At long last I no longer feel alone. I realise I am just one of 15,450 patients in Wales who obtained treatment from the English NHS due to being denied treatment at home.
An illuminating article appeared in the Daily Mail this morning:
That's so really thoughtful of you but I'm sorry you deleted your post. I thought it was brilliant you spotted it and posted it up.
I just hope the article is a comfort to the hundreds more patients in Wales who are going through hell and are desperate they are being denied the drugs they need and that are available to patients in England. At least they will know they're not alone and they're not doing anything wrong by accessing the NHS over the border. I was hearted by the online comments that people in England understand and are sympathetic to our despair.
I had to meet representatives from the Government at a summit on Wednesday. It brought back the harrowing experience last year when I discovered I had been denied treatment by the Welsh NHS. My heart bleeds for others who are going through the same process. Not everyone has the wherewithal to get an address in England to resolve their dilemma and some will inevitably face a future wondering whether things would have been different had they had access to drugs.
I would only add that those in Wales who do not need access to the cancer drug fund in England are still receiving the best treatment available to them and should not be worried. X
Hey Paul, I hope you won't mind my disagreeing with you. I'll explain why and I think you'll understand.
I have just completed a course of Gemcitibane and Carbo-platin. It's a concoction that knocks the white blood corpuscles for six and patients with very low white blood counts have a 10% risk of infection, hospitalisation or death (NHS speak).
(I've just amended this para thanks to Gwyn) A member of our support group was told at one time that she would have to pay for her own treatment for low white blood count so I was asking at my hospital in England now much it would cost to buy Filgrastim injections privately. I was told by the pharmacist that all patients could receive Filgrastim on the NHS in England so nobody would need to pay privately for them. It was incorrect to say that all patients are automatically offered treatment to counteract the low blood count as it seems some aren't. I don't know why this is the case but at least it's good to know it is funded for those who will benefit from it.
It was confirmed last Wednesday that in Wales treatments to counteract very low white blood cells are not funded after the first line of chemotherapy. Patients on 2nd, 3rd and subsequent lines of chemotherapy that cause neutropenia may well suffer repeated infections, their chemotherapy will be delayed, or they may be told the answer would be to reduce the dosage.
A member of my support group quoted the risk - 10% chance of infection, hospitalisation and death and obtained the treatment. The hospital told her she would have to negotiate injections for future cycles. The injections, which cost £250 for 5 on the NHS, cost £945 if bought privately and she would have needed 20 to complete her course of chemotherapy.
I find this an unpalatable truth. Patients will not be kept in top condition if they suffer continued infections on chemotherapy. That, and the lack of life-giving drugs, the long wait for diagnostic scans (I was told 12 weeks), and the lack of Government backing for an awareness-raising campaign or GP training - may well be contributing to Wales shocking 5-year cancer survival figures. It has to be attributable to something and it has to be rectified because I believe genuinely we have a human rights issue going on here.
A leading oncologist from the Velindre Hospital told the meeting at the Welsh Government on Wednesday that Wales has cancer survival statistics on a par with the worst of the new enlarged European Union so we're on a par with Poland and Latvia here in Wales. Patients are migrating to England because the 5-year cancer survival rates there are improving year-on-year to place them on a par with some of the best in Europe.
I understand why you wanted to reassure people that it's only the lack of a cancer drugs fund that is the problem in Wales. It's a difficult balancing act. Do we say nothing so we don't frighten patients in Wales, or do we tell the truth? If we don't start telling the truth and facing up to it we won't see any improvement and that means people will continue to die before their time in Wales.
Anyway, sending you a big hug because you clearly have a big heart. xxx Annie
I've got a great idea Paul. Move over here. I'll give you and Sandra a room in my house whilst you're looking for your own place. You can take her to my local cancer centre for treatment.
But let's agree to disagree and be friends. I'm happy with that. Are you? xxxx Annie
Annie, if as you say, all patients in England on Gem/Carbo Avastin are offered these injections for low WBC. Well my count was 2.3 and should be between 4.5 and 11, and I haven't been offered these injections and have had two infections and only two treatments so far. My oncologist is the one doing the talk to Ovacome next month. So surely not all patients in England are automatically offered this treatment as you quote. Gill
I think at the nub of the debate is not so much whether individual patients are all given the same treatment, but whether GCS-F injections are within the arsenal available to all our oncologists.
It may well be they are not appropriate for everyone. They are certainly not available to everyone who would benefit from them because of funding policy and that, I think, is wrong.
Perhaps there is need for clarity here, your statement above quote -
"in England all patients are automatically offered treatment to counteract the low blood count as clearly the NHS in England will not accept the 10% risk to their patient's wellbeing"
Gill on the otherhand has confirmed she is on this regime.... and has not been offered this..so the statement you make is incorrect...
Clearly we might have this same problem in England ...
i.e. Gill hasn't been offered treatment to counteract the same WBC that you have just said is offered automatically to patients in England...
It might well be that the treatment you were offered was due to the hospital you attended and not because it was in England, clearly hospitals in England differ too...
I think it is the constant comparison with England is the issue here...
