Hi All

i am so frustrated with the benefits system!!

I have been trying to find out about how I can get some sort of benefits for my wife who cares for me and since being diagnosed with Pseudomyxoma Peritonei has had to reduce her working hours so she can cope.

It appears that unless I am claiming something she can't be classified as a carer - therefore despite changing dressings (as the district nurses can't be bothered) and taking me off my chemo bottle and flushing my PIC line we can't get anything.

Any idea if there is a section on this site that one can get some help from someone who knows how to lay the system?


  • Hi , sorry to hear the challenges you are facing

    Do talk with the Macmillan Support Services as it provides lots of information, support, financial guidance or just a listening ear.

    Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

    All the best

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Good afternoon everyone.

    I am new to this forum, I was wondering if anyone can help me please.

    I was diagnosed with Myeloma in November 2021 along with being diagnosed with Coeliac Disease June  2021 & recently Osteopenia due to my Myeloma blood cancer.

    Since Novembers diagnosis I have just completed 6 cycles of chemotherapy (6 month) now I'm waiting for stem cell treatment anytime soon.

    I was in full time employment & receiving SSP I've been trying to get PIP with help of citizens advice but my assessment came back with Zero points which I have found absolutely shocking as the only other income I have is my wife's part time wage & currently using our savings. Anyways the woman from citizens advice has appealed against the result of my PIP still waiting.

    My wife & I have worked all of our lives & never needed any benefit of any kind & now in my hour of need I can't get anything, I'm not allowed any UC because of our savings that we wanted to keep for a rainy day but being penalised for being over the threshold according to UC. I also had a payment from a critical illness insurance that we had paid in for over 25 years which we paid off all of our existing debt & again put the remaining money away, not for me but for my wife incase anything does happen to me following my treatment you just never know.

    To me we are being penalised for having savings that we have worked hard for all of our life & at only 54 I still think relatively young. Like I say the remaining money that we do have has been put away for my wife's future.

    Can anyone on here guide us to the right people? 

    Many thanks Peter

    Many thanks


  • Hi Peter  and a warm welcome to the Online Community although I am so sorry to hear about your diagnosis and the challenges you are dealing with….. I know this journey very well as I have had two Allo (Donor) Stem Cell Transplants for my rare type of Non Hodgkin’s Lymphoma.

    I see you have posted your question our Ask an Expert section, do allow a few working days for a reply.

    You could call the Macmillan Support Line open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 and talk directly with our benefits/financial guidance team.

    I did eventually get awarded PIP but it took a few appeals and 7 months…… I was severely affected by my second SCT so ended up in a wheelchair and needed a lot of support.

    PIP is not awarded because you have cancer but on how your physical and mental capabilities are affected.

    I understand your frustration as SCT, as great as it is can have a massive effect on our finances. If you hit my community name you will see my story, but we live in Inverness but my SCT unit is in Glasgow so we had 11-12 weeks in Glasgow with little support especially the cost of the 30 odd 9 hr round trips for consultations, treatments and clinics.

    As for the actual SCT process - I do see you have joined our dedicated Stem cell transplant group. This is a safe place to talk with others who have been in the SCT rollercoaster.

    Always around to help.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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