I think Lily Anne's thread was inadvertently hijacked, sorry Lily-Anne. The eligibility of benefits is an interesting question as some seem to have access to certain help while others do not. I don't know why this is and can only comment on Angie's situation. However, I do have an old friend who's wife also has OC. I know they receive absolutely zilch in terms of state assistance which I think is unfair. The difference between Angie and my friend's wife is stage/grade and prognosis. I thought out of respect to Lily-Anne it would be wise to begin a new thread about disability benefits. It may prove useful for those new to the site/disease in terms of what is available etc. If there is any one out there that has an in depth knowledge of the system, particularly of the changes, any comment may be useful to many.
Disability benefits and criteria.: I think Lily... - My Ovacome
Disability benefits and criteria.
Well done Andy this is a good idea 
Love x G x 
Yes Andy it's a very good idea.
I looked on line and didn't seem to fit the criteria but may investigate further as I have advanced ovca and a small renal tumour .
I don't know enough about benefits and haven't been given any advice so this discussion has been very helpful to me
Thank you everyone
Anne x
Hi Anne, I can't shed any light on who is or isn't able to get DLA/AA only that Angie got it from diagnosis. I think a lot of ladies have to wait for the histology from their ops before their diagnosis is confirmed. This wasn't the case with Angie as she had a biopsy taken before starting chemo. Whether that has a bearing on the benefit situation I simply don't know. I only know that Angie's prognosis gave her entitlement. Maybe others will shed more light on it.
Andy x
Hi Andy
Thanks for your help.Its a difficult system which I will investigate further when the school holidays are over.I think the recent changes may have made it even more difficult.
I am going to London tomorrow with my daughter to visit a really good friend so will take a break from here.
Best wishes
Anne x
Anne.
yes it is a bit of a nightmare, but if you get stuck let me know only too pleased to help.
Enjoy London hope its not too warm. Also good to have a break from here sometimes. Ha Ha.
Regards Barbara
Thank you so much Barbara-I may take you up on that.I wasn't given any advice when I was diagnosed.
Love Anne x
I have had help from the Macmillan benefits advisor at one of our loacl hospitals and he even filled out the forms with me and acted on my behalf
Hi Anne, I would ask your MacMillan nurse to fill in the forms or their social worker. I rang every dept in the DWP and got loads of different answers saying the same thing 'you are not entitled to anything'
We have a St David's Foundation here in the Valleys and their social worker filled in my forms and hey presto. We as laymen have no idea how to fill in those 'books'
Best of luck
Chris x
chris
Spot on..
Regards Barbara.X
Hi Chris
Thank you so much for your reply particularly when you have got so much to deal with yourself at the moment.
I am not having anything to do with hospitals-I hope!-until September and will make an appointment to see someone about it then-I will let you know how I get on.
Like you I have had no success with DWP but you and others here have encouraged me to try.
Thanks again
Anne xxx
There are 2 threads to this.
DLA Disability Living allowance
AA Attendance Allowance.
Changing are taking place on both 2013-2015 over a period of time.Called Personal Independence Allowance
DLA was for people under the age of 65 if applied before your 65 birthday.
It has 2 components which includes a mobility allowance
The care component had 3 rates, Lower Middle and Higher for personal care
The mobility component has 2 rates Lower or higher
If you receive the higher mobility rate. This will entitle you to a mobility ca,r and if you dont take this up free car tax.
You will automatically qualify for a blue badge. Although there are stricter rules now you have to get a letter from the DLA Blackpool to prove that you have been receiving your payment of DLA in the last 12 months it could be less if you have not had the benefit for long and you enclose this in your application even if you have had a badge of 3 years and re-applying .This is to stop fraudulent use of the badge. This is happening in Leicestershire, I cannot speak for other County Councils, so its a good job to check up if you are near to re-applying as it takes time
People who where award life time allowance for other illness before 65 will continue to receive this DLA it does not change over 65 to go to Attendance Allowance.
But as I have said before this is all changing in the time frame.I have mentioned
Attendance allowance Well I bow out here wouldn't want to shoot myself in the foot I am sure there are others who better able to advise on this one .
