DLA awarded.... now what!

Public Archive
21

Hi

I am always interested to read the posts re DLA because when I was dx with bone mets last Sept I finished work (Aged 59) and claimed Incapacity Benefit. However when I asked the Oncologist about claiming DLA he told me that although the 6 month rule doesn’t really apply now, he would not sign the forms as I was not yet at that stage of the illness and that was the end of the conversation. My cancer is hormone related and I currently take Arimidex and Bonefos and feel quite well but I do wonder whether to mention the DLA to my GP and see if he will sign the forms.

Has anyone else had this response from their Oncologists etc? and any suggestions as to what I should do next

thanks Barbara

22

Hi Geobar,

I was dx in July and a CT scan confirmed tumours in my spine 3 weeks later. My oncologist had no problem in signing my DLA form and took pains to say that the six month rule was covered by my condition and did not mean I was necessarily going to die in six months. Perhaps yours is being too pedantic and needs to loosen up a bit!

Thought Ruftikins

23

My oncologist was reluctant to sign the form because he’s sure I have longer than six months, which is nice to know! Luckily my MacMillan nurse was there and she practically ordered him to sign the form. She said she’s got another lady with my diagnosis who is still claiming Special Rules DLA after seven years, and the DWP are fine with it.

Once upon a time a diagnosis of secondaries was pretty much a death sentence, but with better treatment lots of us live well past the six months and some live on for years and years, which is a good thing of course but I wonder if the DWP will cotton on to this fact and make the rules much stricter. I’m alright, I’ve got my DLA and they can’t take it away, but I worry that in future it will become much harder to claim.

24

I think a lot of people claiming DLA under ‘Special Rules’ may not be aware of some recent changes. Once awarded on this basis it will now be reviewed.

“Under the ‘special rules’ DLA was awarded for life but from September 2006 these awards will be made for a fixed period of three years and reviewed at the end of this period. People awarded under the ‘special rules’ before September 2006 will not be affected by this change.”

Dawnhc

25

Drat, my award does say three years. Still, if I’m still here in three years I’ll be pleased :slight_smile: They’re welcome to review my case, unless some miracle occurs I’ll still have terminal cancer.

It does seem like a weird kind of logic to award something on the basis that the claimant will only live six months, but wait three years for a review! I’m not complaining though, I’m glad I don’t have to have six-monthly reviews.

26

Silverlady, I think they just write and ask you to confirm that your situation hasn’t changed. I think that the doc signing the form is stating ‘may not live more than 6 mths’ :slight_smile:

Dawn

27

Reading all the comments regarding DLA - think a lot of you have got the wrong end of the stick. DLA is for UNDER 65 years of Age - AA is for over 65. Special Rules means Six Months Left and reading about you ladies ‘with attitude’ feel sure it doesn’t apply. DLA can be granted in the short term i.e. 1 year or 2 years or ‘for life’ if considered necessary. It is not for Cancer per se but for the effects the cancer can have on you - you must have been affected by the problems for three months and expect to continue to have them for six months. OK?

28

I believe I am right in saying that DLA is not just for UNDER 65, you cannot start to claim this after the age of 65, but if you are in receipt of DLA before the age of 65, it continues past 65. Claiming under Special Rules DS1500 is for those with a terminal prognosis not expected to survive beyond 6 months. BUT the DWP on DLA recognise that many live well beyond the 6 months and review your entitlement after 3 years. There is a working paper in which you can see the no. of people claim after 1, 3 & over 7 years under Special Rules. Nice to read you see us as Ladies with Attitude :). Some of us will keep going with attitude till the bitter end! I believe that the DWP no longer regard DLA as being given ‘for life’, but will in future review all cases every 3 years. Also where DLA under DS1500 Special Rules is awarded the 3 mth rule is waived, and payment is dated from the day the forms were applied for.

Dawnhc

29

Gosh, this is so confusing! I was encouraged to apply for DLA when recovering from axillary removal, by the admin staff at the Mustard Tree Centre at my hospital. My bc nurse sent me over there, in a dressing gown and drains in. It was started by McMillan and guess it is something like Maggie’s Centre in Scotland. There is a lot of fund raising done in the local community for this complementary centre, for all cancer patients.

I was interviewed at the centre by an adviser from the local DWP and she filled the forms in for me. She goes there every Friday morning to see cancer patients, not just bc. My GP absolutely refused to sign the DS1500, but as I have intractable Crohn’s as well as bc, there was no problem in getting my gastro to sign it. He once told me that chronic Crohn’s quality of life (as assessed by the Mayo Clinic) is equivalent to stage IV cancer, so he was very sympathetic.

