Issue 8/ Summer 2021
Welcome
Welcome to the 2021 edition of Liverlife. It has been eight months since our last publication and the challenges for all of us have kept on coming. Throughout, our main concern has been our families, young people, the newly diagnosed children, the clinicians that care for them and how they have all been affected by the pandemic. Looking back, I am incredibly proud of what has been achieved in the face of adversity. We have been able to provide essential information and support, while our work representing the views and needs of our beneficiaries has never been stronger. Virtual meetings have helped us to keep in touch, bring together families and young people and deliver our first digital conference. Our Zoom inspired front cover this year celebrates the CLDF community. The pictures represent our families, children and young people, as well as our staff, trustees, researchers, friends of the charity, medical professionals who sit on our committees and support our work and of course some of the amazing fundraisers who make it all possible. We celebrate each and every one and the hundreds of others we could have included. We have come through this far and are stronger together. It is wonderful to be able to let you know about CLDF work and achievements. I would also like to take this opportunity to highlight the inspiring achievements of the national paediatric liver service over the pandemic period. Sitting on a variety of committees, I have seen first hand the huge constraints the service experienced. Staff have been redeployed to front line COVID-19 work and others have been affected by the virus or forced to isolate. Hospital services were severely impacted. It is a testament to those teams that care continued and that, by the units working together closely, the number of children receiving a transplant during the period was on a par with the previous year. In this edition of Liverlife, we celebrate our young people and our fundraisers and let you know more about our campaigning and support work . The Impact Report for 2020 is also presented alongside a host of other news and informative articles. The pieces written by young people, families and those with input from our medical professional colleagues are truly inspiring and we are indebted to everyone who has been involved in bringing the edition together. The charity continues to battle through with a limited staff team that I am privileged to work with. They have continued to go above and beyond the call of duty to keep the show on the road. We hope that with the opening up of more opportunities for community fundraising, the charity will begin to recover and can look to rebuilding for the future. If you know of any opportunities that may benefit the charity please do get in touch, our capacity and ability to sustainably provide our work is dependant on the funds we have. We hope you enjoy the rest of the summer and have our fingers crossed we can continue to move to a more "normal" way of life. Know that no matter what happens, we will continue to put your needs first.
Alison
2
ceo@childliverdisease.org
Liverlife
Contents
4. Representing our families
5. First digital conference
12. Fundraising News
21. My liver disease didn’t stop me
25. 40 years of CLDF
31. Stay strong
6. Your views count
14. Fantastic Fundraisers
22. Insight from Italy
26. Maureen clocks up 20 years
32. Taking care of us
8. Didn't they do well?
16. Welcome new trustees
23. Professor Kelly steps back
27. Our unique bond
33. Don't cope alone
10. Support in changing times
17. Impact Report 2020
24. In Loving Memory
28. Liver disease and your family
34. Young fundraisers
3 Liverlife
Representing our families at national level The needs of the families, children and young adults diagnosed in childhood remains at the heart of CLDF’s work. Representing their needs and concerns to other agencies has become an increasing role for CLDF over the past decade.
Last year we reported on the considerable work and liaison we had undertaken in ensuring the patient voice and priorities were heard in considerations of care and professional guidance during the pandemic. This was done alongside interpreting guidance for our families and young people across the four nations and this work has continued . More recently questions about the COVID-19 vaccine have been top of the list for many families so we were delighted to be able put forward the concerns and questions of our families into a consultation from the Royal College of Paediatrics and Child Health, to help them develop guidance regarding the vaccines for children and young people with underlying health conditions. Our Voice work over the last period has however extended far beyond Covid.
CLDF lobbies for Yellow Alert to go into in the Red Book
Our Yellow Alert campaign to advise health professionals and new parents of the symptoms of liver disease in newborn babies has been a key area of our work for many years. Last year, together with Professor Deirdre Kelly (Birmingham), Professor Anil Dhawan (Kings) and Dr Eirini Serena Kyrana (Leeds, now Kings) we made formal representations to the Royal College of Paediatrics and Child Health about including Yellow Alert resources, including the stool chart, in the Red Book (The Children’s Health Record), which is given to all new parents. Together a detailed proposal was then developed and submitted to the National Screening Committee. The outcome of that work wasn't an immediate yes. We are encouraged though that the NSC have committed to extending the scope of the biliary atresia review due during the next 12 months to include a more detailed evidence analysis in relation to the resources. We will not stop striving to get the resources into the Red Book, but in the meantime will build on the successes with individual maternity units, encouraging more hospitals to give Yellow Alert resources to all new families on discharge .
New approach for treatment & eradication of Hepatitis C in UK children We are delighted to be part of a new national multidisciplinary operational delivery network (ODN) to treat children and young people with Hepatitis C (HCV) in England. Launched in April this year, the ODN is the first in the world to provide a national treatment pathway for children and young people with HCV, ensuring that they receive high quality treatment and equity of access close to home. The team will be led by Professor Deirdre Kelly and includes clinicians from the three national paediatric liver units; paediatric infectious disease specialists; representations from regional centres and patient organisations including CLDF.
“We’re proud to be part of a multi-disciplinary approach which will mean that children and young people in England can now receive timely and appropriate treatment to prevent the long term complications of HCV” said Alison Taylor.
4
Liverlife
First Digital Conference for CLDF CLDF’s first national digital conference took place on Saturday July 3. And while meeting over Zoom may be different to gathering in a hotel, we were delighted to once again give our families the opportunity to hear directly from a range of medical experts.
“I can certainly relate to so much of this presentation! Managing teenage emotions, through a pandemic and when living with a chronic illness, is certainly a daily challenge!” Parent
“Thank you so much for all the reassurance, encouragement and hope you keep giving us. Those conferences are precious to us since we began our liver journey.” Parent
Paediatric clinical psychologists, Dr Helen Lowther and Dr Emily Fraser spoke about the anxieties and unknowns which come with caring for a child with a liver condition, a subject close to the heart of many of our parents. Dr Deepak Joshi of Kings and Mwesi Magumba, a youth worker from Leeds talked about transition and gave an insight into adult liver services, while Dr Girish Gupte of Birmingham Women and Children’s Hospital spoke about the latest advances in the management of paediatric liver disease and new treatment options on the horizon. Sharing personal experiences has always been a big part of CLDF conferences and we are so grateful to Ronnie and Rachel for giving such an open account from a parent’s point of view, and to our young people, Mollie and Gemma, for depicting the reality of being a young person with a liver condition. All those attending found their presentations truly inspirational, and we know how valuable these personal accounts are to others. The opportunity to ‘ask the expert’ is always a conference highlight and this time Dr Tassos Grammatikopoulos of Kings and Lindsay Hogg, specialist nurse from Birmingham Women and Children’s Hospital rounded off our afternoon by answering questions on a range of topics. “This year’s conference was obviously very different to those in previous years, but we were very pleased with how it went from a technical point of view,” said CEO Alison Taylor.
“Thank you Mollie and Gemma. You both are so brave. It is always an eye opener of what the patients and families that we look after have to go through. It takes a certain kind of exceptional bravery to talk at such a forum about what you have been through. Well done to both of you.” Medical Professional
“We’ve had excellent feedback from speakers and delegates and now feel we have the blueprint for similar events in the future. We’re looking forward to delivering more events where families can hear directly from medical professionals in a way which is accessible and convenient. Our huge thanks go out to the medical professionals who supported the event” We are aware the timings of our digital sessions don’t always fit with busy lives, so we have developed a brand new webpage to share as many of our information webinars as possible over the coming years. If you were unable to attend the CLDF Digital Conference or want to watch back, you can view a selection of sessions from the day here https://childliverdisease.org/liver-information/webinars/.
5 Liverlife
Your views count
CLDF’s position on clinical trials and involvement
This year, CLDF have worked with stakeholders across the world to raise awareness of the importance of parents and families being central to how trials are operated to achieve the best outcomes.