Regards Barbara..X
I was thinking along the same lines! I was told that the phrase "progressive ovarian cancer" was the key thing. The important points for the disability benefits etc was your mobility. When the hospice CNS filled in the form for me, she wanted to know things about my worst days, not an average day. It is well worth anyone getting in touch with their local Macmillan advisors, or hospice, if they have a contact, as they can help with the forms as they did for me. (Plus an application through the hospice is fast tracked through the system). Not sure how the new system works, but I would expect it to be similar.
My GP has notices about free prescriptions for cancer sufferers, and I understand anyone in definitely England, not sure about the rest of the UK, has been entitled to them since around 2009. Your GP has to sign a form and it is sent to the relevant people. You then get a certificate that is valid for 5 years. You need to take the certificate with you to get your free prescription each time. Once you have sent the form off, if you need a prescription before the certificate arrives, ask for a receipt so you can claim the cost back, when you get the certificate you take it, plus any receipts to a pharmacy and they refund the money there and then.
That's how it worked for me, so I hope it helps
Chris
Thanks Chris, this is really helpful as I'm wading through a pile of papers as the system in London is different to Cardiff. In Wales nobody pays for prescriptions.
I can confirm Macmillan are really helpful for advice on benefits. They suggested I complete the registration form so I'm on the database for benefits. I don't qualify for anything at the moment but if I should decline and need attendance allowance in a hurry this will speed things up for me.
This is a really useful blog. x Annie
This is a really good idea, I didn't know that we could do this. Mcmillon are brilliant, I'd suggest anyone thinking about going for a claim to ask for help and advice from them.Good luck with it Annie, hope you won't be needing it for some time to come, its so not nice needing this and it really is for the needy, lots of cancer sufferers are lucky enough to never feel it necessary to apply or turned down if they did.
Hi Chris, I think you make a good point about the Macmillan advisors. They took the stress out of the situation when we already had a lot to deal with. I can't praise them highly enough.
Andy x
Tina it is nothing to do with being needy it has everything to do with prognosis i.e. life expectancy of six months ...automatically fast tracks you into a position of entitlement and therefore is not means tested regardless of wealth it is awarded to patients with a poor prognosis because the expectation is that it will cost more for a patients needs... Love x Gx
I think you make a fair point Gwyn. One doesn't have to be 'needy' to receive DLA. It is paid regardless of income level.
I didn't mean "needy", as in fianancial terms - more to the point, in reference of your daily care needs, such as help that you NEED from another person. If you need care then you should of course already be claiming the higher rate of the componant.
Let me explain another way, say for example, you are not diagnosed with terminal or incureable cancer but you still need care with personal needs or may have difficulties with your mobility, this can be down to exhaustion, side effects from treatment etc. Then you may only be entitled to the lower rate of Pip, if this is the case, you would not automatically qualify for a blue badge or carers allowance. For this your needs must be more serious and therfore a higher rate would be awarded. This has nothing to do with how much you earn (if still in emplyment) or how much money your husband earns, or how much money you have in the bank. It is not fiancial NEED I was talking about but the help you may need with your personal care. Or help getting around the house, the help you may need to getto hospital appointments etc.
I think your discussions has only been highlighting for those with a terminal prognosis, I was spreading our wings further in detail than that, so for that I am sorry for any misunderstanding.
At the end of the day mac millon are the best people to guide you, the form filling is horrendous for any one who is unwell, let alone very, very poorly.
God Bless you all with his love xxx
I think you explain your point well Tina. I really don't think there is any disagreement here. You are right too, Macmillan are the best for this type of advice. x
I think we have our wires crossed here, you are talking about cancer suffer's who have a terminal diagnosis, many of us on here don't and therefore unless there illness affects there daily needs and/or mobility difficulties they would not qualify for DLA or PIP just on the grounds of a cancer diagnosis. What is forgotton here is many cancer suffers make a full recvary from primary cancer. I am also trying to address those in particular, other wise everyone will assume that we are ALL entitled to these benefits.
+ I it has everything to do with need, obviously those with a terminal prognosis are indeed very much entitled to benefit, I have not said otherwise. I am speaking about every cancer suffer as a whole.
Indeed Tina, I think it is understood that you are referring to those who do not have a terminal prognosis. As I said, broadly your explanation is true. The point is it didn't include those who do have that prognosis and I sought to clarify that difference.