Before I had the interview with DWP I got a package of information from the National Assocn for Colitis & Crohn’s, with details on how to fill in the forms. The information was written by two barristers in London. It worked out fine and was awarded immediately, backdated to the day I completed the forms. That was in March 2003, and I have never been asked to sign anything since. However, my condition is much worse now, with arthritis in both hips,hands and feet, bone density loss and two fractures last year. I still have to pay for incontinence pads at the chemist, although being over 60 yrs I get all my meds free.

Having worked full time from age 14 yrs to 40 yrs, I feel I have put enough money into the system via income taxes and NHS contributions. I have never had a penny from the Govmt for anything else and feel I am entitled to it. My husband is 80 yrs old, I am 63 yrs and we are still paying income taxes on our modest savings. There are many scroungers around who have never had a job in their lives, yet get DLA on some trumped up “back problems” etc.

The DLA has made such a difference to my life - I now have a twice monthly cleaner (my hands are quite deformed by osteoarthritis and my muscle strength is virtually zero); a 4 weekly window cleaner to do the precarious seaward windows on a 5th floor balcony with no guard rails, and a franchisee oven cleaner. There are many times when I just cannot drive the 3 miles to my local GP for my monthly injections and blood tests, or the long journey by ferry and road to the hospital and have to take taxis.This money helps me to have a quality of life that we would not be able to afford otherwise and I dread to think how I would get to the hospital if my disabled husband cannot take me, as some days he can’t. It is a £60 round trip to the hospital,; I was there 4 times last month to see various specialists… Do I think I am entitled? - absolutely.

Keep up the “attitude” ladies! We are our own best advocates.

Liz.

30

I hope I am misunderstanding your post airborne2, but I read it to imply that many of us are not ‘entitled’ to DLA? I am sorry, but when you are in our position there are no guarantees and you absolutely cannot be sure the Six Month Left clause ‘doesn’t apply’. Cancer is so very unpredictable whatever ones ‘attitude’, and there is no knowing how we may be in six months time - that is, if we are here at all. Filling in the form with that b****y awful word ‘terminal’, was one of the worst parts of dealing with this awful situation for me. I was going to look for a job around the time I was diagnosed terminal (after my daughter began school) but who is going to want to give me any kind of reasonable job with my prognosis? I would give anything to be going to work everyday, earning a living like everyone else out there in the real world instead of claiming DLA, but as it is I feel I am perfectly entitled to it. If I wasn’t looking after my two children, my partner would probably have to give up work and the state would have to hand out far more than it is currently doing in order to support my family.

Jenny.

31

For Airbourne 2 - I feel like Jenny above and hope I am reading your post incorrectly.
There are 2 types of DLA - one being the ‘special rules’ where the onc/gp feels with a secondary diagnosis, that you may only live for 6 months but as cancer is so unpredictable and with newer treatments, we may live longer which the DWP accept.
The other type of DLA you have to have a condition that you have had for 3 months and is expected to be around for another 6 months or more.
I’m unsure what you mean by ‘ladies with attitude’ but it didn’t feel complimentary.
Unfortunately, with no access to profiles i can not tell how far down the bc journey you are but presumably you have not got secondaries.
Us women need attitude to survive the horrors of living with a secondary diagnosis and I feel quite offended by the way you wrote your post. Perhaps, you could explain what you meant as I hope I have misinterpretted what you have written as it implies you think we are not entitled to DLA under Special Rules.
My life, like lots of women with secondaries is very difficult and i need that money to get me the help i need.
Don’t you think we would all rather be NED and not have that fear that our cancer could go out of control at any time and we could die very quickly. i know quite a few women who were NED and then died within a month or two of secondary diagnosis all leaving young children behind so you can never tell when your bc could turn out to be uncontrollable by chemo/hormones etc and die very suddenly.
I have met many of the women who have posted here or if not I have been reading their posts over the last 3 years and know what suffering a lot of them have been through - none are scroungers but all trying to make the best out of a horrendous situation. Perhaps, you should spend a day with me or others to see what our lives are like or perhaps we should all be writing very depressing posts about our impending deaths.
I have 3 children all under the age of 10 and in my current state and unless they are prepared to give me a trial drug or recycled drug, I will be dead by June. Do you think that makes me ineligible under special rules then?
I’m sorry if I’ve offended you Airbourne 2 but I’ve been using these boards for nearly 3 years now and don’t think I’ve felt so demeaned by anyone until reading your post tonight.
I sincerely hope you will reread what you have written and understand why Jenny and myself feel particularly upset by the language used in your post and i hope we have misinterpretted you wrongly and that you are not implying we and others with secondaries are not entitled to DLA under special rules.
Kate

32

Hi Lizeece

Are you sure that you cannot get a grant towards your hospital expenses? I am sure that I have seen a form in the hospital waiting room (sorry but I ‘saw’ but didn’t ‘read’) it would certainly be worth while asking at least.

