I think it's not unkind to say that healthcare is a bit of a lottery in the UK. It's particularly the case with ovarian cancer which is a rare cancer that is frequently diagnosed too late to hope for a cure. We find ourselves outside the body of known science and this makes for an uneven playing field.
Once we're diagnosed with an advanced cancer the standard treatment is a radical hysterectomy taking out as much of the disease as possible. Given the medical profession have no idea which treatment will work on any one of us they opt for the one that's generally been seen to be effective in the majority of patients. The NICE gold standard is Carbo-Platin and Paclitaxol given intravenously every 3 weeks. It seems reasonable to offer this to each one of us so long as our kidney function is robust. In that sense we have parity of treatment and resources.
So far so good, but then you start to notice that the system is a lottery. If you're lucky enough to be near a centre of excellence that actively involves itself in ovarian cancer trials, and you're invited to take part, then you're in the fortunate position to choose whether or not to participate. That's patient choice, but not all of us have that choice.
This is where it all breaks down. Small centres might not attract clinical trials because there would not be a large enough sample group, because they are strapped for cash, or simply because there's no one with capacity to take on additional work at the moment the clinical trial goes online. This is less likely to happen in the major centres and they therefore build up more expertise.
It's a frustrating experience for those of us who are unable to access trials. If you look at hospitals across the UK the average survival rates are significantly better in some centres than others. Making an uninformed guess I'd imagine that's because in any clinical trial, even if it's not significant, there will be some patients whose cancer responds well to the novel treatment or pioneering surgical techniques. It could also be said that the larger centres will attract the best clinicians and surgeons and because they are specialist centres staff gain more experience and expertise in a narrow field. This body of knowledge will hopefully get us closer to a cure for us all. It seems unfair but logical.
I don't think we should just accept we get treated in our nearest centre and what that centre offers is necessarily the best. A clinician isn't going to offer a patient a breakthrough drug or a surgical procedure if it isn't offered in their health board area. Equally they may not be forward in telling us about trials that take place 25 miles away because it makes life difficult for everyone and particularly our overworked oncology staff. They have an obligation to manage their patients' expectations and there may be a tendency to downplay exactly what is on offer 'out there'.
So often I read that women ask for a second opinion at a major cancer centre when all local resources have been exhausted. As our disease progresses and we have more lines of chemotherapy we're less likely to be eligible for trials and radical treatments. To my mind it's better to ask for a second opinion early on in the disease. Once the disease progresses it seems to me the best centres such as the RM or the Christie offer no more options than the most remote and modest cancer units. You could say we all start and end our cancer journey equitably.
I rather feel that if a patient is interested in taking part in trials they need to play their part in finding out where the centres of excellence are, where the trials are, and what procedures are available. If a patient feels they would be better served elsewhere then it needs to be discussed. Of course there are many things to consider. Not everyone has the ability or the volition to relocate in order to increase their exposure to a range of procedures. I'm not so sure it's impossible but there are certainly challenges. What happens, for instance, if you're on a trial and have side-effects or get an infection? Where do you go for help if you're 2 or 3 hours' journey from the prescribing hospital? Where do you live if you want treatment hundreds of miles from home? Who takes on your family responsibilities? What costs would be involved in relocating?
It does indeed seem a bit of a lottery. I spent a half hour with the Minister of Health for Wales and I think he would agree that there are huge flaws in the system. A cancer centre may be a centre of excellence but not your type of cancer. I begin to understand the logic of having centres of excellence but recognising that in the smaller centres there will be fewer trials so that many patients will be offered only the standard 'known' routes. I don't think we're going to resolve the political dilema in the short-term. All we can do, if we object to what we have now, is to do what is necessary to change our own personal cancer experience.
These private thoughts result from a number of discussions with ovarian cancer charities, politicians, oncologists and other women with ovarian cancer. I share them with you as it might help explain in some ways some aspects of why we have a postcode lottery in the UK in the treatment of ovarian cancer and why it is likely to stay that way.
xx Annie
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Even if you are already at a centre that has trials going on, you might not go on one, when I was first diagnosed (having done the research) I enquired about a trial and was told that I have to be invited onto a trial (not volunteer) then on my recurrence when I was now "conditioned" into not asking..the oncologist volunteered the information saying that I was out of time... which then made me feel that I had missed out (again) so my opinion is that even if you are in the right postcode lottery... they keep changing the goal posts...I feel like a person running a race but each time I get to the finishing post... it gets moved further out of reach.... it really does make you feel what's the point...I think it must be an excercise in endurance.
I agree with everything you say Gwyn. Oncologists sometimes tell us what they want to tell us. It means you have to look up the trials that interest you and all their conditions, and you're right it's the oncologist's call as to whether you're 'invited'.
