Liver Disease Stoke-on-Trent

A lot of you may know that North Staffordshire has for some years now had a very high mortality rate when it comes to liver disease. In fact, back in 2018 I along with the British Liver Trust tried to raise awareness of liver disease by saying that 1 in 5 people could very well be walking around with liver disease and not realise it: signal1.co.uk/news/local/ro...

I tried to follow the example of other cities and start a campaign to raise £75,000 to pay for a mobile fibro-scan machine. This machine could then travel all over the region checking on people’s livers, and highlighting potential problems at the Fatty liver stage. This would be a cost-effective way of identifying liver problems at an early stage, and save lives. It is far cheaper to treat someone with say fatty liver, than it is treat someone with cirrhosis or end-stage liver disease.

I have a lovely contact down in Bournemouth who managed to raise the money for a mobile fibroscan, and also was able to present a case to put forward to her local NHS and CCG. This lovely lady was sharing all this information with me, and I had copies of all the necessary paperwork, she also went on to explain how they had managed to get around all the possible hurdles, such as insurance, and maintenance costs.

Everyone I approached in North Staffordshire just wasn’t interested. The then local healthcare trust wouldn't endorse this as they couldn’t see any financial gain for them. (a "What’s in it for us" approach). My local MP, not interested as she at the time was receiving monies from a company who had ties with the brewing industry. She said that there was a conflict of interests so she couldn’t get involved.

The senior consultant gastroenterologist up at North Staffordshire Hospital was against this approach as she believed that using the ELF blood test with markers was the way forward. The local council said they couldn’t endorse such a machine (I personally wanted to see this machine being used at local drug and alcohol support centres).

So, the idea of raising money to try and fight liver disease in the Stoke-on-Trent area died a death.

Eighteen months on, it would appear that my wife has developed a liver problem being caused by a stone in her bile duct. This is causing her live to become damaged as bile is building up. Our local GP has finally booked her an appointment to see a gastroenterologist up at North Staffordshire hospital. The earliest appointment they have managed to book for her is on the 10th August (6-months).

Is it little wonder then that Stoke-on-Trent has a very high mortality rate when it comes to liver disease?

2020 is going to be a problem year for us.

[Hidden]

Nice to see you back Richard. I know it seems daunting and disappointing right now for you. All the fabulous things you keep on trying, in order to help others.

Each time having the door slammed. You will succeed, there is a window open somewhere.

Jaycee

[Laura009]

Lovely to hear from you Richard. One of the most knowledgeable people with regards to liver, it's functions and diseases .... we miss you here ! I'm appalled at the lack of enthusiasm you have faced having put such a huge amount of effort in. So sorry your wife is suffering now too ... the wait is dispicable.

Love. Laura xx

[Hidden]

Hi

It's lovely to see you back, Richard.

You do so much work and like Jaycee said, you have vtge door slammed in your face, this just isn't fair with all the work you do

I'm so sorry your wife now has liver disease, it's disgusting you have to wait until August,!!! Could you phone her consultant's secretary to see if her appointment can be brought forward. We are in in a battle at the moment because my appointment has been put back from March to June. Love and hugs to you both Lynne xxxx

[Millie09]

My sister had the same as your wife, she had the bile duct removed via key hole surgery. This was 2 yrs ago , shes now doing just fine .. Try not to worry. Sorry about the issues .

[Laura009]

It's under these circumstances l would consider getting your GP to refer you for a private initial consultation, with the gastroenterologist, obviously you would have to pay but it will then get you into the NHS system much quicker

L xx

[TT-2018]

Richard,

It is great to see you and your extensive experience back, albeit in your wife’s current circumstances.

I am certain that with your knowledge, once you have the appointment confirmed, you will be able to talk with the Consultants secretary and expedite your wife’s treatment.

Keep us posted.

Mark

[Hidden]

Good Morning Richard

I like many want to say its lovely to see you back!

Secondly with regards to your wife's hospital appointment have you tried to see if you can be referred to another hospital with a shorter waiting list? I,'m under Shrewsbury which is not that far from Stoke and there appointments are about 3 months from referral or you could try the QE or New Cross as I'm guessing your wife's being referred to Stoke!

You could however go with Laura's suggestion and go private for her first consultation?

Finally I'm sorry to read your other disappointing news when you'd raised such an amazing amount of money for such an excellent cause. I cannot begin to imagine the endless amount of hours and effort you and others must have spent trying to get the medical profession to accept your fabulous proposal!

Can I ask did you ever consider a mobile scanning unit that's on the road ? The cost would be much greater but it's a thought! I used to design mobile dental and mammogram units 30 years ago for the NHS before going it alone!

I did project manage 4 new operating theatres at New Cross and at York City Hospital but again that was long ago before going alone and designing/project managing for the MOD all over the UK instead.

Anyway here's a hug for you both and I wish you luck for the future.

Love Trish xxx

[ThreeSmiles in reply to Hidden]

Trish:-

“So, the idea of raising money to try and fight liver disease in the Stoke-on-Trent area died a death.”

[davianne]

Hi Richard,

It's good to hear from you again, but not with the news of your Wife's liver issue. 6 months it way too long to wait for a first appointment, as her liver will carry on deteriorating in that time. Would a call to PALS help to expedite her appointment, or could you ask for any cancelled appointments?

