLDF events in 2018
“We would be lost without CLDF’s support on our journey with liver disease and through them we have met others on similar paths, many of whom have become our closest supporters.”
“We love the family weekends they organise here in Northern Ireland, when we get to meet up with other families whose children have liver disease.”.
Voice During 2018, members of the CLDF team travelled 10,962 miles to 12 cities to ensure that the interests of our young people and families are represented at a national and international level. We are actively involved with:
Fundraising Our small but passionate fundraising team works to provide income which can be used to deliver the charitable objectives of the Foundation. CLDF works across all traditional fundraising income streams and benefits hugely from funds raised by the families themselves.
A HUGE
THANK YOU
to everyone who took the time and trouble to raise funds for us in all manner of ways in 2018. We simply could not do the work we do without you.
Incoming Resources
Funding CLDF's work
Resources Expanded
Investment Income
£13,036 Restricted Voluntary Income
£162,770
Unrestricted Voluntary Income
£588,373 Total:
£764,179
Fundraising and publicity
Research
Education and Awareness
Emotional support and activities
£308,152 £244,809 £134,350 £69,762
Total:
£757,073
“The charity does so much, not just for the children who have to live with a liver disease, but for the parents and siblings on how to cope with the effect it has on the whole family. It’s great knowing that there is someone there to listen.”
My liver disease didn't stop me.. Pursuing my dream job Sophie, who is 22, has always wanted to be a nurse and even though her education was disrupted when her liver began to fail, she still has her end-goal very much in sight. “Although I have biliary atresia, I never had any major health problems throughout my childhood. I did fine in my GCSEs but it was after that I started to get very poorly and I was put on the transplant list. I received my transplant when I was 19 and feel lucky that it was a success. However, being in hospital so much meant that I missed a big chunk of education - the college years, when everyone else is out getting experience and qualifications. I also missed out on resitting my English Language GCSE – essential for getting onto a nursing course – and anything else. “It was frustrating but I have wanted to do this for so long I didn’t want to settle for second best. So I started working as a healthcare assistant, doing bank hours at my local hospital to gain experience and gained a place to redo GCSE English Language on a course which will start in September. Now I have been offered a part time job at the hospital which will fit in perfectly with my college course – and my English resit which I am sure will be third time lucky! I may be a little bit behind in my original plan but in other ways I have achieved a lot. My boyfriend and I have our own place, I’ve gained valuable experience in nursing, and working as a healthcare assistant in a hospital means I get experience ready to apply for university and I can save to learn to drive, which my condition prevented me doing at 17. Having a liver disease can disrupt your education but you can’t let it stand in your way. Yes it’s annoying, but if there is something you really want, my advice is go go go!”
Sophie is working as a healthcare assistant at her local hospital
Becoming a lifeguard Madeline, who is 17, had always wanted to be a lifeguard but was diagnosed two years ago with autoimmune liver disease. “I have always been sporty,” says Madeline. “I started scuba diving at 11, I loved swimming, hiking and was even a tennis umpire. My long-term plan was to qualify as a lifeguard, go to university, travel and then start a career as a neuropsychologist. “Life doesn’t always go to plan though as I found out when I was 14 and started to feel so tired all the time. Tests indicated a problem with my liver and, after being transferred to Kings College Hospital, I was diagnosed with autoimmune liver disease, a condition I had never even heard of.
“I was determined not to give up on all my plans” “When I first came home from Kings I couldn’t stand or walk and could only get out of the house using a wheelchair. It turned out that I also had chronic fatigue syndrome. I was unable to complete my last year at school and had to be home tutored for a few hours each week. “It was grim really – I felt very isolated but I was determined not to give up on all my plans. So last year I passed my BTEC Art course at college and now I’m studying A levels in Ancient History and Psychology. The best thing to happen though was an opportunity to do lifeguard training through a scheme which was run by Suffolk Sport. Now I have a part-time job as a lifeguard at a local private school. Even better, I passed my driving test recently and I feel so much more independent! “I do appreciate that having these two conditions means that some things might be more difficult for me but if there is something I think I can do then I want to do it." Madeline’s commitment to rescue is not confined to humans. She has just qualified as a Marine Mammal Medic which means when a mammal such as a seal or dolphin becomes stranded on the Suffolk coast near her home, Madeline could now be called out to help save it. She is set for a busy summer!