My oncologist told me the Desktop trial was patients who had 2 years' remission after first line chemotherapy. It's for patients who have six months and who haven't had bevacizumab so I thought that's ideal for me! Not that it's available in Cardiff yet. They're still scratching their heads and thinking about it. It's available in Bristol which is an easy trip for me to have surgery and follow-up chemotherapy but it's additional work to the treating oncologist if their patient is involved in another trial and the treating oncologist won't benefit from the additional funding/staff associated with the trial.
I have no doubt you did your research and gave it your best Gwyn. They should have put you on a trial. You're indestructible and you would have given them the optimum results.
What trial did you ask about?
I'm glad you liked the blog. I thought I ought to tie up the ends after weeks of ranting about unfair treatment across the UK. I kind of get it now but don't accept I have to put up with it myself. I've started politicians thinking in Cardiff about the way cancer drugs are funded but not in time to make any difference to me. If you can't change things by jumping over the fence you have to accept it but find another way round, through or under it, or just bash it down! lol xxx
Annie do you know what? that was nearly five years ago... and I can't even remember now...I remember I asked a lady oncologist at the time though (not Mr Colourful) and then the second time was two years ago on a recurrance that he told me I was six months too late...which then made me feel as though I was missing out...(but all water under the bridge now) and more recently I have another battle on my hands (that I won't go into just yet) but to be honest I am tired of fighting my corner... for what seems to me should be standard care and treatment ...I dread to think if I have to fight for anything more...this disease truly is a nightmare... all because I am living out of the boundary of the hospital trust and I seem to be stuck between two different health trusts.
I hope you're OK Gwyn. I'm a bit worried to hear you're embattled and tired of the fight. Let's hope it's something that can be resolved. If you want a chat any time please give me a shout or should I ring?
I may have given the wrong impression I am not giving up the fight for cancer, but the fact that not only is my ononcologist very "removed" but a CNS that seems to be as well .....one minute she says that she is my first point of contact i.e. the liaison between myself and my oncologist and the next minute she isn't.....the one and only time in five years I contact her and then she drops a bombshell that it isn't her job, then conceded (even though it isn't her job) she'd do her best to help, (as if it's a massive favour) a few days later she rings me to tell me that she is my CNS, my head is in a spin with the way they feel it is ok not to consider my feelings.....if I was a person with less stamina I am sure I would have gone under by now, regardless of what Prof McNiesh said about how important the role of a CNS is I would argue that it depends on if they are there to help or not...I would suggest that they are a cheaper alternative to a doctor let alone a consultant and they are merely there to be a barrier between the patient and Oncologist and to stand at the ready with a box of tissues if needed...(I have my family to do that) I don't want or need someone to pat me on the back and say "there, there" with as much concern as they can muster. we are back to the old adage "they have not been there"
Thanks for your concern though love x G x
Really coherent Annie. The system does seem stacked -- just when we are at our lowest ebb, when we have to be very on the ball to make the smartest choices, avoid the blind alleys and avoid missing opportunities, is just when things are made most difficult for us. Small wonder we do as we are told. How would we navigate else? It should be the other way around: made blissfully easy, all explained clearly, with a world of all the best choices laid out in front of us, at first diagnosis and at every step. Instead many get a partial set of choices, badly communicated, and missing some of the most hopeful pharmaceutical routes to goal. Shameful. Time we changed it.
It's interesting to step back and look at the treatment for ovarian cancer. To be fair I think we all have the same access to surgery and chemotherapy drugs at the beginning and the end of the journey.
I did look back with hindsight to early days and realised that had I lived in an area with a high level of specialism in ovarian cancer my consultant gynae-surgeon may well have been much more radical when the debulking procedure was carried out. In fact my surgeon told me that she had removed one lymph node and wanted to take more out but her supervisor had said not to.
I've heard surgery is highly developed in some hospitals. In the last two years it has been said by eminent oncologists that surgeons trained in Germany have the ability to take out more than the more cautious UK-trained surgeons. On the other hand I think it was Professor McLeish who told us there had been some sort of surgery turf war going on in the US where patients were put at risk because surgeons were competing with one another to take out more than the next. These snippets of information are backed up here by circumstantial evidence here where nursing staff in hospitals have told a patient a new surgeon trained in the Netherlands is far more radical than the established surgical team in South-East Wales.
There are clearly new techniques developing and they probably developed in the largest centres and rolling out into the smaller centres. This is not 'unfair', it's just new techniques have to start somewhere and it's obvious they will start in the large and wealthier centres which are likely to be in London and other major cities.
So I look back and I think the start of my treatment might have been more radical and given me a better chance. Having said that I didn't have a choice because my treatment was done as a matter of urgency. It was done promptly, efficiently and by highly qualified and professional staff so I feel I've had an excellence of care. They just might not have been at the leading edge which would have given me treatment over and above the standard treatment.
