Two years ago, Doroti wrote a blog about growing up as the older sibling to her brother who received a liver transplant. Doroti shared in her blog  that honest communication and opportunity for creative expression can make a significant positive difference to siblings’ experiences. Now she is studying English at the University of St Andrews, we’re delighted to catch up with her again. 

I have continued to find inspiration for both academic research and creative writing from my experiences as a sibling. I was recently accepted onto the Laidlaw Scholars Leadership & Research Programme, which involves conducting fully funded research on a topic of my choice under the supervision of an academic. Influenced by seeing my brother transition from children’s to adult hospital services, I will be researching the following project over a six-week period: ‘Self-Advocate and Listen: Examining the Importance of Contemporary Poetry to Improving Communication between Medical Professionals and Young Adult Patients.’ 

Last month, I also represented St Andrews at Uni-Slam, a national spoken word poetry competition. One of the poems I performed, titled ‘First Do Listen’, similarly addresses the need for improved communication in medical settings (you can find it at the end of the blog). This is an issue that I believe deserves more attention and action – empathetic listening should take greater priority in medical care, and young people should be better supported to confidently self-advocate. 

We are delighted to see that today the Scottish Medicines Consortium has confirmed that Odevixibat (Bylvay) will continue to be available for use by NHS Scotland as a possible treatment for progressive familial intrahepatic cholestasis (PFIC) in people six months and older  odevixibat (Bylvay)

This follows a reassessment process where further information was presented including evidence from our families on the difference that the drug has made to their lives.

Now that the final step of the drug approval re-assessment process is concluded, we know that the lives of children with PFIC in Scotland, and those who care for them, can continue to be transformed.

It is also very reassuring that this drug continues to be available across the UK so that PFIC patients and their parents will not experience a postcode lottery when accessing such an effective treatment.

We would like to thank all our PFIC families who played a part in getting us here including all of you who responded to our survey and in particular to our parent expert, Emily, who provided a powerful testimony of her daughter’s experience and the difference this drug has made to her family’s life.

Michelle Wilkins, our Head of Children and Families Service, said:
“We know that Odevixibat (Bylvay) makes a huge difference in the lives of children with PFIC and their families. We have been able to provide compelling evidence of this to the re-assessment committee and are delighted that they have confirmed today that it will continue to be available for use by NHS Scotland. It will continue to make a huge difference to those who use the drug now, but also to those who are diagnosed with PFIC in the future, reducing the devastating symptoms of this disease at the earliest stage.”

We will continue to work with our families and our partners on treatments to improve the lives of children with all forms of liver disease.

There are many forms of childhood liver disease and as we often say, every child’s experience is different. One aspect which unites almost all our parents, however, is that liver disease in children seems to invariably lead to a lack of sleep – in children and their parents! 

“My six-year-old daughter, who has biliary atresia and was transplanted at ten months, didn’t sleep through the night until she was three years old,” says Ashleigh. “I always put it down to her being in hospital for the first three months as she was born with bowel perforation and then lots of admissions and being disturbed during the night for observations and checks”.  

Katie, whose son has PFIC, was also three before he slept through the night.  “He fed every hour for the first year,” says Katie. “And co-sleeping was the only way I manged to get any shut-eye. It was a struggle but I’m grateful for all the extra cuddles!”  

We have also heard that even when children do go to sleep, it may not necessarily be peacefully:  

“Emily who is eight and has biliary atresia, talks and shouts out in her sleep even now,” says her mum, Alex. “I would say that at least five nights a week she has a dream which wakes her up.  We have now mastered the art of telling when she is talking in her sleep and it doesn’t really seem to upset her. In fact, sometimes she likes to laugh at the random things we tell her she’s said.”  

The experiences and feelings about transition to adult services will be different for everyone. So we’re very grateful to Ellie, mum to Zac, 17 for taking the time to share her experience. 

Ellie’s son Zac is 17 and will soon be moving on from Birmingham Children’s Hospital where he has received all his liver care since the age of four. 

“The concept of moving on from children’s services in itself doesn’t worry either of us that much” says Ellie. “Zac also has cystic fibrosis and because we have moved around a lot due to my job, he’s regularly had to go to new clinics and therefore get to know new staff for his CF care. 

What would be helpful is to know as far in advance as possible when the move is going to happen and where we will be attending future appointments. That’s information we don’t yet have. I know the idea is that past a certain age, young people don’t need their parents at appointments but if he’s still being treated in Birmingham, that’s 100 miles away from where we currently live and neither of us would be comfortable about him making the journey on his own at this stage. So from a planning point of view, the more advance notice we have about when he’ll be moving and where, the better. 

 Zac used to be treated at Birmingham by Dr Van Mourik who was great at communication. She always made it clear that when he got older, Zac would move to adult services for his liver care and that one of the differences from the paediatric world was that endoscopies no longer take place under general anaesthetic. This is a fact which has stayed with Zac and, while I wouldn’t say it worries him, he definitely has questions about it.  

