i am Bertie's daughter and will definitely be ringing the contact on her letter followed by a letter and then whatever it takes to get this decision overturned. Your advice is invaluable so thank you all and Lesley I will definitely contact you for your links if necessary.
thanks again and best wishes to you all,
I'm so sorry to hear this, Marina, and just want to add my voice to the others here. You must get the help and support you need to challenge this outrageous decision. I understand that the very idea of this may be really overwhelming, especially as you're not feeling great at the moment, but the very fact that you're struggling just goes to show that you are absolutely entitled to this payment and should get it reinstated a.s.a.p.
Anecdotally, it does seem that people are getting these decisions overturned when they challenge them, but I'm sure that many people are just too sick, tired and weak to go through the process and/or don't know where on earth to start. And this sorry excuse for a government is literally cashing in on people's suffering.
I totally agree with Lemongrove that this kind of exploitation of our vulnerability should be at the heart of BCC's secondary campaign this year. These are the issues that really matter to us all.
Best of luck, Marina. We're all behind you on this!
I too was turned down for my DLA renewal when I received the forms last November. I argued my case but the advisor was not very sympathetic and really had no idea about Stage 4 BC anyway. At the time I was having some bone pain investigated and even though they knew, at the DWP, that a CT scan was imminent they still withdrew my DLA. As it turned out I had had progression and eventually got a DS1500 signed by my GP and they reviewed my case and I was awarded DLA at the rate I'd been having plus any money not paid whilst they investigated. I had also spoken to a MacMillan advisor at my local hospital, who worked for Citizen Advise Bureau, and they said if we appealed we were likely to win. As it was the DS1500, which I hadn't 'renewed' initially as I felt so well, managed to do the trick as it stated my current, progressive condition.
I hope you have professional advice to help you with this, it really is the pits and I felt so frustrated and annoyed in November when none of my long arguments and reasons were taken into account.
Marina cannot express how shocked, horrified and angry I am about this. It's not just that I feel for you (which I do very much), it's that the DWP have the disgusting affront to do this to terminally ill people. If this can happen to you it can happen to all of us with stage 4 BC can't it?. It's an absolute disgrace.
Just wonder what BCC think about this, and whether they are going to do anything about the situation? It's a joke that The Secondary BC Awareness is going to focus on body image, while the reality is we're having to deal with cr*p like this.
Marina I stongly agree with what everyone else has said and believe that you should appeal (because apparently most appeals are succeeding). You must though get help to do it, and it would be a good idea to get your MP on side. Having done casework for two local MP's I know from experience that petty bureaucrats in government departments really start hopping, when an MP start asking questions . If your local MP is a Tory, he/she won't want a case like this getting out, because it would reflect so badly on the Government - if he/she is Labour they would be desperate to publicise it.
I'm confident that if you get help, and involve your MP, you will win, but If you don't I think you should consider a Judicial Review. Let me know and I will give you the details of a Barrister (QC) who occasionally takes on work on a Pro-Bono (free) basis for stage 4 cancer patients who are suffering as a result of things like this. I can also put you in touch with a Journalist on the Sunday Telegraph, and a BBC Broadcster, who may be able to publicise what is going on.
I know you have not felt well recently, and the last thing you want is a ruddy battle - and it's disgusting that you/we have to battle. But please, please try.
Thank you all so much for taking the time to give me advise. I felt so down earlier today after reading this horrible letter I just feel why was I entitled to this allowance 3 years ago and now, although feeling much worse, I am having it stopped by one person who says in 'his' opinion I do not qualify for DLA.. It really has upset me but I will try and get some help to get the decision reconsidered.
Marina as Val,or as Julie has suggested a reconsideration, you should appeal. When I first applied 3 years ago I was turned down I was turned down, but when I appealed it was granted indefinately. You should however get someone like a Macmillan advisor to help you, it is often a case of not what you say but how you say it and the advisors know how to answer the questions in the best way. Do get as much medical evidence as you can. I stressed that as well as the obvious phsical help I needed I also needed someone with me when I was out and about as I felt scared and apprehensive, and I also needed emotional support from a third party to allow me live a normal life. I also stressed I was afraid of having baths and showers unless someone was around as I was scared of falling and also had the same fear when walking in busy places due to the strain the illness placed on me emotionally.
Good luck and please do try again.
Marina do as Val suggested and gather evidence but also get help to complete. CAB or Macmillan. I was recently awarded DLA and the forms were completed by me at Macmillan CAB and supportred with DS1500. As Julie says though start with asking for a reconsideration. I used to do some voluntary work at CAB and our benefits adviser always said you never ever appeal without help. Good luck with this.