Professor Hani Gabra told a group of us that surgery was our biggest hope. It's good that the world of surgery moves fast and there are already trials like Desktop that are rolling out new surgical procedures across the UK - but again in the larger regional hospitals. Desktop hasn't come to my centre yet though they are in the process of preparing for it which I'd imagine means training up surgeons in the latest research techniques.
So in this respect the start of my journey was fair and reasonable by comparison to most patients in the UK but uneven compared to the lucky ones who found themselves at the leading-edge of surgical techniques in major research centres. I don't think that's anything to complain about. It's just not practical to think new techniques can roll out simultaneously across every centre the UK.
There is justice in this. What we can also aim for is to put ourselves in a position to take part in trials which are the exception and that is what the larger or more specialist centres offer. They're not guaranteed to work or to extend our lives because they're just trials but the appeal is that the patient might be the lucky one for whom the new theory or surgical technique works.
At a certain point in my journey I must return to the standard treatments. It seems there are no massive breakthroughs in research for disease that is very advanced. That makes sense because they need to solve the problems associated with early disease which is most responsive to treatment. Once the riddle has been solved it the remedy will be rolled out to the most difficult cases to treat and even to late-stage cancer. There are other advantages about being treated in a small centre for end of life care. Mine will be on the doorstep, convenient, friendly and intimate. In that sense you could say I'll get a better quality of care at this point than in the larger leading-edge centres.
I wonder if this makes sense? It does to my mind even explain why exceptional treatment is available in some places but not everywhere. Perhaps I didn't explain this coherently in my blog.
Love xxxxx Annie
Although grateful that Sandra is being treated at the Christie, there is no pattern to the choice of treatment being applied. It most cases the first line is deemed carbo combined with taxol every 3 weeks and yet some are placed on a trial of weekly taxol with carbo administered every third week. Results so far seem to show this has a better response rate. Then you find that the 2nd line treatment varies even more widely between us at this one of the places of excellence. Is it due to good clinical reason or just a stab in the dark as i,m sure they are no better at judging the outcome of each line of treatment than any other centre as we are all so differant in the way each one if us reponds. For example if you take the rich and famous who can choose wherever they receive their treatment I don,t think they fare any better than the rest of us. Its like saying that the rich and famous who can not only choose which centre to take treatment, they can also choose which country and yet still some succumb to this terrible disease be it ovarian, breast or whatever. In other words there is not a place in the world that can guarantee a result.
Clearly it seems funding in the UK can affect the choices between NHS trusts and NICE decides if a new drug is accepted or not, I don,t see a magic potion yet available that can guarantee a result, even Avastin has limitations. Saying this all regions including divolved should have the same choices of treatment.
However, no matter where we are or who is treating us we can always look back in hindsight and say what if we had tried this or that or gone there or there. We shall never know. Love to all Paul xx
You have hit the nail on the head when you say there is no magic potion. Women with advanced ovarian cancer are outside medical knowledge and there's no cure. Bevacizumab is the first breakthrough in 15 years but it delays relapse rather than prevents it. It's also horrendously expensive so it's not a long-term solution but important to conduct trials to see the variation in its effect on different women. I'm sure the principle of restricting the blood supply to the tumours is one that will be explored further and will bring forward new ideas and new research paths.
I'd imagine what you're experiencing at the Christie is a breadth of new techniques so that's an opportunity. My centre has now joined the trial to administer Taxol on a weekly basis and I would have been happy to do this but my relapse didn't coincide with the window of opportunity and the trial has now closed. I am also interested in Desktop but that hasn't yet been set up in Cardiff so I'll miss out on that too. What you're seeing at the Christie, and indeed at the Royal Marsden is no doubt a whole range of trials operating simultaneously which is rather an exciting situation.
There's always a glimmer of hope that a new trial or procedure might be the one that will sort everything out but it would be folly to place too much hope on this. I have no doubt they're all have a rigorous scientific basis.
Hopefully my blog gives some explanation as to why treatments aren't available consistently across the devolved administrations. Neither are they available consistently across all areas of England. In the UK our contribution to healthcare is considerably less than the cost of medical services elsewhere in the western states of Europe, US and Canada. We've all have the option of private health care which gives more choice and luxury. It gives me heart that the UK is working on such a tight budget but we're still on a par with leading-edge research across the world, and for all the spend in other countries they are no nearer than us to solving the riddle.
The only counsel I would give is never to look back and have regrets. We do what we believe to be best at the time. We can only go forward from here.
Best wishes
Annie
Thanks Annie
All very thought provoking. I have to say I am quite apprehensive about returning to the UK in the autumn. The whole system and way patients seem to be underinvolved in making decisions about their own treatment seems not good to me.
