Topic: Help for patients in the UK

Many of you read with interest the post from Prof. L.  I have been corresponding with him for the past few days. 

We would like to ask for your assistance, especially those of you who are residing in the U.K.

A proposal goes before the UK's Department of Health next week, asking that 2-4 National Centers for Cholangiocarcinoma care be set up in the UK.  This would mean streamlining many processes and having access to the best possible care available, correct equipment, facilities and trained personnel for Cholangio patients.

It is important that the Ministers of Health understand the difficulty of the current patient journey.  They also need to know that there would be public support and interest, particularly from families that have been touched by cholangiocarcinoma.

If this would be of interest to you and you can share some of the difficulties you have encountered getting good care, please send me a detailed e-mail which I will then forward to those who will be taking this proposal to UK government officials.

Any information you would like to share can be sent to stacie@cholangiocarcinoma.org

Thanks so much!

2 (edited by pauline Tue, 13 May 2008 08:17:40)

Re: Help for patients in the UK

Dear Stacie,
                 I did reply to Prof.L and my husband Anthony and I are very keen to see big improvements in care for patients with cc in the UK. A few key points might be worth stressing:
* patients are given different advice and treatment according to which area of the UK they live in e.g. some are told to have no treatments at all whereas others are advised to start chemo straight away. Some are monitored carefully with regular blood tests and scans, others are not.
* it is very difficult to find out where to go for treatment, for example, we have recently discovered that there is an NHS trial at Christie's and Hammersmith of gemcitabine/cisplatin but we didn't know about this when my husband needed it.
* many oncologists in the UK seem to be very anti radiation treatment and this means patients rarely get offered it even if they really want it. If you decide you want to try radiation because you have done your research, for example, on the work of the Mayo Clinic it is then extremely difficult to find a hospital willing to do it. They do exist but there is no information available about who does what and it may take you several months of stress to find it. We even heard of a young patient who travelled to Canada for radiation treatment because he couldn't find it here. (Our experiences in searching for different treatments and finding them actually led us to want to try to help others in our situation and this is why I first started posting on this site).
* as this is a rare cancer it feels as though patients and their families have to do a lot of the hard work themselves, both in terms of research and in finding treatments. When you do locate the treatment you want you can find yourself attending several different hospitals which is clearly not ideal as no one has a complete over view of the patient. What we feel we haven't had is some one saying " OK here is the plan - we'll try chemo and then next we'll try such and such " The patient perspective in our experience is one of having to be very pro active and having to push for every thing at every stage.
*Due to the rarity of the cancer and its poor outcomes for patients there is very limited research going on in the UK and therefore we seem to be very slow to be given access to new treatments compared, for example, to patients in the USA and other European countries.
           In conclusion it would seem that having specialist centres for cc would enable patients to 
1. Access a variety of relevant treatments more easily than is currently the case with a consultant who has a complete over view of their case.
2. Attend one hospital with consultants who would have ever increasing expertise and experience with this cancer.
3. Experience less stress and be able to concentrate more on getting better than on getting treatment .
It would enable doctors to
1. Establish a set of common procedures  for patients from which datailed individual patient plans can be developed.
2. Undertake some research into this cancer to further develop plans for patients.
3. Link up with the other centres to pool experiences and results.
4. Develop expertise in and an over view of what really works for patients with this cancer.

I hope this information is useful and Anthony and I are really looking forward to hearing about the outcome of this.

Thanks for taking this issue on board. I am very willing to be involved in whatever way I can in improving things for patients with this disease.
Pauline Roberts

3 (edited by JeffG Wed, 14 May 2008 19:07:08)

Re: Help for patients in the UK

Pauline .. Excellent input!  My wife was born and raise in England and I lived there almost nine years.  You did't miss abeat in reference to your post to Professor Lodges.  NHS has been running behind times in the past but have really been making some great strides in the pass few years with cancer and as well as other diseases.  Now if they can keep moving in the direction Professor Lodge is pushing for would be a major accomplishment.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Help for patients in the UK

My only concern is from my experience living in Glasgow, is that people in England believe everyone in Britain lives in England and that everything needs to be centered in England. We have members of this board from Scotland and I am sure that people in Northern Ireland also have cc. I am concerned that Professor Lodge mentioned 2 centers, one in London and one in Leeds. What about others? The last thing people need to do when facing a terrible illness is have to travel 6 hours plus. Perhaps national guidelines would be a better first start so all doctors and patients will know what is happening. Having national centers are great if it means they are truly national, not just English so that everyone can benefit.

Goodness I sound like a Scottish Nationalist! smile

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

5 (edited by pauline Fri, 16 May 2008 07:21:36)

Re: Help for patients in the UK

I notice that Stacie mentioned 2-4 centres which could potentially resolve the issue of a centre in Scotland. I think the centres are a good idea though, whatever the number, because the expertise, research, and protocols generated should benefit all cc patients.
It would seem to me that those patients who live at some distance from a centre but want to access the expertise there could travel to the centre for an initial assessment to agree a plan for their treatment. They could then have that treatment at their local hospital and just return to the centre for key scan results, for example, and further discussion re next steps. My husband ,Anthony, certainly feels he would be prepared to do this in order to get the best diagnosis and treatment plan.
I also think that those patients who don't wish to travel, or are unable to, must still be able to be treated at their current hospital. Hopefully, the guidelines that would be developed by the centres would be used by all hospitals and would, therefore, improve the experience of all cc patients whether they attend one of the centres or not. What do you think?

