Discussion Board Forums Announcements Help for patients in the UK

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  • #20043
    marions
    Moderator

    I so much agree with the above. In fact, have you read the Newsletter especially, the part Stacie had written?

    #20042
    darla
    Participant

    Startreknewf,

    I am in the US in Wisconsin & recently experienced the same situation as you. My husband passed away Sept. 2, 2008 at the age of 62 only 7 weeks after his first symptoms & only 1 week after the diagnosis of CC. We share a lot of the same experiences & frustrations. It was also the worst experience of my life. I think more needs to be done everywhere to educate people about this terrible disease & to further research in this area. I did not find this site until after Jim passed away, but wish I had found it sooner. I had never even heard of Cholangiocarcinoma & now I am learning so much & realizing that I am not alone. There are so many being affected by this disease. It appears the situation in the UK is not good, but I really don’t feel the circumstances here are much better in regard to this type of cancer.
    More research needs to be done & more information needs to be made available to patients & family. All we can do is each try as best we can to get the word out & try to make a difference, not only for ourselves but for others in the future.

    Darla

    #20041
    frogspawn
    Member

    I’m up for it! All the time services are disjointed and fragmented people with cc are going to suffer.

    #20040
    pauline
    Member

    Dear Stacie,
    Thanks for following up on this. It is very disappointing news for cc patients because what it really means is more of the same and that simply isn’t good enough.
    They don’t seem to be asking for feed back from patients/ carers. Perhaps we should give them our views anyway! Are any other UK members interested in making a stand?
    Pauline

    #20039
    ron-smith
    Member

    Stacie

    Thank you for taking the trouble to find out the current position. I have no doubt, that in the best British tradition, there will be a number of committees set up to discuss this. There will be a few “jollies” for the committee members, no doubt including the occasional foreign trip to see how others handle things. Or am I just a cynic?

    Ron

    #20038
    stacie
    Member

    Had an e-mail from Professor Lodge this morning. Here is the information.

    The Department of Health ran into some resistance from senior liver surgeons that there was not a need for national centers in the UK. This was felt to be a case of territorial/empire wars and while the Department of Health recognizes this they did not feel they could go against the advice of senior liver surgeons in the area. They have decided to run an audit of all the centers that say they are working on cholangiocarcinoma to find out what they are doing and what the results are. Professor Lodge will be able to make another bid for the centres in 2 years and thinks he will be successful.

    In answer to Scotland being left out of the picture. The Department of Health only includes England and Wales. He said Scotland has its own much better funded health system. Professor Lodge can take patients from Scotland if they ask for a second opinion but the Department of Health will not fund them – they would be funded by the Scottish Health Office and reciprocal arrangements are in place already at the government level.

    #20037
    stacie
    Member

    Pauline,

    I will check in with Prof. Lodge this week and give you an update.

    Stacie

    #20036
    frogspawn
    Member

    Startreknewf your blog made me cry. It is terrible isnt it? I don’t know whether your husbands hospice was similar to my Brothers in leeds but it was a disgrace. The state of the place told me everything I needed to know about my brothers prospects (derelict dirty old buildings, demotivated and downtrodden staff…like a ghost town in many respects).

    It told me more than anything the doctors could say. But it shouldnt be like that should it!?!

    I dertainly detect a greater willingness in the US from all the contributions on this blog to tuff it out and not give up. That is good to see i think.

    #20035
    pauline
    Member

    I am wondering what the outcome was of the discussions over the UK centres. Have we heard any more from Prof. Lodge or anyone else? If not, I think we need to get onto this. I would be very willing to be involved in any way that would help.
    Pauline Roberts

    #20034
    frogspawn
    Member

    What do people really want in the UK…

    To understand the illness they have got; explained to them in language they can understand by qualified professionals

    To have all the treatment options explained to them in a reasonable way with the right emphasis on risk/reward for the various treatment options

    Honesty

    Compassion

    The opportunity to take part in Research trials, if applicable

    A Pleasant treatment environment local to where you live

    Is this what we get? (Rant Over)

    #20033
    stacie
    Member

    Startreknewf,

    First I want to say how deeply sad I was to read your post.

    My own frustration, panic and complete feeling of being alone as I researched for my brother was the reason we started the discussion board, so that no one would have go through this alone again. That being said, I’m so glad you’ve found us.

    Unfortunately, your experience is shared by so many.

