I notice that people sometimes suggest patients try to get a referral to a specific doctor in a specific hospital which will offer treatments which are achieving great success, eg at the Royal Marsden.
I'm a bit confused (what's new!!) and hope someone can answer this for me.
If a specific doctor at a specific hospital has had great success with a particular regime of treatment - why then don't all hospital cancer departments give this regime? Why would the, in some cases, very ill patient have to travel so far to try to get this treatment.
I would have thought these treatments and results would be written up in reports and be then recommended that they should be used throughout the whole country.
Can anyone help me with this?
Cheers Cathy xx
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Hi Cathy,
I agree they should all have the same standard and treatment I don't get it either...the only thing is I would think that some hospitals are a research centre as well..but I don't know...some people get second opinions I suppose this is the case..it was mentioned recently that Prof Ledderman from Leeds is good...but I do think that any research done and findings should be passed on...If it was down to us..that really makes it hard as it is very tiring to have to do our own research and often people are no better off..so thanks for raising this question...I would like the answer to this as well best wishes love x G x
Thanks for your answer. I've been thinking about this for a long time and just wondered if I was missing something! If I understand it correctly, if seems to be something then which is very skewed in favour of people who have access to the net, and the intelligence to carry out research, not to mention the money which would be needed to travel around the country. Surely under the NHS umbrella this shouldn't be the case.
I know Lizzie travelled and tried a few different people...Oncologist that we're renowned in their work..but the result at the end of the day was the same..I don't know the answer when my oncologist was dragging his heels with me...my family wanted me to go elsewhere...but even the thought of it was exhausting...I don't know the answer to this... maybe there is someone that do know..I hope so...but to me it is like chasing rainbows..ie. when do you stop? Like I said thanks for asking this one though love x G x
You're right to query why there is different treatment in different hospitals and in different parts of the country. I live in Wales. There are two major policy areas that I feel should not be governed by a postcode lottery and these are health and education. For some reason they are the two major policy areas for which the Welsh Assembly has control and we're under-performing in both compared to England.
It does seem to depend on your Health Authority, whether you have access to private care, the region you live, and also whether your hospital is part of a university medical school. If so it may have a centre of cancer research excellence and strong links to research centress across the world. If you're lucky the hospital may be researching an aspect of the particular cancer diagnosis you have. If not you may need to travel to a centre of excellence that suits your specific condition. The difference between the treatments offered by research hospitals is that they are experimental and there is no empirical evidence that what you are prescribed will do any good at all. In fact there's no way of knowing whether you have been given a placebo as part of the control group so in fact are not getting any additional treatment at all. Just as soon as there is empirical evidence that a treatment does have a positive effect on a significant number of subjects it goes through a process of clinical trials that can take many years. Finally it is presented to NICE who are responsible for agreeing to it being funded by the NHS and if all goes well it should become available in all hospitals. I'm sure this is an over-simplication of the case and hopefully someone will add to this account to piece all the bits together but it does in a raw way seem to explain why there are differences in treatments and opinions at different hospitals.
What has become very clear is that in these cash-strapped days is that if you don't ask the NHS doesn't necessarily offer. One of the great benefits of belonging to various Ovarian Cancer sites is that they give details of current research, drugs and treatments - and members of the site also blog about alternative therapies which may not generally be administered by the NHS. I've had good report of my local hospital in Cardiff that if patients hear of a treatment that has had good trials they will do its best to get hold of it and give it a go.
Unfortunately it's not only a postcode lottery, it's an intellectual lottery as well. It pays to be well-informed and articulate. I think it's important for patients to have an opinion as well as the experts and everyone's opinion counts - not just the clever ones. We should all have a voice and an opinion on this.
Thanks so much for your great reply. Would you mind if I picked your brains a wee bit more just so I can get things clear in my mind.
Am I correct in thinking that people are travelling to other hospitals for trials or treatments which have shown success or promise but have not yet actually been approved by NICE and if and when that happens then it will be (or should be!) available across all NHS hospitals? Also that this takes several years to be implemented?
