Well sort of - and in the following three ways:
(1) Some people who have claimed DLA under DS1500 rules are finding that when there claims are re-assessed after three years that they are losing their entitlement. The DWP are apparently saying that as they have survived for three years they are probably not going to pop their glogs in six months (which is the criteria for DS1500).
(2)Apparently, NICE have said that Fulvestrant should no longer be prescribed (Fulvestrant is a steroidal AI, which is prescribed when non-steroidal AI’s such as Letrozole stop working). So for those with oestrogen receptive secondary BC, the only alternative will be chemo.
(3) Despite a Government advisory body saying that stereotactic radiotherapy such as Cyberknife could save in the region of 3000 lives per year, the Royal Marsden, Mount Vernon, and Barts are finding that three out of four patients are being refused funding by their PCT’s (because only 28 out of 150 PCT’s fund it).
I think this is all worse than a good kicking, because these policies can kill.
Anyone have any feelings about this?
Wow -that’s appalling! All of them!
ref 1 DLA - thank God some of us DO now survive beyond six months. But we were given it as an “emergency” so we didn’t have to wait months for it. That doesn’t mean that should we survive beyond 3 years we are suddenly able to do things we couldn’t before! I’m coming up for 3 years on this basis sometime next spring so looks like my poor brain is going to have a “situation” to face!
ref 2 Faslodex - that’s outrageous. I’m also on AIs and this was one of the reserve battery of treatments. It works - yet too costly??? I feel quite upset that my life is in the hands of a financier and not a doctor who will treat me with what I need, when I need it. CHemo as an alternative is NOT attractive. Perhaps they’s like to try it (I know, I can hear myself sounding very childish at mo. but honestly - have enough to cope with without fellow humans playing God…)
ref other one. Well - cant remember what it was now I’m so worked up… Enough of my whinging…
Breast cancer patients are obviously being uncooperative by surviving for so long. Naughty people.
All that money that people work hard to raise for cancer research and then people are refused new drugs and treatments because they cost too much.
Actually… had supper now and have have time to reflect…
One thing I’d like to say about DLA is that it was given to me to “help make my life easier”… I didn’t even apply for it but my McMillan nurse did it all. Said if I cant do cleaning easily. I could use some of it to get a cleaner in - which I did; 2 hours per week.
But as a direct result of living longer (hooray!) I am currently having to replace my entire wardrobe and footwear. This is where DLA has been so helpful this year – what would I do without it?I was a housewife and mother when diagnosed and cant get any benefits (or paid work!). My weight has shot up by two stone since I started on AIs (a known side effect) and my clothes most certainly no longer fit!. In addition, my bones in my hands and feet have expanded - not sure if due to bone secondaries or to the bone strengthening bisphosphnates I have to take. WHatever the reason, trying to get into closed-in winter shoes has made me realise I need new shoes too. My shoe size has gone up a size and the width to EE. Non-standard shoes are NOT cheap!
Sorry Lesley I missed this post first time around, I try to keep up but must have missed it. I did post about the Faslodex as I cant believe it can no longer be prescribed, I also noticed last week that Eribulin for secondary bc is also being stopped. I am currently on letrozole, as I think you are, and then Faslodex (fulvestrant) was next in line!! I knew they were changing rules for DLA but didn’t think they were touching special rules patients, is there no end to this. I find this all so depressing, it is our lives they are jeopardising, as someone mentioned what is the point of all these kind well intentioned people raising molney for cancer research when the patients can’t get the drugs they need.
Best wishes all
Marina x
I also missed your post until today Lemongrove.
I’m upset by all of them but the Faslodex decision is the closest to home for me as I was hoping to be able to have it at some stage (I’m still on aromatase inhibitors right now but am on my second one and statistically am not likely to get much longer out of it). From what I’ve seen on one of the US support boards, some people do get a response to it after AIs have failed so I was really hoping to give it a go. I’m not sure if I’ve totally understood the NICE decision though - are they saying it can’t be used at all, or just not where aromatase inhibitors could be used first?
I’ve never really felt emotionally up to campaigning on stage 4 issues before but am thinking about it now.
Yet another kicking, that may be of interest. The Sunday Times reported this week that the health Minister has just refused an offer from Accuray (who make Cyberknife), to install Cyberknife free of charge in every NHS Trust. Accuray said they would install it and let the NHS use it free of charge for two and a half years - after which the NHS would be able to buy it interest free.
This effectively means the Govt are going back on their word. When they set up the NRIG, they said they would abide by their recommendations. The NRIG reccommended that stereotactic radiotherapy such as Cyberknife should be funded and said that if available, it would probably save in the region of 3000 lives per year.
Apparently a number of MP’s are going to kick up a fuss in the Commons today, so we’ll see what happens.
That is staggering, Lemongrove.
Is there an ongoing campaign about it?
Is it the sort of thing that Thirty Eight Degrees could help with?
Absolutely disgusting lemongrove …we have a government that intends to kick the most weak and vulnerable in our society.
One of the things that wasn’t mentioned in the Sunday Times article (but in the document they refer to), is that when Accuray made the offer to install Cyberknife free of charge, the only condition was that the Govt set a national tariff for stereotactic radiotherapy, (which was what the NRIG recommended in it’s recent report). Maybe I’m being too cynical, but could it be this was the sticking point?. Becasue once a national tariff is set, PCT’s will be inclined to fund it, and that means money for treatment.
Lavender Lassie
Nothing at all to do with the thread, but when I saw your pic of the back of your head I had to laugh and look twice, I thought it was me, stunning hair.
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My feelings on this is sheer shock and horror!!! How can they do this too us, we are unfortunate but we all paid into the system and due to this absolute nightmare of a disease I am now having to claim DLA they only granted it to me for a year!!! Dont really know what they think will happen in a years time I suppose they are hoping that I will of expired by then??? Its absolutely disgusting. I look upon it like this I’m claiming money that really keeps me living buying organic fruit and veg is not cheap, also I probably will not be around to claim my pension, at least this way I get some help when I need it and am able to at least try and do the best for myself and prolonging my life. It was a nightmare when I applied for the DLA (with signed DS1500) this year it stressed me out so much and took them 5 months to decide!!!
The cyberknife treatment should be available to those that would benefit, apparently I do not qualify for cyberknife because my mets are tiny and too many of them on my lungs, and to back up what Bertie said about raising money for cancer research whats the point if all they are going to do is deny us the drugs and treatments that may help us survive for longer.
Lemongrove what can we do?? ie: is there anything to sign or who would you recommend we write to in order to complain.
Sending love and light
sarahlousie xxx
Minor diversion, thank you Jane, I should get another pic taken to show the mop of curls it is now- my mother would have been thrilled with me!
MPs take note of how heavy their mail bags are about issues, so I suggest writing, and getting friends to write… Jane
Wonder what the govs position would be if their loved ones were to get bitten by breast monster disease, a little differently I think . they seem to find money for non essentials, oh I will stop here coz , I could go on for ever… …