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My liver disease didn't stop me.. Getting my uni place Mackenzie was diagnosed with auto-immune liver disease when she was 16 and had just started in the sixth form. “Until that point, I had wanted to be a doctor, but I missed so much school I had to drop from four A Levels to two and I spent so much time in hospital it changed my views on following a medical career. I decided on hospitality instead and although I enjoyed it for a while, I knew it wasn’t my long term goal. After taking time out and travelling, I returned and sat down with my family to discuss my career path and alternative options I had available. It became clear very quickly that I knew what I wanted to be was a youth worker and I began to focus on how to achieve this.” “I contacted Louise, CLDF’s Young People’s Officer, for help with this because I knew it would involve a specific degree and was worried because I didn’t have the necessary UCAS points. Louise told me not to dismiss the idea, she encouraged me to go to Derby University’s open day where I was able to meet lecturers and tell them about my passion for the course and explain why my health problems had prevented me from meeting their usual grade requirements. She also helped me with my personal statement and in preparing for my interview. I am so excited to get a place and I start my degree in Youth and Community Development this September!”
Mackenzie took time out to consider her options
“To gain some experience, I helped out with CLDF Breakaway recently and I loved it. It’s taken me a little while to find out what I really want to do but my message to other people like me is, it’s not a race – you don’t have to do everything at the same time as everyone else. If liver disease has disrupted your life, there’s nothing wrong with taking a step back to think. And don’t be scared to ask for help. I’m very happy I did.”
For young people’s support email ypo@childliverdisease.org
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Mackenzie was 16 when she was diagnosed
Qualifying as a doctor Twenty-three-year-old Stuart has just fulfilled a long-held dream by qualifying as a doctor. “It’s something I’ve wanted to do but was aware that it was hard to get into, even without the health problems,” says Stuart, who has auto-immune sclerosing cholangitis and other health issues. “There were certainly times at high school when it was doubtful if I would get the grades and because I had missed schooling due to illness and didn’t get the results I needed, I had to do a preliminary year at university to show that I was capable of doing medicine.” “As I went through medical school, the fatigue was the main problem. There were some days when I just felt dead on my feet. However I would say to anyone with a liver disease who has a goal in mind, the question to ask yourself is not ‘can I really do this?’ but ‘how much do I want this?’”
Stuart graduated this summer
“I think you can always find reasons not to do things but, if you really want something, try not to let anything stand in your way. There is a quote which I can’t claim the credit for but it was in my mind a lot when I was training: 'illness is a motivation not a limitation!'” “I’ve always been open about my health problems and generally tutors and fellow students were very accepting and understanding. There was just one occasion when a hospital consultant asked me ‘how are you going to cope when you graduate?’ I was taken aback, but not for long.” In August, Stuart starts work at Ninewells Hospital in Dundee and is adamant that the long spell he spent in hospital around the time of his diagnosis when he was just eight, will make him a better doctor.
Stuart always wanted to be a doctor
“Without question my experience will not only make me more sympathetic to patients but to their families,” he says. “I was too young to fully appreciate how poorly I was but it must have been such a worry for my parents and I will always bear this in mind when talking to relatives.”
Introducing CLDF to hospital staff In April we introduced Healthcare Professional Packs into specialist liver units and regional liver clinics. The packs are aimed at new starters, including specialist nurses, ward staff, family support workers, play specialists and psychologists, and provide an introduction to CLDF and the services we can offer. We’re delighted to report that they have received a warm welcome: “The healthcare professionals introductory pack is a comprehensive guide, which we are able to share with
our colleagues from other hospitals caring for children and young people with liver disease,” says Natalie Lynch, a liver clinical nurse specialist at Kings College Hospital. “It’s well organised, informative and provides materials for professionals to pass onto patients and families who will greatly benefit from being part of CLDF. It also clearly signposts the resources available for professionals to better understand liver disease, and therefore provide expert care.”
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Getting through the bad times Many parents tell us that the toughest times are those first few weeks after diagnosis, when they are coping with an overload of medical information and often juggling family life with the hospital. Emma, mum to two-year-old Rhys and four-year-old Benjamin, tells her story. We first became aware that Rhys was unwell at his sixweek doctor's check when it was noticed that he wasn't putting weight on and was still jaundiced (although to us the jaundice wasn't that obvious). He was sent to our local hospital where he spent one week before being transferred to Birmingham where they told us that he has Alagille syndrome. We then had regular contact with the hospital in the form of consultant appointments plus a week’s admission to start him on tube feeds when he was again faltering with his growth and weight gain. This was a constant battle for us, alongside increasing amounts of itching. He also had scans on his liver which confirmed that it was deteriorating and that his spleen was increasing in size due to portal hypertension. When Rhys was 13 months old he was listed for transplant and it was shortly after that that the real hospital admissions started, as doctors realised that his condition had become
Rhys in hospital
unstable. The admissions were all due to bleeding caused by his portal hypertension. These visits occurred about once a month where medication to stop the bleeding and an endoscopy to investigate were needed each time. We were never too fazed by the bleeds after the first one, as we knew that there was medication to stop them. It wasn't until the bleeds started getting really big and closer together that we started to worry, and it was at that point we were told that we would have to stay in hospital until the transplant. The bleeds became weekly and continued to increase in severity to the extent that the medical staff were struggling to stop them. We continued to live with hope that Rhys would get a liver transplant in time, but things were becoming desperate. He was lucky and he received his transplant when he was 20 months old. Unfortunately, we ran into more complications and more bleeding post-transplant which meant we were in PICU for a whole month and then spent another two months on the ward. Having a child with a chronic a liver condition has always been hard on our family, especially when we would often have to stop what we were doing and head straight to the hospital any time day or night or even on holiday, when he had his bleeds. This was always hardest on our then three-year-old who knew that Rhys had a poorly liver but didn't understand exactly why we had to dash off and leave him all the time. The four-month stay around the time of Rhys’ transplant was obviously the worst time for us all, especially as we were an hour away from the hospital and, with my partner working full time, it meant that I only got to see Benjamin once a week for a few hours. This was very tough on both of us and did lead to him having some problems at preschool. Even now he gets very nervous every time Rhys has to be admitted to hospital.
