DLA Special Rules

[racer]

Thanks everyone. hope everyone is able to have dla and no problems xx

[bertie]

Hi Racer, So pleased for you, it just seems so unecessary that we have to go through all this to get the right result, mine took 3 months, the system is totally incompetent . I can't believe the stress it caused me and all you others too, if only they knew what we already have to deal with on a daily basis eh!! I hope all of you who are in the process of renewing your claim have lots of help to make it quicker and easier. Hope you are all feeling as well as you can be Marina xx

[scottishlass]

Delighted for you Racer. I agree it seems daft that we have to go through all this when we know we are worse than 3 years ago. X

[racer]

Hi everyone,

Sorry I  have not been to get on here with the site changing. Marina (Bertie) pleased that you have been sorted . I had a text saying 11 weeks and started to panic.Then, a few days later .....Bank Holiday weekend I had a decison to advise me that I can still have dla as previous but indefinitely. So relieved. I put on the form that I had previously had a ds1500 completed and that nothing had changed. also, put on about the emotional stress of living with this illness and completing the form.

I really hope everyone doesn't have to go through this. It is bad enough that we have to apply for it due to being unwell. We all want to be well xx

[Macie40]

Oh June what a shame your dad didnt wait for your help or anybody's help what a proud man he must be not to want to worry anybody.I have just received my forms for renewal of A/A I was awarded it in june 2012 for 18 months I was dx with primary in 2007 and stage 4 secondaries in bones TN in Jan 2012.I am worried about re-applying as I think the benefits system is getting tougher and it is the genuine people that are being knocked back.I hope your dad does appeal and gets the right result I wish him all the best.
Linda x

[doodlecat]

Linda, thanks I know my Dad is entitled to it and he should appeal. I asked him to wait until I saw him (he is 220 miles away) but he went ahead and filled in the form himself. I can only imagine what he wrote in it (wouldn't have admitted he needed help). He would be entitled under special rules as his cancer is untreatable and he also has an aneurism. There is no telling him. In all honesty the people who considered his application would have probably had their hands tied. My sister spends a lot of time looking after him but he would not have said this on the form.

Sue as Linda said Macmillan should help. My own Macmillan nurse put me onto the Macmillan CAB and I saw an adviser while I was at hospital for an appointment. She had the forms and also filled them all in for me. They should be able to do a benefits check for you too. If you do not have Macmillan CAB available then benefits adviser at CAB can fill in forms for you.

I agree this is a helpful forum.

June xx

[bertie]

Agree Sue , lovely helpful forum, just what we need when we are going through all this, especially with secondaries when you see how so many ladies are living years, I am now 4 years since secondary diagnosis and stable at the moment 🙂
Take care and good luck with your claim
Marina x

[Guest user]

Hi Marina

Thank you for the reply, its all new to me despite it being my second hit of cancer. I will get in touch with my breast care nurses, the yare lovely and i am sure will help me with the forms etc.
Such a lovely helpful forum, just what is needed when we are going through this, lovely support
Thanks
Sue x

[bertie]

Hi Sue (jinxy12), I have lung mets too so you should be entitled to DLA, if you have a McMillan nurse or a welfare department at your hospital they should be able to help you get and fill in your first forms, I had no problems when I first applied 3 years ago, the hospital instigated it and it went through very quickly, it was when I was sent renewal forms recently that I had problems. Wishing you luck, do let us know how you get on and apply now.
Take care
Marina x

[Macie40]

Hi Doodlecat I have just read about your dear dad being turned down for A/A.I have just successfully done a claim for A/A for my husband who is a young 80 but unfortunatel has emphysema and other health issues.I filled the forms in myself taking my time to answer every question as they say on your worst day and I sent copies of consultants letters and hosp discharge letters to back it up.I would certainly appeal against the decision for your dad and perhaps you could get your GP to write a supporting letter.What a disgusting sittuation if at 83 you are not entitled to some help in coping with this horrible disease.Please fight for him as I expect he feels very let down by the system.I wish you well on your own journey
LINDA X

[Guest user]

Thanks June, now silly question do i get the forms from the benefits office ?

[doodlecat]

Sue I claimed around six months after being diagnosed with secondaries. I put it off as I would have been devastated if I had been turned down. As said on this thread already get help with application. I applied via Macmillan CAB. Went through with DS1500 very quickly. My Dad who is 83 and has bowel cancer, which cannot be treated, applied on his own for Attendance Allowance and his application was declined.