If this is right, I think this is where I've been having the problem. I couldn't understand why some hospitals were offering successful treatments which should surely be available to all.
I'm very lucky in that my own hospital is the Western General in Edinburgh which is a research and treatment centre and I believe is considered a centre of excellence. I know they also do a lot of trials. And as it's only 10 minutes drive from my house, that's an added bonus considering how many times I've been there in the last two and a half years!
It was also where the first Maggie's Centre was started in 1996.
Dear Cathy I think you've got it. Luckily it seems you're in a good place in Edinburgh. It would be an interesting comparison - edinburgh and Cardiff.
The problem with Ovarian Cancer is that it is still in the research domaine. Nobody has got a grip of what it is or how to secure a cure so we're part of the research. NICE recommends Carbo-platin and Taxol which generally does the trick in the short-term but even now nobody knows how to calculate the exact dose for any particular patient or a particular tumour. Offering ourselves to research projects is something we can do for future generations.
For now nobody can tell how this disease will progress or how it will affect individuals. It can be a tough call for ourselves and our nearest and dearest to cope with that.
I feel really lucky in that I have complete faith in my onologist. I feel she gives me 100% and is always there for me. So I'll just carry on and take her advice as she's kept me alive so far. It must be very difficult for some of the younger women, especially the ones with young families who probably feel anything is worth a try but like you I don't think I'd be able to go travelling around, in fact I wouldn't even know where to start as I have no medical knowledge whatsoever.
Like you my hospital is a centre of excellence as well....and do a lot of research as it is a university hospital as well...my oncologist is very senior..(in his sixties) and have had a lot of papers published..and has worked in America...I think he keeps up to date with treatment etc. oh and he is Scottish haha.. he told me they have a very strict criteria for people to go on a trial...and I was out of time for a trial..I wasn't too bothered as trials benefit future people and not necessarily the person that is on the trial.... as sometimes they give a placebo along with standard treatment..and it isn't until they have finished the trials and have come up with good results that they would then become more widely available...besides I obtained remission on standard treatment so I was glad that I stayed put...my oncologist is good at speaking in seminars (so I am told) but not good with people face to face....no people skills.....he doesn't spend much time with patients.... and is not much good in explaining things i think he's in charge and that's it..... but I don't mind as long as he knows what he is doing...and gets results..best wishes love x G x
Very good question, the trouble is that even if you do go to a hospital that is also a research centre, which mine is, then it doesn't mean that the treatment they choose to give you will work. I was given a regime of chemo only used at my hospital, it had been researched there and my consultant was part of the team, it was a horrible treatment, made me feel really I'll and damaged my kidneys, it was supposed to be very effective for resistant cancers like mine but mine did not respond at all and just got bigger while on this treatment.
The nature of OC the various different types and different peoples responses make it very difficult to treat in many cases, which may explain why they try so many different things, because none of them are guaranteed to work.
When one gets to the stage of looking for alternatives because other things haven't worked its very difficult to have the energy to travel all over the country to try other things which may not work either.
Sorry that all sounds rather negative but that's because of the experiences I have had with my different treatments.
You are right..by the time people get to that stage...sadly they can be very worn down in my own experience I try to keep up to date with what my oncologist should be doing next..and if I think it is not right I challenge it..but I wouldn't like to be up and down the country looking for other treatments.. but would do if that's what it takes..at the moment I feel I am in the right place..and I am grateful for that love x G x
I think we all need to find out as much as possible about our individual diseases and be informed about trials and different treatments. No one is going to care about your health as much as you. They say that great improvements have been brought about in breast cancer treatment by younger women asking and finding out about the disease yet one of the reasons ovarian cancer hasn't seen improvements in rates of survival etc is that in general it effects older women who are more inclined to just trust what their doctor says. I'm sure this is over simplified somewhat but I'm sure it's true what someone else said above, that if you don't ask you don't necessarily get!
I've been to The Royal Marsden for a second opinion, done a drugs trail and just been for major surgery 200 miles from home (although I was referred for this by the suggestion of my local surgeon). Whether any of this will prove to help me live longer-who knows? But at 34 with two young daughters I need to know I've done everything in power to be around as long as possible for them.