"Even now he gets very nervous every time Rhys has to be admitted to hospital."
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Our first contact with CLDF was in the form of leaflets around the time of Rhys’ diagnosis. After that I used the website quite a lot to get a feel for what the future held but at the time the stories just filled me with dread. During our long hospital stay, visits from Lois from CLDF as well as other support workers were always very welcome, both for advice and for someone to talk to. CLDF have just sent us a very useful information pack to give to Rhys’ pre-school and Benjamin loved the transplant story book they sent, as it really helped him to understand what was going to happen to his brother.
"Try and talk to other parents" Since leaving hospital Rhys has flourished. He has started doing everything that his condition was holding him back from, such as walking and even being able to swallow food and drink. He has also started to grow and gain weight and we are being able to pull back on his tube feeds with the hope of eventually getting his tube out. The dreaded itch has also gone. So even though the thought of a transplant was initially scary, when you know your child would otherwise not
survive and you see the life he now has compared to the dark and scary times before, it's much better. The problems we now face relate to him having a low immune system and the constant worry of his body rejecting the liver. Simple childhood illnesses and bugs now often land him a stay in hospital but the rest of the time he is really happy and well. The initial diagnosis was certainly one of our worst moments. It's something that we never expected to happen and learning that it could be life-limiting is very tough. For other parents in that situation, however, I would say that as soon as you get used to the idea and all the medications and tube feeding if needed, it all just becomes part of daily life and much easier to cope with. Financial support through DLA, Carers' Allowance and tax credits can all help and there are grants that can be applied for. I would also say that if you are ever in hospital, especially when on one of the liver wards, try and talk to other parents. Their experiences can be very informative and give hope of a positive future. You also make good friends who share your daily struggles and are there to talk to. It also feels good to help out new parents going through their initial diagnosis because before you know it you are one of the experienced ones.
For support contact families@childliverdisease.org
Rhys with his big brother now
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Bringing families together CLDF family events are a great way for families to meet us, meet each other and most of all have some fun. Over the past year, our events have covered the whole of the UK and included special family days themed around Alice in Wonderland and The Greatest Showman, regional weekends in Scotland and Northern Ireland and, of course, our annual family picnic. Head of Support, Michelle Wilkins, explains: “When planning our events programme, we do take into account the views of our families. This year we found there was a real need for conference style events in Scotland and Northern Ireland where families find it too far to travel to our main conference in the Midlands. But there was still a requirement for fun events too which would appeal to younger children. Our intention was that by including both in the programme, we have something for everyone, wherever they live. “We appreciate that families these days have really busy lives and to put aside a day or a weekend takes real commitment, so we want people to go home feeling that they gained something really worthwhile from their time with us.”
"It's great that the day involved the whole family, because it's important that our other children understand too." “Obviously parents can get a lot of information online, but children’s needs are different. To hear one young girl reassuring another, whom she had never previously met, about a forthcoming hospital procedure or to see two young lads proudly showing off their battle scars to each other as I did this year, is a real joy and shows families get something really meaningful from these events.” Those who have been to this year’s events agree. Azif and his wife Nazneento, whose daughter, Faziah, had a liver transplant five years ago, brought their family along to the Alice in Wonderland themed day in York – their first CLDF event.