June x

[bertie]

Once again thank you to all you lovely ladies for taking the interest in this thread, means an awful lot especially when you are dealing with these insensitive people! I wish you lots of luck Coco, pleased you have the DS1500 that should hopefully get the claim through quickly. Lovely to hear from you Dawn, how are you, any improvement at all in pain your since your operation? I often think about you and maybe one day will bump into you at the Marsden. Good luck to you all with your ttreatments.
love Marina X

[Coco0896]

Marina, am so pleased for you, I am just starting this process I will be phoning them tomorrow to ask for a new clim as I now have the DS1500 form and can claim under special rules, hope they don't ask too many questions xxx

[Guest user]

Hi Ladies !

I have just been diagnosed with lung mets, having had breast cancer previously. At what point did you all claim for DLA as i have been told about this and thougt here might be the best place to ask.

Thanks
Sue

[belinda]

And another who is very pleased to hear your good news...at long last!!! Bertie.
It really shouldn't cause us all this stress and worry though. Good Luck to everyone else going through this ordeal. x

[Thumbie]

I have been following this thread, Bertie, and I am so pleased! You must be very relieved.

[dawnhc]

So pleased to read this Marina - as you say it shouldn't be like this. It is so blatantly obvious what they are up to and the grief and upset they cause to very sick people is unforgiveable! I hope they backdate it to when it was stopped otherwise I think you should persist and demand that as of right.

Dawn
xx

[doodlecat]

Marina, so pleased but what a shame you had to go through the worry.

June x

[bertie]

I can't believe it, got a letter today to say I will continue to get my DLA benefit under special rules, I am so relieved and it just goes to show you must not take their first decision if it is denying you, I can't believe it has taken so long but nevertheless thankful to get it again :). Hope any other ladies struggling to get a decision made also succeed, it shouldn't be this way at all. One again thank you all for your advice and kind words as always, love to you all
Marina. X

[bertie]

Thanks again Kathy, will let you know the outcome. As you say we have so much to put up without all this unnecessary stress, I know I am alone the only one there are many going through this worry with the new agency involved. Hope you are doing ok, take care Marina x

[Bowl_of_cherri]

Marina, even though your current DLA is under Special Rules, you also need to ensure your DLA Renewal is also made under Special Rules. If you don't tick the SR box it will be dealt with under normal rules. Hope you hear soon, you can do without any more unecessary hassle Kathy x

[bertie]

Thank you Bowl of Cherries, I was and I think many others too are wrongly thinking that DS1500 is for Special Rules only. This is the problem when we can't get proper advice we are totally ignorant to this complicated process. When I first filled in the form I filled in the Special Rules section but sent it without DS1500 form, I was declined and when I phoned the helpline they saidnImneeded send in DS1500 form which is what I have done. I am currently receiving DLA under Special Rules which for now due for renewal. Thank you for kindly helping.
Marina x

[Bowl_of_cherri]

Hi Marina ( Bertie,) you will need to say you want your claim dealt with under "special rules", the target for decision on "SR"is 10 days, not 11 weeks. That letter stating 11 weeks is the standard one issued when they get a renewal claim. A DS1500 in itself is not a claim for Special Rules, it's a medical report . Call them today and say you claim needs to dealt with under the Special Rules. x

[Guest user]

11 weeks is a long time to wait.

[bertie]

Just to let you know I received a letter from DWP this morning about my DLA. As you know I asked them to reconsider my claim for renewal that was turned down, the letter said a decision will be made within 11 weeks ad not to ring them unless I haven't heard within that time, can you believe it, this sorry saga has been going on since early June, I have even sent them a signed DS1500 form, words fail me, how long does it take to make a decision when you have all the facts in front of you including signed forms from my oncologist at the Marsden. Will keep you informed, Racer I hope you have your claim dealt with a bit quicker!!
Marina x

[doodlecat]

Racer, that is good you have the form completed and sent. I hope you do not have too long to wait for a response.

June

[racer]

Thanks everyone .... Feeling really fed up . Been to see Macmillan this morning and completed form. Trespectable rules bit we have put comments on saying that it was signed when I originally applied. Hoping this will be enough . the lady said I looked stressed .... So worried. Hope you get sorted Bertie . I will keep u posted xx

[doodlecat]

Thanks, Lemongrove. We really have to keep ourselves up to date with policy changes. I was not aware this was hsppening to people.

