We are delighted to report that for the first time in over a decade the Department for Education has published updated draft guidance on supporting children and young people with medical conditions.  Our Children and Families Service has been closely involved throughout the review process, ensuring the voices and experiences of young people with liver disease are represented. 

 

How the new guidance will affect children with liver disease 

 

• The guidance has now made clear that any child with a health condition, including liver disease, that needs supportive arrangements should have an Individual Healthcare Plan. 

• The strengthened guidance now includes a specific section on health conditions such as childhood liver disease, which reinforces that IHPs are essential for children and young people with childhood liver disease in education.  

• The draft guidance includes more practical “how to” detail, and cross references safeguarding and equality duties.  

• Education settings are now expected to publish their medical conditions policy on their website. This helps young people, parents and staff have a clear understanding of how support is managed.  

• Previously only covering schools, the guidance now expands to colleges and early years settings for the first time.  

• The guidance also signposts education professionals to the information and support which our Children and Families Service provides.   

 

 

Head of Children and Families Services, Michelle Wilkins, says: “So much of the support we provide is education related, whether it’s concerns before a child starts school or nursery or issues concerning attendance once they are there. In our recent survey of families and young people, 48% of respondents felt that having a childhood liver condition had a negative effect on educational attainment.  

“The new guidance is a welcome step towards making sure children with liver disease are safe and included in education. Because childhood liver disease affects every young person differently, we know Individual Healthcare Plans are vital in helping staff understand their needs and respond appropriately.  So we’re pleased to see more clarity in the statutory guidance around which children should have Individual Healthcare Plans, recognising how essential they are.  

“We welcome the opportunity we’ve had to feed into the draft guidance, and we’re pleased to see it broadened to include early years settings and colleges.  

“We hope this review continues to move us closer to a future where all education settings consistently recognise and support long-term health conditions, so no child is overlooked due to a chronic health condition.” 

 

The new guidelines are open for consultation until May 1st and parents can make their views known here    Policy papers and consultations – GOV.UK     

 

We have a useful guide available for anyone who would like help completing the consultation. Please email families@childliverdisease.org for your copy. 

 

 

The British Liver Trust has welcomed the decision of the Scottish Medicines Consortium to make Maralixibat available as a treatment for cholestatic pruritus in children with Alagille syndrome. 

“Having spent several years campaigning on behalf of families affected, we are delighted that children and young people in Scotland will now be able to access a medicine which alleviates one of the most distressing symptoms of this condition,” said Michelle Wilkins, Head of Children’s and Families’ Services at the Trust. 

“We know first-hand the difference this drug makes, as the testimony of one young girl who took part in the trial for the medicine illustrates: 

‘As a child, the main thing I recall about Alagilles was the severe itch it gave me. I had so many cuts and scratches that I was often too embarrassed to wear shorts and T-shirts like other children did in the summer. People used to assume that I had eczema, and I was happy to let them think that – I didn’t particularly want to talk about my liver condition. I agreed to take part in a trial for Maralixibat and the medication has changed my life, it’s reduced the itch so much, and unlike when I was younger, I can wear what I want now!’ 

“Whilst we acknowledge there are other complexities which Alagilles presents, we know that the emotional and psychological impact of pruritus is significant, not only for the child or young person suffering, but from their parents and carers who have to witness it. 

“So, there is no doubt that this decision will have a real impact on the quality of life of patients and their families in Scotland. However, we are extremely disappointed that families in the rest of the UK will not have access to this as NICE (National Institute for Health and Care Excellence) has not yet recommended it. It seems extremely unfair that whether a child has access to a drug which could make a huge difference to quality of life for them and their family, is currently down to a postcode lottery.” 

Details of the SMC decision are here .

  

 

Do you have a childhood liver disease? Or do you care for someone who does?

We want to know about your experience to help us shape our future services for young people, families, and adults with a childhood liver condition.