“We wanted our children to meet others with similar problems and to create solidarity around the issue,” explains Azif. “ It was great that the day involved the whole family because it’s important that our other children understand the nature of Faziah's illness and how it affects her and others. For Faziah, meeting and making friends with other children in her siituation can improve confidence so we will definitely be interested in future events!” For Laura and her husband Alec, simply being able to take their 15-month-old son, Billy, out to mix with other children was a novelty. Although Billy was progressing well since his liver transplant five months earlier, months of living in hospital followed by avoiding public places had led to the family feeling isolated. “The only way we could prevent Billy from getting ill, as we had been advised, was to limit his contact with others that could be infectious,” says Laura. “And while it was brilliant to see him getting better, I did start to feel something of a recluse. I was also conscious that Billy was not getting to mix with many other children. So when we heard about the family day, we were very keen to take up this opportunity to mix with like-minded families and the event did not disappoint.” “With all the entertainment and food there was a real party atmosphere and after all that time in hospital and then confined to the house, a party was just what we needed. Billy even got to interact with other children his own age which was a real bonus. We shall definitely be going to future CLDF events and it’s going to be even better when Billy gets a bit bigger and is able to join in the fun!” “Many families who have been to several CLDF events still find the experience valuable. Kirstin, who has been coming along ever since her eight-year-old daughter, Erin, was a baby, says: “We feel stronger after spending time with our amazing liver family (including Team CLDF) which helps boost us in our ongoing journey dealing with liver disease.” And the last word should go to Erin herself who sums it up very simply: “I've met lots of nice friends at CLDF days. When I'm with them I feel like a normal person, because they all have liver disease too. It feels nice to be the same as everyone else.” To find out more about CLDF events or to book a place go to: childliverdisease.org/events/ And remember CLDF organise a range or trips away for young people aged 12 – 24. If you would like to find out more go to: childliverdisease.org/young-people/
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Faziah and her mum enjoyed their first CLDF event
Why I love being part of the Breakaway team Annie Thomas, a clinical facilitator at Kings College Hospital, has joined the CLDF team on a number of our young people’s trips. Here she tells us why she keeps coming back. I ended up being a last-minute addition to Breakaway, then known as ‘Closer to the Edge’, in 2015 to be the resident nurse. As still quite a junior nurse, it was a daunting prospect to be the only nurse and the thought of the responsibility was overwhelming. After five years and being a part of seven residential trips for CLDF, I can definitely say this was the best opportunity and I’m incredibly happy I took on the role. Being a nurse on Breakaway involves lots of hard work, plenty of paperwork, long hours and a camp bed in the forest. However, all of this is worth it when you see the transformation of the young people from the first day, when they arrive nervous and shy to the final day when they have made lots of friends, they’re talking about the amazing time they have had and saying they just want one more day of camp. It is one of my favourite weeks of the year as I know it will be full of laughter and will make a real difference in young people’s lives. At Breakaway, we do not focus on the liver condition young people are diagnosed with. The focus instead is upon the young people themselves, giving them great experiences and allowing them to be themselves and meet others. It is amazing to watch over the course of the camp, young people open up about their experiences and share their
stories and support each other without judging. One of my favourite moments during a camp was when a group of girls told us how they how shown each other their scars and, through doing this, had become more accepting of their scars and what they represented. Through working on these camps, young people’s resilience has amazed me. They get involved and work together as a team to carry out lots of activities, run a forest camp for 24 hours and face their fears by climbing the high ropes course. Within a matter of hours and days, relationships and bonds have formed, they support each other through their fears and create what I always hope will be life-long friendships. As a nurse on a liver unit, we strive to care for children and young people to help give them a life and a future outside hospital. CLDF has given me a unique perspective to see young people living their lives and not being defined by their diagnosis. I am proud to be a part of the team at CLDF, as at the heart of everything they do, they always put the child, young person and family first!
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How we feel about our battle scars Many children who have liver disease live with a scar, either from Kasai surgery or a liver transplant. Young people’s attitudes to their scars can vary enormously and affect how they feel about themselves and their liver condition. Seven-year-old Emily received a living related transplant from her uncle when she was six months old and is very matter-of-fact about her scar. “We explained to Emily why she has a scar as soon as she was old enough to understand,” says mum Lindsay. “We wanted her and her sister to know why she has these hospital appointments, so we have always been very open and answered all her questions. Obviously, she has no memory of the transplant – it’s just a story she likes to hear. “Her scar isn’t something she particularly talks about, but she’s not embarrassed about it either. I think it helps that my brother also has a scar from his own surgery. It’s a special connection the two of them have and it reinforces the point we have made that a scar is just a scar. It doesn’t mean you’re ill or can’t do stuff.” Charles, also seven, had his liver transplant at six months. “I don’t remember when he started asking about it but we have always been open in talking to him about it and telling him in an age-appropriate way about his illness and his new liver,” says mum Sophie.” “As he has got older, he has asked more detail about the how and why of his transplant but he has never been self-conscious about his scar, is happy to take his top off in public and most of the time doesn’t even notice it. He has never been laughed at or made to feel different – he even did a kind of 'show and tell' at school about it.” “Charles says his scar makes him happy and calm when he looks at it. We definitely feel a great sense of gratitude when we see it, knowing
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how close we came to losing him – his scar reminds us how lucky we are to have him!” Harry, who is 16, had his transplant when he was just 11 weeks old and although he is now well and likes to be active, he is still not comfortable about his scar: “I have a passion for swimming but whenever I go into a swimming pool, I feel that everyone is staring at me,” he says. “I don’t feel comfortable – I feel embarrassed.” Millie, who is 17, says her attitude to her scar has changed over the years: “I have always had a scar from my Kasai and when I was little, I used to forget it was there most of the time. If anyone asked me about it, I would tell them that I had a poorly liver and the doctors had made it a little bit better.” “A couple years before my transplant, around the age of 13, I became really self-conscious about my scar and I started to hate it. It began to really bother me as I felt so alone because I wasn’t ever around anyone else who had scars. Since my transplant, even though I now have a bigger scar, I actually love it.” “It makes me different from everyone else. I have spoken to other young people who have had liver transplants and I like knowing that we all have them for the same reason. I like to think that my scars represent the battle that I have been through with liver disease and to me it shows that I was stronger than what was trying to beat me.”