One opportunity managed by our research hub involved discussion between researchers and a group of parents with a child diagnosed with biliary atresia. This meeting was facilitated by CLDF and led to the redesign of many aspects of the trial including patient information and recruitment strategies. Later in the year, families and young people responded to a CLDF survey to find out more about their willingness to be involved in clinical trials and the experience of families who have been involved. These crucial insights were presented by CLDF at an international meeting which was attended by clinical colleagues, drug companies and the international regulators who make the decisions on how drugs for rare disease should be approved. Furthermore, we called on parents and young people to support us in sharing the patient perspective during a paediatric cholestasis virtual workshop in spring 2021. The meeting was organised by British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) and the European Reference Networks (ERN). The meeting brought together colleagues and professionals from around the globe. We are so grateful to the parents and young people who shared a video about their experience of pruritus and clinical trials. Despite the technical difficulties, attendees were delighted to gain further insight and understanding through hearing these personal experiences. This is an ongoing area of work for CLDF. We are part of the multidisciplinary group developing a position paper on clinical trial design for paediatric liver disease. At each stage we are stressing the importance of involving patients and families. The inclusion of patients and patient advocates at every stage of development is integral to overcome the obstacles of rare disease trials e.g. recruitment, retention and burden on participants. A further meeting will be held in London in spring 2022.
New treatments for childhood liver conditions There are several new medications called ASBT inhibitors currently being trialled and going through the process of authorisation. They stop the uptake of bile acids in the gut and therefore reduce the amount in the body and the requirement of the liver to transport them. They are not currently licensed in the UK but we continue to be involved and campaign for greater access to treatments for childhood liver conditions. Development and approvals of new drug treatments, especially for childhood liver conditions, is a complex and lengthy process. The National Institute for Health and Care Excellence (NICE) is an independent body which decides how the pot of NHS funds will be spent on treatments and medications. They evaluate existing and new treatments through appraisal processes including consultations and meetings in which CLDF is included. Parent advocates have played a huge part in the consultations. This may have been through attendance at meetings or through responding to CLDF surveys on the impact on your lives. We cannot express enough how vital this is for those making decisions about new drugs. We hope to see more treatment options for PFIC and other cholestatic liver diseases such as biliary atresia and Alagille syndrome soon and will provide updates as and when we hear more.
6 Liverlife
Families give feedback on
virtual appointments
As many of you are aware, we do a lot of work behind the scenes to help improve services and care. Earlier this year, Alison Taylor our Chief Executive had the opportunity to speak at an international liver meeting about the effect the pandemic had on how you all experienced care. Thank you to everyone who took part in our virtual appointments survey as this allowed us to represent your views to the many professionals in attendance. The results were also shared with all specialist liver centres as well as with commissioners of NHS paediatric liver services at the annual review meeting attended by the liver centres and CLDF. The insights gained will feed into considerations of how consultations will develop post-COVID.
VOICE NEWS
The influence we have on policy and processes within the NHS and Government relies on the engagement we receive from you on these topics. Nearly 100 of you shared your experiences; as you would expect they were diverse, but we were able to capture themes and give an overview of the wide range of personal views. 88% of respondents had experienced a virtual appointment during the pandemic. Below is a snapshot.
In the future would you like a mixture of physical and virtual appointments
As long as scans, bloods etc are arranged locally then virtual is better, better for travel 6+ hours for us, better for cost trains are £160! And just better all round
If concerns were expressed
It is Important to recognise the increased anxiety of many parents when they haven't been able to get their usual, regular reassurance by in person appointments. Stable and a decade on from diagnosis doesn't mean that the worry of deterioration ever stops.
Help us make your voice count As you will read in these pages, we are increasingly being asked by external partners,, clinicians and researchers for the views and experiences of our families. When you receive a survey from us or a question about your experience, please take a few minutes to tell us what you think. Together we are stronger; we want to represent all of our young people and families at a national and international level and the more of you we hear from, the better we can do that.
7 Liverlife
Didn't They Do Well ?
Harry embarks on electrical career Harry who is 18 has secured a place as an apprentice electrician. “I’m enjoying this much more than full time study because it’s more hands on and I’m getting more relevant experience,” he says. “ I've been out and about a lot working in different situations and at the end of the course I’ll have Electrotechnical Qualification Installation Level 3.”
Tara’s special 18th birthday present Tara marked her 18th birthday by welcoming her daughter, Aria-Talisa into the world! "I had always been concerned that having children might be a problem,” admits Tara, who has biliary atresia. "But Professor Kelly didn’t think it would be and she was right. I was fine throughout the pregnancy - I just had a few more checks than normal. Right at the end, I had to be induced because my liver enzyme levels were starting to rise, but as soon as the baby was born, they returned to normal. When Aria-Talisa was born she had a tiny hole in her heart but that has now closed, and she and I are both fine. I’m so happy to be a mum and I like to think that my story will give hope to others who worried like I did.”
Catherine takes a water break Twenty-three year old Catherine clearly has a taste for learning. She received a First Class honours degree in Criminology at Bath Spa University and was awarded Student of the Year for Social Sciences 2019 and The Best Criminology Dissertation 2019. In September she’s off to do a Masters degree in Policy Research at the University of Bristol. In the meantime, she is working at South West Water, on a six-month placement as a business administrator as part of the Kickstart scheme. “I am thoroughly enjoying learning a new role,” she says.
8 Liverlife
Josh is going places with the BBC Twenty-one year old Josh has just completed his broadcast engineering apprenticeship with the BBC. “I’m generally the one running around fixing computers and studios, or installing new equipment,” he explains. ”I started the apprenticeship three years ago, straight after A’levels, and I’ve really enjoyed it. You get to do lots of different things, fun things, like I had the opportunity to work on The One Show for a day, and I’ve also helped out on Children in Need. I think the best thing about it is the opportunity to work in this industry and get practical experience as well as getting a degree. Although the qualification would enable me to work for other broadcasters, I’m now applying for jobs at the BBC.”
Mollie and Gemma make conference debut Mollie and Gemma who are both 19 were invited to speak at CLDF’s digital conference (see p 5) about their experience of being a young person with liver disease. It was a first for both of them, and Mollie admits to being apprehensive. “We’ve both told our stories on film at the Talk Tell Transform project, but this was live” she says. “It’s difficult talking about something so personal and I did get quite tearful but Gemma and the CLDF team were so encouraging that I carried on. I’m so pleased I did because we got a great response to our presentation.” “It was quite an experience,” agrees Gemma. “But it was great to get such positive feedback and if Mollie and I have helped other young people in our situation then that’s a brilliant result.” “We’re so proud of Mollie and Gemma,” says Young People’s Officer, Louise. “By being so honest they have helped other young people realise that it’s OK not to be OK all the time and enabled parents to see that this is a long journey which is different for everyone.”
Hannah takes the hurdles in her stride When Hannah started school last September, it was a big step for her, as she had already undergone three liver transplants and didn’t really have the chance to mix with other children at nursery. Despite this, she has made great progress. “Although she has missed a lot of school due to hospital appointments and admissions, she is performing at the level expected for her age, made lots of friends and really developed her social skills,” says mum Amanda. “She even had to have a bile drain put in place recently and she has just got on with it and not let it stop her from doing anything. Her teachers are amazed at her progress. “Hannah has also really taken to home learning which is great news as she can keep up with school work whilst she is off poorly or in hospital. Unfortunately, she is about to be admitted for transplant assessment again. But she's so resilient and just takes it all in her stride.”
9 Liverlife
Support in changing times Keeping everyone connected Since we’ve been unable to put on actual events, we’ve been using other ways to ensure that our families are connected to us and to each other. We run a fortnightly day time drop-in session for parents over Zoom as well as a monthly evening session.
“The drop-ins are a great, informal opportunity for parents to raise any concerns or questions they have with us and also to meet up with each other, wherever they live,” says Michelle. “At the monthly evening sessions, we run separate break-outs for the over 16s and a quiz for 12 to 15 year olds and these are proving increasingly popular.
Children and Families Officer, Kate, sends a fortnightly briefing to all families: “It feels like a nice way to keep in touch when I can’t see families in person at clinic. It makes my day when families reply to let me know what they have been up to and share their photos. We’ve worked hard as a team this last strange year to find new ways of bringing families together and I hope the briefing in some small way does this."
”If you would like to know when our next drop in is or ensure you receive Kate’s fortnightly briefing contact us at families@childliverdisease.org.
