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Home What we do Voice

Voice

Children’s Liver Disease Foundation gives thousands of young people and their families one strong voice to effect change in the diagnosis and treatment of childhood liver disease. This work is led by CLDF's Chief Executive.

Add your voice to ours and make change happen for young people with liver disease. Contact us to get involved.

Liver Transplantation

Patients and their families have much to contribute to the management and delivery of the transplantation programme.  Traditionally on the Liver Advisory Group (one of the advisory groups which reports to the main board of NHS Blood and Transplant - NHSBT) there was one liver organ recipient who represented the patient voice.  This post no longer exists and recently NHSBT have talked to a meeting of representatives from different patient groups, one of which is CLDF. 

CLDF is the only voice of the paediatric and adolescent population and their families.  As a group of patient charities we are keen to see that the patient voice is represented in all aspects of NHSBT’s work which means being included on committees and involved in deliberations.  We are pleased to note that the current strategic plan for NHSBT expresses the desire to involve the patient voice more fully in its work but the changes seem slow.

CLDF was pleased to read that NHSBT had achieved its target to increase organ donations by 50% by 2013.  However, it is worrying that UK family refusal rates are one of the highest in Europe at around 45% when individuals are not on the organs donation register.  For those on the donor register, one in 10 families will refuse permission for donation to proceed.  CLDF will be campaigning on this issue over the coming year. 

Allocating donor livers

How do the transplant teams allocate an organ?  Is it to the sickest patient?  Is it to the patient who may benefit the most (and this may not be the sickest)?  The waiting list is not like a ladder where the patients slowly rise to the top.  The transplant teams have to look at their list when allocating an organ to find the most suitable candidate given the conditions which prevail at the time.  Donor organs are not just a precious gift but also a scarce resource.  It is essential that the teams allocate carefully, sensitively and use their expertise and experience. 

Over the last two years the Liver Advisory Group at NHS Blood and Transplant has been looking at the issues surrounding allocating organs.  Issues such as should there be one national waiting list as opposed to a waiting list at each centre and who should receive an organ - the sickest or the patient deriving the most benefit have to be considered.  But do we have nationally applied criteria to identify the status of patients on the list?  How valid is this data?  Does the data and scoring systems currently used (UKELD) inform accurately about the severity of liver disease and/or benefit from a transplant?  How can we include best the skills and expertise of the surgical team in making the decision as to who should receive the transplant?  These and many more are huge considerations and it is important that all stakeholders are involved in discussions.

In order to look at this fully, the Liver Advisory Group has set up a liver allocation working party.  They have asked for the patient voice to be represented on the working party.  A group of liver patient charities meet about three / four times a year and talk about the issues facing their groups at the time.

As more meetings are held and decisions made, this information will be passed over to you.  One important decision made by the working party has been the need for transplant teams to document why a particular patient was chosen to be the recipient and why others were not chosen at that time.  This is a much needed system for transparency and equity and also highlights the practical and pragmatic factors which also come into play in making decisions.

Yellow AlertYellow Alert

CLDF's Yellow Alert prolonged jaundice campaign promotes the early diagnosis and appropriate referral of liver disease in newly born infants. Aimed at healthcare professionals and new parents or parents-to-be, Yellow Alert highlights the signs and symptoms to look for.

Since the start of CLDF in 1980 the early diagnosis of babies with liver disease has been of high importance.  In the early 1990’s CLDF launched the first Yellow Alert campaign and re-launched a re-vitalised campaign in 2006.

Yellow Alert remains an important campaign for CLDF and plans are in place to promote its key messages once again.  The materials are also still requested by health teams and is the most downloaded of all CLDF’s series of information.

In October 2012 the National Screening Committee re-evaluated whether screening should be put in place for biliary atresia. CLDF submitted information into the committee.  The evidence is sadly not strong and the conclusion is that despite CLDF efforts more evidence is needed for biliary atresia to be included in the programme. 

In an ideal world, CLDF would like to have the yellow alert information included in the Red Book; the book given to all parents at the time of their baby’s birth.  However, to get into the red book, it has to be accepted by the National Screening Committee with a screening tool.  We will continue to work hard to achieve the goal.

In the meantime, we will be looking at how we can promote the Yellow Alert message.

We would be really keen to hear from parents of babies who have experienced a late diagnosis for biliary atresia in the last five years.  If you would be prepared to share your story then click here and contact Mairead Ritchie, CLDF’s Press Officer on 0121 212 6012.  If you would like to chat to her informally to understand more how your story might be used in the campaign, please do contact Mairead.

Can you help spread the word?  Would you take a pack to your local GP surgery and ask if they would like more?  Can you make a difference?  Click here to order a pack.

NICE Guidelines on treatment of neonatal jaundice 

INHS National Institute for Health and Clinical Excellencen 2010 the National Institute for Health and Clinical Excellence (NICE) published new guidelines on how the NHS should assess and treat cases of neonatal jaundice.

We worked closely with NICE throughout, championing the cause of childhood liver disease. Information for parents, which supports the guidelines also links to CLDF’s Yellow Alert campaign.

View the NICE guidelines on neonatal jaundice.