Jemma Day, clinical psychologist at Kings College Hospital’s liver transition service, has some advice for parents. With young children, it’s good to talk about their scar as you do anything else that belongs to them. This shows that you are comfortable with it and gives them the message that it’s fine to talk about it and be proud of it. Give clear and honest information right from the beginning, that fits with their level of understanding. Explain that the operation was to help them get better, using simple words they understand. More questions will probably follow, but just answer each one in turn, not hiding things but not necessarily offering information that they haven’t asked for. If you don’t know the answer to a question, tell them that you are not sure, and you can ask their medical team about it together at their next appointment.
As your child gets older, their ability to understand medical information will develop, so more than one conversation about their transplant will probably be needed. Ask your child’s hospital team for support with this if you feel you can’t answer their questions. The CBeebies website also has some resources for helping parents talk to their children about hospitals www.bbc.co.uk/cbeebies/grownups/getwell-soon-hospital. Children’s feelings about their scar seem to be as unique as they are; some seem rather indifferent to it, some don’t like the shape or look, and others are immensely proud! Again, having a positive approach to their bodies in general supports adjustment to their scar and any other physical changes that might come with a liver condition and treatment. There’s some research evidence from children with other types of visible difference that they feel more confident if their difference has been present from birth rather than later in childhood or adolescence, but we don’t know if this is also the case for young people with liver transplants. One of the reasons suggested for this is that children and their peers get used to the scar before appearance becomes more important in adolescence. Sometimes the experience of surgery and memories of being in hospital can impact on how children feel about their scar, particularly if the admission or recovery process was complicated or challenging. Talking to your child about their scar is not always easy, especially given the process of liver transplant is often very difficult for parents as well. Sometimes your own feelings can get in the way and make it harder for you to talk openly and honestly with your child. If this is difficult for you, speak to your medical team or contact the CLDF support team.
Self-esteem There is not much research into self-esteem in young people with liver transplants. The results of a small study we did in our transition clinics at King’s did indicate that body image was a bit worse for young people with liver transplants than their healthy peers. However, this was also true for young people with other liver conditions, suggesting that poorer body image is not simply explained by the scar alone. In general, body confidence seems to be lower in young people with chronic conditions, regardless of whether there are any obvious cosmetic implications or not. Confidence can take a big knock in adolescence, especially when it comes to appearance and looking different to your friends. It typically varies depending on the situation too: for
example, a young person might feel confident in their ability to do well in exams, but might feel less confident about socialising with other teenagers. People are not born with high or low self-esteem: it develops over time and can fluctuate. Body image also tends to be related to how much emphasis is placed on looks and appearance within their social world. On top of all this, if a young person has difficult experiences, this can affect their self-esteem and their relationship with their condition. It is very normal for young people (and adults!) to compare themselves with others but part of building confidence is about recognising their own qualities, skills and talents too. We can’t change whether we have a condition or a scar, but there are things we can do to change how we feel about it. Young people might need some support with this. • If a great deal of a teenager’s self-worth is pinned on how they look, then a scar or perceived ‘imperfection’ can affect their confidence much more than if they value talents such as kindness, friendship and humour over their appearance. Talking to your child about things you admire about them can give some balance to this. • If a young person does experience a negative reaction towards their scar, thinking that this reflects badly on the other person rather than on their scar or themselves can make the situation feel easier to manage. You can gently encourage this mindset at home by minimising how much you talk about other people’s bodies. Sometimes even making positive comments about how celebrities look can give an inflated sense of how important appearance is. Keep conversations about bodies to explaining how they work and encourage the idea that their body is an instrument rather than simply something to be looked at. • Although it is tempting to immediately reassure your teenager that their scar looks fine or beautiful, it’s also helpful to acknowledge if they don’t feel this way and let them know it is okay to talk about it if they want to. For guidance on supporting your child’s self-esteem you’ll find some useful information on the Changing Faces website. Or contact the CLDF support team at families@childliverdisease.org
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Fantastic F We could not do what we do without our amazing supporters who keep coming up with new ways to raise funds for us. Here are just some of the fantastic fundraising events of the past year.