Drug trials do get rolled out across the country so you often don't need to travel for those and the one I did offered the standard NHS treatment and a new chemo regime so you don't always run the risk of a placebo. Surgery is more difficult to roll out across the country as you need specialist teams and facilities in place. They surgery I had is only done in two places in the UK.
I agree we need to research our own disease as much as we can...I feel no one will look out for myself as much as I will...I have a very enquiring mind..and when I was first diagnosed I read incessantly about OC to find answers......even my doctor and the Macmillan nurse said I probably know more than them...but I am one of those "older women"..the problem is when you have an "older oncologist" that belongs to the old school of thought and have no intention of treating "older women" with more than two brain cells..(or maybe he is the same with "younger women" ) then you meet up with problems..the first chance he has..is exit left leaving the tissue nurse to it (not that I cry) but isn't that what they are there for? ...I find it so frustrating when some women young or old do not want to know..and on this journey I have been on.. ...this attitude of burying ones head in the sand stretches across all ages...
Hey it's good to hear from you again. I've been wondering how you're feeling after such a massive op. My friend who had the Sugarbaker operation in January was in quite a lot of discomfort at first but is now running around 6 months later pleased as punch because they managed to remove all the tumours along with a lot of giblets. Her story is testament to why we should be asking questions and being informed - she had been given months to live by the local oncologist, whom she consulted privately by the way, and who had dismissed the Sugarbaker technique as a lot of mumbo jumbo not worth trying. It was due to her persistence that she went along the Sugarbaker route but she very nearly didn't try it as she didn't want to upset the local hospital. Basingstoke took a look at the scans and spotted her specific and rare cancer straight away and 6 months after the op she's been given every hope that it won't come back.
Are you feeling more comfortable now? I hope all is going well for you. I've been thinking of you. Take care. xxx love Annie
Thanks everyone for your replies, they've answered my questions and cleared everything up for me. Yes, I agree that it's a great thing that women are questioning and driving things forward and and can totally understand why, as this is a dreadful disease and when you see the strides that have been made in dealing with breast cancer, hopefully one day OC will be in the same position.
I'm full of admiration for you ladies who have learned so much about it all and are always here to answer, comfort and help everyone with any questions that arise.
We are constantly told that the NHS is the NATIONAL Health Service and yet treatment and access to drugs varies wildly from region .............and yet we all will have paid the same rate of National Insurance and the same taxes . I think this is a major issue as is the undeniable fact that older people who maybe do not have access to internet and who have less opportunity to travel are denied access by virtue of the fact of where they live to more uptodate treatment .
Absolutely agree with you Suzy. My brother had a massive stroke when he was on holiday in the US two years ago. He was treated privately over there for about 2 months and was expected to make a reasonable recovery by having a drain fitted to avoid brain damage and by receiving extensive physiotherapy. The provision there was impeccable. He was flown back to the UK for the operation.
He arrived at - let's name and shame - UCL's National Hospital for Neurology and Neurosurgery - a centre of excellence - where he survived contracting two hospital mega-bugs but unfortunately did not survive their lack of care. My brother is now so severely brain-damaged he can't talk, walk or comprehend much of what goes on.
I'm so angry. You're right it should be a NATIONAL service and one that treats people equally irrespective of age, gender, socio-economic group, place of domicile, etc.
I think it needs two things. Better management and more funds. Whether that's from private insurance on the part of individual users, or higher levels of tax and national insurance for everyone, is a debate that should be taking place. The focus on the NHS at the opening of the Olympic Games was thought-provoking. It's such a shame that our national institution seems to have fallen into disrepair by comparison to other countries.
I think it's time to lobby our MPs - or in the case of Wales our MPs and AMs.
So sorry to hear about your brother. There's nothing I can say, except .....disgraceful, and that's not strong enough. I agree about lobbying wherever we can. Go girl! I'll get onto my MP again too!
Hi Whippet, your friends wonderful story seems quite common in the PMP cancer world. I've heard of many people told they have months to live and need palliative care only to research themselves on the web and realise this technique is out there and can potentially rid them of cancer forever. I am doing OK, it's going to be a long haul. Appetite is still very poor and I am still very tired.