There can't be a comparison with Wales V England when you haven't got a level playing field to start with.
In conclusion then this debate might well be the unfairness of treatment throughout the UK and not just in Wales (as previously suggested)
I give you credit Annie for tirelessly campaigning for the unfair health Issues in Wales.
Love x G x
• in reply to
Gwyn, thank you for reiterating exactly what I thought was said in Annie's post. I am now going to ask my oncologist if he would clarify with me about these injections as I have been so ill this time on this regime and haven't picked up at all. I am pleased you said in your last comment, Annie, that these jabs are not available to everyone. (In the UK, are my thoughts.) I am so pleased your treatment has been successful and hopefully I will have the same outcome. Gill xx
Dear Gill, I really hope you get some helpful advice from your oncologist and that you pick up soon. There are a few of us on the Gem/Carbo regimen comparing notes. Not all of us have had the Filgrastim injections I had which are five injections that are self-administered from Day 10 to Day 15 and stimulate the bone marrow to produce white blood corpuscles. One of our group had one injection which I think was given by the hospital. Others have had blood transfusions. I think all of us have had to delay treatment at some time or other. For me the Filgrastim injections worked really well and once I was prescribed them I was able to have the chemo on time each session.
I really sympathise with how you are feeling. I've just got to the end of my course and found it absolutely exhausting. Some days I had no energy whatsoever but just had to rest all day. Even worse if you're going down with infections and feeling rotten on top of that.
Thanks as always Gwyn for picking up the detail. At least my slightly flawed argument wasn't picked up by the senior people at the Summit meeting on Wednesday in the Welsh Assembly Offices but then they were focussing on the situation in Wales rather than the details in England.
You're right - I should have quoted the pharmacist's exact words when I asked about GCS-F injections at my hospital in London. He advised me that no patient would have to pay for GCS-F injections in England as they are provided by the NHS. I therefore assumed if GCS-F injections are funded by the English NHS then patients would have access to them. Now you've mentioned it a friend who attends a centre in England has mentioned that she had to ask her oncolgist for them in order to have them.
I'll amend the above statement so it is absolutely correct and watertight.
The one positive about England that I appreciate so much is the choice. Patients have the right to choose where they receive treatment. For us in Wales we have no choice, and even if we insisted on another hospital we would not escape the funding restrictions as our oncology service is partly funded by our health board and therefore dependent upon our postcode. In England the funds follow the patient to the cancer centre. I actually think this is a good policy in many respects as it should drive up standards but I'm a bit concerned about how the people fare who just can't travel. However don't worry, I shan't be taking on the NHS in England. I'm delighted with the care and treatment I receive courtesy of that NHS service.
I do my best to lobby against what I see as unfair treatment in Wales and I'm in touch with women doing the same in Northern Ireland and Scotland. I guess those of us who are politically active are somewhat manic about it because we realise we only have a very short window of opportunity before our health deteriorates and we won't have the energy or wellbeing to continue.
As I sit here in my hospital bed here in England I feel that I can actually clarify the situation with GCS-F injections. Today I have been told that I need a blood transfusion and SOME of these injections. The reason why I am being given these injections is because my bloods are so low at THIS VERY TIME. They said this doesn't happen to everyone and they think it's because I have had an internal haemorrhage so they need to boost me up. Perhaps me telling what is actually happening to me will put some minds at rest if they aren't automatically given these jabs. Unfortunately they can come with problems so perhaps that is also a reason why it isn't given to everyone as it might not suit them and who knows I might even turn out to be one of those. Also I have been told this is not necessarily for the duration of chemo, it's for what is happening now. Hopefully this will end the blog and we can all move on and be happy. Gill xxx
• in reply to
Thank you for the information Gill lets hope the blog ends.
I wish you a speedy recovery. Lets hope you get home soon.
Regards Barbara.
• in reply to
Dear Gill,
Thank you for the update, and I hope your stay in hospital won't be too long.
Thinking of you love x G x
• in reply to
Hi Gill, did you have your chemo postponed due to your WBC being low?
I had to have 3 cycles Carbo/Gem postponed. They will not administer chemo if your WBC is below 1 they prefer it to be 1.5. Mine was 0.8 and when I asked (in Cardiff) about the injections I was told they were too expensive!!!!! It was only later when my onc returned after maternity leave the she managed to get them for me.
I was told when I asked that Velindre are only funded for the injections for 1st line chemo and I was 3rd line. This all took place a few weeks ago
Chris
• in reply to
Dear Chris,
I think you and Gill are probably talking about different things e.g.
Gill is Probably talking about her white blood cell count (hence the number she has given is higher) but white blood cells consists of several different types ...and the WBC you are talking about is the Nuetrophils (which is derived from the WBC)
Low Nuetrophils is the cause of Nuetropenia these are the levels of Nuetrophils (A type of white blood cells)
This test is called ANC
(Absolute Nuetrophil Count)
Normal is 6 to 2.5
Mild is 1.5 to 1 (meaning mild risk of infection)
Moderate is 1 to 0.5 (moderate infection risk)
Less than 0.5 is a (severe risk of infection)
Low white blood cells are called
Leukopenia.
