69029members
362712posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Financial support/benefits for new secondaries dx

Highlighted
Member

Financial support/benefits for new secondaries dx

Do you think it would be useful for women with a new secondary diagnosis to have access to a 'sticky thread', like the travel insurance one, so that the information about benefits and other financial support doesn't get lost? When you are first diagnosed, how you are going to manage financially is a real concern, and I think it would really help reduce the stress of what is a ghastly period by sharing our experiences. I know that this information is posted regularly but then the posts get buried. If you agree, and can add to this post, I think BCC will make it a sticky thread.

So, here goes ...

First comment I would make is - get your onc to fill out a DS1500 for you. This opens lots of doors. The reasoning behind the DS1500 is that your onc is acknowledging that it wouldn't be too much of a surprise if the cancer killed you off within six months. It's not to confirm that the cancer WILL kill you off within six months, as some oncs seem to assume. Even the DLA don't expect you to die within six months, as it is assessed again after three years!

Secondly, approach a Macmillan/CAB benefits advisor to help you fill the forms in, preferably one who has experience of helping people with cancer. The website link is http://www.macmillan.org.uk/HowWeCanHelp/FinancialSupport/BenefitsAdvisers/MacmillanLocalBenefitsAdv.... You can self-refer or get referred by your GP. They know how to fill the various forms in to your best advantage.

Thirdly, there doesn't seem to be much information available all in one place about what you are entitled to over and above the obvious Disability Living Allowance and Employment and Support Allowance. I very much get the feeling that it is left up to the individual to discover what they are entitled to. In my case it took almost two years to find out about - via these forums - the disabled railcard and bus pass.

The range of financial support I have been able to access is:

* A Macmillan grant - I think it was about £500 that I put towards nursery fees
* Disability Living Allowance - because of the DS1500 this automatically came through. You can claim thie even if you are working, it's not means tested.
* Employment and Support Allowance, because I'd come to the end of a fixed term contract at work part way through my chemo and my contract wasn't renewed (what a surprise! no doubt in part because my employer offered a generous life insurance package as part of employment benefits and they didn't fancy paying out!). Again, because of the DS1500 and the DLA, I have been automatically put into the 'support group', which actually means that they leave you alone and don't expect you to turn up for medicals or any kind of fitness for work sessions.
* Disabled railcard - substantial discount off rail tickets nationally
* Disabled bus pass - free travel within your bus area, not sure how it would work if you were to bus further afield
* Reduced rate for access to local leisure centre as a result of being on Employment and Support Allowance (ESA)
* Disabled blue badge because of by Disability Living Allowance (DLA), which convenient and mostly free parking
* Because of Disabled blue badge I have also accessed a Motability car. Depending on the car you choose, you may or may not pay a lump sum up front, but then the monthly payments for the car (it's like a lease) come straight out of the mobility element of the DLA, and they pay for road tax, insurance, servicing, etc. All you have to pay for is the fuel. After three years you give it back and choose a new one.

Of course I would much rather not be receiving any of the above, but given my circumstances it certainly eases our financial situation, and having paid my national insurance contributions all my working life I have a right to claim what I am now entitled to.

Can't think of anything else right now, but I'll post again if I do, and if any other secondaries ladies have anything to add, please do.

Take care, and if you're reading this because you've just been diagnosed with secondaries, I hope that this info will help ease the stress.

Alison x

285 REPLIES 285
Highlighted
Member

Nice to speak to you again Dawn. I am back to normal (almost) and am feeling more comfortable again. It was just an experiment that I asked my GP if I could try... cutting down on anything as I was just feeling so tired. But I realise that being tired is better that being in severe pain. But I have juggled about with meds before and the highest dose of MST I was on at one time was 60/60. Now it is only 20/20 and I do not feel that I need to keep taking more and more of it. But alonf with MST I also take other painkillers so I was hoping that cutting down on something may help with the fatigue.
I know that you have told us a little of what is happening with you but how are you doing really and are you trying out any new meds? Any new treatments? I have never tried the dexa...Have you used it over a long period of time? Take care and kiss those grandchildren of yours for me. Love Val