Many happy returns Lynne Hatcher asked for CLDF donations instead of presents for her 50th birthday and raised £332.62. Lynne is pictured here with her husband Martin and triplets Jamie, Abigail and Matthew, who have recently celebrated their 21st birthday. Jamie (right) has biliary atresia and continues to do well following his Kasai.
Thomas inspires big brother’s Boys' Brigade The First Milltown Company of the Boys’ Brigade raised £1,300 at their annual enrolment service, having been inspired by the baby brother of one of their members. Two-year-old Thomas, whose brother, Joshua, is a member of the Brigade’s junior section, has biliary atresia and received a liver transplant in October 2017. “We always choose a charity to benefit from our enrolment service,” said Raye Grenaway, Lieutenant in charge of the Milltown junior section. ”And as we were celebrating the 50th anniversary of the junior section this year it seemed very fitting this year to support a charity that means so much to one of our families.”
Student siblings put best foot forward Brother and sister Susie, 23, and Freddie, 21, who are both students at the University of Bath, ran the city’s Half Marathon in March to raise funds for CLDF. “As this was the only semester that we overlapped, the half marathon seemed the perfect opportunity to do some fundraising together,” said Susie, who has alpha-1 antitrypsin deficiency. We knew that simply making it to the finishing line would be a challenge as neither of us had done this before!” The pair rose to the challenge however and not only completed the course but raised £760 for CLDF. Well done both!
Pickle Wars raises over £7,200 The annual Isle of Wight Pickle Wars, which took place at the Woodvale Hotel in Gurnard in January, raised an amazing £7,200 for CLDF. The pickled onion making contest was started by Terry Ashdown as bit of fun 18 years ago and became a fundraiser after Terry’s grandson, Daniel, was diagnosed with liver disease. The Pickle Wars is now a real fixture in the Isle of Wight calendar. A huge thank you to Terry and all the community in Cowes for making this fantastic event happen.
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Fundraisers Sandra’s fundraising Easter stroll Sandra Ison and her 14-year-old son, Ben, certainly earned their Easter eggs this year. The pair spent Easter Saturday doing the 25K Easter Walk at Windsor and raised £415. “I completed this walk last year with my daughter, Amelia, who has autoimmune liver disease,” said Sandra. “At the time I said, “never again” but then once my feet had stopped aching I thought, “I could do that again”. It was a challenge and a great achievement to know that I will have completed 25K and raised much needed funds for CLDF”. It certainly was, Sandra and Ben, thank you!
Gordon’s garden local Booking the right venue for your event can sometimes be tricky. Gordon Worthington overcame the problem by building a pub in his back garden and inviting everyone round! The garden party was such a success that it raised over £500, despite the fact that England were playing on the same night. Gordon was so pleased with the result, he is planning another party for September. Well done Gordon. We hope you get the same great weather next time too!
Katy climbs Kilimanjaro Katy Steinhardt had wanted to climb Kilimanjaro since she was a little girl. “The first time I remember seeing it, snow was on the top of it. I grew up in Nigeria and we flew over it on a special holiday in East Africa,” she says. “I needed a real challenge to raise money to say thank you to CLDF and wanted to see it whilst it still has snow. I’m so glad I made it!” Katy not only fulfilled her ambition in September but raised a fantastic £1,400 for CLDF at the same time. Well done, Katy!
Michael and friends do the Full Monty Michael Butterfield persuaded six of his friends to perform a Full Monty routine for CLDF at a local hotel last November and raised an amazing £7,000. “The local community were brilliant at giving raffle and auction prizes and everyone who came gave so generously,” says Michael’s wife, Emma, who helped organise the event.” “And our performers, who had worked so hard practising their routine, thoroughly enjoyed themselves! It was a real fun evening and we’re thrilled to have raised so much.”
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Saluting our young As a children’s charity we have been really proud over the past 12 months to have so many young people raising funds for us. Whether they have a liver condition themselves or they know someone who does, our young fundraisers have shown some real drive and creativity.
Faith's friends do fun run Seventeen-year-old Faith organised a Big Yellow Run at her sixth form at Castle Rushen High School. Students set themselves a target of running 100 miles and raising £500 but they exceeded both goals, running 286 miles and raising over £2,000! And even though Faith wasn’t well enough to take part in the run herself, she enthusiastically helped to promote it – at one point going straight from hospital discharge to school for a radio interview!
Kayla (front centre) celebrates her charity night success with her family
Theo’s close shave Seventeen-year-old Theo raised £226 by having his head shaved at college. “It might not be the best look for me,” he says. “Although it feels great, I don’t intend to keep it!”