Low Platelets are called
Thrombocytopenia
When I was in hospital... I had
Nuetropenia my ANC was 0.2
Luekopenia...low WBC
Thrombocytopenia... low platelets
Not to mention other things LOL
But here I am to tell the tale xx
• in reply to
Hi Gwyn, I write this from my hospital bed where I was admitted yesterday. You are correct about the difference. My WBC was2.0 four days ago but is now 1.9 and my neutrophils were 1.3 but are now 1.5 hooray for that one. Seemingly they told Anton my CReactive protein (never heard of it) is 43.9 and should be less than six and this is what they are focusing on, something to do with white cells fighting!! My oncologist is in Africa, so a bit too far to pop back and see me lol. Love Gill xxx
• in reply to
Dear Gill,
I am sorry that you are in hospital, I hope you return home soon, but it is good that you are being looked after.... thinking of you.
Thank you for endorsing what I thought was the difference between you and Chris's... I also thank you for putting this conversation back in the order it should be thus doing away with the confusion (read my comment further down) now it makes more sense (where it didn't before) I am glad it is back on track otherwise there is very little point in it .
Anyway Gill like I said I hope you are not there too long and your problem will be soon sorted love x G x
Dear Gill, I was sorry to read your post to say you're in hospital and worryingly your oncologist is in Africa. It's unnerving when you get used to seeing a particular person and then they're away and you see someone entirely different. I really hope your team can get the CReactive protein sorted out and that you will be feeling better soon.
Take care.
xx love Annie
• in reply to
Hi Gill, sorry to hear you've been admitted to hospital.
I hope it will be a short stay and that they get to the bottom of the problem, we have enough to contend with as it is..
I've seen the funding policy for the Scottish NHS which doesn't fund Filgrastim after the first line of chemo and I rather expect from your experience Chris that Wales doesn't either but a senior oncologist can 'bend the rules' for an individual patient. It might be worth putting in an FOI to clarify the policy which should anyway be available to the public. I've found the NHS in Wales to be very smoke and mirrors so difficult to find out anything which is very frustrating.
Also it's important to remember that if something isn't funded then you won't be told about it so you won't know you're missing out on treatment - as in your case. This was also the case for me with Avastin. My oncologist simply never mentioned it until I heard about it and even when I brought up the subject she played it down and said it wasn't worth having. The reason we discovered things were a bit strange in the Welsh NHS was when a friend, funded by Aneurin Bevin Health Board, was told at the same time that Avastin was great stuff and her oncologist put in an IPFR. We compared notes and found we had the same oncologist. Now I'm not critical of the oncologist. She has to manage our expectations within the limits of the health boards' perceived funding habits so they give patients different advice according to the likely funding of the health board.
What needs to be done is to challenge the funding of the NHS in Wales. According to a senior member of staff at the Velindre funds for cancer services should be transferred from the Health Boards to the cancer centres. I see the sense in this in order that decisions on treatment are made by oncologists based on medical opinion and personal knowledge of a patient and not a committee of public servants behind closed doors working to a director of finance in a health board.
My friend, btw, was turned down for Avastin by the Aneurin Bevan last summer. The oncologist appealed but it was rejected. Problem is it's difficult to appeal if you don't know the criteria used for approval or rejection. That patient had the means to fund Avastin privately for a little while but then sold her house in Monmouth and moved to Surrey where she's currently receiving Avastin funded by the National Cancer Drugs Fund.
I was wondering if this comment has anything to do with my comment to Chris ? Because my comment to Chris was relating to her question to Gill... Your comment however seems to have taken this off into a different direction (I can't think why) and is out of place here ...so adds confusion to the original conversation that Chris was having with Gill.
I think by now Annie we all get the message that Wales is underfunding the treatment and health of patients.. but as you speak to Chris on a regular basis in person (not just on here) I can only assume that this comment above is for the forums benefit... so maybe better in a different thread... rather than in the middle of a conversation that has no relevance... I just hope that my input into this particular conversation (not thread) will still make sense. xx
I find this a huge dilemma, having being treated in Velindre as Annie was originally, so far my treatment has been brilliant and am now in my ninth month of remission from 3c. However apart from the'normal' worry of recurrence I also worry whether I'll get optimal treatment if/when a recurrence should happen, which I've been told is highly likely.
My husband and I have discussed this at great length and due to numerous things e.g. money, two teenage boys still in school etc, there is no way I could move to England or indeed get an address there to access treatment. I'm going to have to stay in Wales and hope for the best, just hope that things will change for myself and all other ladies that have the added worry that they'll get the treatment they'll need here in Wales.