Yes I do agree it is sad that not everyone gets the same access the same healthcare nationwide but remember we do all the right to ask for a second opinion with any doctor in any hospital in the country. A GP can organise this for you.
Sorry if I have offended anyone by generalising the attitudes of older people towards healthcare. I do realise it is a generalisation and there are many exceptions in all age ranges.
I am not offended...just pointing out the fact that this can be a problem with all ages..also because of the complexity of OC.. this is the main reasons why they have not advanced that much with treatment..breast cancer has a lot of money poured into research... because more people get breast cancer and it also includes men...which of course OC doesn't ...other complications are the fact that OC has at least thirty different types of cancer..younger women often have a different type to older women as well... it really is complex...I had a very bad prognosis for my recurrence and was given palliative chemotherapy to attempt to shrink the tumour with very little hope of remission...but against all odds my tumour has gone..I was glad that I stayed with my gut feeling..and went along with my oncologist's line of treatment even though I questioned it and looked into it as well..it seems to me they give the worse scenario but don't know themselves how things are going to turn out..but I for one am not prepared to accept things without question...also when they do research they do it across all age groups...this is why they asked me to help with their research on the side affects of taxol...love x G x
So pleased to hear that your tumour responded to the chemotherapy. I do agree with on the oc issues, it's such a complex disease with so many sub types....sometimes I wish I could just accept whatever my doctors tell me it would make for a less stressful time in some ways.
Yes! I do know what you mean...it is sad that we have to stay ahead of the game...
I don't even know if it is a post code lottery or it is just different medical people having a different opinion...which is very worrying...I know when I had a recurrence I had others saying it couldn't be as the oncologist hadn't picked it up...well he wouldn't give me a blood test or scan..and finally when he did concede it was back.. he said it doesn't usually turn up there..and now it's too late to do anything..my GP sent me for a blood test... but he still ignored it.. and then she sent me for another one and she was furious that he had ignored the signs..but I am here to tell the tale
but we do need to be very aware of our own bodies and fight our corner...
I am amazed at what you've been through... you have nothing but my admiration..
have you got your children back home now ? I wish you all the very best love x G x
Wow! This is a can of worms! Just tried reading all these ideas and all the different thoughts. The only thing I can add, is ....it's no wonder we are confused! I have been told in various NHS meetings where I sit as a patient rep on behalf of Ovacome, that, if you're on a trial, they cannot put the standard as lower than you would get in the normal manner of treatment, so it's the standard treatment currently used, or the new one that's being researched. Also the new treatments have been fairly extensively tested by as many methods as poss before putting them into a trial. Also, I have been told there are as many as 60 different types of OC so it's very difficult in some cases, to hit the right one first time sometimes. What I think is true, is that faith in your oncologist, a hospital having a centre of excellence status or research facility and the ability of us all to ask for a second opinion is important. I agree with Annie and Gwyn, it's awful that at a time when we are feeling vulnerable and ill, we have to do lots of fighting and medical research on our own behalf. Ovacome is helpful too, so that's always reassuring. There is info on the website about some of this.
i am so grateful and pleased that i finally found this site, i have stumbled from one family crisis to another for a few years now, and when i was diagnosed i dont think i could cope with it and ..... i burried my head in the sand.... i wish i had found this site before, so that i could have maybe prevented it coming back..... i just went along with what i was told and asked nothing... now reading what u ladies say and what i have picked up, this next meeting with my oncologist is going to be much longer... u are all right, it shouldnt be a postcode lottery... and when we are at our worst both mentally and physically why should we have to travel to obtain treatment when... the health service should be there providing the best, not us looking around trying to find it... or other methods of treatment...
i admire u ladies for your determination and guts... researching and questioning this... u r making the future better for the future generations..
Take my advice and write all the questions you have down, as when you are with your oncologist you think you will remember but you forget, even if you don't get to ask all of them, sometimes when you ask questions they answer the next question before you've asked it, but it is better that way, love x G x
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