Does anyone know what the "going private" options are for ongoing treatment of decompensated liver disease?

[carer2709]

Since my husbands diagnosis with Cirrhosis last year (emergency admission on holiday in Crete; such an awful experience) there has been a relentless succession of hospital stays (3 due to hepatic encephalopathy) and many discussions with the gastro team but we feel no one is really taking charge of the problem or offering ideas for managing to live with all the symptoms. We've talked about going private or alternative but where do you start?

[Bolly]

Its not always easy but is possible to switch medical teams within the NHS. Is your husband treated within a Primary Care Trust (secondary level NHS) hospital near you? Not all have hepatologists but have a team of gastroenterologists treating liver patients. Sometimes city hospitals or university teaching hospitals have hepatologists, could you get a referral to one near you?

There are 7 specialist liver units in the UK: - Birmingham, Cambridge, Edinburgh, Leeds, Newcastle and 2 in London. Do you live near any of these cities?

To research private doctors you could try the Doctor Foster website or a personal recommendation is often the best.

I'm treated by 3 different teams in 3 different hospitals plus my GP and have found over time that the best person to 'manage' this team is me, lol! I keep a file with all my results and records and letters so I can keep everyone up to speed with me!

[angse]

Hi sorry know nothing about the private sector. Hope you husband will get the care he needs, I to had hepatic encelapthy in Feb 2013 due to massive upper GI bleed, glad to be alive, do have cirroshiss but what does decompensated mean all the best for future. Angse

[Ph1ldad in reply to angse]

Hi Angse, decompensated basically means that the liver cannot continue to operate as required and is at the stage of complete failure, according to my consultant. Cirrhosed livers can continue to work for a long time (16 years to date in my case) with few, if any symptoms but as the disease progresses it's ability lessens. Hope this helps Phildad

[angse in reply to Ph1ldad]

Hi phildad. Hope all is well on your side, thanks very much for your prompt reply it has helped explain things, I forget everything I need to say when I see my gastroenterologist, new to this forum but already learned much, thanks again. Angse

[clover90]

I have been treats for the last 2 years privately. I'm lucky, enough to have medical insurance through my husbands work. At the time of getting a diagnosis there was no hepitologist based at my local hospital & I was sent to a gastroenterologist who I have complete faith in & who I will see this Tuesday. I get all my medication on NHS as my GP has also been very good. One thing to remember is most private doctors also work within the NHS so you may end up paying for treatment you could get for free. Hope you & your husband find a suitable doctor who can help.

[dawks]

I have found the team at The New Queens Hospital, Birmingham to be very good and have have rang for advice as my symptoms changed and also has things deterioated quickly since jan 2013. i to suffer from Hepatic Enc and have been told to use lactulose and try and clear the toxins build up in the brain by going to the toilet 2 to 4 times a day. So far things are working to plan and i feel like i am not loosing hours in the days or days in the week. I have so far this year spent 3 weeks plus in hospital and not Queens a local hospital that balances my bloods and stabilises me before i go home..All i am saying its works for me but i am no medical expert, my GP is there as a back up and support if and when needed. I found that my symptoms sometimes changed day by day, they are alot worse than at the start of the year, i have given up drinking and currently having tests to see if i will be accepted on the transplant waiting list..i hope this is of some help.. as you can see by the time i am doing this my sleep pattern is all over the place..

[anne-marie50]

I too suffered with Decompensated Liver and I was under our local hospital which was only a NHS primary care trust place but I wasn't getting the treatment I needed. My wonderful GP referred me to St James in Leeds which is a teaching hospital. I stayed there for 4 days to have an assessment last year and continued to be under their Liver specialist team. February just gone I had a Liver Transplant and have not looked back. I am still under St James and for the 1st 3 months I have been going back every week sometimes fortnightly to see the specialists (this is normal for anyone that has a Liver Transplant) and they always kept my GP in the loop. On Friday when I was there they told me I now only have to go every month as I'm doing so well.

