I have stage 3 liver cirrhosis. I live in north wales. thee is no hepatology service ATALL in north wales, im under the care of a gastroenterologist, and a useless GP.
I saw a Hepatologist for a private consultation from the Liver unit in Liverpool, who offered to take on my care with a referral. My GP refused, saying unless there was a treatment they could offer that I couldnt get here he wouldnt. surely if there is no access to a liver specialist service then that is grounds enough? anyone any thoughts or info? my bilirubin is climbing, andmy clotting is going off too, and I havent had a liver biopsy done yet, just lots and lots of imaging and bloods
Help please
Bevx
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bevcol
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Many patients from Wales attend the Queen Elizabeth in Birmingham which is a leading liver and also liver transplant centre. You are entitled to proper liver care even if it means going across the border for it.
Most transplant centre's say they would rather see you too early than too late and you need to be seen to touch base with them, really push for this. We have another member from Wales who was sadly left too late for referral to QEB and has since been told she is now too poorly for transplant - caught earlier it might have been possible.
Back in November 2018, I wrote to the Welsh Minister of Health, Mr Vaughan Gething MP.
I was at the time very disappointed how Scotland who had introduced their minimal pricing of alcohol. This just increased the basic unit price of alcohol in an attempt to get people to cut down on their drinking.
I felt at the time that they had missed a trick here. Had this extra pricing been introduced as a tax, then the extra revenue raised could have been spent on good causes such as alcohol support groups and clinics.
At this time, Wales hadn’t decided how they planned to introduce their minimal pricing. (We were also still in the EU back then.) When I wrote to Mr Vaughan Gething I pointed out the possible opportunity of introducing this as a tax, and how the extra funding could be used to help pay for a Welsh Liver Transplant Specialist Centre.
I sadly received a rather strange reply. I was told that they couldn’t impose an additional tax on the sale of alcohol as this was against EU law. It went on to explain that both Portugal and Spain were against this as they saw this as being an additional import tax upon their produce, which was illegal.
Wales deferred introducing this alcohol price increase for another year. It was introduced on the 2nd March 2020 and followed the same scheme that Scotland used, with all extra revenue going back to the traders (such as Tesco’s) and the breweries.
Katie is right, most people from North Wales can be referred to the QE Birmingham, and those in South Wales are normally referred to the Royal Free or King's College Hospital in London. Here the bill is sent by NHS England and is paid for by NHS Wales. Because of the cost of this treatment, some doctors may be advised not to refer patients for treatment in England, as the overall cost involved may fall outside of their operating budget.
I often use a story here when talking about the emotional aspect of having a liver transplant. The traumatic worry can affect both the patient and the family members. The additional stress that is placed upon everyone can be horrendous. I once heard about a person from Wales, who was let down three times wail waiting for a liver transplant, as the livers turned out to be unviable. I can’t image those silent journeys back to Wales, and the disappointment time and time again.
Maybe one day Wales may get to have a specialist liver centre, as they really do need one. So, why a guy from London, concerned about Wales? I grew up in North Wales as a child and lived down in South Wales for many years. I have a rather strong infinity with Wales.
Raising awareness of ArLD has many fascists, tackling the cause and trying to get the people in power to realise the damage is an ongoing challenge,
but sadly I am just one voice shouting in the wind.
Hi you must be incredibly frustrated it comes to me as no surprise that Katie has given you all the right information she really gives a lot to this group!
I live in South Wales and whilst I have a tremendous care team here transplants are not carried out. So I ultimately fall under the care of Birmingham.
Birmingham always tell my consultant to refer early to give them the best opportunity with patients. I can’t speak medically I can only tell you what happened with me. I’ve been under the care of Royal Glamorgan since March in August because my blood count wasn’t improving I was referred to them. When I spoke to my nurse in September I asked her what will happen with me. Her response was from years of experience I needed a transplant so I’m going through the referral process at the moment.
I’m terms of my ongoing treatment it basically is blood tests and inspections. The hope is your liver will begin to recover if not there is only one option. So Wrexham hospital as featured on Tv yesterday the largest in North Wales doesn’t have a Heptology team ?
If I can give you anymore information just ask !
Hello bevcol,
Apologies for the delay in replying to your post. I have been trying to seek a definitive answer for you.
I have left your query in the hands of British Liver Trust colleagues to clarify the formal processes in North Wales.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Sending love and hugs because i can.
Access to Advagraf post Brexit 
Can I give a little hope?
Access to Medical Records
can i have some advice