Helping our young people bounce back The past 16 months have been particularly tough for young people with a liver condition who, in addition to coping with all the other restrictions, may have had to shield or been made to feel anxious about the implications of the pandemic on their wellbeing. In recognition of this, we organised BounceBack during June half term, five afternoons of virtual activities designed to help 12 – 15 year-olds to build resilience as the world opens up again. “It was great to have a mix of familiar faces and those who had not previously met others with a liver condition,” said Head of Support, Michelle Wilkins. “And we had a fun week of baking, mask designing, quizzes and even a virtual escape room! We can’t take groups of young people away on trips right now, but BounceBack showed it is still possible to bring young people together in a fun way. “Now I feel more confident in my liver disease and more confident in me” Young person who took part in Bounce Back
Bridging the gap for young adults Although CLDF’s services for young people continue until the age of 25, we are conscious that there is a lack of specific support beyond that age for adults with childhood liver diseases. We are currently talking to our colleagues at the British Liver Trust about how best we can plug that gap and we shall update you over the coming months.
10 Liverlife
Tailored support for your journey Parents of children with liver disease often tell us how they benefit from hearing from others in their situation. Sharing experiences is all the more valuable when your circumstances are very similar. This may or may not mean the same liver condition; it also might relate to the age your child was diagnosed, if and when they have been through transplant and how they reacted to it.
We are currently looking at how we can further improve our peer support by facilitating more tailored shared experiences, which will be of value both to newly diagnosed families and to those facing particular stages of their journey. We’ll be announcing more details of these tailored pathways over the next few months. In the meantime, if you are a parent who would be happy to share their experiences to help others as a CLDF Parent Ambassador, please contact headsupport@childliverdisease.org.
Talk Tell Transformers reunite CLDF’s Talk Tell Transform, when we take a group of amazing 16 – 18 year olds away to make their own unique film, has been one of the highlights of the CLDF calendar for several years now. This February would have been our 10th Talk Tell Transform; it couldn’t happen of course, so instead we hosted a very special virtual reunion. We were delighted to welcome 19 young people who had taken part in the project over the years back to join us one chilly Saturday afternoon. It was wonderful to catch up with them all and to hear how the Talk Tell Transform has had such a positive impact on their lives. And while they have all made their own films over the years, this time they collaborated on a joint film. You can view the TTT Virtual Reunion video on our YouTube Channel at www.youtube.com/CLDFonline
“I know that I've become such a happier person because I have such great friends now and that was all I ever really wanted” Young person reflecting on Talk Tell Transform
It's a Hive of good advice Our dedicated Facebook groups for young people, Hive for 13 – 15 year olds and Hive + for the 16 – 24 age groups, were a lifeline for many during lockdown. Now we’ve introduced a Messsenger function, they’ve become even busier. “It’s been really heartening to see how supportive our young people are to each other on Hive,” says Young People’s Officer, Louise. “It’s really become a safe space to share anything from issues with medication, travel or hospital visits to the best new thing to watch on Netflix. If any young person is not currently signed up and would like to join, just email me at ypo@childliverdisease.org (parental consent required for under 16s).
11 Liverlife
Fundraising News A welcome return to running After an enforced break in 2020 we’re so excited at the return of mass participation events this year. As we go to press, it is planned that the Great North Run will go ahead on September 12 and the London Marathon will take place on October 3. We’re proud to say that CLDF will have teams in both. We know that many of you like to raise funds by taking on a challenge and running isn’t the only option. We can help you if your burning ambition is to do a sky dive, go husky sledding or climb Kilimanjaro. Check out the options at childliverdisease.org/support-us/fundraisefor-us/challenges./If running is your passion, however, we’ll soon be finalising places for the 2022 London Marathon and Great North Run so to find out more, email fundraising@childliverdisease.org.
Members of CLDF’s 2019 London Marathon team proudly display their medals
Calling all employees Companies of all sizes can be a surprising and untapped fundraising resource. If your employer supports a chosen charity each year, remember to put CLDF forward. And if you need any information from us to do so, we’re happy to help. Many companies will match fundraising which you are undertaking. So whether you’re holding a bake sale, planning a quiz night or taking part in a running or cycling challenge, don’t forget to let your employer know. You may be able to double your fundraising at a stroke!
And it works both ways…………… Company fundraising offers real benefits for businesses. Taking on challenges can be great for team building; it’s a chance for colleagues who may not always work together to join forces to pursue the same goal and it offers excellent opportunities for positive PR, as well as the satisfaction of knowing your team have made a real difference to a small charity. So if you’re involved in running a business and you’d like to know more about how a charity partnership could work for you. please contact us at fundraising@childliveridisease.org.
12 Liverlife
Time to challenge yourself again
What could be a better way to celebrate the world opening-up than taking on a fundraising challenge for CLDF?
Many events which had to be postponed over the past 18 months are now back so if you feel like it’s time to test yourself again post-lockdown, there is plenty to choose from! From running, cycling and swimming to ultra-challenges NB 2021 dates shown below but most events are annual for the truly brave, here is just a selection of ideas.
Holly’s Wild Camp art work
RUNNING
Wimbledon Trail Series Race 3 September 1
MK Festival of Running September 5
Kenilworth Half Marathon September 12
Skyline Scotland September 18
Glow in the Park Kent October 2
Blackburn 10k October 10
Manchester Marathon October 10
White Rose Ultra (Huddersfield) November 5
Reading Half Marathon November 7
Hampton Court Palace 10k November 21
SWIMMING
Conquer the Chilterns August 29
Dock2Dock Swim September 4 Loch Ken Wild Swim September 11
CYCLING
Beyond Yorkshire Sportive 99.4m September 11
Lands End 100 105, 71, 46m October 9
WALKING
Thames Moonlight Walk – 10K September 10
Cornish Coastal Challenge September 10-12 Thames Bridges Trek – 25miles Sept 11
Kiltwalk 2021 – Glasgow September 26
Snowdon Triple Challenge September 25 & 26 Yorkshire Three Peaks – 24 miles October 8-10
Snowdon Sea to Summit October 9-10
Brecon Beacons Horseshoe 10 mile ridge walk October 23 The Edinburgh 7 Summits Challenge March 5 2022
13 Liverlife
Fantastic Fundraisers Royal seal of approval for Catherine
Catherine has raised over £2,500 by joining in with Big Yellow Friday ever since her niece’s daughter was diagnosed with liver disease six years ago. When she couldn’t put on an event this year, she decided to think outside the box. Inspired by her beloved pet, Betty, she made a chocolate pug and sold it on Facebook. More followed and to date the pugs have raised £122. In recognition for her fundraising for CLDF and other charities, Catherine was awarded the British Empire Medal in the Queen’s Birthday Honours this year. She describes the award as a “humbling experience” and says “this year has been incredibly tough for everybody, but it’s shown as humans how we can work together and pull together to help everyone.”
My May Marathon for Alex Family and friends of seven year old Alex have taken part in My May Marathon (26.2 miles in the month, in any way you choose) this year as a tribute to the dedicated CLDF fundraiser who very sadly passed away last July. “Alex always did this with a smile on his face,” says his mum Debbie.“I am determined to do this going forward for him…..for both of us, along with my partner and Alex’s two amazing brothers who struggle every day since they lost their best friend.” Over £300 was raised in May but not content with that, the fundraisers continued with another charity bike ride in June. What a wonderful tribute to an amazing little boy.
Miley inspires London to New York challenge Staff from Dudley, Wolverhampton and South West Staffs Breast Screening Service raised £1500 for CLDF in April by taking on a London to New York virtual challenge. They were inspired to support the Foundation after Miley, granddaughter of team member, Kay Jones, underwent a liver transplant when she was just 15 days old. “Everybody loved taking part,” said health inequalities lead, Jayne Burness. “And I’m really proud of the team. It was a good way to lose some weight and raise some money as well.”
14 Liverlife
Band trades trumpets for trainers When the Werneth Concert Band were unable to perform due to the pandemic, they came up with the Miles for Music challenge to raise funds for themselves and their chosen charities. Band members were sponsored to cover the 360 miles from Manchester to Land’s End by walking, cycling or even Zumba-ing. The musicians embraced the challenge with such enthusiasm that they clocked up enough miles to get to Land’s End and back!
Euphonium player John, whose grandson has a liver disease, was delighted to have raised £500 for CLDF. “We know it’s been a very tough year, so it’s great to provide support in this way,” he says.
Maham finally gets her adrenaline rush When 19 year old Maham realised she could fulfil a long held ambition to do a skydive and raise funds for CLDF she booked up straight away – and roped in her uncle Jamal too! “I knew he’d be interested in it as he loves thrill as much as I do,” she says. Thanks to generous family and friends, within a week of starting fundraising the pair had hit their £900 target. And, while the pandemic meant the jump kept being postponed, this June it finally happened - and lived up to expectation. “Excitement was all I could feel,” says Maham. “After waiting for two years, it was really happening. I finally got the adrenaline rush that I craved. What I felt in those few minutes, I imagine that’s how birds feel on a daily basis. I loved it!”