Do as Val suggests and get some supporting evidence. However beforestarting the appeal process I would suggest that you ask for a 'Reconsideration', a statement of resons, copies of all the medical evidence used and a copy of the form ( if you did not make one).
You will be able to see exactly how the decision maker reached their decision. If they sent for any medical evidence and if so was it accurate, current and did it reflect your needs ?
If it didnt then you can send in current medical evidence ( if you get any) but also explain how this disease has a monumental all consuming impact on our lives.
Detail your diagnosis ( even if you did before), how it impacts physically and emotionally, your worries, fears and recent medical history.
A reconsideration is a second bite of the cherry, before an actual appeal. Your case will be reviewd by a different decison maker who may have more understanding.
A tip.... time will be running short, get your letter planned and get any other evidence as soon as you can (GP, breast care nurse, consultant, therapist etc).
If this fails, still appeal but take your paperwork to an organisation that may be able to help you; one of the DIAL organisations, Welfare Rights or a cab.
Wishing you luck.
If it was me I would appeal against the decision. I would also talk to my GP and my Consultant to ask them if they would be willing to support you with your clqaim. Perhpas they could give you a letter to enclose. I would also get in touch with my Breast Care nurse or the McMillan team and tell them about your recent letter and see if they can help with the appeal letter. I have heard that many cases that have been turned down are then passed at appeal. This is something that many of us on here is dreading so please let us know how it goes. Perhaps someone else will be able to offer some better ideas. But I wouldn't give up just yet. But I know that is hard when you do not feel well anyway. Val
Just got the letter I was dreading about my DLA and they are not re-newing it. I have been so upset all day especially as not feeling too good. The letter was so cold and matter of fact, my DLA was due for renewal in September and they sent me the forms end of May, the only difference this time to 3 years ago is I didn't fill the forms in myself then, it was dine by a welfare officer at the hospital. I did speak to her this time and she said to just fill it in myself. I just can't believe they are not awarding me with anything, if they reduced it I wouldn't have minded but just take it away. I am no better than I was 3 years ago, worse in fact so maybe just the rules have changed. Feel so upset and angry as the money was such a help to us. Sorry to go on.
Take care everyone and thanks for your previous help
That was great June, so pleased you got it ok. Lesley will look into it thank you for the info, do hope you are feeling alright at the moment. I have had a really nasty pain (a new one!) at the bottom of my spine, left hand side, it is not an ache it is a painI first thing when I get up it seems fine but by lunch time when I have been walking around it gets really bad, it started last Thursday so will give it a while longer before I go somewhere, sorry to go off trasee from DLA :). It just seems sometimes we go from pain to another eh!
Keep well and enjoy your chocolate cake Lesley
Marina I was just recently awarded DLA under special rules and it took around three weeks from applying. The first I knew it had been dealt with was when a backdated payment arrived in my bank account. The award letter arrived a few days later.
Bertie, that delay just doesn't seem right. because they are supposed to expedite applications under DS1500. I suspect that some areas are not all that ofay with DWP rules. I suggest you look at the link I have supplied above, because it contains a phone number for those who wish to claim PIP under DS1500. They should be able to tell you if that sort of delay is correct, and even if they cant explain why your claim is taking so long, they should be able to direct you to the appropriate person who can.
Let us know how you get on.
My husband has just delivered a chocolate cake and coffee, so must go.
Thank you Lesley that is interesting. I am still waiting to hear from them, forms were sent about 3 weeks ago, just got a letter over 2 weeks ago saying it is being dealt with. Feeling a bit worried about it as not feeling too well at the moment!! Good to hear from all those who have received it ok, thank you
Basically the page explains that if someone is claiming PIP for the first time under DS1500 rules, the claimant will only need to get a DS1500 form completed by their doctor/nurse/Macmillan support. They will not need to complete a "how your disability affects you form", or a face to face interview. They will also be guaranteed an award of the enhanced rate of the daily living component of PIP without having to wait until they satisfy the qualifying period or prospective test. People already in receipt of DLA under DS1500 who notify the DWP of a change in circumstances will be asked to claim PIP, but the same rules as above applies.
Val I had a letter from DWP at the beginning of the year stating I would not be reviewed until April 2015, i was originally granted DLA indefinately.Also said that if I was over the age of 64 I will still get indefinately without needing to be reviewed, I will be 64 in May 2014 so I am hoping that there should be no problems in continuing to receive it.
I hope you do not have any problems, like you I rely on my mobility car and am collecting my new one next week..can't believe it is 3 years since I collected my last one, it is lifeline for me as we live on a beach which is isolated from the main town and buses only run once a hour but finish early evening and do not run Sundays. I do use the bus sometimes but find the standing and waiting a real problem, and they are not very good timekeepers.