I’m sure he’s not alone in this and I think that if there was a way of demonstrating to young people what an ‘awake’ endoscopy looks like in practice – either through a model or maybe animation – it would answer some of these questions. I feel that if questions like this can be addressed before the move takes place, this will be of benefit to young people, their parents and consequently the staff who are treating them.”        

More information on what to expect from the transition process here

We’re so proud of our marathon runners who brought in over £35,000 on Sunday. For several of Team Liver, it was their first London Marathon but for veteran, Paul, 79, it was his 34th! This means that he and his wife, Liz, have raised an amazing £84,000 over the years to support young people and families affected by liver disease. Paul tells his running story and offers some tips to beginners here.

I’d always been pretty fit, and had served in the navy for 12 years, but I was almost 37 before I took up running. I saw a local poster advertising the first Reading Half marathon, back in 1983, and a week later I was running it. I enjoyed the event but, crazy though it sounds now, I did no training. I couldn’t walk for a week afterwards and that taught me a big lesson. I went out training to avoid a similar situation in the future and of course, I got the running bug! 

I did the Reading Half again the following year. In fact, I’ve done that event every year since, apart from 2007, and that’s because I was in Adelaide, competing for the British Prison Service in the World Police and Fire Games. 

Sophie, whose youngest child Luna has biliary atresia, sees Big Yellow Friday is an important way of raising awareness and funds for children with liver disease, so one event is never quite enough! 

Armed with her fundraising pack, Sophie approached her children’s school and nursery, Millbrook Primary in Telford, her local Spar store, and asked her dad to ask his work colleagues at Kuehne and Nagel. All were happy to join in.  

Sophie’s mum, Nikki, who works for ABC Nurseries, told them about Big Yellow Friday and was delighted when they agreed that all four nurseries in Telford should take part. 

“My mum only started working at ABC just before Christmas so the fact they went to so much effort for Big Yellow Friday in honour of Luna is just amazing,” says Sophie. “They really did go above and beyond, and their display was just beautiful.”  

“We wanted to support Nikki and her family and were very happy to join in with Big Yellow Friday, says Stephanie Thomas, manager of ABC in Hadley. “It was great fun – we had yummy cake sales all week and on the day itself we invited children to wear yellow, and had a raffle. We’re so pleased to have contributed £566 to Sophie’s fantastic fundraising total.” 

Fundraising in the workplace doesn’t necessarily have to be about adopting a charity of the year. Just one day can make a real difference, as Gloucester based Permali demonstrated on Big Yellow Friday. 

The team fully embraced the Big Yellow Friday spirit by wearing yellow, baking yellow-themed cakes, and decorating the office in yellow. Through these fun and engaging activities, staff came together and raised an amazing £974 to support our Children’s and Families Services. 

Paul Wyatt, who will be taking part in the London Marathon later this month, is no stranger to the challenge of 26.2 miles. This event will be his sixth marathon overall, his third in his home city of London, and he is planning to complete all the world marathon majors by the end of 2027! This London Marathon, however, is particularly special, as he is fundraising for the British Liver Trust, a cause which is deeply personal to him. 

“Back in 2023, I raised over £2,000 for Children’s Liver Disease Foundation, a charity that has since merged with the British Liver Trust,” says Paul, a 36-year-old business advisor. “I knew about their work because my sister, Jenni, was diagnosed with auto-immune hepatitis as a child. Ten years ago, she underwent a life-saving liver transplant, and her courage and determination inspire me every day. On my wrist, I carry a constant reminder of her strength: the words “never never never give up,” tattooed alongside her initials. 

Oliva Bottomley has never wanted to let the fact that she has auto-immune hepatitis hold her back so on April 27, the 33-year-old from Wolverhampton will be taking on the London Marathon in a bid to raise £2000 for the British Liver Trust. 

“I was 13 years old and living in the US when I was diagnosed with AIH”, explains Olivia, an underwriting quality assurance analyst. “And although my condition has to be managed with daily medication, I am fortunate that I can pretty much get on with my life, but that’s not the case for everyone with liver disease. The London Marathon is something I’ve always wanted to do, and it’s brilliant to know that this challenge will help others in my situation. 

“From my point of view, the support groups and online community which the British Liver Trust provides are a real lifeline. Being diagnosed with such a serious condition and going through treatment is overwhelming, and even now I find it really helpful to be able to read other people’s experiences or speak to others who have gone through the same thing as me.” 

Olivia knew that preparing for the marathon would be  a real commitment: “It’s the perfect time in my life to do this as I am a homeowner with no children or pets, so I’ve had the time and resources to acquire everything I need in terms of trainers, running kit etc and also to do the training. I can’t imagine how I would do this if I had extra responsibilities! 

“Training has been tough – I’ve had a few shin and calf problems which have necessitated physio trips and also had flu which took me out of training for 11 days. Because of my AIH I’ve not been able to take anything to aid recovery as this would stimulate the immune system which is the last thing I need! So, I’ve had to do a lot of rest and listening to my body.    

