Financial support/benefits for new secondaries dx

Val - have sent you a PM about my DLA review. xx

Thanks Marif have PM’d you in return. Val

Anyone had this letter yet regarding Blue Badge?
My one runs out at the end of the month and I have been asked to pay £20 to have it renewed! I just wondered if any other area in Great Britain had asked Blue Badge Holders to do anything similar. I am in Edinburgh in Scotland. Thanks, val

Val,

I had mine renewed for nothing, using the ‘tellytalk’ thing at the local library.

I did not even have to bring photographs as all was done virtually using a sort of video conferencing procedure.

I am not sure about Scotland but it is definitely worth checking things out …before you pay !!!

julie x

Thanks for replying Julie. I have had my pass for years and years but now the Council want to charge us. Just wondered how many areas were going to do so. I find my Blue Badge wonderful benefit but think it is a bit unfair to charge at all. There are free bus passes for the over 60s who could be as fit as a fiddle but the disabled are being targeted. I will pay it… but wanted to know if there is any other areas doing this. I may write and complain if I find it is just Edinburgh.
Anyone else had this charge? Val x

Hi Val,

I needed to provide 2 recent passport photos for my application. I may have paid a couple of pounds, but certainly not anything like £20. The money had to be a cheque, which seemed weird for such a small amount of money. Is the £20 refundable? I had to pay £20 for my ‘free’ parking pass at the hospital, it just gets transferred to the new one every 6 months. If I lose it (or allow someone else to use it fraudulantly) I lose the £20.

This is Chester West.

The letter has in it the following…
“The Council is facing challenging financial circumstances now and for the foreseeable future, and to that end has agreed to make certain reductions in the budget and increases in service charges, one of which is the blue badge scheme. This means that all badges now incur a charge of £20. This charge has been sanctioned by the Scottish Government”…
Looks as if I am between a rock and a hard place. Luckily I can afford to pay this but am sure there are others who will have difficulty especially as there are increases in food and fuel etc.
Yet the Royal wedding here at the weekend managed to go ahead with all the Police protection that entailed. Gosh I am sounding militant…just letting off steam at the unfairness of it all. English people can come up to Scotland and use their free Blue badge yet I have to pay to use mine in my home town. ( I have nothing against English people…just making a point. I am half English myself!)
Thanks for the moan. Any other persons having to pay??Val

Scottish lass
I had the opposite ruling - we used to pay a couple of pounds for our blue badge renewal but the county council got rid of it as it caused more administration than it was worth.
Yes we can use our free blue badges in Scotland (as can any other EU country that is in the scheme, I believe) but (if it is any consolation) we can’t use our bus passes in Scotland - only England and Wales. Can you use your bus pass in England?

I am 100% Scottish by the way.

blondie

Hi Blondie, I don’t know if I can use my bus pass in England but would be most interested to hear if you can.
Any other Scottish ladies know the answer?
I find travelling in a bus rather painful because the roads are so holey and the bus seats rather firm so I don’t use the bus unless I really need to do so. But I am in a bit of pain at the moment and I am seeing an Orthopaedic surgeon in a couple of days.
where are you from in Scotland/or where are your roots here? Val

Just a moan! Mets in bones dx earlier this month and saw onc on Friday. Asked her about DS1500 and a flat ‘No’!

Anyone else I can turn to - it seems like we have a postcode lottery for DLA on secondary dx to me - some get it no problem and others don’t. Having been made redundant cos of my illnesses (not the officail line but the truth!), th eextra money would nake a big difference!!

Hi Broomsticklady,
Maybe you could try your GP?
So unfair.

Good luck,
Hugs
xx

anyone had any reviews or sorted out claims?

The criteria are very presciptive for DLA and is not purely related to a secondary diagnosis. The secondary diagnosis just let’s it be fasttracked if criteria are met. I’ve bone and liver mets for a couple of years and have really only just got to the point where I feel I can apply due to mobility issues, husband needing to help me with some care jobs and breathlessness when I walk. I got lots advice from a Macmillan benefits advisor so hope to now submit application - plan to discuss with my Onc tomorrow.