So plesed you enjoyed your holiday and nice to see you posting again. xx
I renewed my DLA successfully this year. The forms came through in January (renewal date June) stating that they should be filled in immediately. I have visits from a palliative care team and the benefits advisor filled them in and sorted it all out. Had the confirmation about three weeks later. The system is changing, what differences will occur after the deadline date I'm not sure, although my nurse seemed to think it unlikely that 'special rules' people would be adversely affected.
Bumping this thread up to see if anyone has had problems with renewing DLA or any probs with new benefits. I am keeping my head down but at the back of my mind I am still worried that if my claim to DLA is changed I could lose my Motobility car. This "not knowing" what changes will affect us is not good. Anyone any news?
Gail it was lovely to meet you for the very first time even although we share the same lovely Consultant and ward for treatment. I hope the Taxol works well for you. As I told you last week I did not imagine that I could feel like this again. I finished Taxol at the end of April and already my brain is functioning better and I feel like the real me has returned. Chemo does wonderful things to kill off the cancer cells but it can sure mess up your head and the way your body works.
My hair is peeping through at last. I also want to ask any ladies whp have tried the FAST shampoo which has recently come on the market. I would like to know if it was worth the £27 that it costs and how good it worked for you. Val
As I now have some liver mets and having problems breathing with pleural effusions on both lungs onc has finally agreed I can get a DS1500 form. Will have missed the deadline for DLA so will have to see how I get on with PIP now. SBCN thinks I should hear from them in a couple of weeks.
I've had experience of claiming DLA for family members - may be worthwhile getting in touch with your local carers' centre as most offer excellent support for claiming DLA/PIP etc Sounds as if your local Carers Centre might be in Croydon http://www.croydoncarers.org.uk/ but if not just google Carers Centres and location. You might also like to check out advice on claims/appeals on the Carers UK website (Section on Help with money). They also have a helpline you can ring Good luck.
DLA granted with no problems until 2016. After ticking no to so many boxes about assistance I was not expecting anything.
I wrote a paragraph about risk of bone fractures & that my husband has to look after me on bad days. I included my last clinic update, a referral letter to orthopaedic team, my repeat prescription list plus the DS1500 from my GP.
I guess my advice is include as much background information as you can especially if it looks scary reading to someone who's not in the know (the assessor!)
I admit I'm relieved I was still able to apply for DLA rather than PIP which I suspect will have many teething problems as its introduced.
Hi Lucinda, I am sorry I didn,t mean RMH I wasn't in there I was taken to the Croydon University Hospital where treatment was not very good, the Marsden have been wonderful always, in everyway, the trouble is as an emergency you are taken to local A & E. I emailed Melissa at The Sutton Marsden and she is getting the person from welfare, who actually initiated my first allowance, to contact and advise me. Like you Lucinda I didn't know anything about DLA or special rules, they were brilliant and did everything for me, it's just at the moment still feeling a bit low after my illness and am finding I can't cope with things as I normally would. Hope you are keeping as well as you can, thank you so much for your help
Marina sorry to hear they have changed things at RM,I have always found them very helpful.I know CAB and Macmillan are pooling their recources as I am involved wityh the setting up of services at our local Macmillan support centre.I did not apply for my DLA via DS1500..I was a total idiot and filled out the whole form..I did however get higher rate indefinately.If you got it via DS1500 originally there is no reason it will not get renewed.As LG says just approach the form logically and stress your inability to do anything unaided.I stressed I was unable to cross roads or walk around alone as I would feel unsure and panicky, and that I am unable to walk 100 metres unaided..personally I have crutches , but also if you have been unwell I am sure you are unsteady and need someone with you to ensure you do not fall. Have you asked the sbc if she can help with the form in any way? I also find oncs secretary really helpful at RM Sutton.I know a lot of GP's are happy to fill out DLA forms,mine asked me if I was claiming and said to contact him if I needed any help.
I am sure that RM must have put some sort of system in place..have you contacted them to see who is now responsible for benefit advice.It is stressful when you are feeling unwell and then have to deal with all these other problems.Hope you manage to get it sorted
Leslie thank you so much for information much appreciated as these sort of things do worry me. I saw on the other thread that you have been having a horrid time, do hope you are feeling a bit better now and get out of hospital soon. I totally agree with you at out the closures of all these A & E's, I sent several emails, along with many others about the closure of the Lewisham A& E, they spent millions building this brand new annexe to the hospital, I just find it all both ludicrous and frightening, I don't actually live near Lewisham but know the hospital well from the past. 2 months ago I was taken ill very suddenly, like you high temperature and couldn't stand up, in dreadful pain, anyway emergency ambulance was called and I was taken to local hospital, it was pneumonia/septicaemia, my kidneys had started to fail too all very frightening. The Resus Dept were great there but the rest of the treatment I am afraid was not so, in the end I also caught the Noro Virus that was going around the hospital and closing wards. I am being treated at The Marsden for my cancer but when you have an emergency you have to go to the local hospital, unfortunately. Still I am recovering now thankfully, hopefully you are too.