Highlighted
Member

I suppose I am one of those who has benefitted most from DLA having claimed now for about 6 years. I didn't start claiming DLA when first dx with 2ndaries in 2002. I didn't even know it existed. That is why once I discovered it I made sure whenever a new member joined bcpals with 2ndaries that they knew what it is was about, and helped as much as I could to tell them how to proceed. I knew my bone mets were quite serious when they were diagnosed because it had already spread so extensively. I turn cold when I read of someone with bone mets, maybe nothing like as bad as mine are, who have had it spread to other organs. I know it could happen to me any day, and now with the tumour that has grown alongside my spine (nothing to do with tbe bone mets) who is there to say how long I have left? Thank goodness I had an onc who took that attitude from the outset and willingly signed my DS1500 when I asked her. There is nothing to stop the DWP changing the rules for claiming. If they intended it to be paid to those who had 6 months why didn't they stop paying out once that time had passed?

Val I really feel for you trying to cut down the pain meds. You just can't mess with this stuff. I long to give it up but have been on increasing amounts over 3 years now and it is so hard to find the balance between enough pain relief and being able to stay awake. The Marsden gave me a script for dexamfetamine. I use it very sparingly when I really need to be alert - like doing the company accounts! I do find that odd day just taking one helps tremendously but am really quite scared of being dependent on them.

Belinda I hope you get on ok with the taxotere/docetaxol. It is one that I was on a few years ago (I think it was in 1999) when it was quite new and the hospital had to get the written o.k.to use it. I would be kept in overnight each dose! I would say if you have any of the reactions they tell you about don't be brave!! but make sure they know immediately. It is easier to get control at that stage.

Alison it has been a great thread and I am sure it will help many who join here, as they read about what they are entitled to claim.

Dawn
xx

Highlighted
Member

Hi Crawford,

Just incase you didn't know with ESA you should be in the support group which is another £30.00 per week because of you diagnoses.

Hope this helps, unfortunatley cancer makes us very poor through no fault of our own and we're not all in a position of financial security.

Take care

Chris xx

Highlighted
Member

I understand what Geewhizz is saying, but the trouble is when someone gets a secondary Diagnosis, they don't know whether they will be around for six months or twenty years. I doubt people would claim DLA under DS 1500 rules, if they knew for sure they would be around for twenty years.
I am in receipt of DLA under DS 1500, and know that some would argue I shouldn't claim it, because I appear to be physically OK. But the trouble is that situation can change virtually overnight. Someone can feel great one day, but have a scan the next that shows catastrophic progression (as most progression is usually symptom free).
In any case, my husband and I have paid quite a bit of National Insurance, and 40% income tax over the last 40 years, and as we have never received much from the state (apart from education, and usual public amenities), and I probably wont receive a pension, I don't think I can be described as a welfare scrounger.

Highlighted
Member

I am really glad that you started this thread Alison. I am really worried about the new government's changes for people on benefits like DLA. I have spoken to my BC Nurse, GP and Consultant about my concerns about my DLA being reduced. I just don't know how I would manage, financially or emotionally if my benefit is cut as I rely on my car as I have said in a previous post I made on this thread. My position healthwise gave me great concern recently when I tried to cut down my morphine, with my GPs approval, to see if it would alleviate the tiredness I feel daily. It just didn't work...I lasted 8 days and ended up in bed crying with the pain I was suffering without merely 5mg of morphine. I am NOT looking for sympathy here, just pointing out that life can be precarious for some of us. We just don't know what is round the corner.
Most of the time I manage well, with the help of my husband and daughter. But there are days when I cannot do what I would like to and have to rest more and more. I just hope that we don't have to prove that we need this support (DLA) as we all have enough to cope with as it is. Do the people who make these decisions have a "scooby" about just how hard it can be to live with secondaries day in and day out.Eeven planning a holiday involves a "fingers crossed" approach. Thanks for listening. You are a great bunch of ladies, all of you. Love Val

Highlighted
Member

Well said, Alison. It's why I didn't get involved with the discussion on the moral argument but stuck to posting about the problems I have been having getting anywhere with claiming benefits. You are fortunate indeed if you don't need to claim but as I was the main breadwinner in my house, we have gone from having a reasonable income to nothing more than esa at £65.00 per week plus child tax credits. I'd defy anyone to try and maintain anything like a normal standard of living on that.