I'm glad you're doing ok Kaz. I think it might have been better for Wales if they'd been able to go it alone without having to take on the responsibility of the Health Service. Love Tina xx
Ha ha Kaz.. yes, it's brilliant. I find walking hard but I'm makng improvements. Standing in the same place is one of the hardest things for me so, yes, the three legged stick has been absolutely brilliant... . One other thing. I have got an electric bike and have been on it. Cycling is much easier than walking and if I cycle with my knees slightly outwards, and with the help of the battery, it means I don't have to put any pressure on my abdomen whatsoever. I can actually feel being pulled along. I find it a mystery how a battery can do this, but it's true. Even cycling against the wind is easy. I haven't done any hills since I live in a flat area. but I'm sure the electric bike would help there too. I'm told that it does. The colossus Health Service has had time to evolve over the years and then to have that structure sectioned off, I think has led to problems. Love to you... T xxx
I believe you're right Tina. It's never going to be economical to run a separate health service in a nation with the same population as Greater Manchester. At least if they set up separate health services for every city in the UK there would be a geographical centre where a hospital could be sited. It's rather crazy and extravagant having so many specialist services in Cardiff not 25 miles from Bristol!
If funding is done per head rather than on need, then there's always going to be a problem I feel. I wonder whether something could be done to help? xx
It was interesting to hear a senior oncologist at the Cancer Centre in Cardiff arguing why Wales needs to develop specialist services which he seemed to base on a personal preference to work in Cardiff. It seems like duplication to me given Bristol is within easy commuting distance though Kaz has just suggested Bristol would be a difficult commute for her.
I'm in two minds. Isn't the Health Service meant to be serving patients' interests rather than staff's interests? England has announced it needs to reduce the number of major cancer centres in order to build up better resources and expertise commensurate with the best centres in Europe. Shouldn't Wales be part of that contraction process?
If we based the funding on the number of sheep we have we might be better off. There are 10 to every 1 person in Wales. 30M of them!
I just pray that all the lobbying by patients, charities and some AMs, fuelled by a lot of negative commentary in Welsh and National press will change things for the better in Wales. I have a deep respect for Ann Clwyd's statement this week. If she your PM? Let's hope recent focus on Wales will start to bring about change and you will never have to face the agony of being denied access to drugs to improve the quality and length of your life.
If push came to shove it is possible for anyone to get an address in England. You don't have to move there which is what my article explains. It doesn't have to cost anything apart from travel to a centre such as Bristol for treatment which isn't bad from S Wales. A lot of patients travel to a main centre to access specialist treatment. Paul travels from Stoke to Manchester with Sandra. It can be done.
Let's hope that possibility never has to cross your threshold but if it worries you it is worth contacting your AM to express how you feel.
Hope to see you at our next meeting. This is a topic we can discuss if people want to. Love Annie xxx
Yes Annie, will see you at next meeting, won't need picking up from the station thanks, as I've got a lift down next week, would be interesting to hear other's thoughts on this subject.
I was first diagnosed with PPC by the gynaecologist in Winchester. I was told that I would not be having surgery only chemotherapy. I decided I wanted to come home and be treated at The Christe so I gave up my job and that's what I did.
I am now glad that I did because one of the first things that The Christie did was refer me to a surgeon for a biopsy. If I had stayed with Winchester I would have gone down the wrong treatment path I would have only had a partial response to the chemotherapy.
Sadly not all hospitals have the necessary expertise and funding. It makes me feel sad that I find be a financial burden.
Hi Lorraine .. So you wouldn't have been staged etc.. You know, with a tissue sample to say what type? I thought that was the norm but I've made the wrong assumption ...xxx
Well you don't need a tissue sample to stage someone but you do to grade them. Not all hospitals insist on a biopsy. I had ascities and when they drained the fluid they found adenocarcinoma cells. I also developed a pleural effusion in which they later found cancer cells but that was when I was back in Manchester
I'm really shocked .. Because, as you said, the treatment's not always the same and as new trials come out, and treatments are individualised, it's essential to know. It's hard to see the extent of disease for some types. I was staged IIIc but the lesions I had at the time on my lung, have since grown. I too had ascites which was drained. In 2006, I had a 17lb cystadenoma removed with a bowel resection for what I later found to be 'suspicious' tissue. So we're both down the adenoma route, aren't we? What type did the pathologist say you had in the end? Mine's serous papillary. Love T
I was told that as well after my hysterectomy. There for I assumed that the low grade areas looked like low grade cells and the high grade areas looked like high grade cells. Try googling Micropapillary Serous Carcinoma (MPSC) and have a read through this
Its considered a bit controversial though because a lots of gynaecologists do not expect the definition because of the limited evidence but its a rare cancer so I think that will be an ongoing issue.
Read the article Annie. It just leaves me speechless.
I was told I couldn't have the injections because I was 3rd line chemo. As you know that decision was reversed when my own onc came back. The fact that in Wales you have to prove "exceptional circumstances" in order to access drugs is a nonsense. We all have exceptional circumstances.
The professionals are fantastic, unfortunately their hands are tied by politicians who don't think "cancer patients in Wales would not benefit from a cancer drug fund" and that was a quote from one of our AMs in Cardiff
Yes the quote, 'Cancer patients in Wales would not benefit from a cancer drug fund', was in fact our former Health Minister Lesley Griffiths which is probably part of the reason why we're in a mess now!!!!