Faith (third from right) and her friends plan for their Big Yellow Run
Kayla’s charity night Although only ten years old, Kayla is a seasoned CLDF fundraiser and loves to take part in Big Yellow Friday. This year, she organised a charity night complete with magic show, karaoke raffles and buffet and raised £350. This brings Kayla’s fundraising total to date to an amazing £6,085. Fantastic work, Kayla, thank you!
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Theo won’t be sticking to his new look
Alex takes on mud run When ten-year-old Alex, a year six pupil at Boxford Primary School in Suffolk, heard that his teacher, Stuart Wainwright, was running the Colchester Half Marathon for CLDF, he was inspired to take part in a mud run and donated the £45 he raised to CLDF too! Well done Alex on completing your challenge, and for your kind donation.
fundraisers “Hannah has been the biggest help and support to me over the years with my fundraising and she always encourages me to go big with it all,” says Katherine. The girls have clearly hit on a winning formula as between them they have raised a fantastic £6,800!
Energetic Alex did a mud run for CLDF
Kaylee’s climb Kaylee from Caerphilly was 13 when she completed her sponsored walk up and over Pen y Fan and Corn-Du raising over £400. “It was so nice to be able to walk up a mountain with stunning views for such an amazing cause,” she says. “I’m so proud that I was able to complete it and especially to have raised so much for a charity so close to my heart.”
Katherine (left) encourages her friends to fundraise on Big Yellow Friday.
Ada’s running debut Four year old Ada decided it was time to make her fundraising debut so encouraged her friends to join her in the Leeds 1.5K mini run. Not only did they all complete the course but the mini runners raised a fantastic £1,000. Brilliantly well done all of you. We look forward to seeing you in the London Marathon one day
Kaylee climbed Pen y Fan for CLDF
Katherine continues the family tradition Katherine, who is 15, has been at St Paul’s High School in Bessbrook, County Armagh for four years and she has encouraged the school to put on a Big Yellow Friday event every year. She is following in the footsteps of big sister, Hannah, who hosted a Big Yellow Friday event for the seven years she was at St Paul’s.
Ada (right) and her friends prepare for their fun run.
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Families hear from the experts at national conference We were delighted to welcome 180 guests to our National Conference in October and it was wonderful to see that young people and families had travelled the length and breadth of the UK to be with us in Stratford-upon-Avon. With the little ones happily entertained in the creche and older children off to a (rather damp) Drayton Manor, parents were able to hear from experts on a range of topics including
Families had the chance to meet others and hear from experts.
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the latest in paediatric liver care, research highlights over the past two years and likely developments in transplant surgery. Meet the Expert sessions over lunch gave people the chance to ask questions on specific liver diseases, whilst afternoon sessions provided an opportunity to speak directly to specialists on topics ranging from managing symptoms of chronic to liver disease to transition to adult services.
William Shakespeare even paid a visit.
Those who decided to stay overnight were treated to a visit from William Shakespeare before enjoying an evening meal and family disco! And the next morning families enjoyed a leisurely boat trip along the River Avon. Chief Executive, Alison Taylor, commented: ”We loved seeing so many of our families and young people all together and are delighted to have had such positive feedback already. We are really grateful to the consultants, specialist nurses and psychologists who took the time to
come along, speak and answer questions. We are conscious that not everyone is able to get to the National Conference so we are currently exploring new ways of providing information and social days like this in a way which is more inclusive and accessible for families throughout the UK.”
West Midlands FAMILY FUN DAY 12pm – 4pm
Join us for our final family event of 2019 Details are now confirmed for West Midlands family day on Saturday December 14. Join us at Rowheath Pavilion in Bournville, Birmingham from 12pm – 4pm for fun, food and festivities. As ever there will be plenty of games and activities, the chance to meet other children and families and of course a visit from Santa! For further details and to book go to childliverdisease.org/events. Supported by Mills and Reeve
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A day for remembering
On June 30, we held a short but special service of remembrance for those children who have lost their fight with liver disease. Three families joined us at the National Memorial Arboretum in Staffordshire, while many more sent us messages for our commemorative butterflies, both in memory of their own children or to commemorate the incredible gift of a donor. After a service in the Millennium Chapel, we visited the CLDF tree where families released doves into the sky as a gesture of remembrance. “It was a very special day both for CLDF staff and those families involved, and we feel privileged that people made the effort to come and remember their loved ones with us,” said Alison Taylor. “The rainy conditions meant that we were unable to place our commemorative butterflies on our tree so instead they are making up a beautiful and moving collage in our office.”
In Loving Memory
The display of messages from families
Jayden Rogers 18th July 2018 – 7th October 2018 Noah Finnerty 28th May 2018 – 21st November 2018 Georgia Eatherly 21st January 2016 – 1st February 2019 Habib Ali 17th February 2009 – 12th February 2019 Andrew Nugent 20th January 2000 – 10th February 2019 Alina Younas 18th October 2003 – 9th April 2019
Transplant Games It was lovely to meet so many families when the Transplant Games came to Birmingham last summer and we felt especially proud to see lots of our young people winning medals. Alison was at the British Transplant Games in Newport over the weekend of July 27 and 28, catching up with our families and celebrating yet more winners!