In terms of it being about need, you are of course right that the benefit is designed to provide additional financial support to fulfil any additional needs a person with health/care/mobility issues may incur. However, to describe it as a benefit for the 'needy' is not accurate. The point Gwyn made was that it is not means tested. She is not 'needy' in that respect. The terminal diagnosis criteria is simply a tool that exempts the claimant from jumping through the normal hoops of proving how their disability affects them and so fast tracks them to the upper rates. To describe all people with a terminal prognosis as 'needy' is perhaps a little demeaning. I think that is what Gwyn takes issue with.
Regards
Andy x
Carers Allowance.
Now thats a bone off contention who gets and who doesnt. This one is a minefield.You would think that it would apply to anyone caring for someone with an illness being long or short term the name in its self would make you think Ohhhhhhh I am caring for someone I am able to claim not always black and white.
All I know is that if you have been retired from work on medical grounds and are receiving a pension or your husband is you cannot claim. should I say not entitled (I stand corrected) should this be different you will probably let me know.
Regards Barbara.X .
Chris
I forgot you are quiet right about the prescriptions I have seen them at the GPs It can get quick costly for prescriptions. Luckily one of the the perks of being an OAP they are free.
Regards Barbara.X
Carers allowance is given without question if you are in receipt of Attendance Allowance, or Disability Allowance (I think this is the case) but I haven't applied so don't know for sure... but was told this at the time I was awarded AA
Love x G x
Hi Gwen, you are not always entitled to carers allowance when you claim DLA or personal independence payment as its now called. You need to be awarded the higher rate depending on the amount of care you need. If you only qualify for the lower rate of mobility part of the application you are not autmoatically entitled to the blue badge either.
You also do not qualify for DLA or mobility parking badge on the grounds of a cancer diagnosis only. It isn't the illness applicants have been diagnosed with that qualifies them but how the illness and symptoms affect you on a day to day basis.
The answers that we give to each question on the application form scores us points and depending how our points add up from the answers that we give, depends on our entitlement. Basically, we need to answer the question on our worst days rather than on a good day however, we must let them know if we have good and bad days. But always highlight how severely we are effected on our worst day.
A cancer diagnosis or no cure to the type of cancer that we have does not soley entitle us to these benefits. It depends on how our diagnosis effects our mobility or personal needs. However, when we have a clear prognosis, this will be taken into consideration.
You cannot claim DLA or personal independence payment if you are over the age of 65.
I hope that explains that you are not entitled to DLA or blue badge on a cancer diagnosis alone.
I agree you are not entitled on a cancer diagnosis alone... I was talking about when you are awarded it, because your life expectancy is thought to be six months like mine, I was awarded it for this reason only, so I would qualify also for carers allowance (if I had made a claim) but I haven't made a claim, I was informed of this at the time my A A was given to me on the strength of my poor diagnosis (no other reason) I didn't go looking for it they came to me so perhaps I was misleading because I am talking about my own case (no one else's) this is why I said that people can look at the DWP website to find out. Love x G x
Yes sorry I got that part a little wrong, I had no idea about fast tracking or automatic award for a terminal prognosis, I am referring to any one of us with cancer. Some of can be very poorly with cancer and many of us may not. If we are unlucky to enough to feel unwell, we may have dificulties with mobility, and/or care needs. Some ladies on here may not realise that they may be entitled to such benefits.
They are not only for those with a severe prognosis.
Its worth us all to think about our own personal needs, maybe you are left with neuropothy and are unable to prepare and cook your own meal, or you may have difficulty doing up buttons. Chemotherapy sometimes leaves side effects and these may affect our needs.
Hi again Tina, I think you make a few very good points here. The effect of a diagnosis of cancer is of course awful. When that diagnosis is Ovarian cancer it is multiplied simply because of its incurable status. You are right that many women who do not have a fixed period terminal prognosis suffer very much as a result of both the cancer itself and the associated treatment. To expect them to jump through hoops to prove their need while fighting for their lives is terrible...Although this is my own political opinion, for what it is worth I would like to see all who are diagnosed at later stage automatically fast tracked so they can concentrate on fighting the illness.
Andy x
Thank you, I couldnt agree more.