June

[Lemongrove]

Bit of a detour here ladies but thought I would give some information for those who have been receiving Employment Support Allowance (ESA), and have recently been asked to complete a limited work capability form ESA50.

I originally claimed DLA and ESA under DS1500 rules, and because I had claimed ESA under DS1500 I was placed in what the Department of Work and Pensions call a support group (meaning I am not expected to make myself available for work). Both these benefits were awarded for three years. When the three years were up, I was contacted by DWP to ask if I wanted to re-apply for DLA. I re-applied under DS1500, and was awarded this for another three years.
However a few weeks after being re-awarded DLA under DS1500, I was contacted by ATOS (the private agency appointed by the Govt to assess claims for ESA), asking me to complete a limited work capability form (ESA50), The ATOS letter stated that if I did not complete the form by a certain date I would lose my ESA.

Fortunately, I was aware of the rules regarding this, and so sent them a letter. In the letter I said the following:
Before completing this questionnaire I would like to know why I am being asked to do this when The Department of Work and Pensions Guide to ESA50 states “Claimants who are terminally ill do not need to complete ESA50 as they can be automatically placed in the Support Group. A form called a DS1500 is used to provide evidence that a claimant is terminally ill”. Please see paragraph WCA at http://www.dwp.gov.uk/docs/esa-stakeholder-information-pack.pdf


Within a few day's of sending the letter I was called by very pleasant lady at the DWP who explained that I should ignore the letter, rest assured I would not be required to complete the ESA50 form, and would immediately be assigned to the support group. She also explained that ATOS send out these forms automatically when a claimants ESA award is due to expire - irrespective of whether they have been receiving ESA under DS1500 or not.

This means a lot of terminally ill people who were previously receiving ESA under DS1500 rules might be caught out by this.

As I understand it ATOS are receiving commission on every claimant they manage to get off benefits, so it's obviously in their interest to cast their net as wide as possible. Consequently people who receive ESA under DS1500, and are asked to complete a limited work capability assessment must write to ATOS and challenge this immediately. If people want to use the paragraph I have highlighted above please do so. Don't get caught in the net.

[doodlecat]

Racer, if you do not get help from Macmillan then please make an appointment with a Benefit Adviser at CAB. They will do a full benefit check with you as well as assisting with DLA. It was not my own Macmillan nurse who helped (not directly anyway) me.

June

[bertie]

So sorry Racer you are too having problems with renewing your DLA. As you will from all my previous posts my renewal was declined, since then I have been waiting for a reconsideration, as you say it is all so worrying as if we don't have enough to worry about. Have you got a McMillan nurse? I got in touch with mine when I first got the forms and she wasn't very helpful but when I told her I had been re fused she filled in a DS1500 form so I sent it off but still not heard, this sorry story has been going on since early June, bureaucracy gone crazy! It is so awful when we can't find anyone to help and support us. I really hope you can get someone to help, I will let you know when I hear.
Marina x

[racer]

GP, Oncologist and Macmillan Nurse .....alll declined. I am a bit frustrated .....arranged to see Macmillan team tomorrow but she does not know me.Gp said I only had bone mets which really angered me as he only sees me for 10 mins occassionally and not when I can hardly move. I feel physically sick with all this and not sleeping. This has been going on 3 to 4 weeks. I said tho the Oncologists secretary that they fill the form and dla make the decision. Just seems that it is being a postcode lottery. I dont want to be unwell but I am and cant change that. Just thought they would be more helpful feel abandoned xx

[doodlecat]

Racer, have you tried CAB or Macmillan? Have you read through this thread as there is already a lot of advice on it.

You should not complete the form without getting help. My Dad who is 83 and has bowel cancer has just been refused Attendance Allwance because, despite me telling him otherwise, he filled in the form himself.

I applied fir DLA under DS1500 but Macmillan CAB helped me with it.

What agencies gave you tried?

I hope you get this sorted as we have enough to worry about without lack of financial support.

June

[racer]

Sorry silly computer !

