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 PMR 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?

6 Replies

  • Hi Amanda1234,

    So sorry for you, talk about kicking a person when they are down!

    Suggest one of your first ports of call is CAB, together with all your paperwork from DWP, along with all your information of both yours and his illnesses.

    Have you spoken to GP surgery?

    As your husband's illness is terminal is he under the care of MacMillian, or a local hospice/respite care facility? When my late husband was in the same situation, albeit much further down the line unfortunately, our local organisation was brilliant, and helped us in all manner of things, not just nursing him at home. It might be worth making some enquiries to see if one is willing/able to support you.

    I know where you are coming from regarding having paid in all your life, and seemingly getting no return, unfortunately it happens to a lot of people.

    Hopefully you will get plenty of responses that help you, I'm sure there are more people on this forum who have been where you are, and can advise. Good luck. DorsetLady

  • There are two ways to deal with this depending on your age group

    If one or both of you is over 60 contract AGE UK they have people trained in benefits or under 60 CAB IS the place they have trained people as well .Just remember you want face to face meeting not phone interview believe me it works better

  • I used to be a CAB adviser and gave up 15 months ago because of the burden that 'welfare reforms' were putting on us. Advisers should have the necessary expertise to be able to help you and your husband to appeal against this awful decision. Also, if I thought my MP would be any use, I would go to see him/her at his/her constituency surgery. As well as presenting your case orally, also hand over a written summary of the case. Opposition MPs will be pleased to have this ammunition; Coalition MPs need to know the devastating effects of these punitive so-called 'reforms'.

  • Appeal... do not hesitate... You can also call the benefits helpline and ask about any other benefits he may be entitled to...once you ask they are obliged to tell you but they rarely volunteer the information.

  • Yes - appeal. I've heard many of the people turned down have the decision reversed at appeal. Nothing to lose there. But you need people who know their way round the system - CAB or Macmillan would be the place to start.

    And facing them down politely goes a long way at any stage: my daughter was asked (quite rudely) why SHE had to administer medication to her 14 year old daughter. This 14 year old has brittle asthma, wakes at night confused and still half asleep because she isn't breathing properly - the medication is complicated. Hardly something you want to leave to chance since the option is admission to hospital - provided she is still alive that is. The staff doing this work are too young to have any idea what it is to be chronically and seriously ill and just want to tick another box.

  • Hi ,make sure you appeal ,im on standard rate for daily living on pip.7 months mine took to be sorted. I'm sorry to hear about your husbands and your own bad health .As you say you've paid into system for long enough ,and it is not providing a safety net for the likes of yourself and husband.CAB or disability advice centre will provide help with questionnaire for pip. I went down that route .The new pip is replacing dla and there remit is to get as many people off it or on a reduced amount. I don't understand how they can stop benefit without a change in circumstances for you ,have you made a claim for pip?.If not I would advice on site on how to go about it. Its enough people have to manage and cope with illness or illnesses without the state forcing worry and ....lets be blunt fear in people. This shower would like to see us die off instead of paying for support to people in there time of need. I hope it all works out for you and your husband Amanda . Get supporting letters off consultants ,gp ,organisations...macmillan etc to beef up case. Good luck to you both.

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