This is what I wrote:
Dear Dr Wollaston
Personal independence payments
I participate in an online forum for people with secondary breast cancer. It is a great source of support and i have met some of the members. I was distressed to read the following post, posted at 1.30 one morning...............(your post Sue)
.................I also have a friend in Exeter whose pelvis and femur are disintegrating who has had her PIP reduced.
None of us is going to get any better, all we can hope for is a period of stability so it's hard to understand why secondary breast cancer patients' PIPs are being reduced.
To refuse a payment is one thing, to award it and then take it away is quite another. It's distressing at a time of stress, anxiety and fear.
I realise that financial resources are severely limited at present but it's the way these resources are being allocated and the manner in which it's done that is so questionable.
These problems don't affect me personally as I don't need financial support.
Thank you for reading this letter.
Dr. Sarah Wollaston M.P.
Member of Parliament for Totnes
House of Commons
Thank you very much for taking the time to email me.
I was so sorry to hear of your diagnosis and appreciate your concerns with regard to the experiences you have read about with PIP assessments.
I do hope the following information on this topic from the Department for Work and Pensions is reassuring:
Every year over £50 billion is spent to support people with disabilities and health conditions, over £7 billion more than in 2010. We should focus support on those who need it. PIP is designed to ensure support is focused on those with the greatest barrier to independence. Since its introduction, 29 per cent of claimants are now on the highest level of support, up from 15 per cent previously.
The Department for Work and Pensions is continually reviewing and refining the PIP process in order to improve its efficiency, effectiveness and the claimant experience.
New claims are now being cleared in under a third of the time they were in July 2014, at a current average of 16 weeks from registration to decision. The Government is committed to further improving this process. Assessments are independently audited to ensure that they are accurate and fair. There is a legislative requirement that two independent reviews of PIP are carried out, the Government has formally responded to the first's recommendations and is currently considering the second's.
A public consultation has just closed which asked how the assessment process could be made easier and quicker, with particular focus on how information can be shared between decision makers, lessening the amount of paperwork for claimants. A new feedback system will be introduced for claimants to talk about their experience claiming PIP, which will help focus reforms where they matter to claimants.
Thank you for getting in touch and if you are corresponding with people on this forum who are having issues with their benefits then please do encourage them to contact their MPs.
Dr Sarah Wollaston MP
I had a very prompt response from Dr Sarah Wollaston. It was basically just a government statement on PIP and other benefits but the statement did say that they were introducing a feedback system for claiments experiences with the system.
In addition she did say that i should encourage people i was in contact with who had issues with the system (I'm not one of those) to write to their MPs. I can send the reply in a PM if you would like
I have written. If you would like to read what I wrote I wil PM you but you have to enable me to do that.
Hi Sue and Bon, I will happily write to mine although sounds like Bon’s will be more influential, that said, I’ve contacted mine once before and she did respond and then wrote again explaining what she’d done, it wasn’t about anything medical though. Let us know how you get on Sue. Kxx
I will write to mine, she is the chair of the Commons select committee on health. I wrote to her about kadcycla.
I agree with everything you’ve both said Bon and Pumpkinsue, to consider doing this and to put you through so much stress is cruel and so unfair! I was thinking, do you think it would be worth contacting our MP’s, especially after the recent headlines about PIP and mental health claimants? Something that is relatively easy to do and if everyone did it??? Just a thought, even if they ignore us can’t see it doing any harm, Kate x
To have to go through this when you are struggling with everything else is appalling. We are none of us getting any better so why should you be getting less, not more help? Keep us up to date with what happens.
I think it's time those of us with the energy to do so made a fuss. It's one thing not to receive financial help to start with but quite another to have it given only to be taken away.
It sounds like you are having a lot to cope with with your jaw problems. Hope something can be sorted out. The alarm bells ring with every twinge i feel in my teeth and gums.
Good luck with your scan result. Keep in touch.
Hugs Bon xx
Oh pumpkinsue, I am so sorry to read this. This is absolutely out of order! The only thing I can suggest is turning up at the "interview" as soon as you can manage after your operation (good luck - it sounds awful, but at least you are now getting it after such a long wait!), when your bruises, bandaging, etc, are at their most dramatic!