I won't say anymore on the subject though, because as you said this thread should be for people to discuss and get advice on the practical aspects of getting benefits, not the moral arguments.

Highlighted
Member

Just to respond to a comment made earlier, I started this thread because I thought it would be a resource for secondaries ladies wanting to seek financial support, not a forum to discuss the merits or otherwise of seeking that support. I think many of us feel guilty already for all sorts of reasons without adding to that guilt by feeling like somehow we shouldn't be applying for benefits that are there to help us.

And I agree with julie about the unpredictability of this disease. Someone I got to know via this forum died in January, having gone down hill very rapidly. I don't think anyone of us could say with absolute certainty that we will or won't still be here in six months' time.

Alison

Highlighted
Member

hi
I downloaded my form from the direct gov wed site.I filled it out and asked them to contact my oncologist,which they did.I was granted full benefit.I was advised to tell them everything and to fill it out as I felt on my worse days, I was in the middle of chemo and could not even get out of bed so told them that!
I could have claimed under the 6 month rule but could not bring myself to do it.It would have been far easier.
Good luck and hope you sort it out.Why is everything so difficult when we most need it?
The way I look at it this disease has made me so angry I am not going to be beaten by someone who does not understand,or a piece of paper!

Highlighted
Member

I'm still struggling with dla. Everytime I think I am getting somewhere I get knocked back. I asked my GP's receptionist for the DS1500 form about a week and a half ago and she said she would ask the doctor but I haven't heard anything since. I'm not sure if that's because it would normally take a while for them to put together or if it's because they have forgotten me or if it's because they won't do it for me? I suppose I'll have to go back in and ask again but it took me all my courage to go in the first time. I don't know why it is that in some areas the breast care nurse or macmillan nurse seem willing to sort it all out for you but in other areas you are just left to get on with it yourself. If it hadn't been for these forums I wouldn't even have known about dla.

Highlighted
Member

hi all, so glad i found this thread i too claim DLA, i was dx with BC in sept 10 took vol redun (been their 20 years and firm onway out)thought id be looking for new job in a years time, on the 20th nov 10 was DX with secondaries my BCN sorted form for DLA appart from the affects of chemo and slight back pain i manage ok (altho since lossing hair dont go out much)ive worked since 16 im 50 now, more than likley i too wont recive a state pension so why the bloody hell do i feel guilty for claiming????????????????im looking into drawing lump pension sum due to ill health dose any one know if this will affect DLA????once the hairs back and chemo done i intend to try to enjoy wat time i have left no matter how long that is....i, like i would think all u ladies would agree, would give anything to be geting up at 5am to go to work even at this time of year but like its been said before life has delt us a SxxT hand so lets make the most of it ....

Highlighted
Member

Yes many of us rely on DLA to help us cope financially after a secondary diagnosis.
I am not shooting anybody down in flames but we are not all lucky enough to be supported financially.

I am managing to carry on working (albeit reduced hours) but many people are not so lucky with their secondary diagnosis.

