Today I shall be having lunch in the House of Lords' Dining Room with a researcher on disability.
It's opened up the opportunity to pose a question that's long worried me.
Ovarian Cancer is a disability. Treatment for this condition across the UK has become a post-code lottery and this became particularly evident with the Avastin debate where some women, even within the regions, had access to a drug that prolongs life.
Is there not a human rights issue going on here?
hmmm .... I'll wait till he's finished his dessert to ask the question and if I get an interesting response I'll keep you updated.
Any human rights lawyers on here?
xxxx Love Annie
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Thanks for your good wishes Gwyn. Had a fantastic day and a tour of the Palace of Westminster which was awesome. I had an interesting debate about disability and bumped into Baroness Tani Grey Thomson in the House of Lords.
No further forward, however, with the question about Human Rights but I shall continue unabated until I get an answer.
xxxx
love Annie xxx
Yes but... I've explored this is some depth. The problem is essentially clinical judgement. Any individual decision taken by an oncologist is her/his clinical judgement which depends on myriad factors some of which are unique to the patient concerned. If you question a decision, the response is liable to be 'in my clinical judgement', which is difficult to argue with. Oncologists are an opinionated lot, there are entirely reasonable differences of opinion regarding many treatment issues. Some are more pro Avastin than others (there has been a massive marketing campaign by Roche). Some make decisions that I believe are paternalistic - e.g. the Rotterdam regime is too toxic to give to a patient in a palliative setting (as you know, any chemo after adjuvant/neoadjuvant treatment is classed as palliative). There is a fine line between empathetic and compassionate care for a patient and making decisions on the patient's behalf.
It is a difficult issue. I think that it is better to try to work with oncologists than confront them. We always have the option of going elsewhere. Good luck at your meeting. Cx
the issue isn't so much the oncologists but the NHS who refuse to provedeAvasti. when the oncologist has recommended it. your ideas are most welcome to stoke the fire on this subject. Sent from my I Phone at the HoP. xxx
Isn't Avastin funding a separate issue? Unless there's disparity in the cancer drug fund paying for it, and isn't that due to be phased out? If there's a regional pattern to Avastin use I suspect it might be due to individual oncologist's opinions. Some fight for it and some don't. Cx
My Oncologist has fought it the whole road for me .. but still no gd .. everyone she has put forward for treatment with Avastin has been rejected .. The final decisions comes from higher up .. i now have 2 msp's and 2 mp's on to my case to try and get answers from who actually make the decisions of who gets and who doesn't ... as we were told that here in Scotland it's on a case by case basis .. xx
Apologies for the rather garbled message below which I posted from Black Rod's Garden.
I'm interested in the politics of the Avastin debate and I'm not challenging the oncologists. I'm considering the ethics of a case where an oncologist has decided it's in the patient's best interests to prescribe Avastin - or a similar treatment to prolong life - but the various NHS boards - or indeed the Scottish Assembly decide that they will not authorise it.
We have the case in Wales that oncologist applied for Avastin and some health authorities granted it - others didn't. I just feel there's a human rights/disability issue going on here - particularly that we're talking about the quality and possible length of people's lives.
I didn't expect to get an answer to my question today but thought it was a start to throw it into the mixing pot.
Great opportunity, Annie. I wish you a great day and a successful one. Do keep us posted.
My question would be: why dismantle all the cancer networks and replace them with something much wider, geographically, and in terms of illnesses (Essex Cancer Network has been replaced with East of England network for Cancer, cardio, stroke, paediatrics, gastro lofty...Uncle Tom Cobley comes to mind!)
Wider and wider into infinity? We'll lose all the specialist voices
I think I can see the point of combining cancer networks with other networks to avoid duplication. Basically there isn't enough money to provide treatment for all conditions but what I would hope for is justice - so that everyone has access to equal treatment based on pre-agreed terms and conditions. I would imagine a broader grouping of conditions in one network would enable them to see the wider picture but I'm coming at it afresh.
It would be interesting to know what you found to be very positive about the former networks and to understand from your perspective why the new grouping are undesirable. Having recently joined the lobbying force I'm a bit confused as to which groups and committees I should join. I'm being pulled in many ways at the moment.
We should also be thinking what we can each do to get in touch with our local media and suggest they run an article for World Ovarian Cancer Day.
Wishing you the best of luck Annie. Will be interesting to hear the response. Hope you enjoy yourself too.
Love Mary xx
Am I right in saying that AVASTIN even if recommended by NICE in the future is not to be given to those over the age 65 due to side effects etc.
