My wife was diagnosed with def with NN Folicular Lymphoma in 2011. Five different chemo combinations, a stem cell transplant and radio therapy later she is now 2 RCHOP and three admissions later just received notice that an appeal against the removal of her PIP and my careers allowance has be turned down. As there is no cure, only treatment it’s confusing? I have retired early so that is why PIP has been essential for the past 5 years. Any advice on what to do next and help available?
Welcome to our community forum I hope you will find it supportive, I do. I cannot answer your question but you might want to see if the MacMillan cancer charity can advise you or your local Citizens Advice. We look forward to hearing how it goes and how you and your wife are doing, I often find we seem to share the similar fears, what if’s, thoughts and feelings.
I am sorry to hear of the problems you are having with PIP and your carer’s allowance. I think Erica’s advice is very good. Macmillan sometimes have people based in hospitals and they are used to dealing with people with cancer needing financial advice. Again, Citizens Advice may be able to help, although there can often be quite a wait to get an appointment. Good luck
Hi, I agree with Erica, you need to take as much advice as you can before trying to appeal the decision. I was turned down flat despite being on full time dialysis and intensive chemotherapy and heart disease. You might find this article from last year interesting.https://www.mirror.co.uk/news/politics/tories-told-get-grip-record-12744613
I am so sorry to hear what has happened with regards to your financial situation with the removal of your wife’s PIP and your carers allowance being stopped. I can imagine it is incredibly worrying and stressful. I would advise speaking to Macmillan as they have specially trained advisors who can offer support and expertise in regards to welfare, they’re available on 0808 808 00 00 Mon to Fri 8am-9pm.
As others have said, Citizens Advice can be very useful and this information on appealing PIP decisions is worth taking a look at - https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/pip/appeals/mandatory-reconsideration/. First step is appealing, as their website says “The latest government statistics show that more than half of PIP decisions are changed after mandatory reconsideration or an appeal to a tribunal, so do challenge the decision if you think it’s wrong. It won’t cost you anything to appeal.”
You can speak with Citizens Advice Adviceline on 03444 111 444 Mon-Fri 9am-5pm.
I am so sorry you and your wife are in this decision - I hope some of the information is helpful, please let us know how you get on.
An update on my previous post of last year. After an appeal the PIP withdrawal was upheld. We decided to take it to Tribunal and the hearing finally came through for las Friday.
Armed with folders of evidence, all of which was copied and sent to the court. Every bit of recent evidence including four more hospital admissions and tens of doctor appointments and treatments was added.
On the way to court we had a phone message to say our appeal was granted and so accepted and PIP was to be reinstated. We are waiting now for confirmation so that we can start the battle of regaining all the payments not made for the past 14 months. We are led to believe that these will be paid, but our experience won’t let us believe that!
We are angry that it has needed us to be so determined to fight this case, despite the misinformation, and hours of phone calls and multiple communications both by email and by recorded delivery letters. The latter needed because so many letters and so much evidence was list or misplaced.
We are fortunate that we are able to fight our corner and battle for what we believe is an injustice. It is almost as if the process is made deliberately difficult to wear down applicants, which I am sure it does. We have been told that 80% of Appeal Cases sent to Tribunal are granted. What a colossal wast of time, effort and money.
It feels like a hollow victory as we continue the fight against Lymphoma and the affects of so much treatment.
One ray of light, after all the fantastic care my wife has received after 11 years a remission. Thank God for the NHS despite the efforts of DWP and its appointed private agencies
Gosh what a battle, it was lucky that your wife had you to support her with the appeal process. With many conditions, not only blood cancers, people are really struggling and as you have shown in your post it takes a lot of persistence, organisation, time and effort to appeal and for me I would feel stressed and fatigued and it would be all too much and I would just give up. Yes, thank God for our wonderful NHS. Did it cost you a lot in photocopying, phone calls and postage?
