Support

[gamesmaker]

Why is there so much inequality in the NHS? I have friends with malignancies who have access to a a named specialist nurse - this specialist nurse (not a Macmillan nurse) had access to their notes and importantly, also to their medical team. The specialist nurse had the time to go though the diagnosis as often as they wanted on a 'one to one' basis and to give advice, literature etc. I am newly diagnosed with cirrhosis (progression from fairly long standing fatty liver disease and then NASH). When I asked my hepatologist (at a top London hepatology clinic) if there was a specialist nurse I could speak to / make and appointment with - I was told that there was only specialist nurse provision if I have an infective hepatitis.I have every bit as much of a life-limiting disease as my friends with malignancies, but no access to my own specialist nurse. Why is this?

[jessica29792]

I feel the exact same way. I feel like charities such as cancer constantly take credit. I know that it is a serious life threatening illness but so is liver disease, it is one of the UK's leading causes of death a year. But, whenever you see people out asking for help with charities it is always for cancer and when you ask people why they support it they say its because it is important. But surely they have more than enough money? They have nothing to show for all the money they take off people. But I think one of the main reasons people might not give to liver charities is possibly because they feel that some of it might be self inflicted, but they don't take into account other reasons why people have liver disease like other illnesses that have lead to it such as diabetes. Or even the fact that there is no cause. Myself, I am a sufferer of Idiopathic Cirrhosis and when my fiance tells people about my illness, they turn their nose up at him because of the stigma surrounding the disease. I think it is unfair that the NHS and other supporting teams are so unequal.

[gamesmaker]

Thanks Jessica. There are so many of us out there who have cirrhosis which is totally unrelated to lifestyle - but the knowledge base of the public seems to automatically think that it is self inflicted. We are autonatically 'labelled'. (Those who do have a cirrhosis that is related to lifestyle need support as well of course). I do feel very 'out on a limb' living in a rural area, many miles from the hospital where I am treated (an hour+ on the train) - and apart from my imediate family and a very few close friends I have told no one of this because I can predict what they are thinking. We often just need somone to talk to and empathise with us face to face.

[jessica29792]

Exactly. I feel like people automatically think of liver disease as either being cirrhosis caused by alcohol or drug abuse or they think of it as an STD, which of course is completely crazy. I think there are only two types of hepatitis that are forms of STD's. One of my friends, I barely have any now because of my health, said to me when she found out something along the lines of "Oh it will be ok, they have treatment for STD's nowadays". The comment completely shocked both myself and my mam. But like I said, on the other hand you have people who turn their noses up at you for even mentioning that you have a liver disease, let alone cirrhosis, purely because they put you in a group with alcoholics and the likes. I think the publicity or lack of regarding the liver, is really poor and needs to be more out there. People just don't understand how illnesses regarding the liver can affect a persons life.

[Bob3131]

I do sympathise with you on this point but the support does get better as time goes on having had a liver transplant 3 years ago. Due to cirrhosis.People always presume that it's caused by drink and drugs but as we know that is not always the case and this is the biggest problem this is why people don't donate cash to charities . I had my transplant at Kings College Hospital and I have found the support excellent the transplant co ordinators are always at the end of the phone both pre and post op I still attend Kings on a regular basis and I know that they are at the end of the phone to answer any questions that may come up. I do understand that not everyone will need to have a transplant but I can assure you the help is there if you get to the same point as I did 3 years ago. If anybody would like any information about transplants please do not hesitate to contact me.

[gamesmaker]

Thanks for that poolebh. I attend the same hospital but when I asked recently if I would be able to have a liver transplant in the future if it became necessary, I was told that as I am 63 (!!) and have diabetes, I would not be eligible for a transplant, because of the cardivasscular risk from the (very well controlled) diabetes. This I find upsetting as my cirrhosis is not lifestyle related (I do not drink alcohol). I just feel there is no one to turn to for advice and support apart from asking a string of questions when I go to my out patienrts appointment.