I agree francesw - I was diagnosed with secondaries 18 months ago, but have only now started the application process due to problems with my mobility. I’m certainly not going through the special rules either - I have no intention of popping off anywhere within the next 6 months! I heard back this week to say that they are contacting my Oncologist which I am very happy about - to me that’s a win-win situation: if I am awarded it I shall feel that it is justified by his opinion, and if not, then I’m obviously not in such a bad way after all.

Best wishes to everyone,

J x

Hi J - I know what you mean about the 6 month rule but it really does fast-track alot and is seen as normal for secondary cancer patients to go that route if you want to. Sometimes rules can help us… Some people have gone this route and are still ok years ok - they seem to appreciate that often happens…
Fran
x

Well I spose I should be pleased - thats both onc and GP who are declining to complete a DS1500 for my DLA despite extensive bone mets… Seems like it’s a postcode lottery for that too!

Well, I suppose you can take it as a positive which of course is good! but it does leave you with the problem of filling in the horrible forms yourself. You can still apply without special rules and my advice would be to give lots of information, examples, discriptions of how you are affected, it is a long form and a pain but worth trying!
Good luck!
Julie xx

Hi Ladies,

I had the DS1500 form filled in and signed by my GP but the DLA would not accept that it was appropriate for my condition even tho I am at stage IV with lung mets, (my GP was livid) so it does not stand that if you get that form filled in you will get it, they awarded me one year on DLA after 5 months of phoning etc without taking the DS1500 into consideration. Pretty crazy. I dont really know what they think will happen in a years time, do they know something we all dont??? cause I really do hope they have a cure at the DLA they seem to think I only need it for a year with multiple lung mets. The whole sorry DS1500 is rubbish anyway, your dr signs it stating you only got 6 months left to live yet in the small print it says that the DLA award needs to be reviewed in 3 years time!!! again crazy and contradictory.

I’m not so bad at the moment although at the time that I applied I was in a bad way, also a friend that I had made on here with the same DX died after only 5 months, but thats the nature of this disease and the fight we all have with it, none of us know when its our time much to the annoyance of the DLA. Treatments that make you feel terrible with SE, and then trying to get over this, then just living with it on my lungs is enough to drive you out of your mind every cough I cry and wonder is this it!!! so emotional I could not work in a public place as I would be breaking down all the time, still do this daily breaking down, crying, etc.

So ladies I would apply and dont wait until you think your on your last legs apply now and enjoy the benefits it brings, the little bit of extra money helps to pay the bills without worry or with the complementary treatments and other things like getting false eyelashes these things are just as important to make you feel better.

Love and light
Sarahlousiexxxxxxx

Hi sarah,

I remember your last post regarding your DLA application and your reply to my post.

I was on hormonal treatment when I applied earlier in April/May. Although given DS1500 by my onc stating I have bone and liver mets, I didn’t get any benefits because I responded well to treatment and is expected to live more than 6!

I was too busy with moving in June/July and everything got pushed aside. I had further progression in August and started my 3rd chemo. Just contacted someone who can help me with benefit claims and she’s either going to put forward a late appeal or re-apply for me with an update-to-date DS1500. So, I’ll wait and see what happens now.

xx

Dear ladies, Thank you for all your updates re claims and DLA. I think that we shouldn’t give up if the decline a claim and should appeal immediately ( if you are able). McMillan I believe can help with the filling of the forms. BC Nurses can also advise you and perhaps speak again to your Consultant telling them just how difficult it is for you NOT having this benefit. I think that it is awful that some of us receive DLA and other don’t especially as our future prognosis is so uncertain. Don’t give up. PLEASE give it another go. You have nothing to lose and such a difference it makes to your head when you don’t have the added worry about coping with money/bills/getting around/asking for help. Please keep posting to let us know how you are doing. Love to all, Val