Daniel takes on cycling challenge When Daniel’s two young sons were diagnosed with Wilson’s disease, he decided to raise funds for CLDF by cycling 150 miles during May. “That would be nothing to some people but represented a real challenge to me, as I am overweight and unfit”, he explains. “But I wanted to help the Foundation continue to provide the best care and support to all their patients and also to help with research. ” Despite dreadful weather which meant many miles had to be clocked up in the gym, Daniel completed the challenge. He raised a fantastic £957 and feels he’s given his fitness a real boost too!
15 Liverlife
CLDF welcomes two new trustees In last year’s Liver Life, we told you about changes to the CLDF board, including the appointment of Mairi Everard as Chair. This year we’re delighted to welcome two new trustees, Chris Williamson and Mick Roach, who join us at a challenging time for the charity.
“I was inspired to become a CLDF trustee following my five year old son’s liver transplant last year,” says Chris. “Noah was born with alpha1 antitrypsin deficiency. As a parent, nothing can really prepare you for your child becoming seriously unwell and you would do absolutely anything to make it better for them. CLDF does amazing work to help families like ours in their moments of need as well as funding research to help those impacted to reach their full potential. I see this role as my opportunity to help the charity to recover from the COVID-19 crisis and prosper thereafter so that it can help to make it better for Noah and all other families like us. My wife, Rebecca, was supportive of the idea and believed I could make a difference, so I’m really pleased to have the opportunity.
“After experiencing the effects that liver disease can have on a family, I wanted to become a trustee of the charity to be able to help support, in some small way, other families out there as they encounter the effects of liver disease for the first time” he says. “I’m hoping that my experience within the digital healthcare space, working closely with the NHS over the past 11 years, will help me to support CLDF as they look to explore how they can use digital technologies to support their growth plans for the coming years”.
“I think I’ll bring drive and energy to help bring about positive change for CLDF, together with digital technology expertise gained through my role as Head of Tech Delivery at first direct. And obviously, I’ll bring first-hand experience of what families with children suffering from liver disease want most out of the charity.”
We’re grateful to Chris and Mick for adding their expertise to that of their fellow trustees in helping steer CLDF forward as we deal with the after- effects of the pandemic It is an enormously complex time as we work through the ongoing challenges and look to the future and rebuilding.
Mick also brings first-hand experience to the role as his 11 year old son, Harrison, underwent a liver and kidney transplant when he was five.
Find out more about our trustees at https://childliverdisease.org/about-us/trustees/
CLDF plays key role in new liver alliance
For the past seven years, the Lancet Commission has been campaigning to raise the profile of liver disease in the UK and development of related care. The Commission has now come to an end and the UK Liver Alliance has been created to continue its work. The Alliance is made up of clinicians, interested parties and patient groups covering all liver conditions. CLDF will be
joining other bodies including ;
the British Liver Trust, the British Society of Gastroenterology, the British Liver Nurses Association, Public Health England and the Royal College of General Practice on the steering group. The new alliance will be focussed on four main areas: • Improvements in early detection, diagnosis and primary care of liver disease
• reducing the variation in hospital care across all four nations • increasing the number of
hepatologists and liver nurses • uniting the patient voice.
These are bold aims and none of this is going to be easy, but we are proud to be part of an alliance which is committed to campaign tirelessly to bring about
change and we shall be keeping you updated of our progress.
16 Liverlife
2020 IMPACT REP RT There are a huge number of different liver diseases which can affect babies, children and young people. The causes are largely unknown; many are life- threatening and all require a lifetime of medical care.
Children’s Liver Disease Foundation exists solely to support the needs of UK families affected by childhood liver disease by: 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 young adults, children and their families with tailored support services supporting research that benefits our children and young people
“Our vision is a world in which young adults and children are not limited by their liver disease; that childhood liver diseases will be understood, prevented and treated effectively, ensuring that babies, children and young people with liver disease can achieve their full potential.”
Alison Taylor, Chief Executive
Meeting the challenges of 2020 The COVID-19 pandemic had a significant impact Realising the impact and managing the new normal on the charity in 2020. CLDF relies heavily on fundraised income from events, sponsored activity and community fundraising, which have Prioritising the needs of our families and young people all been significantly affected by social distancing and the financial climate. Many of the charity’s support events for beneficiaries also had Re evaluating our income and services in a changing landscape to be cancelled and postponed, because of government guidance. From March 2020, CLDF focussed on providing its range of services and projects digitally and supporting beneficiaries and NHS partners through the pandemic, whilst striving to reach newly diagnosed families.
13 projects &
During the year our income was £338,837 lower than 2019. As a result the organisation was restructured in July opportunities 2020, sadly resulting in six redundancies. These difficult decisions were taken to ensure that the charity continued supported to provide services to beneficiaries whilst maintaining a level of reserves to safeguard future work.
Research During 2020 due to the charity’s’ financial position and the operational challenges for potential applicants and scientific committee members posed by the pandemic, the charity cancelled its annual grant round. The Research Hub work continued enabling families and young people to provide insights from lived experience to help researchers to hone research questions and project applications.
13
33
Research Projects supported
Research hub members
Education and Information COVID Guidance Top priority, interpreting and informing Liaising with clinicians, societies & NHS Answering queries & developing guidance
24
Guidance Articles
Viewed 17,000 times
105,276 support & medical leaflets distributed
21,430 YA Packs
55% increase in Yellow Alert Activity
We use the yellow alert pack and all agree that it is a fantastic resource with lots of useful information. The stool charts are used regularly in consultations and are valuable to show parents what to look for.
feedback from a GP
Supporting families and young people We attended
166
21
Connecting with
hospital clinics across the UK
families & YP
1,992
Zoom Support
42
Emails, calls and messages 12 young people
Sessions
1,283
Families
received weekly support newsletters
I just wanted to thank you for the unshielding zoom session last week. I really got so much from this and thought it was all so well organised and set up
seeking guidance, info and support
Team focussed on responding to the changing needs of families throughout the year
Our daughter has massively grown in confidence, accepting who she is and has stopped comparing herself to others. Her attitude now is more 'what I can do' rather than 'what I can't do' she also doesn't feel so alone in her health struggles and has found it inspiring being with other young people in similar situations.
91
Families Intensive Case Work
You helped us at a really difficult time. We were dealing with our daughter’s diagnosis at the same time as facing real financial difficulties as we’ve lost our jobs during COVID. You helped us break it down and supported us to understand the tests my daughter was having to take away the worry. You helped us sort the financial pressure we were under at least in the short term and we are so grateful for the support CLDF offer
Voice Representing the needs of our families and young people has become an increasing role for CLDF over the past decade. During 2020 this work was more important than ever. Our usual work ensures that families and young people are given the opportunity to become directly involved in the evaluation of national policies and developments through a wide variety of channels. We are actively involved with a wide variety of consultations and groups to ensure the needs of children, young people and families are heard. This continued throughout the year. Ensuring that our beneficiaries' needs and concerns were being addressed in relation to COVID pandemic impact involved the charity working closely with NHS Commissioners, paediatric units, Public Health England, NICE and the Royal College of Paediatrics.
Fundraising CLDF works hard to attract income that can be used to deliver our objectives. CLDF works across all traditional fundraising income streams and benefits hugely from funds raised by the families themselves.
During 2020 we received donations from: Big Yellow Friday activities, raising £37,460 Personal donations and regular givers £154,299 Supporters undertaking challenges £66,879 Grant making Trusts raising £66,507 music makers, head shavers, knitters, raffle sellers, too many to mention
A HUGE
THANK YOU to everyone who donated and raised funds for us in 2020. We would not be here without you.
Cake bakers, head shavers, raffle sellers,
Funding CLDF's work
Cake bakers, head shavers, raffle sellers, Incoming Resources Unrestricted Voluntary Income
£436,413
Fundraising and publicity
Restricted Voluntary Income
£65,633
Information and Awareness
£80,416 £170,078
Research Emotional support and activities
Investment income
£12,109
£36,114 £257,749
Total: £514,156
Registered Charity No. 1067331
Resources Expended
Total: £544,357
Scotland 3431169
Company No. 3431169
childliverdisease.org
My liver disease didn't stop me...from helping others Twenty-three year old Maisie has chronic liver disease and portal hypertension. She is a big believer in using her own experience to help others, as she explains.