A small point on the "overworked oncology staff": My oncologist and onc. surgeon work a 6 day week here, as do the nursing staff. One can have chemo on a Saturday morning - very helpful for people who work. In hospital I was visited twice daily by my onc. and onc. surgeon - only once on Sundays. There is no concept of junior doctors as part of a team. There is an incredible work ethic here which makes life as a patient much, much easier. Health professionals in the UK may be all sorts of things, but having seen what happens here, I am not too sure that hard working is one of them!
Monique, Ouch! I haven't been to Singapore but in the UK I do remember the era when junior doctors would fall asleep over patients due to having worked 100 hour weeks which put patients lives at risk. This was considered to be unacceptable and was amended but long hours under stressful conditions are still worked by doctors in the UK. One of the main concerns in the recruitment of medical students to university is that they understand the pressure and stress levels associated with this particular vocation.
I'd imagine you pay for what you get. Here in the UK we have a relatively low tax/NI contribution by comparison to many European countries. There is no obligation to invest in private health care to top up the national health which is obligatory in many other countries. There is a funding issue in the UK but I maintain we still have some of the best scientists and researchers in the world and even though you claim we don't compare well there has been no clear breakthrough to discover the cure for ovarian cancer anywhere else. At best it is held at bay worldwide.
This is why I consider the situation is unlikely to change despite any amount of lobbying. We have a society here that strives to give everyone a chance of a decent living. Balance the cost of this to the need to keep a capitalist economy buoyant in a double recession. If we were to increase tax to 50%, as occurs in some countries, we reduce people's spending power and this impacts on GDP and would bankrupt a large swathe of the population. From what I've understood in recent discussions it's not a simple step of increasing the funding for health. You'd have to take it from other areas of public responsibility such as law and order, education, transport, etc.
I don't blame you being worried about returning to the UK because from what you say the treatment you have received in Singapore has been excellent and you might not have access to the drugs or care unless you're in the fortunate position of having private health care. However, each one of us could have taken the private insurance route but even that route anywhere in the world does not guarantee a cure.
It's not all bad in the UK - though it is pouring with rain today!
Peter Andre brought his brother back from Australia with stomach cancer to be treated at the Marsden speaks volumes for the UK. Having been stationed with the Army in such places as Middle East, Africa, Europe etc, we should be grateful we are being treated in the UK. Although they adopt the same chemo regimens, I think we have some of the best doctors available, free on the NHS.
At least here I have built a rapport with Sandra,s clinical staff and their secretaries, something I would be denied elswhere. Love Paul xx
Yes I agree that our doctors are some of the beste available and as you say they come at little cost on the NHS and are available to everyone that needs them.
There are other centres that specialise in ovarian cancer apart from RM and Christies. Mine specialises in lung and throat cancer and is a world-leader. There are more smokers and drinkers in Wales so they've developed a great deal of expertise in surgery and treating these cancers.
I'm just in the wrong place to have access to leading-edge treatment for ovarian cancer and statistically I'm less likely to survive 5 years with my cancer at my hospital than some other centres. Having said that there's no known and there will be a percentage of women who will survive very little time at all at the best centres of excellence for ovarian cancer including centres in the US, Canada and other European countries.
Interesting your experience is that you wouldn't have equal access to the oncologist as Sandra. I do recall my penfriend's wife going on her own to clinics for breast cancer. I think we should be able to take along a supporter.
Language difficulties written and verbal and anything lost in translation with pidgeon English were typical for my niece with OC but living in Spain - rgds Paul xx
Apparently they take the view in the Netherlands that if you want treatment there you must take responsibility for translation if you can't speak Dutch. I rather feel the French and the Spanish would be the same as they don't even recognise their own minority languages. Harsh, but it does cut down the add-on translation costs to the NHS.
I'm not coming down on either side of that debate! lol
It can be quite distressing. Most of the medical staff here switch easily between Mandarin/Malay/English and sometimes other languages too but when I was in intensive care & trying to tell the nurse that the morphine was making me hallucinate she had no idea what I meant - it did make me think I was lucky to be here rather than in many other countries.
The plan is to come back in September, depending on how treatment goes. We will be based somewhere in the south east and I have asked to be referred to the Marsden.
Good thinking Monique. I hope the move back goes smoothly. It can be quite a jolt uprooting but the plus side is that you are home. I'd imagine it's a tough call dealing with the diagnosis of ovarian cancer so far away from friends and family.
Yes! That would be something to look forward to doing Monique. A lot of us prefer organising our own get-togethers rather than waiting for members' day. There are also events run by Target Ovarian Cancer.
How brilliant to be able to chose your location to tie in with ongoing oncology appointments. The RM is definitely a good place to go. I've long wished to return to London and the SE.
What you say about junior docs - it's a fair point though I believe when the European directive which would limit their working hours was in discussion, they claimed that restriction of working hours would limit their ensure to a varied spread of cases so I am not sure what they wanted. Clearly they did/do work hard but perhaps the workload is not evenly spread among the ranks. All I do know is that here there is not the hierarchy that we have at home and the attitude to work is different.
