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
Marina x
Hi Marina
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.
Ingrid
Hi Ingrid,
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
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
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.
Good luck!
Carolyn
PS I also have lung mets. Diagnosed with them 3 years ago.
Hi
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.
Esha
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
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).
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.
Marina x
Just bumping up x
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
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 x
Hi
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.
Ingrid
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 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.
Nora
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.
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
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.
Alison
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
My DLA was renewed last year, the same as before…I’m in my early 50’s. x
Gail 5 and Scottishlass, I’m posting a link to a DWP page that should allay your concerns.
dwp.gov.uk/docs/pip-toolkit-factsheet-012-special-rules-terminally-ill.pdf
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.
Hope this helps.