Completing our survey will only take ten minutes of your time but will be very valuable to us. We want to hear from people with a childhood liver condition or from parents or carers of younger children. This is your opportunity to voice your concerns and opinions – you can do so anonymously if you prefer.

The survey which you’ll find here  is very easy to complete but if you have any questions, please email families@childliverdisease.org.  Thank you so much for taking the time to do this. Your help is hugely appreciated.

Doroti, a student at St Andrews University, is very familiar with our work, as her younger brother was born with a liver disease and received a transplant as a child. Her research project is all about improving communication in healthcare settings and here’s how you can help:

 

Are you a Young Adult Patient (Aged 18-25) or medical professional who has experienced communication in a healthcare setting?

For my Laidlaw Scholars research project, I will be examining how contemporary poetry (a tool for empathy and open conversation) could be used to improve communication between medical professionals and young adult patients. The project will focus specifically on listening for healthcare professionals and confident self-advocacy for patients.

As part of my research, I am looking to conduct interviews with patients and medical professionals to learn about their experiences with communication in healthcare settings.

What would you be required to do?

• Take part in a 30-minute Microsoft Teams semi-structured interview (at any date/time between 2nd June and 2nd July 2025) and answer open questions concerning experiences of communication in healthcare settings and opinions regarding contemporary poetry.

• You will have opportunity to ask any questions that you may have

• You will have right to withdraw at any time during the study

• You will NOT be required to answer any questions that may cause distress

• You MUST be at least 18 years old to participate

• All interviews will be audio recorded and subsequently anonymised.

If you would like to participate in this research, please contact the following email address for more information: dp215@st-andrews.ac.uk.

 

Many of you will have seen last week’s headlines about the abolition of NHS England and may have questions about the implications for your child’s care. We don’t have all the answers immediately but would like to offer some clarification. 

NHS England is the body which was set up to oversee the day to day running of the NHS in England in 2012. The Prime Minster has explained that the decision to abolish it has been made:

• to save money – it is hoped the move will generate £100m in savings
• to reduce bureaucracy and cut the amount of time spent by frontline staff completing paperwork, so that waiting times can be reduced, 
• to bring the NHS back under the control of the government, specifically the Department for Health and Social Care (DHSC). 

 

NHS England currently has responsibility for delivering specialised services which includes paediatric liver care. We are therefore now working to establish what changes, if any, this will mean for our families and will update you as soon as we know. 

In the meantime, if you have any particular concerns or questions, email us at families@childliverdisease.org   

 

You can see the full Government statement on the forthcoming changes here   

Big Yellow Friday is all about raising money for our Children and Families’ Services, so we love to see children getting involved. And we’re particularly pleased that Zachary isn’t letting the fact that he’s not yet three years old stop him from doing his bit! 

 

Next weekend, he’ll be taking part in his local junior Parkrun. Not as an official competitor (unsurprisingly two year olds are not allowed to register) but the kind people of Parkrun are allowing him to join in at the end and have his own finish line – with yellow ribbon of course! 

“Zachary was diagnosed with alpha-1 antitrypsin deficiency in 2023,” explains mum, Gemma. “So for us, taking part in Big Yellow Friday is an important way of raising funds and awareness to support him and other children like him.  

 “He’s seen me do Parkrun and has done it in a buggy when younger, so he’s very excited that next weekend he’ll be running or walking 2K with mummy and daddy, with lots of friends and family there to cheer him on. He was delighted with the yellow balloons in the fundraising pack and has been doing plenty of ‘big strong Zachary exercises’ in preparation! 

“We’ve been thrilled with the support we’ve received. I’d hoped for £100 but we’ve already raised over £400 and it’s great to know that Zachary is playing such a key part in supporting a  cause which means so much to us.”  