It seems to me that there is inequality in treatment wherever you are. In the US it appears that there may be more flexibility in where you are treated and who you see because of the system, but if you are out in the sticks you still may have little choice. Here in Singapore those who don't have insurance are not offered the same choices as those that do. However, that doesn't mean that it isn't worth looking at the shortfall in the NHS system, how ever much we appreciate the fact that it exists, and I for one am grateful to you for raising these issues.
As far as research etc is concerned, I agree with what you day. What I maintain is that the survival statics in the UK are poor in comparison with other similar countries.
Yes, survival is poorer in the UK than Europe, and poorer for ovarian cancer in Wales than the UK as a whole. I have to speak from the perspective of someone who lives in a devolved nation.
I always hope that politicians and the powers-that-be keep a close eye on how things are run overseas. There's a lot to be learned both sides of the channel. I for one would be happy to pay higher levels of tax to have a good NHS but equally I can see the argument in making this optional by having a private medical supplement. We then get into all sorts of philosophical arguments about whether everyone deserves treatment regardless of their ability to pay for it.
When are you returning home? Will you have a choice as to where you locate? Whilst nowhere offers a cure there do seem to be some places that are statistically better than others for us to live. I'm not sure you're going to appreciate the weather back home.
xx Love Annie
Oh and another thought - research in the UK may be on a par with anything worldwide, but outcomes for ovarian cancer at least, are not The UK does not compare well in this respect.
I take the view that the judgement is on whether or not they find a cure and as nobody as done that yet it will be first past the post that gets my vote!!
lol
xxxx Annie
An interesting take on the situation, Annie; but I take issue with the assumptions you make - especially about the 'centre of excellence' label.
The hospital that treated me was excellent - I had had surgery within 3 weeks of diagnosis, and it was carried out by a specialist consultant gynaecologist, and backed up by a gynae/oncology team headed by a very senior (nationally) gynae surgeon, and oncologist with extensive experience in o.c. from the Royal Marsden. However; because the particular hospital had been granted the 'centre of excellence'(CoE) citation in heart or bowel surgery (I don't remember which) a year or so before, it was decided that the citation for gynae/onc should go to a hospital 50 miles away (with which I am very familiar through my work).
So; a 'public consultation' was held, to which I went. Three patients attended. We all wanted the hospital at which we were treated to be given the title - and were told that the decision had been made, and staff appointed, etc at the other. There was an oncologist from the second hospital who told me that the surgeon who was employed for the new CoE, was wonderful (and so popular with the ladies!!!-patronising *****), and that they were at a conference recently when he was being consulted from Israel about a case because he was so world-renowned. My response was that I had had exceptional -and very focussed, individual- treatment from hospital 1 and my surgeon (who, I was told, 'would not be sufficiently qualified to carry out ov. ca. surgery'!) I have checked his qualifications and experience - and they are eminently respectable - he was astounded that this had been said.
As to trials: I was offered every trial available, although I did not want them, and my hospital offers all the current trials.
In the event; NOT as a result of our campaigning, but of the economic crash, the CoE title was never awarded - but the shiny new onc/gynae ward was given to hospital 2, and the new surgeon. Since then, the gynae patients there have been moved to an old ward, and the new equipment has been taken over by the next new fad. It remains a hospital which is a source of patient dissatisfaction and inefficiency.
My point is this: a 'Centre of Excellence' is, in reality, not necessarily a recognition of excellence, but the result of political manouveuring between health trusts for the resources that come with it. Oh, and I was told that had the label been awarded; as a patient I would HAVE to go there for my surgery (so my choice was being restricted), and travel 50 miles rather than 15 to my preferred hospital -but that I would have had my chemo at the closer hospital anyway - so trials, etc would still be through them.
Ok; so it all changes all the time - but I'm for supporting local hospitals to pick up and treat us with as little disruption as possible - and the only way they get the experience to do that is to be properly resourced for their staff to gain that experience. Ghettos of excellence might be great for a few - but the rest of us run the risk of losing out. In the age of electronic communication and instant information sharing, we need to share more widely, not focus resources from political needs.
Thanks for sharing your experience and opinion which I think is extremely valuable in this debate over resources and funding in the NHS. I take your point about centres of excellence. My perspective comes from the situation in one of the devolved administrations. Whilst I rail about devolution, and feel it's costly and wasteful, it did offer access to the person responsible for health care in a microcosm of the UK and it was enlightening to hear what informs the decision-making with regard to resources and facilities in the NHS. Obviously a much simpler matter in Wales where there are only 3M people rather than 53.01M but I rather think the principles are the same in Wales, Northern Ireland, Scotland and England.