I agree wholeheartedly that our healthcare professionals are fantastic - working beyond reasonable hours and expectations. It's a shame really that Ann Clwyd seems to be having a go at them rather than looking at the bigger picture but I guess then she'd really be flinging sh*t at her own party.
Do you remember the Macmillan Survey we looked at and complained about - it led to a vain-glorious report that 58% of patients rated their care as excellent. However, as you'll recall the survey was a waste of space and patients weren't given an opportunity to give some constructive criticism on what was bad in Wales. It's not the staff to be sure as few of us would criticise them. What we're critical about are the politics, the funding, and the shambolic infrastructure and management at the highest level in Wales - and I guess that means our Labour/Plaid Government.
It was announced at the meeting in the Government Offices on Wednesday that 'exceptional circumstances' is an unlawful definition and this has to be reviewed and amended. Let's see what they come out with in the next few weeks. Quite a lot of media coverage today - not just the Mail, but the Times too.
As an afterthought I just thought I'd post up to say that we frequently have threads where we express worry that our local cancer service isn't as good as it may be.
If that is the case this is an excellent forum to express worries and to share them to see whether others feel the same and whether our concerns are valid.
If anyone genuinely does feel worried then I would advise you to make an appointment with your local Assembly Member or Member of Parliament. If you don't share your concerns about health care with them they won't know it's important.
I found my MP's surgery by googling MP for Cardiff West. I found the surgery times and the address where I could contact my MP, AM, etc. In fact I met Mark Drakeford who's the Secretary of Health for Wales as well as my local MP, and I shall be contacting my AM and the shadow AM to raise concerns with them.
Both Mark and Kevin Brennan listened attentively. I also contacted an AM for another area because I was aware from a google search that she was interested in cancer. If we don't share our worries with the people we have elected to look after our interests they won't know what the issues are and they will never be resolved.
I put my head above the parapet Carol so I have to take it on the chin if people don't agree with me or even actively dislike me. You can't please everyone all the time! I'm really looking forward to meeting you at our April meeting and hearing how you're getting on.
I totally agree with kaz14 . I have received excellent care from Velindre hospital . I am prepared to take my chances because whatever I have needed treatment or meds I have had no problem getting love mouser 123
I must say I have admiration for you speaking up, because it does show that we are all different with differing experiences of the same health authority...although I am Welsh I live in England..it bothers me a lot about the health issues that seem to be unique to Wales (I still have family living there) so thank you for putting my mind at rest.
Dear Gwyn, I just thought I'd mention the health issues re drugs availability is not unique to Wales but are problems for the three devolved nations - N Ireland, Scotland and Wales. It is my opinion that nobody should have to accept their country has significantly worse cancer survival rate than any other country in the UK. Unfortunately Wales does although there are centres of excellence here for some cancers. Sadly not for ovarian cancer. What is wonderful about this site is giving women in each of the nations a chance to get to know one another and support one another as we're all fighting for equality of health care. To some extent the discussions on healthcare in the devolved nations may seem irrelevant to those of you (now including me) who receive their care in England but it is the contributions of patients in England that give us in the devolved nations food for comparison so please please don't stop sharing your experiences with us.
Apologies for using the term "Unique to Wales" the health problems in any of the devolved nations are not under dispute here... I thought that this particular thread was about Wales... ie the title being "Welsh Cancer patients Flock to England" this is why I only mentioned Wales
(my apologies to the other devolved nations)
If we are discussing the other nations too ...then this title is misleading (of course I realize it was the original quote from the newspaper) but in my comment above I was only discussing the Welsh health problems and not the others.
Lovely Gwyn, the post was originally to share a newspaper article. It's sparked off a lot of debate and I guess this may well be the topic of conversation at our support group later this morning.
Someone had the idea of resuming our fun Friday post. I'd really love that. It made us all laugh. Let's hope for some inspiration on that front!
p.s. Are you going to the Ask an Expert Day in June? I've just booked my place. Another chance for us all to meet up and have a group hug xxx Love Annie
As mounser 123 has put, and as I stated earlier, so far I've had excellent treatment. What I'm a bit confused about is one of the big issues seems to be that we in Wales can't get Avastin. I know mounser has had it, and I know a young lady living a couple of miles from me is receiving it now, I was speaking to her mother last week.
I actually spoke to my lovely CNS a couple of weeks ago expressing my worries about receiving Avastin should I need it, she told me that I would definitely get it if I should need it and if I was suitable for it. I asked why I didn't get it on first line and she said it was because I had no bulky residue left, I was ned which is great!!
Hi Annie, my health board is Cwm Taf and mounser's is I believe Aneurin Bevan. I'm glad that it's cleared up that it's not all of Wales, but that it's down to the individual health boards although it does seem grossly unfair if Cardiff and the Vale never grant it. Purely selfishly I'm feeling rather relieved that mine seems to, of course based on if you're clinically suitable for the drug.
Dear Kaz, I hardly know what to say. There is no guarantee any patient in Wales will receive Avastin because there are no clear criteria against which you can tick off your specific case. This is why I was at a summit meeting at the Welsh Government Offices last Wednesday. We were arguing for clear and transparent criteria that would apply to all funding requests in Wales.