I was fortunate in that my liver condition didn’t affect me hugely growing up, apart from sometimes missing school to attend appointments. I’ve never had to spend long spells in hospital. After school I attended Sheppey College in Sheerness for four years where I did courses in ICT, business, and health and social care. The staff there were really supportive and encouraging. In fact, I still keep in touch with some of them who were particularly helpful to me. After college, I was put in touch with Kent Supported Employment who help people who have health issues get into work. I have a mentor called Kate who is brilliant and gives me advice on things like CV writing and applying for jobs. With her help, I got a job with Kent Community Health, which is part of the NHS. I was a part of a panel to help in recruitment of people with learning disabilities. I have mild learning disabilities myself so felt well placed to speak on this issue. I would look at documents and advise how they could be improved to make them more accessible. When that contract came to an end, I had to start looking again and I’m delighted to have got a new job. I’m still with Kent Community Health, this time as a facilities operative at Faversham Hospital. I’ll be helping to deliver meals, doing cleaning, in fact anything to assist the medical staff in the running of the hospital. I love meeting new people so I’m really looking forward to starting this job.
I first found out about CLDF when I met their young people’s officer at one of my hospital appointments and I thought it would be good to meet other young people who live with liver disease. I like joining in the Zoom calls and being in touch with people on Hive. This was particularly helpful during lockdown which I did find tough. I’m lucky that I didn’t have to shield but it was so boring. I filled my time by online learning. I did a business course run by the Prince’s Trust and a peer leader course to help support people with learning disabilities. I feel that at least now I have acquired extra skills which will be of use in my current and future roles. Health wise, I have been lucky. I go to Kings every six months for a check-up and I love the doctors there. I know that some young people worry about moving to adult services but really there is no need. Just remember that these people are doctors. There’s nothing you can say to them that they haven’t heard before so don’t worry about transition. Use your appointments to talk to the doctors and ask your questions.
My motto has always been keep going and keep smiling. Sometimes things don’t go exactly as you hoped but if you stay positive and keep trying you will get there!
by Maisie
21 Liverlife
Insight from Italy during the COVID 19 pandemic
COVID-19 is the fifth documented pandemic since the flu in 1918. It has taken lives, impacted our work and social lives as well as our mental and physical health. There was very little known about this virus, how it spreads and its effect on different populations. Following the outbreak in China, Italy became one of the hardest hit areas. Papa Giovanni XXIII Hospital, in Bergamo hosts the main paediatric hepatology and liver transplantation centre of Italy. Dr Lorenzo D'Antiga, Director of Child Health, was one of the first professionals to research and share learning with colleagues across the world about the effects of COVID-19 in children with a liver disease including those on immunosuppressant therapies and post-transplant. Many liver centres and families worldwide raised the concern that immunocompromised patients may be at high risk of COVID-19. Dr Lorenzo D’Antiga shared that, unlike common viral agents (such as adenovirus, rhinovirus, norovirus, influenza, and respiratory syncytial virus), coronaviruses have not been shown to cause a more severe disease in immunosuppressed patients. He also shared what the risk factors were e.g. age and co-morbidities such as obesity, heart disease, lung disease. The experience so far on coronavirus outbreaks suggest that immunosuppressed patients are not at an increased risk of severe complications compared with the general population, both in children and adults. The development of vaccines has provided further insurance. “I would like to thank the Children’s Liver Disease Foundation for the support given to families of children with liver disease over the last 40 years, and particularly during last year when we faced unprecedented challenges, due to the COVID-19 pandemic” said Dr D’Antiga. “The Foundation is a great example of how the partnership between different stakeholders (patients, families, health care personnel, volunteers, the public) can make the difference and provide a holistic care to children with liver disease.” CLDF Chief Executive, Alison Taylor, commented: “As a patient organisation, Children’s Liver Disease Foundation would like to say a huge thank you to Dr Lorenzo D’Antiga and teams in Italy for the insight provided at such a crucial and uncertain time in the first few months of the pandemic. This allowed both professionals and patient organisations to provide more effective guidance and advice to anxious families and young people in the UK and beyond. It is a testament to collaborative working and knowledge sharing to best support patients who are at the centre of all our work.”
Information you can trust There are many different childhood liver diseases, all of them rare and many very complex. Obtaining the facts about your child’s condition, for yourself and to help explain to family, is important. CLDF provides a comprehensive series of literature on a wide range of childhood liver conditions, all of which has been produced in conjunction with medical experts. In addition to leaflets on specific conditions, their symptoms and treatment, we have information on diagnostic tests and transplant as well as general information about the liver. All of our literature is produced to rigorous standards and reviewed every two years. It means that our families can be assured the information they receive is up to date and of the highest quality. You can find all our information about the liver and specific liver conditions at https://childliverdisease.org/liver-information/ If, however, you would prefer any leaflets to be posted out to you please contact us at irhm@childliverdisease.org.
22 Liverlife
Professor Kelly steps back Professor Deirdre Kelly, who started the liver unit at Birmingham Children’s Hospital, has retired from clinical duties after more than three decades. Professor Kelly joined Birmingham Children’s Hospital in 1989, setting up the unit when paediatric transplantation in the UK was very new. “At first, people were quite negative about the idea of infant transplantation,” she said. “But we soon showed them that the process could work and used our published data and experience to convince them. “When I began, I wanted not just to set up the best Liver Unit in the world but also to make sure children and families felt welcomed and cared for. With the help of a marvellous team, I think we succeeded.”
Starting from humble beginnings in a Portakabin, a small team and just two beds at the former Five Ways Children’s Hospital site, the Liver Unit almost immediately started to improve the lives of children.Within two years the survival rate of infants undergoing transplantation had increased from 40 per cent to about 90 per cent. Today the Birmingham Children’s Hospital Liver Unit enjoys an international reputation for excellence and a dedicated and expert multi-disciplinary team of more than 50 that includes doctors, nurses, surgeons and allied health professionals, who care for hundreds of patients each year. Professor Kelly added: “I’m retiring from routine clinical care but will continue to use my experience to help children with liver disease.” Chief Executive, Alison Taylor reflected " Professor Kelly is a legendary pioneer in the field of paediatric liver care and we know just how much the families and young people she has cared for love her. Her career and achievements are mind boggling. We wish Deirdre all the best for her retirement from clinical care and look forward continuing to work with her on a range of ongoing voice projects."
Continued success of CLDF Transplant storybook SPACE
"Thank you so much for recently sending a copy of 'Joe’s Liver Transplant Story' to us. It’s been a huge success!" says Frankie's mum Niamh. "Frankie was only one and a half when he had his transplant, and he has very few memories of that time. We want him to understand what he’s been through and have the vocabulary to comfortably talk about it (which comes in handy now he loves lifting up his top to show off his scars!) The book has been a brilliant resource, he loves comparing pictures of himself in ICU to Joe. " The CLDF book continues to be given to families by the specialist centres during the transplant journey. We can also send you a copy. It could be that you haven't received one via the hospital or your child had a transplant some time ago before the book was developed. You may also think that a copy for school, siblings or grandchildren might be useful. You can request a copy via the website www.childliverdisease.org/family-resource-order-form/ or email families@childliverdisease.org
Scotland 3431169
23 Liverlife
In loving memory In Loving Memory
In Loving Memory
Jordan Smith 8th March 2001 – 31st October 2020
Delilah Clemons
Alex Guardside
30th October 2014 – 6th March 2021
20th July 2013 – 31st July 2020
Bereavement support CLDF recognises the agony of losing a child ,we have developed a bereavement support leaflet . It contains advice on living with grief, as well as suggestions on how to help siblings and other close family members. While we don’t provide specific bereavement services we can be there to listen when families need us and refer to local bereavement support services. We also want to honour and remember those who have sadly passed away in our Memory Book. Details are recorded by a calligrapher and parents can visit the book, kept at our Birmingham Office, at any time. To have a name added, irrespective of when they died, a family member can e-mail families@childliverdisease.org and we will place them in the book. We update our parents/young people on a regular basis about what CLDF offers along with information, advice and opportunities. When a child dies, we are not automatically informed by clinical colleagues and so we may not be aware and continue to send out information. However, once informed we can ensure that families receive appropriate information and be there to support throughout this most difficult of times.