When you're dealing with the bigger picture the needs of the individual are subsumed into what is affordable for the mass and aims to provide a compromise that ensures nobody loses out. It's not fair and the decision might be an inconvenience to individuals but it should be logical. My point was that you don't have to accept the given situation.
You rightly point out it's a matter of resourcing but if we place additional resources in the NHS what other service will be cut - or do we look at the private-funding route other countries have adopted. It's a fascinating debate but one I don't think we're going to resolve in the short-term.
You're very fortunate to have access to any number of clinical trials. Certainly in the devolved administrations with rurality being a major issue there is no likelihood of local centres having equal access to resources or trials. For many people in Wales and Scotland a 50 mile trip to hospital would indeed be a bonus.
It's so interesting to hear the perspective of patients sharing the same cancer journey from across the UK.
Hi Annie, What an excellent and interesting blog, you've certainly explained the situation very well and it's very thought provoking. You're an inspirational woman and thank goodness we have people like you fighting our corner. Love Kerry xx
I was on the Icon 6 trial and devastated when my allergy to carboplatin rendered me in eligible. Then I found out at members day that it had been pulled. Particularly as the I seem to have been getting the cediranib (my blood pressure went up dramatically) and it (or the carboplatin or both) seemed to be working, which the cisplatin did not and I ended up with more surgery. Our problem is, apart from the geographical lottery, that we are too busy hoping for the miracle cure and forget that for now we need to learn to manage and live with the condition, take treatment that will improve the quality of life and get on with enjoying it.
I have battled for years against the assumption that large centres with massive populations were the norm and the pattern.
Just to name drop! I remember tackling Sir Keith Joseph, (he had just presented prizes at a local GSch and 'graciously' granted me an interview as Div Sec of NUT) As S of S for Education he was advocating that all small schools (head + 6 teachers) should be closed and the children moved into larger units. I drew his attention to the geographical size and rural nature of N Yorks and the fact that, here, that is a large school!
At that time we had 48 primary schools with fewer than 30 on roll aged 4 - 11! To do as he suggested meant transporting 5 year olds as much as 20 miles with their day starting in a taxi at 7.30 AM! Like all urbanites he could not see the problem! Nor understand that farm labourers do not always have reliable private transport nor are they available at the right time of day (cows need milking early and you do not waste daylight hours in winter on a 40 mile round trip in the dales with lanes made dangerous by snow to collect the children).
Oh dear! Hobby horse! LOL! I am lucky but the young(ish) woman in the next bed to me for my last surgery was from Northallerton. She was in St James' for surgery but her oncology had been administered in Frenchgate and she did not seem to have had the same approach as I did. New patients in York may not be referred to Leeds for oncology but, because I started treatment there I have been assured that I can return there for further treatment if needed. even those of us with access to centres of excellence are affected! After my last chemo part of the oncology chemo suite was taken over by the breast care unit from LGI and, as a result, the beds available for those needing in-patient chemo have been reduced and I have never been aware of empty beds, or empty chairs in the day chemo unit come to that.
I was discussing management and care once any further treatment becomes pointless and the possibility of going to live with my daughter in London led to discussion of London hospitals and cancer care. His opinion was that it is very patchy and even more of a post code lottery. Having had to go to Finchley A&E in an emergency once I cannot say that I was impressed.
Brilliant points and well-made Margaret. You're absolutely right about starting off on the premise that we have an incurable disease and then getting on and living with it. There are good and bad points about every hospital and I'd imagine with our condition there might be a tendency to blame the hospital if our treatment doesn't work as well as someone else's. Of course each one of us is different and will respond differently to chemotherapy and the psychological factors in living with cancer.
The most important thing is to believe if ourselves and seek whatever treatment and routes we believe will be best for us.
I rather agree with you about London for end-of-life care. I'd far rather be in Cardiff where the hospital is 8 minutes away, there's parking on the hospital grounds, and it's altogether smaller and more intimate. Luckily neither of us are at that stage right now.
A & E is frightful anywhere and particularly in large city hospitals. Hopefully if you did opt to be near your daughter you would fine a hospice which would provide a better level of service for you. That would be my choice had I lived on my own.
It's good to think about these things so we're never caught on the back foot.