The Wales Government is conducting a review of the Individual Patient Funding Requests right now and two of us were taken along with the 'great and the good' from some major London charities, Roche who make many of the cancer drugs, and a senior oncologist from the Velindre. I have no criticism of the The Velindre where I received good treatment within the constraints of funding. I also had a very constructive and enlightening meeting with the Director of the Velindre. You might not believe it but staff are unhappy with the situation they're working in and welcome the patient voice as it counts for more than theirs. My criticism is with the Welsh Government for the poor funding of oncology services in Wales, and for permitting a postcode lottery and an unfair system that can turn down patient requests for no clear reason except they are not 'exceptional'. Exceptional cannot be measured. As Chris (Darragh) says above we're all exceptional so the IPFR process is fundamentally flawed.
There is so much confusion in Wales. At the moment we're getting a lot of support from London-based charities such as Target, the Rarer Cancers Foundation, Britain Against Bowel Cancer and Breast Cancer charities along with Roche and probably many other national charities but you know a handful of charities from London won't sway the Government if the electorate give the impression everything's rosy. The criteria quoted above re optimal debulking is taken from the English National Cancer Drugs Fund and this is not a criteria that applies in Wales though oncologists at the Velindre use the NCDF England criteria as a 'rule of thumb'. In Wales the oncologist has had to argue for 'exceptionality' in the past but this has been deemed to be unlawful so the Wales Government, along with the Scottish Government, are now obliged to review their guidelines.
I'm not challenging the Government for myself as I've resolved my problem - though the recent exposure in the national press has put me in a vulnerable situation as I don't know the law and who knows, perhaps Avastin might be withdrawn and I shall be sent packing back to Wales. The campaign is for all people with an incurable cancer in Wales and is a campaign for fair treatment. Fair treatment doesn't guarantee drugs funding. Many people in England miss out on NCDF because they don't fit the criteria - but at least they must have the peace of mind to know they were treated fairly in a time of funding constraints.
Sadly those of us round the table - including AMs - felt despondent that things are going to improve much. With no clear criteria it will continue to be a lottery - even for patients within the health boards that have been known to fund cancer drugs. The problem is if we can't persuade the Government to make clear what the criteria are patients can't appeal if their request is turned down.
I think there is a need to be aware of what's going on. My greatest hope is that patients will not relapse and not need to worry about this debate but of course this isn't going to be the case for everyone.
I'm happy to chat about this when we meet up - but think it's a topic that should be discussed outside the support group meeting time as some people would prefer not to worry about it.
Hi Kaz, I am under Aneurin Bevan and they would not fund me for a 2nd opinion last year. Annie and I have a friend in Neath and her health board funded her for Avastin.
Unless things have changed dramatically recently Velindre had received very little success in their applications for Avastin for patients even when the consultants had said they would benefit from it.
I'm not a candidate for Avastin because I have a tumour attached to my bowel that couldn't be removed at surgery.
My consultant is fantastic and goes above and beyond when it comes to care. It's the decisions made at the Senedd that are being questioned.
I'm grateful for your comments Chris as I had a sleepless night thinking I'm making people miserable when they'd be happier left in ignorance. I had lunch with a good friend from our support group today and she said it would be happiness bought cheaply if we don't challenge the unfair postcode lottery and unaccountable rejections from health boards as it will come back to haunt us.
I agree wholeheartedly with your comment about our consultants going above and beyond. They are amazing. They'd really appreciate it if patients would stand up for fair treatment as the current situation where they give some advice to one patient and the opposite to another due to their being funded by different health boards is totally unethical and a frightful situation for them to be in.
I'm at the Velindre all morning tomorrow and for the duration of the gynae cancer appointments. I'm taking in my I Mac to demonstrate this site as it's a lifeline to so many. It would be lovely to catch up with anyone who's there for an appointment and let's hope I catch up with Rachel, Emma, Sarah and Clare.
Does anyone know if the free wi-fi at the Velindre now extends to the waiting room?
I think it is rather disingenuous to refer to people as being 'happier to be left in ignorance' just because their perception of the situation might differ from your own or that they might have enough on their plates without getting involved in the politics of healthcare. What has to be borne in mind, especially when using this forum as a political platform for any perceived issue, is that each individual is just that...an individual. As such, experiences of disease and the various treatments applied, the efficacy and availability and even the personal interactions with clinician's are obviously going to vary widely. That doesn't apply only to the devolved nations, but to England too. One patient's experience of treatment in either Wales or England is not necessarily an accurate portrayal of the efficiency or otherwise of either Health Service. It is that patient's experience and while such experience is important to share, no one should assume or worry that they would experience the same problems or benefits should they be treated by a particular hospital, oncologist or under the direction of a particular health authority. While I applaud your efforts in raising awareness of OC and trying to drive up care standards, I suspect you become so convinced by your personal findings and assumptions that you become blind to facts when they don't necessarily underscore your preconceived conclusions. Stating people 'prefer to be left in ignorance' is hardly indicative of an appreciation for the validity of the experiences and opinions of others and for me that is a shame, especially in an environment such as this.
