16 minute read
First digital conference 6. Your views count 8. Didn
from Liver Life 2021
by CLDFOnline
First Digital Conference for CLDF
“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
“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
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.
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. 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/.
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.
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.
New treatments for childhood liver conditions
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.
VOICE NEWS
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.
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 If concerns were expressed
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
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.
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.
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.
“We’re so proud of Mollie and Gemma, ” says Young People’s Officer, Louise.
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. ”
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 person feel more confident in my who took part in Bounce liver Back disease and more confident in me” Young
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.
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.
Our dedicated Facebook groups for young people, Hive for 13
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
– 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).