[Bob3131 in reply to gamesmaker]

I am sorry to hear that news but I would keeping pushing them when I went for my weeks assesment they said I was not fit enough and I was smoking at the time keep pushing and good luck

[gamesmaker in reply to Bob3131]

Thanks for that advice, I do not intend to go down without a fight if and when the time comes! I know I do not need a transplant at the moment but a glimmer of a possibility in the future would give me some hope.

[Nix105]

I also feel that the ongoing support for cirrhosis is poor...I recently had a procedure for a gyno problem which was complicated due to my portal hypertension and I had a specialist sister looking after me and she was fantastic, apart from making sure I knew every little detail of what was going to happen, the emotional support was invaluable as I was very nervous and she was there every step of the way, even ensuring I had some pretty good sedation!!

Anyway, my consultant is great for the factual medical stuff but I've had to get all my other advice for the Internet and forums such as this....I'd really like some advice about how I could help myself more, ensure that I get the right nutrition etc. all my consultant can tell me is not to drink alcohol -I'm one of those whose cirrhosis is most likely to have been caused by alcohol....and i do feel like I'm being judged everyday but if anyone had said to me that I would get this illness having shared some boozy evenings with friends and colleagues over the years then I would have certainly chosen another path.....and how come they don't have the same problem...? (I don't mean to sound bitter but it does feel very unfair sometimes).

Sorry to ramble on but I wanted to make the point that I sometimes feel liver patients are low priority....similar attitude to those that smoke or are overweight......isn't it a shame were not all as virtuous as those that judge us?

[papataal in reply to Nix105]

Hello,

I feel the same sometimes you have to ask yourself why me?? It seems unfair that people I know have a lifestyle so more unhealthly then me, but nothing happend to them. As my Consultant say's sometimes it is a roll of the dice.

I do feel gulity about feeling this way, but I'm glad in this country the Doctors are more about the treatment and preventing rather then judgeing, you should experience the Doctors in America.

Anyway sorry to rant, but you made such a good point.

I hope for the best for you.

[gamesmaker in reply to papataal]

Thanks for the support papataal.

[gamesmaker]

I could not agree more Nix105 - liver diseases seem very low priirity when compared with some other illnesses. Life seems to be a lottery - and why did your friends not get it as well.

[witchiegirl]

As well as what others have said, I think liver disease is low priority for funds because it's a smallish community - compared to, for example, breast cancer. And, sad to say, liver disease is less 'sexy' than breast cancer. I may be wrong but a few decades ago when the idea of specialist nurses came in, many Breast Care Nurses were paid from charitable donations. Now most are employed by hosp trusts as their value has been seen and, um, valued. (Sorry, word finding problems - I need to be under the duvet where I belong). It's true that the greatest cause of liver disease is alcohol use, and the other causes are so rare they just get lumped in. IMO anyway.

Further, I don't think it's good that those of us with a serious chronic disease should have to wait till we have cirrhosis before we get access to a specialist nurse type. It should IMO be something to consider early in the diagnosis process and coud pay dividends in terms of helping psychologically etc., and of course with life style changes.

In the end though it does probably come down to funds and the fact that a disease that is seen as self inflicted, whether that is true or 'right' or not, isn't as supported as other diseases. Annoying I know. It's something I've often thought over the years but never hquite had energy to do anything about.

[gamesmaker]

Your points are very valid witchiegirl. - all of them. It just seems so wrong that there is this inequality across the NHS . Thank goodness for this on-line help and support. I actually worked as a breast care nurse for many years until my retirement - it is all a bit ironical really that now I get an illness with no support network except for on line.

[liverlove]

I agree about the inequality. I have found great support on here, I also posted on here and someone from the liver trust asked me to call if I needed advice. Her name was Sarah and she was a great help.

[gamesmaker in reply to liverlove]

Thanks liverlove. I can see what the problems are - a lot of people live a long way from their liver unit and there will not be the funding to set a support group up in every locality. However I for one would be more than willing to travel the hour plus on the train to my liver unit for the opportunity to talk 'one to one' with a specialist nurse who knew my professional team and had access to my notes etc. They have specialist nurses there -but only for infective hepatitis patients. There are a lot of inequalities in the NHS.