I suffer extreme fatigue, aching, tiredness and depression (not including other drug side effects). Some days I barely manage part time.
If i did not work and/or have DLA we could not cope financially at all. That is it what it is paid for, to enable people with disabilities to be able to live.
I will not be alive to receive my state pension to which I have paid into, this assuages the guilt.
Who is to know whose death is not 'reasonably' expected in 6 months with a secondary diagnosis. Things can change very quickly and this is the uncertainty we have to live with.
Julie

Highlighted
Member

Hi geewhiz

I think the reason why many of us apply for DLA is that there is no certainty that any of us will be here in 6 months! I sincerely hope we all are, I too feel well at the moment, but there are no guarantees and I know from my time on these forums that the bloody disease can progress very quickly. It makes sense to have everything in place to facilitate less worry when the 'unfortunate end is in sight.' I also have had to reduce my hours at work as my fitness levels and physical abilities have decreased and find the payment enables me to survive financially.

I must admit I did feel a bit guilty that perhaps I wasn't entitled to it as I can sometimes walk freely (not always though, due to the mets in my hip!)but realise that I would MUCH rather be continuing to work full time and this DLA goes some way to being a financial compensation for the completely shit hand life has dealt me and my family. I would certainly never have chosen to be here!

Highlighted
Member

Just to clarify things further - and I know I shall probably be shot down in flames for this but still.....

Disability Living Allowance (DLA) is available if you have care and/or mobility needs. In addition, the DS1500 form allows you "if you have a progressive disease and are not reasonably expected to live for more than six months" (direct quote from the Directgov site) to get DLA more quickly. This is not necessarily the same as receiving a diagnosis of mets.

I realise that I am fortunate, if anyone with secondaries can be called fortunate, in that I am currently well and responding to treatment, and have no intention of popping anywhere in the next six months. I have every sympathy for those whose situation is more serious, and realise that I shall reach that stage at some point too, but nevertheless I feel it is wrong to suggest that DLA is necessarily automatically available to everyone diagnosed with mets.

My aim is not to offend or upset anyone, but to ensure that false expectations are not raised.

Highlighted
Member

Hi Girls

Just to clarify things, your GP should automatically issue you with the DS1500 when the diagnosis of mets is made. Just so that you don't miss out on a payment, as soon as you have your diagnosis, either make an appointment with your GP or telephone your GP surgery and ask for the DS1500 to be completed. Your 1st payment should be issued within around 10 days of receipt.
I know this as a GP Practice manager.....with mets.

Good luck...Jane xx

Highlighted
Member

Hi Crawford,

It no wonder you're feeling at the end of your thether. I certainly would phone up and complain. You're going through enough without all this.

Can I ask if you've spoke to your onc? As they will also sign the DS1500 for you. I hope you get this sorted out soon;
you don't need this added stress.

Love
Chris xx

Highlighted
Member

Well I'm reduced to tears this morning but not out of kindness. I managed to get through to the Macmillan CAB advisor yesterday and she was lovely. She gave me loads of advice and support and said she would ring back this morning at 9.30. She said if she didn't phone me for any reason I should phone her, and guess what I did and she's not there. She doesn't even work for Macmillan on a Wednesday and the CAB where she works the rest of the time doesn't have a telephone line. I don't know what she's playing at but it's really annoying to the point that I feel like putting in a complaint.

If my doctor won't fill out my DS1500 form, I've no idea where that leaves me.

Highlighted
Member

Hi again,
My Gp wouldn't touch it, macmillan nurse and Oncologist signed mine the 6 months rule is unanswerable in many cases and oncs seem to know this. Yes i have a GP a bit like that too, makes you wonder why they do the job!!! Ha Ha silly me , it must be the salary of course!!
Can you tell i had a bit of a snotty conversation with mine just yesterday... I always feel like a sulky teenager when i see him! Do you have a local disability rights group? The lady who visited me, ( she was contacted by Macmillan nurse) reduced me to tears she was so kind. I hope you find similar
Good luck

Highlighted
Member

Hi All

Thanks for all your suggestions. I think I'm finally getting somewhere now.

I went to the GP surgery as you suggested,Julie and at first I was told to ask either a macmillan nurse or a breast care nurse. I felt like screaming because I was just going around in circles but when I told them that I'd tried all those avenues, they came up with the right form and they are going to ask the GP to fill it out.