I can't understand how they can legally target people early after it has been awarded for a certain period. I would have thought that a time period - selected by them - should be legally binding!
I hope you manage to enjoy Christmas as much as possible - try to put the DWP b******s on the back-burner of your mind (or, preferably, on the back-burner of your oven ) for as long as possible. Not easy, I know.
As I have already said by text, I am absolutely disgusted by the way they have treated you. I am glad that at least they have acknowledged that you are entitled to PIP, but really upset that they have reduced your amount! I really don't know how the con artists manage to avoid getting caught out when they are going after the genuinely deserving people - several of whom have also posted on here.
Oh Carolyn - yet more worry and anxiety! And waiting! The amount of patience we all need would be enough to power the world for a million years if it could be harnessed!
Hello Tink. No, have not been told that (yet!), but, going on what people are saying on this thread, I expect to be "booted off" any day now. It seems that the DWP is becoming much stricter, but without regard for the people who need (deserve) the benefit. I suppose they are chasing for fraudsters, but looking in the wrong direction - ie.the easy targets.
On the "bright" side, at least the DWP doesn't consider you to be terminal, even if your GP does
Hugs and good luck with your claim.
I haven't been here for a long time so hello to everyone new and old.
I had a DS1500 signed by my GP for the renewal of my PIP claim and have been told by the DWP that this is not enough to qualify me for any PIP and I will need to fill in a complete form. The DWP phoned my GP and based on what she told them (which was written in the DS1500) they have decided that I am not 'terminal' for the purpose of awarding benefits and therefore ineligible to claim under special rules.
Has anyone else been told that they aren't eligible for special rules even with a DS1500?
My Macmillan benefit advisor is very good and she sorts all my forms out for me. I have a PIP assessment on Thursday 23/11/17 and they are coming to my home. My Macmillan nurse and benefit advisor said I would get PIP so I will have to see.
Have you a benefit advisor that could help you with your forms.
Thanks, Kate! Also, good news (well, encouraging anyway) re your doctors' comments. Hope you are successful.
Hugs. Barton. X
Hi Barton, just wanted to let you know I’ve just been to my GP about something else and she said the PIP people had phoned her, when I applied via the normal route they asked if they could contact her. Anyway she said they asked the usual questions which she answered according to my medical history and at the end asked if she thought I should be fast tracked and she answered, all things considered, yes, I think she should. So will see what happens...she said she answered everything honestly and she does believe I should be fast tracked, hence her reply! I was so surprised but also pleased that she was happy doing it.....will wait and see what they say now!!! Hope you’re still enjoying your great news, we seem to get so little best to make the most of it. Hope you have a lovely weekend, Kxx
Well done, Carolyn - I bet it was a bit of an ordeal. Did you ask them why you were getting assessed after 2 years, when you had been awarded it for 3? So unfair to everyone who is claiming legitimately!
Hi ladies, thank you so much for advising I think I will try my GP for the DS1500 again, it''s such a pain to be burdened with this on top of everything else isn't it? We just don't need it. Hugs to you all Xxx
I was previously on DLA (the predecessor to PIP for those that didn't claim it) and was reassessed for PIP a couple of years ago when PIP was first rolled out. I did go through the 'normal' channels at that time and was refused the claim. However I then had spread to my liver and my GP was quite comfortable in filling out another DS1500 (I had gone down this route with my original application for DLA). I was then awarded it with no other changes to my claim so they gave it based on the DS1500. As your GP is very familiar with your situation and knows how our disease can change I would ask her to fill out the form again, that way you shouldn't have to jump through all the hoops to get PIP.
Hi, definitely see your GP and try and get another DS1500, otherwise it will be lots of form filling and evidence gathering.
Hello Sarahlousie, not sure if I can help. I expect you have read that the DWP is hounding poor Carolyn after only 2 years, so it looks like they are really cracking down on people. It seems to me they are going after the genuine (easy?) recipients first, which is extremely unfair. I think if you previously went down the GP and DS1500 route, it might be best to stick with that.