Bertie the DS1500 renewal form is not that difficult if you approach it slowly. The key change (and deciding factor), is whether you can walk unattended for more than 100 metres (and the key work there is unattended). The fact is that someone may be able to walk 100 metres, but if they are very ill they you may not be able to do it unattended. For example, I had to reapply for my DLA under DS1500 at Christmas 2012. At the time I had just been diagnosed with brain mets. Technically I could then walk for 100 metres, but due to the fear of having a seizure if I went walking on my own, I would not be able to walk 100 metres unattended. I said this on my claim, and it was accepted.
The second key thing is to get your GP to complete a new DS1500 form for you and send your completed claim form together with your GP's completed form in the same envelope (simplifies everything and gives less room for crossed wires).
Don't know why Macmillan have contracted the CAB to take over the claims element of their work. Have not heard good things about this deveopment (but bad experience could be isolated).
Hi Carolyn, sounds awful why do they make this so difficult for us you would think as we are re applying for DS1500 everything would be straight forward as unless there had been a miraculous cure, at best things will be the same or at worse deteriorating. I am pleased you finally got yours just wish we didn't have this extra worry on top of our illness. I am getting in quite a state about it, silly I know. I too have lung mets diagnosed 3 and a half years ago.
Thank you Chris for your help and so pleased you got yours ok. Do hope you are both keeping well.
Love Marina x
The Oncologist agreed to my DLA and the breast care nurse signed for my DLA. The Macmillan CAB person at the Oncology Centre put my application in for me and I think is the best experienced at doing this.
I was certainly not able to do it myself as I felt so overwhelmedby the number of letters I was getting from everywhere and felt bullied into giving up.
As the rules are changing I do suggest you act on this promptly and make a fuss if this is not dealt with urgently.
Best of luck with it all.
Hi Marina, my DLA was up for renewal about a month or two ago and the forms were sent direct to me. Three years ago my DLA, ESA, Blue Badge, everything was all done for me by a lovely lady at Macmillan. I got stressed out by the forms as soon as I received them so decided to go back to Macmillan who said I had to speak to the CAB people attached to Macmillan. Was told to wait a couple of months and then make an appointment! When I went along for the appointment the lady I was seeing was not the most helpful and I got asked all the questions about how far I could walk, if I could dress myself etc. When I mentioned DS 1500 to her as I had the DS1500 the first time around she says 'Do you know what that is'? Well yes. She seemed reluctant to even consider me having one. I told her I would get one signed by my Onc to which she replied ' If you don't get it to me by tomorrow I will send the forms off'. That gave me loads of time then. We got the DS1500 sorted a few days later but after a couple of weeks I got a letter to say my DLA was stopping, then another to say they were waiting information from my GP - I got well stressed about all this. Eventually I got the letter to say my DLA was continuting at the higher rate as it had been previously.
I went through a lot of stress because some woman thought the DS1500 was not necessary!!!! She should work for ATOS.
Make sure you get your DS1500 as that seems to override everything else on the forms.
PS I also have lung mets. Diagnosed with them 3 years ago.
Hi Marina, when I got DLA originally a Mcmillan nurse liasing with my GP did the lot, all I had to do was sign. Don't worry you won't have to work through new forms yourself, ring your GP tomorrow, Good Luck Kris x PS hope you feel stronger soon
Thanks for your reply the first time I got it the hospital did it all for me all I had to do was sign the forms, I am under the Royal Marsden. This time they have sent all the forms to me, they are quite daunting especially when you are not feeling 100%, I feel very worried about them. There is a secondary breast cancer nurse at the Marsden so maybevI will get in touch with her for advice. Good luck with yours look forward to hearing how it goes.
love Marina x
i'm about to apply for DLA (have until 9th June until it changes) & it's my GP that's instigated this. Can you approach your GP? I also have access to a Macmillan nurse who is very helpful with this sort of thing.
i'll post with my progress.
I wondered if anyone with secondaries and is currently receiving DLA 1500 Special rules, I am and have just received ny renewal forms, last time the Marsden filled them in for me as they had the forms but now I am a bit worried as I have heard it he new agency responsible for these allowances are dealing with things differently. I was just wondering if anyone has applied recently and how they got on. I am just getting over pneumonia with septicaemia so feeling quite low, I have mets in my lung. Hope everyone is doing oki.
Love to you all