I have one question though. Has anyone found that their GP interprets the 6 months rule strictly and won't sign it or is it more or less given if you have an uncertain prognosis. I'm not sure about my gp, he can be quite officious.

Highlighted
Community Champion

Sorry you are having problems. The difference in services is crazy!
I got referal to mac nurse from my GP, the Mac nurse filled the DLA form out for me I just had to sign them, she also got GP to sign the DS1500.
Perhaps a visit to GP or phone local MAc/hospice?
Good luck!
Julie x

Highlighted
Member

Hi,
I too struggled re DLA benefits until I rang my macmillan nurse, which triggered form filling and a visit from local disability rep. it all came together then.
I wonder why there is such a regional disparity, service disparity, and a total misunderstanding of the diagnosis of sec.BC.
I have a blue badge ( sec lung mets) but we need to keep an eye on these as changes are promised!!!
Good luck with your search for support, you deserve it, I hope it will help a little to help you deal with this disease.
hazlenut

Highlighted
Member

I think I contacted DWP and asked them to send me the DS1500 form
- see http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DisabilityLivingAllowance/DG_10011731
or
http://www.patient.co.uk/showdoc/23069010/
I discussed the with my BCN - I made it clear that I didn't want to see the onc's report! I filled in the relevant parts of the form, and my BCN checked it and arranged for it to send it off.

Highlighted
Member

Thanks Dawn,

It is really frustrating because I have tried ringing my consultant's secretary but she says she knows nothing about it, and the breast care nurse said the same. According to the instructions that come with the DLA all you have to do is ask your doctor or specialist for a DS1500 report but nobody I have asked seems to even know what this is let alone have the forms.

Highlighted
Member

Sharon my understanding is that all doctors, consultants. macmillan etc have these forms. Either go and ask your PALS people in the hospital or seek out the hospital welfare person. You might get some answers. It really is ridiculous isn't it.

Dawn
xx

Highlighted
Member

Hi All

I've given up all hope of getting any help from the Macmillan CAB advisors and was hoping someone on this thread might be able to help me. I'm totally confused even though the process looks like it should be quite straight forward. I had an oncology appointment yesterday and I asked him about form DS1500 and he said that I had to get the form from somewhere first and give it to him to fill out but I don't think this is correct is it? If it is, where do I get one from? I don't know where to turn to next??

Sharon

Highlighted
Member

To be given DLA under "special rules " includes the highest care component, but does NOT automatically give the mobility component. I've been receiving DLA since December 2009 (still here more than 6 months later 🙂 ) and I don't get anything for mobility.

Blue Badge application is separate (to your local council, I think, but others will know) and I was told that I would be very unlikely to get one if I applied.

Hopefully if my mobility deteriorates, I could reapply for the mobility component of DLA. Anyone done this in the past year or so?

Highlighted
Member

DS1500 is the form

Highlighted
Member

If you have secondary bc (stage 4) you dont need to fill out the long-winded dla form. Your doctor/ bcn/ onc can sinply fill out a special form which fast tracks you (cant think of the name of the form). The bcn where I had my radiotherapy did mine for me and I got my 1st payment within 10days. It is autometically paid at the highest rate (around £120) and it qualifies you for the higher rate of esa (mine went up from £65 to £90) and a blue badge for 3yrs etc. Get onto your gp/ bcn and get them to do the special circumstances form for you.
Good luck x

Highlighted
Member

Hi Alison. Yes, I did mean macmillan CAB advisor.

Gingerbud, I have made my application for ESA now. I made it on line and then they rang me back and as you say it took about 30 minutes. It was a very straight forward process so it wasn't too bad. I feel a bit more nervous about making a dla application but I may have to do that independently as well as things are dire financially and I can't wait any longer.