I have Primary Peritoneal Cancer diagnosed 4c ......... which not only is incurable but is also inoperable (because the tumour is too diffuse and right across my abdomen) ......which means that Chemotherapy is my only line of treatment . I soon realized that just following the standard lines of treatment (which of course are all for OC because nothing has ever been developed specifically for PPC ) that I would rapidly run out of treatment options. Diagnosed in 2010 I am already resistant to carboplatin, gemcitabine and taxol. I have met with cooperation from medics re my need to take some control, require honesty and transparency from my doctors and my wish to research and suggest alternatives . (there aren't very many ! ) I have been invited to join 3 trials for targeted drugs and one more general trial but have been eligible for none. One because my tumour did not have the right protein and another because I did not have a particular deficiency ,the third required a particular mutation which my tumour did not have .The 4th was most frustrating because it was to do with the trial rules. I was debarred from joining the trial because I had not had prior surgery ! ! ! ! At the moment there are very few clinical trials because there have been some high profile court cases in the US and so all the rules have tightened up at a time where we sufferers all need them to loosen up a bit . I started out feeling I had to fight my corner every inch of the way but I now feel that the medics currently looking after me are really on my side . So now I feel it is incumbent on me to help fight for more equitable treatment for all in my situation.
Just following the traditional pattern of treatment because that is what that particular hospital has always done will lead to failure (in my case ) . For my cancer none of the available lines of treatment can actually work . We know that sooner or later all will fail . It is only by persuading medics to try something new that I stand any chance of survival. New developments will help - testing for chemo resistance and analysing the genetic make up of each persons tumour will all ultimately help but for me these remain in the realm of science fiction as they are years and years away from becoming a reality and of course there is no point in knowing all the details of the genetic make up of my tumour if there are no drugs to deal with these personalized variations.
Reading all the comments provoked y Whippit's first question I can see the names of many who are always raising important issues, who have lots to say and can say it such an articulate way. I think a duty falls upon all of us to campaign even more for the rights of all cancer patients to receive fair treatment so that their treatment can be optimized.
Reading your story made me feel very humble. I hadn't understood the complications of PPC. I thoroughly admire you for fighting your corner and taking a proactive approach to your treatment. It's tough having a rare cancer but it seems yours is on the rare end of rare which makes it all the more difficult. I'm just hoping the fourth trial is a success and if so that you can receive treatment that has benefited the other trial subjects.
I think we are an articulate lot. We should get together and articulate. I was amazed how quickly the presentation at the APPG fed back to Wales and the speed with which the government announced a review of the way drugs are funded here.
If anyone is interested in lobbying and we're not in touch via email please do send me a PM with your email and I'll add you to the circle who are interested in making a difference for women with ovarian cancer and PPI.
I agree Margaret but inevitably there's a balance of cost against discovering the ultimate goal which is to find a cure in the shortest time possible because looking at the big picture it's the way to cure more women more promptly.
Unfortunately we became statistics the moment we were born - or even before that. Governments have to deal in statistics and the larger pictures. Doctors, and regional administrations, hopefully always treat us as individuals.
How true! Yhe first thing I learned to say was "My name is Margaret Williamson, I live at 9 Lindey Road Burnage and my number is LLCH212" wartime children had to in case they were bombed out! That number was my NHS number until they changed the system! However, regrettably, not all Doctors do treat us all as individuals!
I have to say that the medics I've encountered in Wales - my GPs - and the oncology team at the Velindre have made huge efforts to make it a collaborative and personal goal to give me decent treatment. Just as soon as I mentioned I wanted a referral to London I had really helpful practical advice from my oncologist. She'd already done some ground work to find out what the system is for a referral outside Wales and she said as soon as I get my scan date to phone her secretary who will make an appointment at the RM as soon as possible. She's going to let me have the imagine on a disc so I can take it directly to Professor Gore for his consideration. I got the feeling it's not common to receive a request for a referral at this stage.
What I meant about stats is that the bigger picture - funding for the health services or education for a nation - have to be based on statistics and averages. Funds are distributed to local agents, i.e. the NHS trusts or education authorities who are there to understand the specific requirements of an area and will divide up the funds on the basis of local need.
It's the case in Wales, and I'm sure elsewhere, that there isn't sufficient funding to create something along the lines of a Royal Marsden in Cardiff. The Velindre has some areas of considerable expertise but it can't be a centre of expertise for every cancer and particularly for rare cancers. I'm sure there are one or two dozen cancer centres across the UK which are centres of excellence for ovarian cancer. It's just the major cancer hospital in Cardiff is not.
I was in fact a statistic before I was born. My mother contracted German Measles when she was expecting me in 1952 which is the year they discovered that Rubella could lead to the unborn child developing blindness and other disabilities. Fortunately I bucked the trend but I was monitored at Great Ormond Street from birth to 12 years of age as part of an early medical trial.
Seems I started out as I shall finish off. lol xxx annie
Just to throw a new dimension in to this thread, I can confirm that Christies have obtained funding to provide a number of mobile chemo suites in the Cheshire area. Ie a caravan of sorts turns up in the local supermarket car park for a few days and provide chemo treatments to their patients without the need to make the journey to Manchester. I don,t know which cancers qualify for this local setting but suffice to say it reduces the strain at the main hospital which cannot cope with the numbers involved. To some people this is a godsend. No effect on Sandra since we travel from Staffs. Love to all Paul xx
This service is available in my area, Paul. My second chemo treatment is next Friday, which I shall have at the main hospital, but am thinking of having the third one at the 'Outreach' caravan. The only thing putting me off is the worry that if I were to have a bad reaction to Carboplatin, I'll be miles away from any immediate help.