“Now the big day is drawing near, I am both nervous and excited. This will be my first marathon and if I can complete it and hit my fundraising target for a cause which means so much to me, I’ll be delighted.”  

Audrey Cornelius, Director of Fundraising at the British Liver Trust said: “As a charity, we are leading the fight against liver disease and liver cancer. We reach over two million people each year; providing information and support to patients and families and providing vital advice to help people improve their liver health. But there is still so much to be done. We’re so grateful to Olivia. It’s really inspiring to see her taking on the London Marathon to support us, despite managing her own liver condition, and we hope she really enjoys the occasion. We shall be there on the day cheering her on!”  

You can support Olivia’s London Marathon challenge at  British Liver Trust: Olivia’s page 

We’re always saying how important it is for parents of children with liver disease to take care of themselves. This is often easier said than done, particularly if your child has to spend long spells in hospital. Clare knows more about this than most. Her son, Harry, (pictured above) is just recovering from his third liver transplant and has spent many weeks in Birmingham Children’s Hospital. We’re very grateful to Clare for sharing her top coping strategies here.   

As every parent knows, each hospital admission is a different experience but here are the things which have been of help to us each time. 

• Have a routine – something that you have control over. Something that you normally do at home and can also do in hospital or parents’ accommodation is a good idea such as doing the laundry or cooking a meal.  

• Sometimes, reading a really good book can transport you away from the immediate location and give your nerves a break, as can colouring, stickering, or in my husband, Simon’s case, learning a card trick! 

• Get some fresh air – even if it’s city air.  Simon and I did over 25,000 steps in Birmingham when Harry was in theatre in December. It was cold, damp and miserable, but for us it really helped. If it’s pouring down or there’s any other reason you can’t leave the hospital, pacing corridors instead can help. Anything that physically wears you out will help switch your brain off and allow you to get some rest (which is much needed). 

• Make time to talk. As we have a younger child in school, we have had to tag team and commute to the hospital over 16 months in total as one of us needed to be at home with him each night. This meant Simon and I had very little time together. So whenever we are at home, we try to spend time as a couple – we actually had lunch out the day before we had the transplant call. Just a coffee or a walk can be so important. If you are both walkers or runners, doing this regularly together provides a good opportunity to chat. If you’re not, go for a drive – being side by side encourages serious talk more than facing each other. 

• If it’s possible, try to keep working. In the past, I was a teacher so I was signed off during admissions. Over the past few years I’ve been self-employed so have no form of salary if I don’t work. More recently, I have continued working fewer hours  throughout many admissions. It did add stress, but I’d describe it as good stress. Not only was I still able to bring money into the house but I had a role other than being Harry’s mum (which was really important to me). So, although I completely understand that it’s not an option for everyone, our advice would be to carry on working as much as possible. 

• Health is health – physical or mental – so make sure you eat proper food and stay hydrated. Pop vitamins in your bag. Take home cooked frozen meals to defrost in the ward microwave – I’m vegan and city centre convenience shops are no use. Take a water bottle and lidded coffee mug. 

• Listen to the needs of your other children as much as you can. Last summer, when our younger son, Sam, wasn’t in school, we all relocated to the hospital which was easier and cheaper than commuting. We used Ronald McDonald House to cook and eat together as a family. The boys set their Playstation up with a monitor in the room and played together.  Last Christmas Sam reached a point when he couldn’t face being in the hospital and stayed with grandparents instead. 

• Take any additional help you can. The hospital might offer, but they will forget about you as soon as you leave the building (you’re not their patient). So use any counselling etc that your GP might offer or, if you can, consider paying for such services. Similarly, physiotherapy can help with injuries picked up when sleeping on hospital chair beds! 

• In the same vein, take up any offers of visits from healthy family and friends – this is also important for older children. Harry had lots of visits from his two best friends whilst in hospital and it really helped. Just make sure the friends are fit and well, and can cope with visiting a specialist ward.  

• Get to know all the local coffee shops and cafes so you can mix things up a bit. 

• Very importantly, Harry has pointed out that having a good relationship with the ward staff can help. For long termers (like us), you’re going to see more of the nurses, auxiliaries, play staff and hospital school teachers than you’ll see some of your best friends. Get to know them. It makes life a lot more bearable. Talking to other parents can help, but this is very situation dependent and sometimes you simply can’t take anything else on board.   

• Be kind to each other. Simon and I have leant on each other so much over the years, but there will be times when you are under so much pressure that a harsh word might slip out.  Cut yourself some slack – you’re under huge amounts of stress.  

• Give yourself time and space to adjust to normal life outside hospital.  If you need sleep, don’t beat yourself up. You’re probably exhausted. 

• We certainly don’t have all the answers but these are things that have helped us during our (considerable) time in hospital. It’s hard going and scary. Take each day as it comes and try to plan nice things to look forward to. We’ve found Booking.com, Airbnb or Expedia are all good distractions.