Highlighted
Member

I applied for ESA over the phone- saved dressing over forms + the advisor was on hand to explain questions where necessary. It took about 40mins. I was only eligable for contributions based ESA not the means tested bit coz hubby got a decent job etc. But it's still £90 pw due to me getting disability living allowance also (think it's £65 if no dla). It was really straightforward + they even back paid me for 3months from the date of my recurrence/ secondary diagnosis.
Give them a call I got the number out the yellow pages. Fone ur job centre for it alternatively.
Good luck x

Highlighted
Member

Hi Crawfo64

That sounds dreadful, and it's so stressful worrying about finances when you've enough other things to be thinking about. I take it you mean the Macmillan CAB welfare advisors? If not, follow this link:
http://www.macmillan.org.uk/HowWeCanHelp/FinancialSupport/BenefitsAdvisers/MacmillanLocalBenefitsAdv...

It took me a bit of to-ing and fro-ing before I managed to speak to mine as well back in 2008, but when I did get hold of her she was absolutely brilliant.

Hope you manage to sort it soon,

Alison x

Highlighted
Member

Has anybody else had trouble accessing the Macmillan welfare advisor. I have been waiting to see someone for about 8 weeks and every time I ring up I am told she is out on visits or gone home. I spoke to someone who assured me she would tell her that my case was urgent but that was two weeks ago and I still haven't got an appointment which means I've had to make my claim for esa without any help. I just hope I answered the questions correctly. I don't want to sound like I'm moaning because the service is free and I know a lot of people have benefited from it but I can't say they are helping me. I think I'll have to go elsewhere because we are desperate for money and can't wait any longer. Does anyone know of any other organisation that can help.

Highlighted
Member

Hi Sweetannimo

I have had payouts from all my pension pots after my GP signed the relevant forms. All I had to do was contact the pension provider and they sent me a statement explaining how much I was entitled to as a lump sum payout due to my diagnosis and a form for my GP to complete and sign. I just sent them in to my GP with an envelope to return to the provider and it was all sorted out very quickly.

I can't remember the wording on the form but it does ask if you are likely to die within the next 12 months. I am now nearly 12 months on from my payouts but I know that I am unlikley to survive long enough to have collected my pension. It is much better for me and my family that we have the money now so that our lifestyle has been maintained despite me no longer working - this means that life continues the same for our children.

I hope you are able to get someone to sign your form for you.

Sue

Highlighted
Member

Made enquiries with my private pension company re the option of tax free lump sum. They need a letter from my doctor stating that in his/her opinion my life expectancy is less than 12 months.

Even though my Doctor has signed my DS1500 form (which implies less than 6 months), he now says he needs a letter from my onc stating the above. My onc is saying that he can only confirm that my life expectancy is 2-3 years or possibly 4-5...

Not quite sure how I should be feeling here...
xx

Highlighted
Member

First DLA payment in my bank account already!! Only applied for it last week.

I was so impressed that I sent a thank you e-mail to the Bristol Disability Benefit Centre!

Highlighted
Member

Sorry, I meant to say ESA, not ESS.
I know there is a backlog with Warmfront, because we were promised a new central heating system six months ago now. Just hope that I'm still around next winter to take advantage of it. Our antiquated system is next to useless, so we rely a lot on our log-burner.

Highlighted
Member

Quick update re Warmfront:

The Warm Front Scheme: Currently the scheme is unable to accept new applications. This is a temporary measure. The scheme will accept applications again at a given date after 1 April 2011.

http://www.direct.gov.uk/en/MoneyTaxAndBenefits/BenefitsTaxCreditsAndOtherSupport/DG_191171

xx

Highlighted
Member

Hi Dawn,
Oh yes, very relieved! I only claimed for the Care element as I am still quite mobile. I was told over the phone so haven't got the award document yet to see what it says.

Thank you for the link below - very useful!

I have also made enquiries re Council Tax benefit and am waiting for them to send/email the form through as the on-line one doesn't work!