6 (edited by alison Fri, 16 May 2008 15:43:19)

Re: Help for patients in the UK

pauline
I agree with you.National centres are vital .Guidelines  and treatment options could be set by them and could be acessed by all hospitals . People then have the choice of travelling to the centres or getting treatment  locally .
We live in London and travelled to Leeds to have treatment for my husband under Prof Lodge. He was prepared to travel almost any where in the UK for positive treatment as our local hospital could offer no hopefull treatment.
Alison

Re: Help for patients in the UK

Alison,
        I'm glad you agree re the national centres. The experiences of cc patients to date is pretty poor here isn't it and so dependent upon where you live . We live in London as well and almost travelled to the Mayo Clinic (despite the costs) because of the frustration of trying to find anything other than chemo here.
        A year later and we have managed to access different treatments and have built up, with a lot of hard work, a fair bit of information about where different things are done but it really was a struggle for many months - a struggle we could have well done without - and still no one seems to have a complete over view of this disease.
       I think this news that the Dept of Health is looking into the establishment of centres is a potential big step forward and we should try to keep the pressure on to ensure that it happens and quickly. I think it would be really good if all the UK patients on this site added their thoughts and experiences - there seem to be quite a lot of us and this seems to be the only place that we get to communicate,doesn't it? Another advantage of centres, it occurs to me, is that patients and their families could meet each other and share experiences if they so wish. It can seem a very lonely disease,can't it?
Pauline

Re: Help for patients in the UK

Pauline... Additional Cancer Treatment Centers  could easily be additions to other major hosptials throughout the United Kingdom as cost savings. It would not have to be cholangiocarcinoma specific centers but definitely be equpiped with the proper testing equipment for all cancers, staffed with well trained specialists, oncologist,surgeons, and nurses. I'm basically saying these centers need to be provided proper and updated current treatments available and NHS have all specialist educated enough to know when to refer and/or how to refer patients with cholangiocarcinoma for surgery and treatments to specialist.  More specialist need to be educated specifically with this disease and stop thinkin in the ole brown shoe days/ lets get more modernized with with our approach and thinking as Professor Lodge is.  One or two surgeons can't provide proper care to all.  Maybe have some surgeons do internships with Professor Lodge or other renowned surgeons to get up to speed.  Knowledge and communications through the medical profeesion needs to step up and NHS or governing body needs to see this is done effective and quickly. They could start doing this tomorrow by way of electronic emailing / facsimiles/ typed and mailed  directives highlightening the level of which NHS doctors are to respond to cholangiocarcinoma.  Well I spoke my mind again.  More equipment and more specialist with additions to some current major hospitals throughout the UK would be more effective and cost beneficial than cholangiocarnoma specific centers and allow expansion quicker throughout UK not just England. Interships with the specialist. There I 'm done.
Wish you a happy day!
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Help for patients in the UK

Hi Jeff, are you on steroids?  JUST KIDDING.  You gave a lot of good information.  Hope you're having a great day!

Carol

10 (edited by alison Sun, 18 May 2008 06:58:14)

Re: Help for patients in the UK

Jeff
i take your point that 2 national centres and 2 spcecialists would not be able treat everyone , The centres could be used as a resource for other hospitals for  information and advice. If people wanted to and were able to attend one of the centres then great , but if not ,specialist help and advice could be given to the treating Dr . At the very least all cancer units should know how to acess the information
we live in London and Jon was treated by one of the best cancer hospitals in Europe and they had no usefull treatment options and were also not really interested in any of the research that we found on the Net
Jon was operated on by Prof Lodge after us finding out about him and asking for a referral.The Dr Jon was under had not heard of the Prof and his work.
I feel that national centres that are well known would help this process and speed up usefull treatment . It will be too late for Jon as he died in Dec06, but I really hope they help other people
I Know that in the UK treatment options are set by NICE guidelines and specialist centres will also help to develop and set  the latest treatment options hopefully based on worldwide research
Alison

11 (edited by JeffG Sun, 18 May 2008 12:05:15)

Re: Help for patients in the UK

Carol ... How did you guess?  I just had chemo Friday morning so yes I'm pumped with steroids and benadryl but am starting to slow down today. Up and Down and all around,were I stop I hope my feet hit ground.  (not my head). Ha!  I,m having a Big Mac Attack!
Tootles!
Jeff G.
P.S.  Changed my mind KFC original.

Take it to the Limit,One More Time! (Eagles)

12 (edited by JeffG Sun, 18 May 2008 12:01:46)

Re: Help for patients in the UK

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.

Take it to the Limit,One More Time! (Eagles)

Re: Help for patients in the UK

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

Re: Help for patients in the UK

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.

Take it to the Limit,One More Time! (Eagles)

15 (edited by startreknewf Sun, 20 Jul 2008 11:46:42)

Re: Help for patients in the UK

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.

Re: Help for patients in the UK

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.

Re: Help for patients in the UK

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)

Re: Help for patients in the UK

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

Re: Help for patients in the UK

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.

Re: Help for patients in the UK

Pauline,

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

Stacie

Re: Help for patients in the UK

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.

Re: Help for patients in the UK

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

Re: Help for patients in the UK

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

Re: Help for patients in the UK

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

Re: Help for patients in the UK

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

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.