Hi Andy, The Secretary of State for Wales has announced on a number of occasions in the Wales press over the last year since taking office that access to cancer drugs in Wales is a 'postcode lottery' and this has been reiterated in the Welsh and national press and on TV so I think we can start from the premise in Wales that this is fact published by our government and not a preconception of any individual patient.
There is intense pressure in Wales from the press, TV, national cancer charities and patients to bring about change in order that the people in Wales are treated fairly. This wish was echoed by a senior oncologist contributing to the summit in the Government offices last week and indeed by many health care staff in Wales. Our oncologists tell us their voice doesn't count with the Government but the voice of the patient will be listened to and a number of us have been actively encouraged by health-care professionals and management staff to voice our concerns in the media because their view is that it is the patients and the electorate in Wales and not the staff in the NHS who can bring about change.
My worry is that by opening up the debate in Wales we will expose the unfairness of the system and this will worry people. I don't use the word 'ignorance' in a perjorative sense but in its other sense of 'uninformed' or 'lacking information'. The culture of the NHS in Wales is very different from England. We don't have anything like the NHS Choices Website with the welter of information on diseases, diagnostic and treatment plans, drugs and support. In Wales we have no Patient's Charter, so we don't have the same rights as you do to choose our centre for treatment, or to have a second opinion. In fact without a patient's charter it's difficult to know what a patient's rights are. Health boards can, and do, turn down requests with no clear explanation so patients find it difficult to appeal the decision. Unfortunately cancer patients don't have much time or even the energy to engage in an appeals process. Emerging from a comfortable 'state of ignorance' as I did last year was a process I would not wish on anyone.
Bringing about change is a balancing act. How does one effect change without exposing some unpalatable truths? As it happens the contributions from Ovacome members in Wales to this thread have been made by members of our local support group so we do have an opportunity to chat and support one another face-to-face which might not be apparent to those of you viewing the debate online. It's my view that a face-to-face chat really would be a far more supportive forum to discuss some of the detail we've stumbled into. In fact we meet today and if it is the members' wish these issues will be discussed and shared.
If not we'll just have our usual chat, laugh and a cuppa.
Hi Annie, I am not sure you grasped the intent of my comment. Nowhere did I suggest there wasn't an issue in Wales; that is of course an on-going debate. My concern was primarily the assumption you make that those who dispute with you or don't actively get involved in the politics are somehow less informed. As I stated, there are many reasons why individuals don't deal with their diagnosis in the same way as you do, not least of which is the fact that they might have enough to deal with without doing so. That doesn't detract from the excellent work you do in both raising awareness and trying to drive up standards where your personal experience perceives an issue; in such endeavours I sincerely wish you every success. However, whether you intended your comment in a 'perjorative' sense or not isn't the issue; clearly you have a perception that those who don't agree with you or don't involve themselves have a lack of knowledge or are misinformed. To my mind, that perception in itself is insulting and a mere assumption.
You asked, "How does one effect change without exposing some unpalatable truths?" Indeed it is a balancing act, but being factually accurate in the statements you make about those 'truths' is surely essential, especially on a platform like this. Facts often differ greatly from assumptions, anecdotes and broadly based unsubstantiated statements. As a brief example you begin your reply to me with a quote containing this statement, "...access to cancer drugs in Wales is a 'postcode lottery'...". While there may be some truth in that statement when it comes to unapproved drugs, is it an accurate reflection of a situation that is any different to that in England when it comes to the NICE approved treatment protocols? The 'truth' (unless I really am misinformed) is that Welsh oncologists have access to the same approved drugs as those in England. Any suggestion otherwise has the potential to cause doubt, stress and apprehension of the treatment someone might currently be receiving. For me, that is not an effective way of offering support to those currently in treatment or newly diagnosed.
Well said Andy, as my comment at the start of this debate said. Treatment in Wales is the same as England when that treatment falls within NICE guidelines and therefore no one should be worried about their treatment plan. The issue about access to the CDF will soon be under scrutiny as it has overspent this FY and its not clear if the £200M annual budget will still be fully available.
Thank you Andy- you expressed my feelings exactly.
I rarely contribute and do not access the site much anymore as I am one of those people who has enough on her plate already.
This does not mean I have no understanding or interest in healthcare or its politics.
I think some of the discussions about clinical trials and avastin can be misleading and may be upsetting to those of us who are not eligible wherever we live.
I am aware health and politics go hand in hand but my understanding was this forum is primarily for support.
I couldn't agree more which is why I felt it necessary to comment. I am sure Annie meant no harm, but sometimes our views perhaps need to be forwarded with a little more awareness for the nature of the forum.
Yes Chris, I remember that, not sure if I remember correctly but didn't Velindre give the funding for your second opinion, I remember at the time thinking how bad it was that your health board turned you down. I don't know a huge deal about it, I only know that the two people that I know, were given Avastin in Velindre, they had it with no problems, I've been told by my CNS that if I ever need it I will get it, I'm hoping the need will never arise!!
