[AMorgan123Participant]

My husband had a letter from the DWP today to say that his DLA is being stopped as he currently doesn’t score a high enough mark on their points system for PIP. Along with losing DLA, he also has to send back his Blue Badge.

FYI: My husband was diagnosed with Multiple Myeloma (blood cancer) in August 2012* and was given a life expectancy of 5-7 years. He took early retirement in October 2012 and then had a stem cell transplant in February of 2013 and has been in remission since July 2013. Even though he is more mobile than 12 months ago, the side effects of the medication he’s on and the damage from the cancer do still cause him problems. He is still terminal, it just a waiting game for the cancer to come back as there is no cure. *It was around this time that my Polymyalgia Rheumatica first flared up.

This decision now means that we only have my salary (due to my own illness I’m on a 3-day phased return to work for the remainder of the year) and his pension coming in.

I’m at the early stages of PMR management. I was on 8mg prednisolone, but had to increase to 10mg a couple weeks ago as I was finding it hard to go to work without aggravating my PMR and fatigue.

As a further piece of information, I lost both my parents in 2006 and from the inheritance we paid off our mortgage and now don’t have any large outstanding debts. We also have a small pot of savings that we need to last for as long as possible (for when the ‘time’ comes).

Also, neither of us have family who can help. My husband is the last surviving member of his family (he lost his sister in 2000 and she wasn’t married) and although I do have a sister in Cornwall, she is a widow (her husband died in 2011), is unemployed and has depression and so has her own difficulties to deal with.

Are either of us entitled to benefits or anything at all? What are the cut off points that state that “you’re on your own kid”? Who do we go to in confidence to get a proper assessment of our current status and what we’re entitled to?

I feel that the fact that we have both worked all our lives, paid all our bills, taxes and our own way, now counts for nothing at all. What was the point?

[sukieParticipant]

Amanda, I am certainly no expert on benefit claims as I don’t receive any state benefits myself apart from my state pension. However, do seek advice from the people who understand these things. Macmillan in my area are wonderful and if there is a Macmillan nurse in the hospital your husband attends then I wouldn’t hesitate to ask her advice.

Hope you get this sorted very quickly,

Sue.

[avrilro55Participant]

I would suggest you get in touch with your local carers association. We have one in our village and she filled iut my forms enabling me to get a blue badge and attendance allowance.

[rebeccaRParticipant]

H Amanda, the benefits system has been tightened up quite a bit now so think it is very hard for new claimants. We are all “terminal” as is, I guess, everyone (the cause for many tho remains unknown we’ve just got a heads up!) but terminal, thank goodness, doesn’t mean imminent – I know you are fast tracked for benefits if you have 6 months or less to go – with the consultant signing up for this. I would go to Macmillans, citizens advice and you can have someone from DWP come and see you. I know people who do not suffer from cancer but have other debilitating conditions and cannot got benefits because they can walk 100 yards ( or whatever the criteria is) and dress ok etc. I guess you need to research it all and paint the picture of the worst day – I think someone claimed carers allowance for her husband because due to PN he found opening the pill bottles too difficult and needed help dressing – buttons etc. I have heard that some (not on this site but in general) who have had their benefits stopped have retried with debilitating “depression” “anxiety” – needs someone with them when out in case of a panic attack. I guess there are more than one ways to skin a cat so to speak so, if you wish, you need to explore how others manage it. By the way, I do not claim anything and have lost a lot of money due to time off work/ reduced working hours – I guess anyone with an illness does unfortunately. I guess you need to research the exact criteria you need to meet to get benefits and figure out how to match it – but think you would need Dr support/evidence also – but not sure. Good luck

Rebecca

[SonnyParticipant]

Hi Amanda
I understand your frustration with the benefits system, my husband was diagnosed with MM in Dec 2011 but we didn’t start to look into applying for benefits until March the next year. He was turned down for DLA which we applied for with help from the CAB, then again after his SCT. We didn’t appeal the decision at the time as we didn’t have the energy mentally and physically but now regret that we let it go. He isn’t in a position to go back to work due to several fractured vertebrae(was a decorator). My employers have been fantastic in allowing me to increase to fulltime hours which means I’m at work more than at home but sadly its either that or lose our home. I would suggest you get in touch with your local Macmillan benefits advisor and take a look at a website http://www.benefitsandwork.co.uk which is run by benefit advisors and barristers, and I would give serious thought to appealing the decision. I’m not sure if you have to get your medics to fill out a section on the PIP paperwork but if that is the case try and speak to the one that knows your husband best, which may not be your GP. If your husband is still of working age would he be able to apply for ESA even though he took early retirement , or perhaps pension credit to top up your income ?
All the best,
Ann x

• This reply was modified 10 years ago by  webteam.

[SonnyParticipant]

Oh dear, Ive no idea whats happened with the font but hopefully its readable !

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