    We have a lot of work to do in the areas of education and advocacy. Fortunately, we are starting to see many who are standing up and demanding something more, this is part of the process and we want to stand beside, in front, or behind anyone who wants to see progress made in the treatment of patients with cholangiocarcinoma.

    We can do so much more together and yet each individual patient makes a difference, this is what the medical community needs to hear from us and this is what we are striving to do.

    Thank you for your comments.

    #20032
    startreknewf
    Member

    Stacie,
    Today I accessed the site for the first time and was amazed to see how many other people’s lives have been affected by cc. I am particularly interested in development of research in the U.K. since it seems as if you’re on your own once diagnosis is made. My husband Mike was taken ill with jaundice ,dark urine etc in March 2001. He went straight into the Derby City Hospital and at first they found nothing on the scans. Nottingham however reviewed the scans and diagnosed cc. Mike was told instantly by the consultant there was no treatment since radiotherapy and chemotherapy would not be effective and that he might live 6 months. He spent the next 3 months in hospital having stents constantly replaced and was also sent to the Liver Unit in Birmingham for surgery. They failed to operate successfully since during surgery they found it had already spread to the lymph nodes. He died after weeks of battling septicaemia, in a Derby hospice in June 2001. The whole appalling experience lasted from diagnosis to death in less than 3 months. Although medical staff were kind, we had no hope of any meaningful intervention. His death shook me to the core and it is only now, seven years later, that I can talk about it. If ANY help from specialist centres or specially trained doctors can be made available to families hit by this dreadful disease it would be such a leap forward. During the months of his illness and the years since I have felt totally alone in my experience of this disease. I have never met anyone else who has been affected so it is a comfort to discover that other people are coming forward demanding more specialised research and centres where people like Mike can be helped. I also felt that a lot was kept from us by the doctors since Mike was a lost cause. He was sent straight from Derby to the hospice when they decided there was no longer any point in treating the septicaemia with antibiotics.He was in the hospice 4 days and I was informed by nursing staff on the third day that Mike had only a day left to live. He died the following morning. This was without doubt the worst experience of my life, and my thoughts and prayers are with all those other families undergoing the same ordeal. The sooner this cancer becomes a priority for research ,the better.

    #20031
    jeffg
    Member

    Hi Pauline… That’s it in a nut shell. With priority on communications and encreased expertise with quicker national approval of novel treatments.
    Jeff G.

    #20030
    pauline
    Member

    HI Jeff and Alison,
    I think we’re all thinking along the same lines about what specialist centres would entail. We’re not thinking of anything that would take a long time to set up, are we? Basically, what I have in mind is the naming of a few specialist hospitals for cc. These would most likely already be major liver centres that do everything in terms of liver surgery, including transplant and that already do ERCP for stent placement and already have medical (and, hopefully clinical) oncologists in their multi disciplinary team and that already deal with a number of cc patients. They may already offer several of the possible cc treatments e.g. P.D.T. and so it would not be a major shift for them to expand, take on more cc patients and develop the expertise etc we have already discussed. Do you agree?
    Pauline

    #20029
    jeffg
    Member

    Alison… I think I understand what you are saying and as I said I agree that appropriate training of specialist. It’s the education and dissemination of world protocals and adopting them. As much as I think the specilized CC centers would be great I just believe the funding and building of centers would be short in coming versus designating and using more than likely already space at major hospitals. You know the biggest question will be ,you expect specific centers for this type cancer what about the other 400-500 (just a number) cancers and diseases. In my opinion they need to beef up each and every hospital with cancer departments/centers with appropriate equipment and trained speciaslist. That is what most of the major hospitals in the U.S. have done especially the teaching hospitals like Mayo. When I had my resection done it was through Mayo clinic in Rochecter but the operation was conducted at St. Mary’s Hospital 3 blocks away because they had the proper facility to do the operation. since then Mayo has did an addition and also opened another Mayo. Combine the two and walla a comphrehinsive on site cancer center for each hospital. Here in the U.S. most all your major hospitals have or are attaching specialized cancer centers and the specialist to go with them. Training ,information,specializing what we have and disseminating world renoun protocals and approval of them for use in the U.K. and current referral systems as needed for second and third opinons. I’m with you 100% betterment is needed now. But I think it should be approached with economics in mind as that is usually the brick wall you run in to . Money,Money,Money show them a way to do it but in them most economical as quickest way. I have been to five different major hospital in the last nine years and each one of them has built or just remodeled to exsisting space complete cancer centers. One to two years they were up and running. With brand new diagnostic equipment and specialist to go with it.
    God Bless,
    Jeff G.

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