Thanks for the advice, I mentioned to mac nurse i had secondaries but she didnt mentioned DS1500 special rules, but i'll ask when i see her.
Yes, I get DLA because of my secondaries and the fact that there are a lot of things that I can't now do that affect my day to day living and not because of lymphoedema.
My lymphoedema isn't bad (but there again maybe I'm comparing it to my secondaries?!).
We've got the CAB/Macmillan initiative in our area as well which is really good (although they weren't around when I was diagnosed with mets). I think they're hoping to get it countrywide at some point or other.
As Jane says, they won't query you if you work because it's not taken into consideration; there are a lot of people who are registered disabled who work.
I've also lived longer than 6 months and the form (according to the Benefits Enquiry Line) is really out of date stating that it's 6 months which I think can freak people out (it certainly did me!).
Someone has to sign the special rules part of your DLA under special rules. My GP signed mine. The way I look at the 6 months is that if things go pear shaped then I will be dead in 6 months...as could any of us with advanced disease, but I am rather hoping for longer. I put off applying for a long time because psychologically I wasn't ready, but I'm now kicking myself about the lost money. I get care and mobility components at higher rate. I have had difficulty walking on bad days from nerve pain in my shoulder and back and this is what I said on form.
DLA is non means tested and you can work. My hospice nurse (MacMillan equivalent in my area) and my GP were both brilliant about this...
Just realised this comes under a hedaing for lymphodema...having lymphoedema alone won't qualify you under special rules which is for people who have a temrinal illness.
Sorry start again
I have appointment to see macmillan nures at CAB on Wednesday coming. She already mentioned I may not qualify for DLA as I am able to wash my own hair and I can dress myself and also they may query the fact I am able to work. I said i have trouble drying my hair even though bought a lightweight hairdryer and i can work coz they have made adjustments at work eg I don't lift anything and take frequent breaks from computer so my arm isnt in one position all the time. I know I will live longer than 6 months with my secondaries, and they don't bother me physically so would I qualify? Did you get DLA coz of your secondaries?
DS1500 basically means the 'special rules' and that you're fast tracked through. It's part of the form you fill in for DLA.
This happened to me when I was diagnosed with secondaries (also have lymphoedema but that's not as much of an issue for me). I didn't fill in the DS1500 part of it because I felt I had more than 6 months to live but the Benefits Enquiry Line rang me to ask why I hadn't filled that part in and I explained why. She said that I fitted the criteria (because of my secondaries) for it and that she was going to backdate it to the date I originally applied for it.
I now get the higher rate of mobility and care component as my condition is unlikely to improve that much.
Thanks girls, i'm going to contact local cab as have macmillan there for advice. I am able to work as have desk job and dont have to do any lifting.Someone else does it when required. My arm aches sometimes and have to take breaks from computer. I cant make a full meal as find i cant chop anything or lift a pan. I cant do housework (good excuse eh!) as arm really aches after a few minutes, but otherwise i feel fit and look well (so people say) 2ndary dx 20 months ago. Anyway will see what she says.
Interesting about the DS1500, i've never heard of it, but will ask about it as well.
Take care everyone
Maybe you should explore a bit further what you are getting for DLA. With Secondaries you should be able to get a DS1500 Special Rules signed by your GP or Onc which will entitle you to DLA at the higher rate. Some find it offputting that your gp/onc is stating on it that you have a terminal disease and MAY not live more than 6 months. Many of us have lived much longer than that since 2ndary dx and the DWP acknowledge that as they contact you again after 3 years.
hi .im on dla ,for my lymphodemia,as i cant make a full meal (lifting pans etc turning on cooker nobs ) i get the lower rate and i too cant return to my job as it involves lifting etc ,at the moment im on income support ,but they keep recalling me for dhss medicals despite already having oncology report abbout liver secondaries ect .its worth applying but get someone who really knows what they are doing as there are afew trick questions in there .like can you tie shoe laces etc .i cant !! good luck with your application .lynn x
The Macmillan Team at your local hospital may give you a telephone number to ring to get a form for DLA. The Macmillan Team will probably help you fill it in as I believe the form is lengthy. Have a word with them it may help.
hi, i was advised by a lady from job centre plus when i went for a pathways to work interview to apply she gave me the form and a tel number for DIAL who will come to your home and help you to fill it in ( that was 12th sept so still waiting to hear ) to be honest i didn't think of applying myself because of lymphoedema but she said to give it a try, ive been off work a year now and i seriously can't see me going back to my old job ( supermarket " lifting, till work etc" ) as my arm and shoulder is quite swollen and painfull most of the time so i don't know what im going to do as i have done the same job for 20yrs ( on the scrap heap at 52 !!! ) I am on incapacity benefit at the moment