Thank you all so much for this thread - it's been a godsend.
xxxx

Highlighted
Member

Hi Anne Marie,

You must be feeling quite relieved :). Did you just get the Care element of DLA or was it the Mobility part as well? Originally I only claimed the care element back in 2006 but 2 years on I felt ok about applying for the mobility part and was amazed when they backdated it to the original claim for Care! I just did a bit of googling and this CAB site is very helpful

http://www.adviceguide.org.uk/index/life/benefits/

I think lemongrove might mean ESA and not ESS. Sorry if I have this wrong lemongrove.

Dawn
xx

Highlighted
Member

Thanks Dawn and Lemongrove,
Just been told that I have been granted DLA at the highest rate. This will certainly help as I'm on a contract which expires end of August this year and there is no guarantee of it being renewed....

Could someone please tell me what ESS stands for?

I have also asked for my private pension provider to send me information re the possibility of a tax free lump sum. Will keep you all posted.

Anne Marie
xx

Highlighted
Member

A couple more things some might be able to get, in addition to DLA under DS1500, and ESS (by the way, if you get DLA under DS1500, you should also get ESS at a higher rate provided you have paid contributions)
(1) Council tax discount. They might try and send you a huge booklet of very complicated incomprehensible forms to fill in, so make sure you tell them you are claiming as a disabled person - because the form is then just a simple single sheet. All you need to prove is that you have a bedroom set up for your sole use.
(2) Warmfront Scheme. This entitles you to free modifications such as new roof/cavity wall insulation, and new central heating system. You must be in receipt of DLA under DS1500, and your existing insulation or central heating system has to fall below a certain energy standard.
(3) Motability Car leasing Scheme: Allows you to use part of your DLA to lease a car. For many cars no deposit is required, and servicing is included.

Highlighted
Member

I don't know if things have changed with regard to getting the Blue Badge. I applied for mine in 2005 and had not heard of DLA at that time. So obviously no questions were asked about DLA or I would have been aware. The one question I remember having to answer on the application was how far I could walk comfortably. No 'choices' were given so I said less than 100yds. I sent my application to Kingston borough (Surrey) and was given the Blue Badge without any further request for confirmation from GP or my consultant. I did put in the form that I had very extensive secondary bone mets affecting my spine and hips. Someone told me that the criteria re distance one could walk has been changed - maybe some of you have recently seen the form can let us know, but I think they are looking for a distance of less than 50 yds/metres. I have heard that it is easier to get the Blue Badge from some boroughs. (Post code lottery again?)

Dawn
xx

Member

Thanks Sue!
Did your DLA award letter include the bits about mobility or did it just say you were awarded DLA?

Anne Marie
xx

Highlighted
Member

Hi

I had to send a copy of my DLA award letter with my application for my Blue Badge. AT the time I applied I was stuggling to walk due to spine mets but although that has improved I can't walk far with shopping so I still have my blue badge and use it when I need to. I generally use it to get free parking, especially at hospital as I there every week at the mo, I don't usually take up a disabled space as I am not in a wheel chair and others are far worse than me.

Hope this helps.

Sue

Highlighted
Member

Hello Ladies,
A bit confused re the Blue Badge application. I have applied for DLA with the DS1500 and should therefore get the higher rate. When I looked at the Blue Badge application form, it aks:

Do you receive the higher rate of the mobility component of Disability Living Allowance?
Please supply evidence.

I presume that this means you need to have filled in the mobility section of the DLA form?

I personally don't need it at the moment but who knows what the future holds...
xxx

Highlighted
Member

Hello all,

I'm not sure if anyone has mentioned that anyone with a life expectancy of less than a year can apply to have their private pension fund as a tax free lump sum now.

I called my pension provider who told me they'll send me a special form to be completed by the oncoloigst or nurse and the payment will then be sent.

Clearly you need to think about the implications if you have a family and intend for them to claim your pension after you're gone but to me it will mean the fredom to give up work as soon as I need to.

I hope this helps someone.