I'm not disputing what anyone says on here, I'm not very good at political issues and I'm just saying what I've been told.
I have nothing but admiration for the people who are fighting for themselves and others and I don't believe anyone is saying the care from the hospitals themselves are in any way not up to standard, I do realise that it's a political decision more than anything else. Hope you're keeping well.
I feel I must comment if only to put your mind at rest, I feel that conversations like this can pull the rug from under your feet, and put in your mind doubt about the treatment you are getting... as patients we move on from where we are and might at some point need a second opinion (there is nothing wrong with that and no reflection on the treatment you are getting) but while you are having good treatment and care this is what you need... we often think we know better than the experts who are treating us.
But it has already been said that treatment someone else gets might not be suitable for us as we are all different... e.g. Avastin as we all know is not suitable for everyone for a variety of reasons it could be health, or it could be because we don't fit the criteria...
If you have been told (subject of course to fitting the criteria) that you will get it in the future then rest on that knowledge... but you need only to jump that hurdle when it arises (if it ever does).
Having read people's comments for quite a while on HU... I actually feel that there has been criticism on health care and about Velindre in particular (but not exclusively).
The trouble is it has also been inconsistent,
I know there will be some that would argue this point and say they have not been inconsistant (but I have read what I have read)
We all have a point of view and must not feel under pressure to change that point of view...
If I had listened to some friends about my oncologist I would have changed him years ago...but Instead I went with my gut feeling and nearlly six years on I am still here..
(I might add that none of these friends are)
I don't think it is because they swapped oncologist (of course not) it is because of the nature of our disease...
(but swapping oncologist didn't save them either) If they had stayed with the same oncologist ...I have no doubt that the blame would be put squarely on his shoulders (by others) sadly we are living in a blame society (someone's got to take the blame)
The political issue is different and some people are good at sorting the wood from the trees and some aren't (I would be hopeless at this)
(Again it is choices) while I applaud those that fight the corner of others... not everyone can do this... and might not even feel the need to do this.... (There is no shame in this)
When I was first diagnosed I wanted (and needed) to raise awareness...now? I still feel the need to raise awareness, but not at the expense of the people I love (my family) so I choose to raise awareness in a quieter way...when I am no longer here I would hate for my family to feel that I cared more for others than I did for them...some people can manage both... so again it is choices...
Thank you for your reply, I think I now need to stop worrying about future treatment and live in the here and now,
which is pretty good at the moment, and as I've said so many times, so far I've had excellent treatment.
I've been trying to do a lot to raise awareness recently and have met lots of people from a Fb post that I put on, through this I have been talking to ladies every day(online) about symptoms etc., but it's as you said, you'd hate for your family to think you cared more for others, I've decided to step back a bit for that very reason, it took over my life a bit, now I need to focus on my husband and boys more.I loved what you said about choices, not everyone can fight for others, I think sometimes we feel we should, but what you said about there being no shame in this if we can't puts it into perspective, for me anyway...
Again thank you for your reply, I really appreciate it.
Love Kaz xx
• in reply to
Dear Gwyn I think you have covered this topic in a nutshell. Thank you for your reply to Kaz Having caught up with the post I must admit I was feeling very uncomfortable, Having my treatment in England, whilst we all have this terrible disease for some of us it is re-occurring, we need to feel that we are having the best treatment for each one of us.We always try to remain as positive as possible. Doubts can always upset people in very vulnerable situations. Even me.
Regards Barbara.
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Just thought I'd mention that in order to recieve Avastin to treat ovarian cancer in England then we have to apply for funding through the drug fund....
I thought this might be a usefull link for information on the drug fund....
But please note this fund is only available for people in England,
The governments of Scotland, Wales and Northen Ireland decide seperately how they spend their money on health and do not have similar schemes.
However, please note the IPFR in Wales is currently under review as the criteria for approval, which is 'exceptionality', has been deemed to be unlawful so both the Scottish and Welsh Governments are having to review this. I understand the new guidelines on IPFRs will be published in the near future.
Thank you Andy for your very articulate comments.(both of them)
I think you speak for many people who are either too ill, too tired, or might even have a different opinion on this... we are all different with different experiences of life, not only ovarian cancer...(which in itself is a mine field)
Thank you for putting in to words what many of us either haven't got the will power or simply cannot do.
Love x G x
I totally agree Millie this post would run on for ever and ever. We know this from previous posts on this subject, No doubt in the future we shall be here again.
Good wishes to you all wherever you reside.
Regards Barbara.
Dear Millie,
I do hope I haven't upset you I know it goes on and on...
I am guilty myself of being a little woodpecker pecking away... I have no wish to cause upset though.
I do try to leave things and then feel compelled to speak up.. things aren't always as clear as they seem... but it then takes a long debate to add clarity to a situation.
(It can be very tiring)
I agree that Andy has expressed things in a very articulate manner...
Oh well back to my simple uncomplicated poetry ..
I think it is a bit much as I have another one to post ... 3 in one day is over the top, but they have piled up (I try not to leave people out) that is once I know (but I can't know about everyone) LOL
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