Well said, Alison. It’s why I didn’t get involved with the discussion on the moral argument but stuck to posting about the problems I have been having getting anywhere with claiming benefits. You are fortunate indeed if you don’t need to claim but as I was the main breadwinner in my house, we have gone from having a reasonable income to nothing more than esa at £65.00 per week plus child tax credits. I’d defy anyone to try and maintain anything like a normal standard of living on that.
I won’t say anymore on the subject though, because as you said this thread should be for people to discuss and get advice on the practical aspects of getting benefits, not the moral arguments.
I am really glad that you started this thread Alison. I am really worried about the new government’s changes for people on benefits like DLA. I have spoken to my BC Nurse, GP and Consultant about my concerns about my DLA being reduced. I just don’t know how I would manage, financially or emotionally if my benefit is cut as I rely on my car as I have said in a previous post I made on this thread. My position healthwise gave me great concern recently when I tried to cut down my morphine, with my GPs approval, to see if it would alleviate the tiredness I feel daily. It just didn’t work…I lasted 8 days and ended up in bed crying with the pain I was suffering without merely 5mg of morphine. I am NOT looking for sympathy here, just pointing out that life can be precarious for some of us. We just don’t know what is round the corner.
Most of the time I manage well, with the help of my husband and daughter. But there are days when I cannot do what I would like to and have to rest more and more. I just hope that we don’t have to prove that we need this support (DLA) as we all have enough to cope with as it is. Do the people who make these decisions have a “scooby” about just how hard it can be to live with secondaries day in and day out.Eeven planning a holiday involves a “fingers crossed” approach. Thanks for listening. You are a great bunch of ladies, all of you. Love Val
I understand what Geewhizz is saying, but the trouble is when someone gets a secondary Diagnosis, they don’t know whether they will be around for six months or twenty years. I doubt people would claim DLA under DS 1500 rules, if they knew for sure they would be around for twenty years.
I am in receipt of DLA under DS 1500, and know that some would argue I shouldn’t claim it, because I appear to be physically OK. But the trouble is that situation can change virtually overnight. Someone can feel great one day, but have a scan the next that shows catastrophic progression (as most progression is usually symptom free).
In any case, my husband and I have paid quite a bit of National Insurance, and 40% income tax over the last 40 years, and as we have never received much from the state (apart from education, and usual public amenities), and I probably wont receive a pension, I don’t think I can be described as a welfare scrounger.
I suppose I am one of those who has benefitted most from DLA having claimed now for about 6 years. I didn’t start claiming DLA when first dx with 2ndaries in 2002. I didn’t even know it existed. That is why once I discovered it I made sure whenever a new member joined bcpals with 2ndaries that they knew what it is was about, and helped as much as I could to tell them how to proceed. I knew my bone mets were quite serious when they were diagnosed because it had already spread so extensively. I turn cold when I read of someone with bone mets, maybe nothing like as bad as mine are, who have had it spread to other organs. I know it could happen to me any day, and now with the tumour that has grown alongside my spine (nothing to do with tbe bone mets) who is there to say how long I have left? Thank goodness I had an onc who took that attitude from the outset and willingly signed my DS1500 when I asked her. There is nothing to stop the DWP changing the rules for claiming. If they intended it to be paid to those who had 6 months why didn’t they stop paying out once that time had passed?
Val I really feel for you trying to cut down the pain meds. You just can’t mess with this stuff. I long to give it up but have been on increasing amounts over 3 years now and it is so hard to find the balance between enough pain relief and being able to stay awake. The Marsden gave me a script for dexamfetamine. I use it very sparingly when I really need to be alert - like doing the company accounts! I do find that odd day just taking one helps tremendously but am really quite scared of being dependent on them.
Belinda I hope you get on ok with the taxotere/docetaxol. It is one that I was on a few years ago (I think it was in 1999) when it was quite new and the hospital had to get the written o.k.to use it. I would be kept in overnight each dose! I would say if you have any of the reactions they tell you about don’t be brave!! but make sure they know immediately. It is easier to get control at that stage.
Alison it has been a great thread and I am sure it will help many who join here, as they read about what they are entitled to claim.