Sorry, really not much help. Just to comiserate really. Good luck, and let us know how you get on.
Hi all, Ive just received a letter from DWP informing me that my DLA is due to stop giving me 2 weeks to put in a claim for PIP or by the 1st Dec. I've been on this benefit for nearly 7 years as I am living with secondary breast cancer and was awarded it by my gp signing the DS1500 form, so far he has signed this form twice, initially it had spread onto both lungs and further down the line it was found on my liver. I am on Herceptin and Arimidex indefinately or until they stop working and whilst I feel well today I get very bad days where I'm stuck to the sofa with lots of joint pain, extreme fatigue, as well as very bad migraines I have as many as 4 a week. As of my latest scan the lungs are clear which is amazing and the liver is stable, however my onc has explained that whilst my current dx is good my secondary cancer will always be there its just that the cells are so tiny the ct scan can't pick them up at the moment. She has told me we will deal with any changes as and when they come along. This letter has really shaken me up I don't know what to do? Do I go back to GP or Onc and get the to refill another DS1500 form in? Or do I try and apply for PIP through the normal route, I think if I do it this way they will stop my benefit. The benefit was supposed to end next April so this has come as a shock. Any advice ladies?
i suspect you you are correct...so don't leave it....in case it disappears. If you are on it and it does disappear, they wouldn't normally discontinue for those already on it.
This seems like a minefield - some people getting it and some not. I thought about applying after some people suggested that I could be entitled, however I'm still well enough to work so decided in the end, it's probably best to leave it until I really need it. I'm under the impression that the rules have tightened up recently maybe which could explain why some people have got it easily and others are struggling. Or is it only offered if you are at a certain stage of the disease? With people living longer and longer, I suspect government are trying to keep costs down.
Hi Carolyn, is it paid weekly or 4-weekly? Weekly means special rules and that's very worrying. If not then I think it says you can be reviewed whenever. Just remember it's your worst days you need to talk about and take someone with you. They can be very sneaky, eg offices on 1st floor no lift or no nearby parking - oh you can climb stairs or walk 400 yards so no mobility issues. Oh you came on the bus on your own so can look after youself. If you can use a microwave you can cook for yourself.
Carolyn, just a thought.....was your pip form filled out discussing your disability.....or was it done under the special rules as that qualifies you very definitely.....as it does all mets ladies...if someone merely discussed your disablement then that might be seen as needing reviewing, whereas a terminal diagnosis won't ...
if if you follow me?
much love, Moijanx
Hello Kate. I'm glad to read that your GP is supportive - that makes a big difference, even though, as you said, her hands are tied. I think it really wrong, but I think you are probably right - it could be a postcode lottery type of result. Sad though that is.
Hugs and good luck. Barton.x
Hi Barton, thank you but I didn’t feel she wasn’t supporting me, I really felt like her hands were tied. I moved a year or so ago and really shouldn’t still be under her practice but she stuck her neck out to let me continue. I also went to see the age concern woman again, although I’m not a pensioner they deal with this type of thing at my hospital, and she just reiterated what I’d been told. She said it is nothing at all to do with being diagnosed stage4, you could be stage2 but if you’re unable to do basic daily needs ie wash/dress yourself, or prepare a basic meal ie microwave, or a sandwich etc, then you are entitled to the payment. I am going to apply via the non 6 months to live route again and support it with a letter from my GP, along with a couple of letters I have from my Oncologist. Age concern lady did say having been refused 2 years ago usually makes them look more favourably but not to get my hopes up too much. Also said thought there was no chance of me getting the mobility part as they have really cracked down on that, as I’ve said in a previous post I do think it’s a regional thing too, as many of these things are! Thank you again, I do appreciate your support, Kxx
Oh Kate, I'm so sorry to read tgis. You have been treated really badly, I think. I'm really surprised your GP isn't really supporting you in this. I'm not surprised you are feeling negative about this. I'm afraid I am stumped about what to suggest now.
Please let us know how things go from here.