 You can support Zachary’s Yellow Parkrun by going to Gemma Donaldson is fundraising for British Liver Trust 

 

 

Family life is hectic. And adding in the extra stress and worry of caring for a child with a liver disease can take a massive toll on you as a parent. It’s all too easy to give into negative thoughts and emotions, leading to anxiety and stress which can be overwhelming. Our Wellbeing and Coping Skills workshop, which takes place next month,  is designed to help you understand how to manage stress and why self-care is so important. 

It is delivered virtually over Zoom with a mix of parents of children with liver disease, all at different points in their journey (some newly diagnosed, some with years of experience). 

Anyone can share their story, but nobody has to. The workshop will cover a range of issues which parents may have experienced including anxiety, chronic stress, PTSD symptoms, sleep issues, work/life balance to name a few. 

We’ll look at why and how parents may experience these issues and offers some tips and techniques to address them and promote improved coping skills and enhanced wellbeing for you and your family. 

 There will also be a chance for general discussion and we’ll aim to answer all your questions too.  

After the workshop you will also receive a pack that contains some self-care goodies and a printed booklet summarising some of the points we covered. 

Parents who attended last year’s workshop on this topic found it helpful. One commented afterwards: 

 ”Thank you for all you do, CLDF are a light in what can be a very dark place” 

 If you think you might be interested in taking part in taking care of you this February email families@childliverdisease.org and we’ll let you know as soon as a date is confirmed and  send you all the details.  

 

This time last year, we were helping to promote Waiting to Live, an award-winning national organ donation campaign which saw children transformed into handmade dolls to raise awareness of the need for young organ donors. 

We’re delighted to report that over half the children featured in the campaign have now received a transplant in time for Christmas, including three year old Ralf, whose story we featured on our website last year  and who received his new liver this summer. Ralf’s mum Daisy shares their story here.

“Ralf was born with a genetic condition which led to him needing a liver transplant, which he received in summer 2024. The wait was the hardest thing we have ever done. You live every day, every moment, not knowing if the call is coming or when, and mentally this took a huge toll on us, especially as we had many calls up to hospital with a donor offer which for many reasons couldn’t go ahead, before finally it happened.

Fans of BBC’s EastEnders will know that the current storyline features a two-year old boy in hospital, having been diagnosed with autoimmune liver disease. 

We’re delighted that the issue of childhood liver disease is being featured in a drama which attracts millions of viewers, as so many people do not realise that liver disease affects babies and young children. We at Children’s Liver Disease Foundation have provided the research team at EastEnders with information and guidance to ensure that this condition and its implications are portrayed as accurately as possible. 

Further information on autoimmune liver disease can be found here.

The issue of living related donation has been raised in the story, something which many of our families have been through, including Harry’s who share their story here

Below are answers to some questions you may have about the storyline:

Q: I’m undergoing tests for living related assessment and it’s taking ages. Why is this making it look like it happens really quickly?

A: This is a serial drama and while we have been able to ensure that the medical facts are accurate, we do not have control of the timing of the storyline within the episodes. We took the decision to accept that TV drama often exaggerates real life for dramatic effect but feel that the benefit of national awareness of childhood liver disease outweighs this.

If you have any questions about your living related assessment, please speak with your transplant co-ordinator and they can answer them.  

 

 

Q: Why don’t any of the episodes feature CLDF leaflets or website?

A: Unfortunately due to BBC rules we are not allowed any product placement, although we have supplied relevant literature to the scriptwriters.

 

Q: How can you be sure this subject will be treated seriously?

A: All scripts concerning this storyline have been checked by staff at Children’s Liver Disease Foundation including one of our trustees, hepatologist, Professor Richard Thompson, Kings College Hospital, London.

 

Q: I would like more information on being a living donor for a child. Who should I contact? 

A: You will find more information at Donating a liver lobe to a child – NHS Organ Donation or you can call NHS Blood and Transplant on 0300 123 23 23 to seek further information. There is also a live liver donor programme for adults – further information is here: https://www.organdonation.nhs.uk/become-a-living-donor/donating-part-of-your-liver/