Nice to speak to you again Dawn. I am back to normal (almost) and am feeling more comfortable again. It was just an experiment that I asked my GP if I could try… cutting down on anything as I was just feeling so tired. But I realise that being tired is better that being in severe pain. But I have juggled about with meds before and the highest dose of MST I was on at one time was 60/60. Now it is only 20/20 and I do not feel that I need to keep taking more and more of it. But alonf with MST I also take other painkillers so I was hoping that cutting down on something may help with the fatigue.
I know that you have told us a little of what is happening with you but how are you doing really and are you trying out any new meds? Any new treatments? I have never tried the dexa…Have you used it over a long period of time? Take care and kiss those grandchildren of yours for me. Love Val
Sorry girls if I am getting a bit off topic :). But in response to Val - you are doing really well to have got back down to 20/20. When I was on MST like you I was up to 60/60 and getting more and more tired. I switched a while back to fentanyl and have just doubled the patch dose I am on from 100 to 2x100. On top of that I am still needing to top up with fentanyl lozenges as and when. But if I do any extra activity like simple housework it ups the pain. Am also taking 300x3 gabapentin and the macmillan doctor is talking of increasing that dose. As for the dexamf… I was first prescribed these in 2009 and still have not finished that box - so really do take them very occasionally. Thanks for remember the grandkids - but there is only one! and they are spending this weekend with us. He is so delightful, a lovely natured little chap. I am just so thrilled that I have been around to get to know him.
Thanks for the info on esa support group and getting more money. I am in the assessment phase at the moment but hope it will go up to £90 when I get assessed. I think I’m right in saying that if I could get dla under special rules it would go up straight away and I wouldn’t have to go through the assessment. The trouble is I am getting nowhere with getting someone to sign the DS1500 for me. I went back to my GP surgery but they told me they have written to my oncologist for advice and I’m still waiting to hear.
Hi Belinda and all
I too have been having sleepless nights, and dreading the arrival of the post as my DLA is being assessed too. Any news on your assessment Belinda?
Great to be able to post!
Blondie
Not really been posting that much lately. However I have just had my DLA renewed under special rules at the same rate.
It took just over a week.
julie xxx
Hi Juliet
Well done on getting your DLA. I have still not heard anything and still dread the post. Husband just retired so the indecision over our ‘indefinite’ awards is awful. I fear that taking more time over Belinda and my claim may not be good news.
Blondie
Julie, So glad that you have had your DLA renewed. It is such a worry for a lot of us. Glad you didn’t have to wait too long to hear the result. Hope you are well at them moment. Thank you so much for letting us know.
Belinda and Blondie I cannot understand how you are still waiting for your result for DLA. I just hope it all comes right for you both after waiting so long. Do they realise just how much it worries us all…the not knowing either way. Love to all on this thread. Val
Hi Julie, I think my claim is being held up by the usual contacting doctor/Onc channels…I must surely hear back soon??!
I’ve never claimed for a blue badge as I just don’t need the added hassle it can bring in a Tesco/Sainsbury car park. A friend who died a few years ago was really aggressively verbally attacked by a shopper not thinking she was ill enough to be using her badge…a few months before she died and in front of her young daughter.
Hi Belinda, I use my Blue badge every day. But I have been verbally attacked before and it is not a nice thing to experience. But I won’t let those small minded people stop me from using it. It makes a HUGE difference to my day to day life as it conserves what little energy I do have, to do the things I like doing without becoming exhausted just getting to places. If you really could use a blue badge, DO PLEASE think again. (It may also help with your claim to DLA). I am sorry that your friend had the hassle which upset her no doubt. How long will it take for the general public get it into their heads that you do not need to be in a wheel chair to be entitled to a Blue badge. Nosy busy bodies all of them. Hope you hear soon so that you know where you are. Hugs Val
I am just about to apply for my blue badge in preparation for when I come out of hospital, however my Macmillan nurse said that I should have one, if just to get a wider parking bay, for those of us with stiff joints/bone mets it’s not always easy to slide out of a car in a restricted space! I will store up some retorts to use if any small minded people challenge me! Although it would probably be all talk, as I would probably just crumple if challenged!