24 Liverlife
When we reached our 40th birthday last year, we began to share stories on our website from people who have been connected with CLDF in different ways. We shared some of these – including the story of how the
are so charity began - in the last issue of Liver Life and we grateful to those of you who responded by contacting us with your own story. Sharing your experiences in this way illustrates just how much has changed for young people with liver disease over the past 40 years. Our aim was to publish 40 stories to mark 40 years of CLDF. As we go to press, we haven't quite reached those dizzy heights and we still have room for a few more so if you would like to be a part of this project, please email press@childliverdisease.org to tell us why you would like to share your story. We’ve been delighted to hear from parents, young people, medical professionals and volunteers on their connection with CLDF. You can read their stories here www. childliverdisease.org/40-years-of-cldf/40-stories./ Here's a taster of just some of the articles we have published
How one local CLDF branch raised over £236,000.
Dr Pat McKiernan explains what the charity means to him.
CLDF has worked hand in hand with the specialist paediatric liver units since they were established.
Jacqueline tells why CLDF is so important to her and her son Aarron
Families in Northern Ireland explain whey their local network of CLDF families means so much.
Millie, who featured on the front cover of CLDF's magazine in 2002, reflects on CLDF's impact
25 Liverlife
Maureen clocks up 20 years with CLDF We at CLDF are indebted to our volunteers who give up so much of their time to ensure we keep vital services going. This year, Maureen, one of our office volunteers, celebrates 20 years with the charity. I first became aware of liver disease in children back in 1995 when my husband Maurice was with West Midlands Fire Service and a fireman from Swansea, Steve, had to rush up to Birmingham Children’s Hospital with his wife, Tina, because his young son, Daniel, was seriously ill with liver disease and needed a transplant. As only one parent could stay at the hospital, Swansea Fire Service asked if their colleagues at West Midlands could accommodate Steve. He stayed at Ladywood fire station where Maurice was the Station Officer and got to know him. Sadly, although Daniel had a transplant, he only lived for a few days. I had been running a Christmas catalogue over several years for the Guides and another charity, so that year we decided to donate the money to CLDF which meant I was on their mailing list. In 2001 I saw a request for volunteers in CLDF’s magazine. As I had retired then, I contacted the office and the rest, as they say, is history. I've always enjoyed going in, catching up with the permanent staff and meeting the trustees every year. It’s also interesting to see the progress made in treatment over 20 years. I worked in a biochemistry laboratory, so it was interesting to learn more about liver disease.
Maureen has been volunteering for CLDF for 20 years. Although we’ve not been in the office since March 2020, all of us volunteers have still been playing our part. Louise and Jessica have been bringing me the components to enable me to make up information packs - at the moment, I have five boxes of Yellow Alert materials! It’s great to do something meaningful for a charity in this way and 20 years on I am so glad answered that call for volunteers.
In Memorium Donations support for the future
We are always particularly touched when a family chooses to raise funds for CLDF at a time of loss. Rachael describes her sister, Jane, as both aunty and second mother to her son Reu, now 31, who received a liver transplant following sudden acute liver failure when he was just seven years old. “It was a very traumatic time, but Jane was a rock for us all and continued to be so ever since, says Rachael. “She was someone who always put others first and was a particular champion and cheerleader for Reu. We were devastated to lose Jane in January this year. She would have been a big part of Reu’s wedding day in October. “Jane chose not to have a funeral, but we printed memorial cards to send to family and friends and, as CLDF have always been there for us, we asked for donations as a celebration of the bond which she and Reu had. I know she would have been delighted that we raised £220.”
Jane and Reu
26 Liverlife
A huge thank you to Rachael and to all families who think of CLDF at such a sad time. It is hugely appreciated.
Our unique bond Zoe tells of the shock of being told her healthy child had suffered liver failure and the unique bond she shares with the mother whose child saved his life.
I had no idea that my son had a liver condition. Jordan was a healthy, energetic eight year-old when he was rushed to Birmingham Children’s Hospital with chest pains. After about a week of tests,, we were told he had liver failure. It was the most awful shock. Doctors explained that he had Wilsons disease, and that a liver transplant was his only hope. Jordan was placed on the emergency transplant list and a match was found just 24 hours later. Jordan’s transplant was a success. We were overwhelmed with relief, but , I couldn’t imagine the pain which another family were going through. I wanted this family to know that their selfless gesture had given my son his life back, so I wrote to them immediately via the transplant co-ordinator. I was delighted to receive a reply from Fiona, mum of Ryan, an 11 year-old boy, who had died suddenly of a brain aneurysm. It was to be the start of a wonderful friendship. Fiona and I started to exchange letters . We learned of lots of similarities between the two boys and Fiona told me it brought her comfort to know that Jordan was doing well. Four years after Jordan’s transplant, our two families met for the first time. It was amazing to finally meet.. I first heard about CLDF in those first few weeks in hospital but to be honest, there was just too much going on for me to engage. It was a bit later, after Jordan’s transplant, that I spoke to members of the support team who explained how they could give information and practical advice. As Jordan improved , we started fundraising for CLDF and for Birmingham Children’s Hospital – it was just very close to our hearts.
Jordan had always been bright and enquiring.. When he showed an interest in studying Medicine we said “Well you can do anything you put your mind to” - and
he did! Just over ten years after his transplant, Jordan started at University of Liverpool Medical School. It’s a five-year course, but he decided to do a Masters (Philosophy in Child Health) so he is now completing his doctor’s training after six years. It has certainly been more of a challenge with COVID to deal with too but touch wood, he has remained in excellent health.
Jordan showed early interest in studying medicine!
I’m sure that Jordan’s own experiences in hospital have influenced his desire to be a paediatrician (another eight years’ training!) One of his university placements was at a children’s hospital in New Zealand and he found it a wonderful experience. He seems to have a superb bedside manner anyway, probably because he can remember what it is like to be a poorly child in the bed. I know we have been lucky. Ryan's liver seemed to attach to Jordan's very well and I remember Dr McKiernan saying they have joined in a unique way. I have Ryan's rugby shirt, we have photos of Ryan around the home and on the second Sunday in December every year, we light a candle outside for all the children in heaven. Fiona will always be my amazing angel and we are in touch regularly.
Jordan with Zoe and Eon, his flatmate and revision buddy
I hope Jordan’s story can give hope to someone else. I remember during the very worrying, tough times someone saying to me "oh I know someone who had a liver transplant 20 years ago and they're doing great." That helped me such a lot to remain positive.
Fiona (left) and Zoe
I couldn't be more proud of Jordan - for his values, ethics, hard work and determination. I will never forget those testing, worrying times but remain grateful to every single person who supported him and us - doctors, nurses, CLDF, restaurant staff making his special sausage and chips and the absolutely fabulous play specialists at Birmingham Children’s Hospital who made each day bearable.
27 Liverlife
How has liver disease affected your family?
Every family where a child has liver disease knows about the difficulties which can occur when one child is in hospital and routines are disrupted.
But do these disruptions have any lasting effect on sibling relationships? We spoke to some families for their views.
Leonna whose 12 year old daughter, Trinity, had a transplant when she was just six weeks old, feels that the impact of her liver condition on the family is escalating. “My younger daughter Harriet, who is ten, knows that Trinity has to go to hospital lots, needs meds, and needs more care, but she just sees it that mummy loves Trinity more,” says Leonna. “She’s even said ‘I wish I was poorly so I can get treats from the hospital’, which is really sad. I find it exhausting and I’m not sure how to deal with it.” Harriet admits that having a sibling with health problems can be difficult: “I sometimes feel like Trinity gets more attention and I feel left out, like sometimes I feel invisible,” she says. Although I feel this way, I love Trinity so much, it’s just a bit hard to show it, she has to go through so much and I want her to know that I'm here for her no matter what.”