I'm not saying your husband will need a Transplant as I'm no doctor but I agree with Bolly regarding the hospitals he suggested. I live in the North West and was lucky to be referred to St James. I hope your husband also gets referred to one of the hospitals suggested. I also agree with Clover90 that by going private could mean your paying for something you could get on the NHS as these specialists work for both sectors.

I wish your husband all the very best. Please let us know how he gets on with whichever option you both take.

[carer2709]

Dear Everyone, thanks so much for replying, this is such a treadmill of emotions; I feel I have a grandstand seat wathcing my husband die by degrees with advice and help brilliant in all the emergencies but not at all helping us cope with the day to day weariness of cirrhosis symptoms - dawks, I totally get the sleep pattern problems, at once stage a while ago my husband had almost completely reversed his day night. It is so good to see all your answers though and to realise I am not the only one going through this and that some people do get transplants and they do work. Bolly, your point about keeping notes - I am the one keeping notes of everything and writing down all the questions for the consultants - last week the guy I thought was the biggest gastro expert in our hospital told me he couldn't answer my question "because he's not a liver expert". We do see the actual liver expert today, at our hospital which is a teaching hospital and we have been referred to Kings College Hospital for consideration for the transplant list but we don't have a date for an appointment yet. I'm not thinking of going private for the transplant part but really to get some better advice/ideas/alternative treatment that might lessen the awful symptoms he is suffering. Thanks again all

[papataal]

Hello,

I had cirrhosis as well, I was with private healthcare provider when diagnosed, after the initial assessments all done privately I decided to go NHS, I found that it was the same Doctors that you saw, you also got to see Specialist nurse and Co-coordinators, It was my own private Doctors that advised me to go NHS. I felt the treatment was a lot more specialized, And remember in this country just because you go private you do not get any advantages in the transplant listing process. I was lucky enough to be only 50 miles from London, which gave me access to 2 very good hospitals. I know this all sounds strange, but my wife dealt with it all, she did everything to get me "fixed", she ws reluctant to go NHS but with all the complications during transplant she was very glad as was I. I hope for the best for you, if you want any more info please feel free to ask me, I know what your husband is going thru and also understand what you are going thru as well!

[Bolly]

"the guy I thought was the biggest gastro expert in our hospital told me he couldn't answer my question "because he's not a liver expert". I suspect many of us will have been referred in the first instance to a gastroenterologist. My guess is that there are more of them and they are more common in Primary Care Trust hospitals than hepatologists are.

Gastroenterologists treat the whole digestive system, not just the liver, as your gastro guy said. Gastros often have things they like treating, mine for example specialises in doing endoscopies, not just for liver patients. However he is out of his depth when in comes to my liver problems, which is why I go to a hepatologist for that. My hepatologist is also a gastroenterologist, its just he specialises in treating patients with illnessness that affect the liver, not just hepatitis. Its complicated, but in my experience you will know when you have found a specialist you feel comfortable with. Heres hoping you had a positive appointment with the liver expert.

[Sheana]

You are highly unlikely to be able to get a private medical insurance policy that covers pre-existing conditions. However you can dip into the private medical market yourself. A consultation with a liver specialist would probably cost £225 - £350. An MRI can cost £500 - £1000. Sometimes it's good to have a private consultation with a liver specialist just to get proper answers to all the questions you have. Being treated for serious liver disease by someone who is not a liver expert can be dangerous - I know this from bitter experience - so try somehow to get a consult with a liver expert.

[carer2709]

Dear all I am afraid the opportunity for seeking outside liver expert advice may have been passed. Unexpectedly my husband now has severe kidney function problems. as 3 different doctors have told me today, without working kidneys and a very damaged liver you are in serious trouble. its obvious the hospital are doing their best but he is attached to lots of machines in ITU right now and may be in line for dialysis. they advised me to get the (grown up) children in to see him. I guess they don't do that unless things really are serious. If you believe or even if you don't pls say a prayer x