Well done on fighting till the end, its not an easy process but the end results paid off. Can only imagine the stress and impact this must have had on you. Fingers cross everything goes smoothly in receiving the back dated payment you rightly deserve.
Urgh this is something that really angers me. Well done for not giving up. I have had personal experience of this (my PIP was withdrawn after an assessor was sent to my house) but I didn’t have the strength to fight it.
I have also seen and heard many similar stories and not just with blood cancers. I did flag this up to Bloodwise who did some investigating but so far they haven’t got any further. It is something I feel really strongly about but there are just so many other things to campaign about too!
It is so important to fight, and thankfully we are able to fill in the forms, make the calls, send the emails, collect the medical evidence. We refused to be ground down so that we just accept the ruling. Between 70-80% of claims, where it goes to tribunal are found in favour of the claimant. That’s means that DWP have decided to cut PIP incorrectly wrongly in 7-8 cases out of 10!
To me it seems clear that those profit making companies, contracted to undertake assessments are tasked to reduce the PIP and other payments and support. I wonder if part of the fee paid to them is dependent on reducing the number of claims.
Hard not to be cynical. You need to be strong and determined and acquire every piece of evidence and send it. Record every visit, appointment, hospital letter etc. etc… yet by definition claimants are ill and battling illness. Treatment is disabling and undermining . It’s an unfair battle and DWP is exploiting that fact.In my view, and I would love to be proved wrong, this is a deliberate policy decision. A few years ago I saw a sign by a Disabled Parking place ‘ I f you want to take my parking place then please take take my illness to.
I saw to DWP If you want to take away my PIP then please take away my Blood Cancer too.
Sorry about the typos my brain functions faster than fat fingers on an iPhone
Yes… I totally 100% agree and only hope that one day this is proven… what you say is what I’ve been saying too. Thanks for posting your experience in here, it will probably help others too, I know I will pass on your tips whenever I come across anyone…
On another note, do you have any experience with ESA?? My cousin is about to go to an assessment appointment (which she will have to get on a bus and travel an hour to). She has been getting it for nearly a year but now they want to ases her… even though she has a diagnosis of Myeloma
I have many years experience in Special Schools, teaching children with a variety of complex needs. The advice I was given to parents, when helping with benefit applications, was to say what your worse day looks like. We are culturally programmed to be positive and detail out best coping day. It is not lies to say how it can be, it’s a statement of fact. If you are 50/50 about an answer always give the worst outcome. Never answer with sometimes, ind vision, in my experience, will be seen by the assessor as the best outcome. It’s all about scores and a point here or there can make a huge difference.
It’s a mistake to think that your assessment is designed to help you get a benefit. The assessment must show that you, beyond doubt are entitled to help and support.
Get all the evidence you can to show any statement or claim you make is justified. What you say must be fact and not a judgement on your part.
It’s the worst day it can possibly be and not the best.
Anna, I get ESA, previously Disability Benefit. I had quite a horrible time in the years during and after treatment, having to attend several interviews to see if I was fit for any work (with the threat that my benefit could be stopped if I did not attend). G had to take me to the Job Centre on a cold bitter January day, two months before SCT when I could barely walk. When we walked in security asked G what time his appointment was. When I said it was for me the staff were appalled, and were so kind, getting me a banana and water. My previous medicals were tick box exercises and when my appontment came through 4 years ago I was extremely stressed, especially as I had just been given a diagnosis of heart failure (thanks HL).
I must say that the experience was completely different to previously (contract had been given to someone else) and I saw a wonderful nurse who just asked me about how I managed day to day life, and also was so worried that she thought I should go straight to my doctors after my interview. I am now in the Support Group which recognises that I probably will never be able to work again. I did a piece for Bloodwise last year which gives more details of my journey with finance. I also accessed my work pensions early, and these last two years have had a one off payment through my energy company (Warm Home Discount) which i had to apply for. I agree with @F51118 that you do have to give worst case scenario and MacMillan were great when I originally filled in the paperwork.
Thanks, very helpful
Thank you Louise… will take a look