• in reply to
I don't think so. I know one of the major problems with Avastin is that it can cause severe hypertension, which is often an existing problem in older people. I think the trial figs are misleading - Avastin seems to work very well for some people but not for others, and this averages out at one month extra PFS or whatever. I think it would be more fruitful to see if the people who do respond to Avastin could be identified pre-treatment (by tumour analysis maybe). If that were the case then the finances would alter dramatically and NICE would have to OK it. I know of one lady who has been stable on it for three years and counting. But it's not suitbale for everyone and it doesn't work for everyone either.
There's rather a worrying trend going on with older patients across the board. With restricted funds I understand health authorities are having to make decision as to whether they continue expensive treatment for older patients.
So sorry I'm behind with reading all the Blogs. Which I'd seen about your House of Lords meeting before you went so I could have wished you the best of luck. You really are a trooper!! Thank you for trying to change things.
As Jackie says - just don't overdo things!!! Remember what your homeopathic doctor said .....
Will try and catch up soon with Blogs - no chance today as will have a houseful of children and grandchildren. Then out tonight - very rare, nowadays, as tucked up in bed by 7.30 (how awful, can't be me that I'm talking about !!) My lovely Daughter is running a Quiz Night to raise funds for a Charity she supports. We like to help her and will enjoy being part of it.
Very worrying if there's a trend to not continue expensive treatinment for older people - but as a 70 year old, I can understand the logic of it really. It breaks my heart when I read postings from our younger friends, especially when they still have children to bring up. As a mother of four, I can understand how devastated they must be. The thought of not being here for my grown up children and grandchildren is bad enough .......
Oh dear!! How did I end up saying all this?? Sorry.
Thanks for the good wishes. The meeting went as well as expected but you know how these things go. Sometimes it seems two steps forward and one back - but at least I've had my say and who knows I might be referred to someone who can give me some hope.
I hope your evening goes well this evening. We've been staying with one of my daughters in London. When we got home last night we sat down and had one of those conversations that touch on my not being there for my daughters and grand-daughters. It was hugely painful to think about it. Usually I don't because it's really not worth worrying about something that I can't change and I reason that when I arrive at that point it is not I who will be sad. I shall be a pile of ash and the people with the regrets will be my children and grandchildren.
It's important to concentrate on the present and to leave the others to deal with any regrets.
Opps, I forgot that. I'll take one when I get home. Returning to Wales after 5 days in London. Have been doing some of the sights - well I say sights - I should perhaps say 'eats' with my penfriend and his wife.
Being keen foodies the three of us spent half a day at Borough Market and had breakfast at Roast. mmmmm
It was fortunate for them I had a meeting at the House of Lords. They were treated to a private tour of the Palace of Westminster and learned all sorts of funny things.
The Speaker's Chair has a canopy. Originally had curtains hanging from it. He was obliged to remain in the House all day so when he wanted to relieve himself the curtains were drawn, the cushioned seat came off and his business could be concluded. Apparently Members had to stand, cough, clap and stamp to disguise any sound effects!
Well that's what I understood from my friends' excited account of the tour. They don't speak English so something could have been lost in translation! Hope I haven't just rewritten history. lol
How did it go, Annie? Can't wait to hear how you got on......hope it wasn't all toooooooo tiring and, by asking how it went, I am not expecting a full report, written today
You are a credit to our community, Annie! what a good contribution. On members day, too, I hope! I'm gutted that I'll missing the evening meal. Recap the next day, Annie? You take care, my friend
oohhh Wendy what do I appear to have agreed to do on Members' Day?! I've just looked up the thread and can't imagine what I might be roped into. I'd hoped there would be no audience participation! lol
I shall certainly fill you in if you can get to Members' Day and will look forward to seeing you looking tanned and relaxed after your luxury holiday and hearing your news.
I'm actually a bit scared about Members' Day. It feels like it's being done to me rather than I'm having an active involvement. A bit like school. eeek I was a terrible pupil!
I'm having a lazy Sunday having missed my train from London late last night. There were interrupted services on the tube so the parting arrangements at Liverpool St and Paddington got a bit complex and when I did get to Paddington I got on the wrong train and had a mad last-minute dash to get on the right one.
I'm taking it easy today. Have put my feet up and am getting on with the arrangements for 17th May. I had to abandon the My Fitness App last week - far too much gourmandising and not enough exercise until we got on Boris Bikes on our last day yesterday. I think my French friends will have loads to talk about when they get back home!
Thank you Annie for making your voice heard in the fight against ovarian cancer it is much appreciated. I wish there was something we fellow sufferes could do to make one big difference. It would be great if a cure were found in the next couple of years. I already sometimes feel powerless - god knows how I would feel if there were no more roads to go down, nothing left to try x
I haven't seen you post before so it was really lovely to read your comment.
