I havnt posted on here in a while so thought I would My wife is still doing well with her treatment and the cancers are still under control , however financially we have been hit time and again
The first was after her PIP interview deemed her no longer applicable for the higher rate and downgraded her to basic rate even though her diagnosis is still terminal Then because the PIP we reduced they then rediced the Housing Benefit, how that works i cannot figure out. As you can imagine this has had a serious effect on our finances, just depressing my wife even further , questioning why she even fights so hard to stay alive
All these tests seem to be based around physical disabilities and fail to take into account the mental anguish of living with cancer, you look ok on the outside but inside your fighting for your life
It's just so soul destroying
I'm sorry to hear about the benefits difficulties you're having. It might be worth speaking to your wife's Macmillan Nurse and to PALS for support with appealing against the decisions. I understand the exhaustion involved with everything, it's well worth having someone fight your corner.
I hope it goes well,
If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish. What is a Community Champion?
It's has been a while since you've been on site really nice to see you back but sorry to hear that you are having problems with your wife's PIP payment and the knock on effect.
Did you appeal the decision.
I would like to suggest that you telephone the support team tomorrow and to speak to a financial expert and explain the situation to them and they should be able to talk you through the appeal stages.
They can be contacted on
0808 808 0000
The lines are open between 8 am and 8 pm every day but I would suggest you make the call between 9 am and 5 pm Monday to Friday the call is free from landlines and mobiles. The financial expert will take you through all various stages of appeal, you can talk to them about the housing benefit at the same time.
When you phone it would be helpful to have all the correspondence to hand to enable you to give the team the answers to any questions they have.
Other organisations like Citizens Advice and AgeUk can also help but make the Macmillans telephone support team your first call and let them guide you on the next steps.
Hopefully you will be given some good news and will stop your wife becoming even more depressed no one should made to question why they should keep fighting, it is sad but oh so true that people think because you look good from the outside that you're okay on the inside. In another group I'm connected with we promote the saying that all disabilities are not visible and it's amazing how true it is.
I hope that you can get your finances back on tract soon and you get back some of the reduced benefits and who knows the financial team might be able to tell you about other benefits you and your wife are entitled to.
Don't leave so long to visit with us again and please do come back and let us know how you get on.
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Thanks for your support and kind words, but my wife doesn't have anyl support, we don't have a Macmillan nurse , we only ever see her consultant every 3 months , that's why it feels like we're just fighting the system on our own, no one seems to be there on our side
I have had to find things out be searching and reading, we only just found out that while she was on the higher PIP we could have claimed free car tax, but we just never knew so that was £500 lost, when we did find out after a chance conversation I filled in more forms and at least now only pay 50% car tax, but even that had to be payed up front as their system can't do DO on part car tax , what a joke. I did try and explain to theme about her being on higher PIP the previous 2 years and included paper work to prove it but nothing came of it.
The same thing happened with the Housing benefit, it was calculated on a full months pay , as I'm still having to work to try and make ends meet, but there were months when I had to take time off for hospital appointments and when Mel was very poorly, I assumed, wrongly, that they would amend the benefit to reflect the drop in income, like it says in their advert, but with everything that was going on I forgot tof keep a check, it only came to light when they reduced the benefit because I managed to get a small pay rise they were straight on it before id had a chance to inform them and reduced the benefit, when i queried why it hadn't gone up in the months when my wage was reduced, the answer was did you tell us and it was to late to claim anything back.
I count myself very lucky in that my wife is still with me when I know of friends and family, and people on this forum who have lost loved ones to early, the stress of dealing with cancer should not be aggravated by the worry of financial difficulties and the constant need to justify this and that, form filling which just drags you down further into a black pit of despair and anguish
You are right. You should not have to deal with financial worries on top of everything else but the harsh reality of this bastard cancer business is that we are all pretty much on our own. Ok so we must be one of the lucky couples that do have a mcmillan nurses number in our phone and she is great but we still have to do most of the leg work to get things done. It's not as if you are dealing with one department as it's one problem after another. Hours sitting in shitty A&E waiting rooms full of people after a sick note or those that have had too much of a good night out. You would think that after two and a half years of this shit you would somehow be able to go straight to the ward ect that you need but no. My wife is now at the point she is to week to sit upright for long let alone stand so 3,6 or 9 hours in a hospital waiting room is a mamouth ask for her. The system is shit a lot of the time and the likes of you and me end up running ourselves into the ground trying to juggle everything. Can't even begin to think what all this would be like with financial worries on top. I'm fortunate she had a good job and pension so don't have that worry but truly feel for you. This whole thing makes me so f---ING angry.
Keep your head up and try to keep on swimming upstream. Best I can do I'm afraid as far as inspirational quotes go without foul language and we can't have that.
My tip is to just keep telling everyone that everything is fine. They give up asking in the end.
I have been looking after dad with dementia for 18 months. A year ago I had to give up work (either that or have a breakdown) as dad stopped eating and lost 3 stone in weight. I was at the end of my tether then last April we found that he had terminal oesophageal cancer. No treatment for dad due to the dementia and his poor physical state at the time. They gave dad a stent and 11 months later dad is still here.
I have suffered financially throughout this awful time. Dad was on the lower rate care component of DLA at the time and I of course applied for the higher rate as this would allow me to claim carers allowance. We were turned down twice and I was without any income for 3 months.
I spoke dad's head nurse at the gastro clinic and she sent a special form DS1500 to the DLA which automatically fast tracked him to the highest rate of DLA and I could then apply for carers allowance.
The DS1500 is a form that says the patient is not expected to live more than six months but this is loosely applied. It has to be filled in by a health professional. My dad's DLA is now guaranteed until 2022 so if he lives that long he will still get the highest rate.
It is worth looking into as it automatically gives the higher rate and the DLA PIP people can not argue with it.
It is soul destroying, you do your very best to help your loved one and as far as I am concerned we are penalised for every little thing.
Wishing you and your wife well.
Hi yes that was the forms that put my wife on the higher rate initially when on top of herseconday cancer she was diagnosed with brain cancer however 2 years later because she hadn't succumbed to it but thanks to treatment and a very strong will she was still with us , she had to have an interview and was deemed no longer eligable for the higher rate and was down graded to standard rate.
We raised a few points with them , that we wernt happy with
Then today low and behold another bloody form to fill in this time a work assessment form It's a funking joke, pardon my french, I'm sure they just do it so people get that pissed off or scared there going to lose what little they get they do just give up
watchman They seem to be doing everything possible to keep every penny but that is disgusting especially when when someone is fighting cancer. It is a real kick in the teeth. When I applied for dad he already had advanced dementia and then the cancer on top. I had to move in 24/7 as he had lost 3 stone in 4 months, was unable to look after himself and had to be supervised to make sure that he ate something as he was unable to understand that he had not already eaten and was unable to open a can.
I think they turned him down because he could still take himself to the toilet. He couldn't boil an egg though or even compose a shopping list. Bloody ridiculous.
Yes it's a joke and I know that when dad goes I will have the joy of signing on for job seekers allowance at the age of 62
I hope you get it sorted out and that your wife continues to be strong.
Wishing you both well.
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