Still pondering this one.
Thank you for an enlightening debate, ladies - I had some idea of funding issues, but not the political shenanigans with regard to C of E.
Dear Gill, Health care is highly political and a fascinating subject of study which I find pleasantly distracting from dealing with cancer as a patient.
I think it's worth asking a few questions about the mobile chemotherapy units before signing up. For instance whether there's a doctor on board or available at short notice, and perhaps a view of the risk assessment the hospital has carried out before putting the vans out on the road.
After one or two infusions of carbo-platin only I needed Piriton added to the infusion to prevent an allergic reaction. I'm assuming that's available on the van. However, on my last chemotherapy session the needle came out and the fluid leaked all over my lap. There was a huge kerfuffle with people running everywhere, a doctor was called, I had to get out of my trousers pdq and was provided some scrubs to wear home, an incident report was completed, etc.
I think I'd like to know what safeguards are in place before I put my trust in the mobile unit. In an enlightened world you'd think they'd offer you a sight of it anyway so you can assess the personal risk, if any, to yourself.
I've also been pondering your reference to C of E which I always associate with the Church of England. I'd love to know what this C of E is.
Hi Annie - thank you so much for your good advice, as ever. I shall definitely be asking questions before deciding whether or not to use the Outreach facility.
What an awful fright for you to have the needle come out during your last chemo session - as if you haven't got enough to put up with, without that happening.
With regard to my reference to the C of E; - I hope I was referring to Centres of Excellence, but it's highly probable I've got it wrong. It usually means the Church of England to me as well.
ha ha ! That's great. The reason I didn't recognise Centres of Excellence is because we don't have one here in Wales. That's the reason I shall be commuting between Cardiff and London and changing my main address to the catchment area of a C of E !!!! xxxx
Unfortunately, convenient as it would be, I won't be able to use the Outreach facility. When I saw my oncologist last Thursday, he told me it was not an option for me due to problems with sinusitis and my INR tests.
I think these may now be better controlled, but clearly he's not prepared to take any risks, which I find reassuring.
Hope anyone else who has the chance to have their treatment locally will have better luck than me.
Hope to hear you've started treatment at the RM very soon, Annie.
Do you have far to travel to the oncology unit? My previous one was just 5 minutes drive from my Cardiff home. I think travel to Chelsea from my London home won't be too bad either. I'll take my folding bike. Hope they have cycle racks at the Royal Marsden.
I too hope the RM get in touch very soon as I'm getting quite a bit of pain now. Well not bad pain but I can feel it now. My husband says I get pain if I'm stressed about something. Perhaps that's right.
I'll have a nice quiet day today after the razmataz of the last couple of days. Walking the dog with a dear old friend and then a hair cut. The rest of the day shall be devoted to R & R (rest and recuperation).
It doesn't take all that long to travel to the oncology unit - a great deal depends on what time of day it is with regard to traffic, but providing there are no delays, it takes about 30 minutes.
So very sorry to hear you are in pain - no wonder you're stressed. Just waiting to hear from the RM must be causing you a great deal of anxiety, and to be in pain as well is an awful lot to bear. Is there anything you can take that might help alleviate the stress, even if only for the short term until things get underway at the RM?
I had to have an INR today, which was ok, thank goodness - don't want an infuriated oncologist again - and then I had my new specs adjusted, but a generally quiet day on the whole. Hope your R & R did you a power of good and that you had some sunshine, as we did, to lift your spirits.
All being well, should be having my second chemo tomorrow afternoon - can't say I'm looking forward to it, although I know that, compared to you, and all the other brave and inspirational ladies on here, I have nothing to complain about.
Thanks so much for your message and all your suggestions. I think it's just the whole process of relocation that's a stress and as you say the realisation that you're in relapse saps the energy. I'm not upset. It was expected but it's still another thing to deal with.
I don't think you should undervalue what you've been through. Everyone on this site is here because they have worries. In that we're all equals.
Tomorrow is lovely a quiet. Today was a bit manic from start to finish - and I seem to be finishing well after 2:30 in the morning!!! lol
Hi again, I am so ignorant, but how do you find a centre of excellence and then what cancers their excellence is in. Google is not helping me here or more likely I'm asking the wrong questions. And people seem to be coy about where they are having treatment. Is this just not done? Thanks for taking the time to share your research, I just need a starting point and I hope I'll be able to also find out something that could be of use to any one of us. Linda xx
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teehee. (but a good blog thank you) love x G x 
Low Grade OC hope- Trametanib 
Keeping both ovaries? 
Have I waited too long?