There are many options available. I'm convinced we're very close to finding some new ways forward with this disease. We should never just give up.
I do whatever I can. Unfortunately finding a cure isn't my area of expertise but I do think we can lobby for better treatment, for justice, and do what we can to raise awareness to prevent more women being diagnosed too late to hope for a cure.
Not wanting you to do anything except spill the beans on the H o L experience! Any gossip!!!! Enjoy your lazy Sunday. We're off out to celebrate Ruby Anni soon did you see Gwyns lovely poem? Lovely! See you soon. Back on the diet tomorrow......I've fallen behind a bit lately too
gossip?! well it was astonishing. Made me wonder whether we shouldn't be thinking of campaigning for a Republic and it was interesting to act as translator for my French friends. It stimulated a fascinating debate I can tell you!
But Wendy this is your weekend. Enjoy every moment. Gwyn's brilliant keeping in touch with everyone's high moments and holidays. She's got a photographic memory and doesn't miss a thing!
I must say that Lord Saatchi never replied to me re drug innovation eg ibuprofen, aspirin, etc. I sent him a letter in December, and an email in February, and never even got an acknowledgment. And his wife died of PPC. And he put a bill to the H of Lords re innovation in treating cancer.
I am not amused.
But glad you enjoyed House of Lords. Pity you couldn't nobble Lord Saatchi!
Well we can ask about making a representation at the House of Lords. I'm joining the All Party Parliamentary Committee on Ovarian Cancer with the next meeting in June. There are peers on that group so if Lord Saatchi isn't interested we could identify more proactive figures.
I used the meeting to find out how the system worked and don't intend to give up now. Let's persist. A good way forward is to work with the charities concerned with Ovarian Cancer such as Ovacome and Target, etc.
Thanks, that is interesting. Ovacome haven't been a great help so far - they just say that the case for ibuprofen, aspirin, and other NSAIDs is not proven, and one oncologist on the panel was not that impressed. See my blogs - it was Richard somebody. But hope you can do something.
It is Target Ovarian Cancer who asked me to join the APPG for Ovarian Cancer. I think that charity is more involved in political campaigning and has an active interest in the regions.
I don't think we should accept that a single oncologist on the Board of Trustees isn't impressed. Oncologists aren't impressed at a lot of alternative or complimentary therapies because it is not part of their training. I take the view it can't do any harm if taken sensibly so why not try it - it certain helps my arthritis.
I'll do my best to collect ideas and make representation. I haven't started on the group yet but have contacted my MP who's in the group to see if we can arrange a pre-meeting discussion to get him on board.
I know. It is just that with further research I am convinced, because the scientific evidence is there, that aspirin, ibuprofen and the like will become a mainstream treatment, if further trials are done. Trials are being done in various cancers (see cancer research uk), but it is all so slow, and I would like it speeded up. I asked Ruth to take it to the whole board, which she agreed to do, but have not heard anything further. Metformin is another drug where trials are glacially slow to materialise, though Ovacome say that one is starting for ovarian cancer soon. This again has a lot of scientific evidence behind it. My wish is that all this could be speeded up, by oncologists being more willing to be innovative. These are cheap drugs. They are not a magic cure, but they will help a fair number of cancer sufferers.
In haste - as I'm dashing out to childmind today - the news today about the cost of cancer drugs should open up debate and it's time to act to raise awareness of other treatments.
Must dash - but will continue later. xxxx love Annie
Thanks, Annie. To be fair, Ruth did say that my blogs had aroused a lot of interest. I wrote to another cancer charity about it all, can't remember which, and again got no acknowledgment, far less anything else.
I'm shocked you didn't receive a reply to your enquiry. Should we get together to send another letter - and chase up for a reply?
I think the charity Ovarian Action do more research but it's limited to their funding. We could still pen a letter about the Ibroprofen/Aspirin debate.
I am a bit disheartened by all the effort I have gone to already, to no apparent avail. I heard Lord Saatchi on the radio this evening, and apparently his bill is being put forward tomorrow, I think - didn't catch it all. I was looking through all the bumf I get in the post and lay aside, and found something from Target Ovarian Cancer - don't know where that came from - so sent off my details to get involved with them, and said in the form I was happy to speak to the media, among other things. If you could give me your email address, could forward to you the email I sent to Lord Saatchi which had everything in it. I did that to harley as she was going to write to him too, but last thing I heard she hadn't managed to get round to it.
I have a feeling the charity which didn't reply was Ovarian Action, but not sure - could check emails I guess.
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