[racer]

Think was too hard on the keyboard x

[racer]

Hi Ladies , I am not sure where my comment went but having probs with renewing dla form as gp and oncologist will not sign my special rules form as previous. I am so stressed over this as now I have to complete this form and not getting any support from agencies There has been no empathy at all just passed from pillar to post.Thanks xx

[bertie]

Really pleased your claim has been accepted, good luck with move on Friday X

[scottishlass]

WELL DONE GAIL. GOOD LUCK WITH HOUSEMOVE. I AM GOING TO FUNERAL IN WEST> SORRY CANNOT HELP WITH MOVE..

[Guest user]

I gave the DWP a call this afternoon since I hadn't heard anything and was advised I've had my claim accepted. Such a relief.

[Macie40]

Thankyou ladies for taking time to reply to me I have now contacted the macmillan centre and they are going to get a benefits advisor to get in touch with me so I will see how things go thx again and I wish you all well and enjoy this sunshine while it lasts
Love Macie

[lucinda]

Macie I do not know whether stage 4 cancer means you are automatically eligable for A/A, I do however know how horrific the forms are to fill out. I applied for A/A for my mother and mother-in-law, both times I got help from Age Concern and A/A was granted ( at different levels due to the fact my mother needed 24 hour care). I cannot see why you and your husband should not get the payment, as with DLA on the A/a forms it is not what you say it is how you say it so it is best to get someone who is used to filling out these forms to help you. Good luck.

L xx

[scottishlass]

Macie,I do not know anything about Attendance Allowance but as June has said above I am sure someone will be able to help you complete the forms and point you in the right direction. McMillan are helpful, as are the Breast Care Nurses and The CAB but June has already mentioned this. Perhaps you will be able to get Attenmdance Allowance for both you and your husband. Let us know how you get one. Sorry you have this added worry on top of everything else. Take care. Will look out to see how you are getting on. Val

[doodlecat]

Macie, do you have a Macmillwn nurse who could help you with the forms and give you advice on benefits in general? If not you could arrange an appointment with a Benefits Adviser at CAB. I feel you may benefit from a full benefits check not just with Attendance Allowance. Failing any of this at least call Macmillan helpline and ask for assistance on benefits. Their number is 0800 808 0000.

June

[Macie40]

Hi Ladies
Can I ask some one for some advece,This is my problem I was awarded Attendance/allowance at the lower rate in June 2012 for 18 months and I have just received a form to see if I want to renew my claim
It is exactly the same form I had 18 months ago but things have changed now that form was all about how ill I was during and following chemo.I then had steriotactic radiotherapy in october which scan shows no progression just stable.
I have stage4 triple neg B/C secondaries to sternum and feel reasonably ok but having said that I still have a number of other problems that are unrelated to bc'
I am 73 with an 82 year old husband who cared for me uo until last year but now has big health problems of his own so we have to rely on our daughter and son a lot now so the A/A is a great help to be able to help them a bit with the cost of petrol as between us now our life seems to be all hosp apps.
I dont want to try and fill these horrendous forms in if there is no chance of me getting itand with all the horror stories I have read on this site it does seem unlikely
I do feel for all you ladies that have been turned down for DLA as I know a lot of you have morgages etc and it must be very hard for you but I hope in the end you will all be successfull.
Am I right in being told that stage 4 should automatically get you A/A
I would love to hear back from any body that can advise
Best Wishes to you all Macie x

[bertie]

Totally agree with you Ismena re what this government is doing to the sick and disabled. Pleased you keep reminding everyone of our plight in your brilliant blog
Love Marina x

[Guest user]

I've only just found this post but wanted to put my experience in should it help any of you.

I was able to get my DS1500 form this year when I was dx with progression in my liver again, RMH were reluctant to do it as we are all 'hopeful' for time but I pushed and they agreed.

I then got my local hospice - St Raphaels in Sutton to fill the forms out for me and sort everything. It was all made much easier as they know what to say to make sure you get it. We did lots of focusing on my 'worst days' rather than the better days.

For those who have been turned down, fight back! It's horrible that we are in this position and I'm so angry at what this government is doing to our lives, talking away our financial support and not giving us the drugs! I'll keep blogging about it...

[bertie]

Do hope you are successful Gail, fingers crossed, do let us know xx

[scottishlass]

Fingers crossed for you Gail. Hope you are tolerating the Taxol. XX

[Guest user]

Lemongrove, your link was encouraging. I've had a letter saying I should expect a decision by 10 July. Macmillan set up the claim for me so hoping it will straightforward. But have been shocked by the cases being turned down and hope they are successfully appealed