Trinity & Harriet
In other families, the impact is less obvious. Louise’s 11 year old daughter, Sophie, has biliary atresia and had a transplant when she was three. The family have always been very open with Sophie and her twin sister, Megan, about Sophie’s liver condition. “The girls have always been close and although Megan would say she doesn’t treat Sophie any differently – and Sophie would wholeheartedly agree - there are subtle things I notice,” says Louise. “For example, if Sophie has a hospital appointment which causes Megan some interruption or inconvenience, Megan never complains. When they were together at primary school, Megan would report back on any incident such as Sophie getting hit in the tummy with a football, whereas Sophie wouldn’t even mention it. And when they returned to school after the first lockdown, Megan was worried about catching Covid, not for herself but because she didn’t want to pass it onto Sophie. “Megan is a caring person, sensitive to the needs of others and because this situation is all either of them have ever known, we don’t know how much Sophie’s liver condition has to do with that.” Sophie & Megan
28 Liverlife
One mum who is certain that her son’s liver condition has had an impact on his twin is Sam. Her five year old son, Reid, has biliary atresia and while he is currently doing well and takes all his appointments in his stride, his brother, Eldon, has had a number of issues which prompted his parents and the school to consult an educational psychologist. “We thought he was showing signs of autism, but as we await a formal diagnosis, the psychologist told us he also shows a lot of attachment disorder behaviour,” explains Sam. “This would most likely relate to being separated from his twin when Reid was admitted to hospital at nine weeks old. Up until then, they had always slept side by side and been tandem breast fed. The psychologist also explained that it is entirely possible it didn't have the same impact on Reid because he was too poorly to be aware of anything other than how his immediate needs were being met and he had us around for the reassurance when he
needed it.
Eldon & Reid
“Even now, Eldon will always look for Reid. He doesn't necessarily need to be playing with him, but he gets very unsettled if he doesn't know where he is. One morning Reid woke up very early so my husband, Alex, took him out. When Eldon woke up, he went straight to Reid’s room, saw he wasn't there and came running to me demanding we go to the hospital to see Reid straight away! It took me a few minutes to calm him down and explain that Reid was out with Daddy and fine. “The attachment affects his behaviour too as it causes him to push us all away, which I have been told is a coping mechanism. It’s like he believes we are going to leave him or that we don't love him, so he does things to make us prove him right. “This is why we have started art and animal therapy for both boys and Eldon, in particular, is loving it so much. Something else that has really helped us is "therapeutic parenting". We joined the National Association of Therapeutic Parenting for £5 a month. And through them I've had so much material and webinars on parenting children with attachment difficulties and early trauma. “This has all been a massive learning curve and we have had a lot of parental guilt wondering if we could have handled things differently to have avoided this, but I think ultimately we have accepted we did the best we could with what we had and knew at the time and blaming ourselves won't help any of us.”
CLDF’s Children’s and Families Officer, Kate Conroy says: “Siblings are a really important part of the support we offer. Often, families who come to us for support initially contact us about their child with liver disease and then, as we talk, it becomes clear that the sibling of the unwell child is really struggling in their own way. Parental guilt is a common issue, with parents feeling that they have to prioritise their poorly child which means that their sibling gets a lot less time with them. Parents also struggle with the sudden health crises where they have to leave home to be in hospital for an unexpectedly long time with the unwell child and the sibling is left at home with little warning. "We get asked advice to help siblings who develop anxiety and become over-protective and work with families to help them find a way through these difficulties. The tips given by the psychologists (p30) are great and we use them every week. And once we can get back to face to face events again, they are a great way for siblings to get together and know that they are not alone in having a brother or sister with a liver disease. "It’s also really important that when your child with liver disease is well, try and spend some time as a whole family having some fun and also quality 121 time with their sibling just to check in with them and be the two of you. Just 10 mins a day can make a huge difference. "My main message is that for all parents of more than one child, at any time in their lives one child will likely need more of your support and time than the other, and you will feel split down the middle and guilty about one child not getting more of you. This feeling is just magnified when one child has a chronic health condition. Be kind to yourself, you are a parent not a superhuman! You can only do what you can do, and if you follow some of this advice you will help siblings feel heard, understood and safe while you care for your other child."
29 Liverlife
PSYCHOLOGISTS TOP TIPS Dr Helen Lowther and Dr Emily Fraser, paediatric psychologists at Glasgow’s Royal Hospital, have some tips for parents on how to minimise family stress:
Having a sibling of an unwell child to keep in mind can be very difficult as a parent. Your child with a liver condition, their treatment and trips to hospital will naturally take up a lot of time and emotional energy, and it can be a challenge balancing this out for the sibling(s) at home. We’re sure there are lots of things that you already do that help. However, we thought it might be helpful to share a few ideas of things that could help you on your parenting journey.
As your children grow, continue taking an open, honest approach about the need to be away in hospital at times, if appropriate. Preparing children does not raise anxiety in the long term, however sudden changes to the family system can affect anxiety if they are not prepared for this. For younger children, books and stories about hospital can be helpful as well. Educate the sibling(s) about their brother or sister’s health needs. Having more information can decrease anxiety. Have a plan drawn up with your children and other supportive adults to try to make the situation predictable if your child needs to go into hospital (Who will look after them? Who will do the school runs? Where will they stay?) When and where possible, spend one to one time with all of your children. This doesn’t have to be doing things that take a long time, a 10-15 minute activity can be beneficial – it can be an idea to write down activities you would like to do together and put these in a jar to pick from. Try to make a predictable routine when you are staying at hospital for your child(ren) at home. For example, can you video call at the same time each day, or get involved in your usual home routines like a bedtime story from a distance? Is there a special item of yours they could keep if you are having to be away from them? Once you have been through a difficult time (for example an inpatient stay or a change in their sibling(s) health), be sure to praise your other child(ren) for how you saw them coping during that time. Have open conversations about what helped and what did not help, and talk about any difficult feelings.
CLDF’s guide for supporting siblings of a child with liver disease contains plenty of information and advice for parents, as well as top tips aimed at siblings themselves to help them cope. To request a copy email families@childliverdisease.org.
Talk to your children if you feel that they are worrying a lot about keeping their sibling who is not well safe. Encourage them to do activities they enjoy and let them know that while it’s great that they look out for their sibling, there are some worries that it’s an adult's job to hold.
30 Liverlife
Stay strong - it will be fine
Moving to adult services can be a cause of concern for many young people, even more so if it has to happen during a global pandemic, but Oliver’s advice is to keep calm and carry on.
I have Alagilles and had a liver transplant when I was nine months old. Unfortunately, over the past five years my liver began to fail. My hospital stays were longer and more frequent and in October last year I was put back on the transplant list. Although I had been going to Birmingham Children’s Hospital all my life, the doctors explained that because of my age and size (I’m now 21), the transplant would need to take place at the Queen Elizabeth hospital. I know that moving from the familiarity of children’s services worries a lot of people but, to be honest, I was so fed up of feeling so ill all the time, I really didn’t mind. I was actually in the QE in February, being treated for cholangitis, when I received the good news that a liver had become available. With all the restrictions in place, I knew that the surgery was something I would have to go through pretty much on my own. My parents were allowed a short visit beforehand but not allowed to stay until I went down to theatre as they would have at the Children’s Hospital. By this time, however, I was used to being in hospital on my own, so it wasn’t that daunting and the staff on the liver ward were really nice. I spent my time face-timing family and friends and keeping in touch with my CLDF friends through Hive +. I knew that they would understand my situation and that some of them may have to go through the same experience one day, so thought I would tell them what it’s like. After the operation I did have one complication, a bile leak which meant I stayed in hospital for three weeks. I think, though, that when you are facing a transplant, you have to prepare yourself for the fact that there might be complications. Just as before, I was in regular contact with the other people on Hive + . They were keen to know what was going on and sent me lots of supportive messages. Now five months on, I’m feeling so much better. I have more energy each day and I’m doing online courses so that I can pick up my education again and hopefully gain a place at university. To anyone facing my situation I would just say ‘prepare yourself, stay strong and be resilient’. You expect it to be bad, but it won’t be as bad as you think – and keep in touch with your CLDF community – it will help them and help you!
31 Liverlife
Taking care of ourselves
We are mindful of how difficult the last year or so has been for all our families and keen to look at ways in which we can provide meaningful help. So we were immediately interested when we were approached by Dr Anju Bhatia, who is a speciality paediatric dentist, clinical teacher and trainee chaplain at King's College Hospital. Dr Bhatia is trained in self-care and meditation and had used these techniques during the worst periods of Covid within the hospital to support the front-line staff. She was interested to trial these techniques with young people with a long-term condition. We could really see the benefits and were delighted that six of our young people agreed to take part in the trial.
The different techniques we learned I know I will carry with me and apply them when I need to
Came at a perfect time, giving tips that I needed and that I was searching for
The course of two-hour weekly Zoom sessions over eight weeks focussed on self-care tools and allowed the group time to look at ways to feel brighter, happier and more relaxed during an ongoing period of worry and concern, both relating to their condition and the external environment. They explored aspects of being human and how negative emotions impact on them physically. They also practiced techniques each week which helped them to self-care more efficiently and improve their whole wellbeing. And although the impact of the programme was not immediately obvious to the young people taking part, each week we could see their understanding and confidence increase; they were all actively engaged and looking forward to each session. By the end of the programme, all those taking part could see that it had made a real difference, as their comments show We’ve had such a positive response that we are now working with Dr Bhatia to provide a well being programme for parents and will bring you more news on this as soon as it is finalised.