You are both in my thoughts and prayers.

I am disappointed that your fundraising has been met by deaf ears. They need to recognise that by the time people present with liver disease, the damage has already been done. Most of us on here are testament to that.

I don't know where we go from here??????

David

[Hidden in reply to davianne]

Hi David. I've been raking my brains as to how some local hospital trusts can be more forward thinking than others.

I think there are around nine different healthcare trust around the country which now have a mobile liver Fibroscan machines. Most of these have been purchased by fund raising by hospital charities. Organisation have in the past help out too, like the Rotary Club. I know the machine down in Bournemouth now travels all over Dorset.

We all know that liver disease is now the fifth biggest cause of death in the UK. We have annual breast and cervical screening programs for the Ladies, and prostate cancer checks for the Gent’s, but no checks on the Liver.

If a person has to wait 6-months for an appointment to see a gastro consultant, it’s most likely because they are all over worked and are struggling to keep up with demand. The Gastro/Liver ward up at my local hospital is always full. With people waiting for a bed to become available. Boris has promised funding to build a bigger liver ward. This to me is the wrong approach. Early identification of liver disease should be the way forward. Treatment at the fatty liver stage is far better than waiting for a liver to become cirrhotic.

I believe that our NHS has become too fragmented. Proper Healthcare is now sadly a postcode lottery.

(These are my own opinions, sorry for getting back on the soapbox. I guess my passion for things liver is still there).

[davianne in reply to Hidden]

Hi Richard,

I hope your wife manages to get a quick appointment, waiting is so worrying and demoralising.

No apologies needed, we are both singing from the same song sheet.

My Trust is the South Bucks NHS Trust, and they only have 1 hepatologist, and only 1 fibroscan machine, which lives in his office.

When I had my, now yearly consultation with him last year, I asked for a 2nd fibroscan, and he refused, because I already have a diagnosis of cirrhosis, even though with my healthy lifestyle for over 3 years, I thought that my Kpa might have reduced. I have my next consultation in April, and will then ask for a referral to Kings College Hospital, as he has not helped me with pain relief for my constant capsule pain, which I have had for nearly 18 months now, and therefore, I have lost all confidence in him.

More funding is definitely needed for more Liver Centres.

Best wishes to you both,

David

[Laura009 in reply to Hidden]

£75k was raised in under 18months and a fibroscan was installed within the following year at the Norfolk and Norwich hospital in 2011 x

[Hidden in reply to Laura009]

See, it can be done. I know talking was Hazel Allen down in Bournemouth, it took her five years to raise the funds. But what I liked about this was that while she's there trying to raise money, she was also raising awareness of liver disease. This is what's so urgently needed. Hazel also received a donation of £25,000 from the Rotary Club in Bournemouth. Three times I approached the Rotary Club in Stoke-on-Trent, and three times they said they weren't interested. Many people say that the best thing to come out of Stoke-on-Trent is the M6 motorway. I think they have a point.

[kyia]

It's good to hear from you but it's a shame you and your wife are having to go through this. I don't know how other areas compare in their approach but it does seem like a "health lottery", with some of us being more fortunate depending on where we live. I hope there is some way your wife can be seen earlier.

[Hidden in reply to kyia]

Many thanks for your reply Kyia, I shall be trying to sort something out tomorrow. I too think 6-months is far to long. I believe I have a marital responsibility to look after my wife’s health and well-being. (But then again, I might be old fashioned).

I shall be contacting my wife's medical practice again to see if things can be speeded up. Failing that I shall be going to "Healthwatch" and informing them of the dilemma. I shall also be writing to my MP.

I personally don’t have any faith in my local healthcare trust, and so don’t use any of there services. (except GP practise). All my medical needs are now dealt with down at the QE.

I am at the QE liver clinic on the 17th Feb, so I shall be mentioning this to the consultant too. I’m not trying to buck the system here, it’s just that the system is broken.

[kyia in reply to Hidden]

Working to get decent healthcare is NOT bucking the system. Go get 'em!

[ThreeSmiles]

Trish - it was an extract from his post - not my point!

[P13jne]

Hi Richard, lovely to hear from you.

How bloody frustrating, after all the hard efforts to raise the cash, they don’t want progress by the sound of it.

Liver disease is obviously not top of their priority list. They obviously don’t have any family members suffering from this horrible disease!

Keep fighting my lovely, you will find a way.

I hope your wife gets a quicker appointment, keep phoning them for a cancellation.

My consultant is now running 6 months behind her usual 3 month appointments. Let’s hope there’s no fatalities whilst waiting. It’s shameful!

Take care Richard, stay in touch. Jane xx

[AmericanDemocrat]

Richard -

So many things to say ...

* Looking after your wife’s health does not make you old-fashioned ... it makes you a gentleman and a caring partner.

* Someday your efforts will be recognized for being valid and forward-thinking ... until then, it must be infuriating to see the lack of emphasis on prevention.

* Thank you for dedication and hard work towards the health of your fellow humans.

* Please post again to give us the good news that your wife’s appointment has been moved up? You are NOT being inappropriate by insisting on this!

So good to see you back on the forum. 🌺🌺 🌺