Highlighted
Member

Hi Dawn

That is a very good point about being careful taking part in races etc. if you are claiming the mobility part of DLA, I hadn't thought about how that would be perceived. My MacMillan nurse filled my form in for me, she asked me to describe how much I felt on the worst day I had had. I described how my hip joint can be agony and I can hardly walk without holding on to something. I felt a bit uncomfortable at first claiming for this, as I have many days when I walk and function normally, but if I overdo things my left leg is very painful and for the next couple of days I hobble around and experience quite a lot of pain. It is little things like difficulty putting socks on, picking things up that she said were relevant.

She reassured me that I was entitled to claim for the mobility part, as I can't guarantee that on any specific day that I will be completely mobile.

I do still suffer with guilt and worry that somebody will 'catch me out' on a day in which I walk normally, but I try to balance this with the knowledge that it will get worse and when I have to go ahead with the hip replacement.

Good luck with anybody who is still waiting to claim, I also see it that if I didn't have all of the DLA I would have to be working full time still, so my leg would still be in the bad state it was in before I gave up full time work and was on my feet all day.

Highlighted
Member

MrsBlue I forgot to reply to the question re Winter Fuel Allowance. As you were 60 before 5/7/50 you qualify this year. If you are the only one in your household the payment will be £250. If your OH is over 65 he should already be getting it, so then you will get £125 each.

Dawn
xx

Highlighted
Member

Alison I don't think anyone posted about the free prescriptions, but it is always worth repeating anyway.

MrsBlue - glad you got the DS1500 sorted. It's interesting that they contacted your bcn to ask about how far you could walk re the mobility part of DLA. It seemed odd to me a while ago that some were saying they automatically got the mobility part when they claimed with DS1500. It certainly wasn't the case when I first claimed, although it did help to shorten the questions/answers required.

Recently when I was asked more questions by the DWP they contacted the Onc at the Marsden. The onc contacted us by telephone but at the time I was sleeping in and Peter did not want to wake me. The onc having ascertained he was my 'carer' asked him about my ability to do certain things. I think he asked if I went out and about on my own and Pete said not if he could help it! LOL.

I didnt claim the mobility part when I first got DLA with the DS1500. But later when things got worse and I was a lot less mobile I did contact them again and filled out the forms for the mobility part. So if you do find yourself less able to do things, then do contact them again and get the Marsden BCN to help with this. I think as the Government is looking to reduce costs everywhere I think they will be watching DLA claims a lot more than in the past. I think if anyone is claiming the mobility part they need to be very careful if they consider taking part in any sort of charity fund raising that involves walking/running! Get others to do it on your behalf 🙂

Dawn
xx

Highlighted
Member

Hi all,

Sossages, sorry not to have replied earlier but I've only just come back to the forums after a wee spell away.

If you have access to a computer then the link for initial info about disabled bus passes is http://www.direct.gov.uk/en/DisabledPeople/MotoringAndTransport/PublicAndCommunityTransport/DG_40193...

Bus passes are given out by local councils so do also search for bus pass information on the website of your local council, or give them a ring. The application form will tell you what evidence is required to show that you are eligible.

I see that Fran has posted the link for the disabled persons railcard.

Has anyone also included free prescriptions for cancer patients on this thread? I know it's been discussed elsewhere and BCC also posted a note about it when they first came out last year. Application forms are available from GP surgeries and oncologists and need to be countersigned by someone treating you.

And I absolutely agree with everything that dawnhc has written about getting someone like a Macmillan nurse or welfare benefits advisor to help you - it really does reduce your stress and leads to a better outcome. That's what they're there for!

Alison xx

Highlighted
Member

I've just found this useful thread - thanks 🙂

My situation: bone mets dx 2006, liver mets dx 2009 at which point I talked to my BCN about DLA under special rules DS1500. Filled in form (I asked not to see a copy of my medical report) and was awarded highest care component, but nothing for mobility. (My BCN told me that the DWP phoned her to ask how far I could walk - I did a 7.5-mile sponsored walk for another cancer charity in May 2010 so I'm glad my BCN was honest!)
I'm now 60 and am wondering if I can get winter fuel payment this year?