Help us keep everyone on Yellow Alert Yellow Alert is CLDF’s campaign to promote the early identification of liver disease in infants. It is vital that liver disease in newborns is identified and treated as soon as possible. Our free resources enable parents and health professionals to spot the signs of liver disease and arrange appropriate referral. From a poster for your GP’s surgery to information on when jaundice becomes a warning sign, you’ll find everything you need to know at childliverdisease.org/yellow-alert.
32 Liverlife
Don't try and cope alone Although many of our young people are aware that a liver transplant may be somewhere on the horizon, when that thought becomes a reality it can still be a shock. Gracie, 23, believes that talking is the only way to cope. I was diagnosed with portal hypertension as a baby and doctors told my parents that a transplant was a possibility in the future. However, my liver condition didn’t affect me hugely until 2012 when, following an episode of severe dizziness and confusion, I was diagnosed with hepatic encephalopathy. I didn’t have a further episode for two years but when I did (it was like a mini-stroke) Dr McKiernan at Birmingham Children’s Hospital, put me on medication. He explained that though medication would work for a while, in the long term, other options would need to be considered. That time came last December when, after I’d experienced a year of shocking memory problems, my consultant said she was going to speak to a transplant surgeon about going for assessment. For me, this was out of the blue and came as a massive shock. I’m the kind of person who likes to feel in control and the thought of this whole process made me feel powerless and out of control. I panicked and just wanted to shut myself away. It was my mum who suggested talking to CLDF. The charity has been there all my life and when Louise got in touch with me about Hive a couple of years ago, I thought it sounded a great idea and joined up. I’ve loved meeting other people this way and even met my boyfriend Josh through CLDF! So, I took mum’s advice, told Louise all about it and I’m very glad I did. Expressing how you feel to someone else really does help. Louise not only listened but encouraged me to talk to other Hive members. Many of them have been through transplant, so they really understand my worries, but also helped me see that they now have a better life because of it.
Louise has also encouraged me to talk to Zoe, the psychologist at Birmingham, and she has been a great help too. If I didn’t have Louise and the friends I’ve made through CLDF, I wouldn’t feel able to face this. I don’t know what the result of my assessment will be. I might be listed for transplant now or maybe I’ll be reviewed at a future date. But one thing I do know is that I won’t be trying to cope alone.
Support in education With many children starting school or nursery or moving to a new school in the next few weeks, it’s important to feel that your child’s place of education understands their needs. CLDF’s education packs have been designed to support young people up to the age of 18 in any educational setting. As well as providing teachers and support staff with information about childhood liver disease and its implications for the child concerned, there is plenty of practical advice which will benefit both schools and parents. Specific packs are available for England, Scotland, Wales and Northern Ireland. If your child is starting a new school or college and you have not yet received your pack please request one at families@childliverdisease.org. “We had significant input from parents and teachers in putting together the packs and have had very positive feedback,” says CLDF Head of Support, Michelle Wilkins. “We do appreciate that starting school can be an anxious time so would ask parents who have specific concerns to contact us.”
33 Liverlife
Big thank you to our young fundraisers Once again, our young people have done us proud. Whether they have a liver condition themselves, or are fundraising to support a sibling, they have navigated their way through this year’s restrictions to do what they can to support CLDF.
Ada’s fundraising grabs PM’s attention There’s just no stopping six year-old Ada. She featured on these pages last year when she did the 2.6 mile challenge and raised an amazing £3940. Now she has gone one step – in fact many steps - further. In February this year Ada and her mum, Emma, decided to beat the lockdown blues and raise £1,000 for CLDF by asking children to run 20 miles that month. Well the call was certainly answered! Not only did 230 young runners from throughout the country join Ada in her challenge, but they helped her to smash her original target, raising an amazing £12,000! It was such a fantastic result that Ada attracted the attention of local and national media and even received a special Points of Light Award from the Prime Minister. The awards are given to inspirational volunteers who are making a difference in their communities. Ada could not receive the award in person but has an open invitation to visit the Prime Minister when she goes to London. We’ll be watching Ada – and let’s hope Boris has his running shoes on!
Fearne forgoes chocolate Giving up chocolate for Lent is not an easy prospect for anyone, but when you’re an eight year old chocoholic, it’s especially tough. Fearne, however, wanted to do something special for CLDF so took on the sponsored challenge. She was determined to see it through and resisted temptation even when her brother ate chocolate in front of her every day! The result - £100 raised for CLDF and Easter eggs which tasted better than ever. Well done Fearne!
Mia makes beautiful bracelets
Nine year old Mia decided to keep her herself busy during lockdown by making loom band bracelets.
When friends and family saw the gorgeous designs she was creating, they started to put in orders, which gave Mia the bright idea of selling them for CLDF. In a matter of months, she had raised an amazing £370 for CLDF. A future fashion designer and a fantastic fundraiser, Mia, we’re so impressed!
34 Liverlife
After a couple of years, however, I started to walk with a limp and my left h
Nathan walks Hadrian’s Wall In January this year, Nathan, 10, set himself the challenge of travelling the distance of Hadrian’s Wall (90 miles) either by walking, cycling, running or even roly polying within 30 days. He was joined in his challenge by sister, Layla, team-mates from Bedlington FC U11 Dragons and fellow pupils from Meadowdale Academy.
The result – challenge completed on time and a fantastic £5,200 raised for CLDF. What a fantastic community effort you inspired Nathan!
Kayla brings in £1,000 for Big Yellow Friday Twelve year old Kayla loves to put on an event for Big Yellow Friday but lockdown meant that wasn’t an option this year. So she organised a raffle which raised a fantastic £500 – an amount which was doubled by her generous gran, Ann. “We also cut off 19 inches of Kayla’s hair and 12 inches of mine and donated it to the Little Princess Trust, raising £558 for CLDF,” says mum Elaine. “Kayla is determined to raise £10,000 for CLDF and she wasn’t going to let a pandemic stand in her way.” Kayla, we salute you!
Big Yellow Friday is back!
Big Yellow Friday is the highlight of our fundraising calendar.
Sadly, schools were closed to most pupils on Big Yellow Friday this year, so we missed out on seeing your fabulous pictures of Wear Yellow Days and bake sales. Next year, however, we’re planning to be back bigger than ever, so put Friday March 4th 2022 in your diary and stock up on the yellow food colouring and those lurid T shirts. It’s time to join Sooty once more for some Big Yellow fun!
35 Liverlife
You can make a difference Now, more than ever, your donation will have a real impact on the work we do to transform the lives of children and young people with liver disease. Simply fill in the details below and return this page with your cheque to CLDF, 36 Great Charles Street, Birmingham B3 3JY.
Title.
______
Full Name _____________________________________________________ Address
_____________________________________________________ _____________________________________________________
Post Code _____________________ (We need this to claim Gift Aid if you are a UK taxpayer). Email
______________________________________________________
Phone Number___________________________________________________
If you prefer, you can make a donation online at childliverdisease.org/donate. How would you like to hear from us? Please tick the boxes below to let us know what you would like to hear about and how:
Keeping our records up to date enables us to make most effective use of our resources. If we don’t have your up to date address, telephone number or email, please let us know at childliverdisease.org/contact-us or call us on 0121 212 3839.
CLDF support services, family/young people events and general information and updates,including Liver Life magazine: By post By email
□ □
By phone By text/SMS
□ □
All your details are safe with us. You can read full details of our Privacy Policy at childliverdisease.org/privacypolicy
CLDF fundraising events and activities: By post By email
□ □
By phone By text/SMS
Moved house or changed your phone number recently?
□ □
..........................................................................................................................................................................................................................................................................................
Children's Liver Disease Foundation
36 Great Charles Street, Birmingham, B3 3JY 0121 212 3839 | email : info@childliverdisease.org website : childliverdisease.org
Registered Charity Number : 1067331 (England & Wales): SCO44387 ( Scotland) Registered Company Number : 3431169 | ISSN 2398-3485
@tweetcldf
/cldfonline
/cldfonline
/cldfonline