Blondie

33

Hi everyone

Can I suggest that if you need advice or clarification about benefits that you go to macmillan.org.uk/Get_Support/Financial_help/Financial_help.aspx on the MacMillan site or give our helpline a ring.

Take Care

Ann

34

Ladies is a big compliment I can assure you - think it is stunning how you all help each other in such a magnificient way.
Sorry if you misunderstood.

35

Thanks airborne.

Jenny.

36

Hi to everyone.

Was talking to Mills on monday about DVLA but wasnt sure if my GP would sign the DS1500 form. anyway after reading all the posts will give it a try. see Onc next mth so will ask then. Have secondaries in spine lungs and liver but can get out and about most of the time but you never know how soon things can change.

Liz - concerned that you are having to pay for pads. Have you asked your District Nurse (contacted through GP) about them.

Maddison

37

Hi Blondie and Maddison - many thanks for your helpful responses.

Hospital travelling expenses - I did enquire at the hospital about this, but as we are not on any means tested benefits, they said this does not apply to me. DLA is not means tested. When having rads, I was offered volunteer car service - fantastic, every day for five and a half weeks. Sometimes took 6 hours there and back, but as I am retired, not a problem. It was winter and some days when we have Force 8 gales, the ferries don’t run, so this was a godsend. As I live in Cornwall, hospital is in Devon, I was not charged and even though I asked all the drivers, they could not answer me. Patients in Devon have to pay £4.50 each way, regardless of the mileage, which is most unfair. especially to those cancer/dialysis patients on state retirement pensions. The service was under the auspices of the Devon and Cornwall Ambulance service - the drivers got paid a mileage allowance and all seemed to enjoy their job. However, this service is not available for my regular visits to hospital for blood tests, scans,consultations etc for Crohn’s. I assuaged my conscience by putting some money into the cancer charity “rattlers” the drivers had in their cars.

Pads - I too was surprised that I have to pay for these at the chemist, as they are quite expensive. I did ask the friendly pharmacist if I could get a prescription from the GP, but he said no. Just as well, because I was also going to ask for a contribution towards cotton knickers! Friends in the US regularly send me packs of Fruit of the Loom 100% cotton pants - so cheap there, about 6 for 5 pairs, and they are boilable. I have a fistula at the bottom of my large colon, and it leaks. Gastro said surgery would only make it worse, so I am stuck with the problem. Could be worse, I always think. I am seeing my GP’s nurse in the morning for monthly blood tests and will ask her if I can get free pads.

Many thanks for your advice.

Liz.

38

Hi Everyone
Has anyone getting DLA and mobility gone back to work and if so are the benefits affected?
Finished chemo 5 weeks ago and I’m not sure what to do about work. I applied for DLA under special rules but didn’t think I’d get mobility. I didn’t walk much while on chemo as my legs ached so much and at the moment there still not right one leg aches in a particular spot (which I’m a bit worried about but have been told not too worry its probably nothing- easy for them to say) and the other leg if I walk anywhere my foot swells, but anyway my point is I hope to be able to get around better soon and worry because I’ve got the mobility allowance.
Any advice?
Liz x

39

Hi Liz

Like you I applied for DLA under special rules and learnt earlier this week that they’d given it to me, plus the mobility element (which I didn’t think I would get and didn’t complete the section for). Like you I am a bit worried that I’ve got the mobility allowance as I am actually quite mobile and getting more mobile as I recover from the chemo and then surgery. I don’t know whether just to accept it or to query it… Worried they might claim it back at some point if it’s a mistake!

In terms of going back to work, my understanding is that that doesn’t affect DLA at all. I’m now back at work (reduced hours).

Kay x

40

Hi all,
My breast care nurse told me 3 weeks ago that I should be entitled to receive DLA under the special rules and not to be alarmed about this as my prognosis should be a lot better than 6 months. A social worker from the hospital took my details over the phone and dealt with all the forms on my behalf. I found out last week that I have been awarded it with the higher mobility rate even though my mobility is currently fine. I understood from the social worker if you apply under special rules you automatically get onto the higher mobility rate but I may be incorrect on that. I, too feel a little guilty for getting it at the moment but things can change so suddenly. In fact after my first taxol chemo last week I got bad joint pains for 2 days 2 days after the treatment and even found driving and changing gears uncomfortable, so I do think I’ll be very grateful for the Motability automatic car we’ve ordered using my mobility allowance.I’ve also just picked up my blue disability badge which again feels very strange but I’d swap anything to have my health and a normal life expectancy so I do think us ladies deserve whatever we may be entitled to.

Anne x