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What I get from volunteering Shula is enjoying volunteering for CLDF
In last year’s Liver Life, we put a call out for volunteers who might be able to help us with fundraising. We’re delighted to report that several people got in touch and we’re now building up a network of volunteers around the UK. One of our new recruits, 24-year-old Shula, explains why she got involved: “I’ve always known about the great work the charity does as I have a liver condition myself and had a transplant when I was six. “However, although my parents received support and information from CLDF ever since my diagnosis, I would never speak about my liver condition to anyone. Last year I decided that this needed to change, and that I should do something which would benefit other young people like me. I also want to show that even if you are born with a liver condition you can still go on to live a healthy lifestyle.” “So the volunteering opportunity came up at just the right time and I am really enjoying it! So far, I have been doing research to help identify potential fundraising opportunities and I know there will be further opportunities to do talks locally to raise awareness. Although I have only been doing this for a few months, I feel I am gaining so much knowledge and building up my confidence.” “I would recommend volunteering. By helping CLDF, you are helping people through a very tough time in their lives. It’s an amazing humble feeling knowing that you are making a difference to people in that situation. Volunteering is definitely worth it.”
If you would like to know more about volunteering for CLDF contact fundraising@childliverdisease.org
Why I give this way Whilst we are frequently amazed by the creative fundraising ideas you come up with, we fully appreciate the time and effort which goes into planning for challenges and events. Here Alice explains why she chooses to support with a regular gift “I’m a music teacher and my work is a mix of going into schools and teaching individual pupils at home. It means I have first-hand experience both of receiving a small but regular amount each month from some clients as well as spending time preparing and issuing bills for others. “I know that it’s much easier to plan when you know there is money coming in so I thought the same principle should apply to my support of CLDF. The monthly gift was easy to set up and I can change the amount as and when I need to. Fundraising is great fun and we generally try and do some carol singing every Christmas but at least this way I know I am giving regular support without the pressure of planning a big event!” If you would like to set up a regular gift to childliverdisease.org/support-us/donateto-us/monthly-donations/ or call 0121 212 6022.
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In 1980..
The Rubik Cube made its debut at the International Toy Fair
Let us know how you would like to keep in touch ABBA had their last no 1 single in the UK
An estimated 83 million TV viewers tuned in to find out Who Shot JR?
And Children’s Liver Disease Foundation was launched! Next year we’ll be celebrating our 40th birthday. We’ll be sharing with you the charity’s achievements to date, thanking our wonderful supporters, and telling you what we hope to do in the future.
Whatever your connection with CLDF, we’d love to hear from you. Tell us your stories and send us your photos.And whether you were there at the beginning or not, get your leg-warmers at the ready forprobably some fabulous themed – watch space! You have heard by fundraising now about the this General If you Protection have a memory you would(GDPR) like to share as part of to ourdata birthday Data Regulation and changes email press@childliverdisease.org. protection laws.
celebrations
You have been receiving occasional communications from Children’s Liver Disease Foundation and this will continue. However, if at any time you would like to change how you Privacy – our commitment to you hear from us, or wish to be removed from our database, CLDF is committed to protecting the privacy of all our families, young people and supporters and keeping you informed of please let us know by visiting childliverdisease.org/keep-inhow personal information is used. touch. Or if you prefer just give us a call on 0121 212 3839.
We are responsible for ensuring the security and privacy of any personal information you provide and our Privacy Notice lets you what happens to the the personal information give to us, any that we may collect from or about you. CLDF’s By know contacting you in way you choose,youwe can beormore Privacy Notice has been updated to address the new standards introduced last year by the European data protection law cost effective in our communications and marketing activity. known as the General Data Protection Regulation (GDPR). The changes include: • A new layout to make it easier to read and understand • Increased transparency around what information we collect, why we collect it and how it will be used • Explaining your rights, and • Any further information which is necessary to enable the fair processing of your information.
Forcan fullfind details of our privacy policy go to You our Privacy Notice at childliverdisease.org/privacy-notice We suggest that you read this notice to understand what information we hold, how we use it and what your rights are. childliverdisease.org/privacypolicy. Keeping your personal information safe and increasing transparency are important to us. If you have any questions or concerns about how your personal information is kept and used, or to request a paper copy of our Privacy Notice, please email info@childliverdisease.org.
36 Great Charles Street, Birmingham B3 3JY 0121 212 3839 | info@childliverdisease.org childliverdisease.org | cldf-focus.org Registered Charity Number: 1067331 (England & Wales); SC044387 (Scotland) Registered Company Number: 3431169 | ISSN 2398-3485
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