Hi Tina, While broadly true, I am not so sure this is wholly correct. If you are diagnosed or progress after diagnosis to a situation where the system recognises the cancer as "terminal" then there are different rules. I think the point where "terminal" is recognised is when the patient is given a prognosis whereby death would not be unexpected within 6 months. In such circumstances the claimant is automatically fast tracked to the higher rate of both components. At least that is how Macmillan explained it to Angie.
Andy x
As you say Any if the diagnosis is terminal within 6 months either the GP or Consultant can sign a form for this you. At one time just saying you had cancer gave you a fast track for the benefit. But that had changed to 6 months and the word terminal plays a part in this, if that is not mentioned then you have to follow another path You are entitled to full higher rate personal care and high rate mobility. But as we say all this will change as the new Personal Independence Payment comes into force from 8th April 2013 which will be phased in for existing people. I expect new claims will now come under PIP which has been said said will be made of two parts a Daily living components 1 Daily living component and and Mobility component each will have 2 rates
Standard and Enhanced so that will be interesting to see.
It is still not taxable
Regards Barbara.
This is absolutely correct Andy, as this is what happened to my mum when diagnosed 2009, however she lived for two more years. Gill xx
The two benefits I get are the free prescriptions that all cancer patients in England can get and DLA as when I applied I was only given a 6 months prognosis. I will have been getting this for three years and need to reapply so not sure what will happen now.
I will be seeing my Macmillan nurse soon who I am hoping will help me with the form. I know you have to get another form signed by your GP.
I hope this info helps you all.
Hugs Jackie xxx
Hi Jackie Its a good idea to get the Macmillan nurse to help you they know exactly what to put in the forms. They are so full of asking the same questions but in a different way that as a novice you can tend not to fill every question and this can result in whether get the benefit or not. My understanding as that if you are on DLA and you would get a renewal letter. Did you get a letter in March it was about 8 pages long with regard to the changes , it will tell you all about it if not there is a site gov.uk/pip It might help it is very confusing subject.
Regards Barbara
Hi Jackie, Angie's situation was broadly the same which is why she was awarded DLA too. I think it is all so confusing and more so because none of you ladies are the same in terms of diagnosis, treatment or prognosis. As patients all you have to go is what the oncologists tell you. Many are given far better outlooks than others.
Andy x
In some ways I am glad I was given a bad prognosis at first as it meant I could claim the benefit and also some insurance I could get. I am even more glad that the prognosis didn't come true and two and a half years later I am still fighting my corner.
Hugs Jackie xxx
Jackie this is a very important point. As you say, the prognosis didn't pan out as expected. While some people are told they have an expected six months of life. That does not always mean it is the end of the line. This disease is so hard to predict that even the oncologists can't be sure what will happen. Any prognosis can only be a best guess based on their experience.
Andy x
I mentioned this on Lily-Anne post because of the mis information on there... so I will add it on here too. Benefits has got nothing to do with local authorities but is a national government legislation if you need information you can go to the DWP website there it will explain in detail what you are entitled to... and what rules and conditions apply.
Best wishes x G x
I'm a little confused actually, I don't remember mentioning benefits :/
DLA is not means tested and is soon to become Personal Independent Payment, the blue badge is local authority issue as they are the Government department responsible for parking. gov.uk/blue-badge-scheme-in...
ESA is available for 52 weeks if you have paid your NI contributions, they use the previous tax year and this is means tested.
LA
You are quiet right you were talking about a water infection.But some of the posts move onto radar key, blue badge free prescription benefits and then it was bought back to the water infection.
I think because there was a lots of advice other than the water infection I think this a good post for information and advice for others to share..
Regards Barbara.
I am not sure why you are confused, Andy decided to start a new post because he felt it was unfair on your post as you were asking information about a urine infection... and then it went off track to talking about benefits, so he rightly felt it wasn't fair on you so started up this one....Simple!
But instead of people going to the source i.e. the D W P website they might read duff information ....so my advise to anyone is go to the Gov website and find out for yourselves . Love x G x
Hi Lily-Anne
You are right of course. You didn't personally mention benefits. That's why, when the discussion changed course, I thought it only respectful to you, to bring the discussion onto a new thread.
ESA (contribution based) works as you say in accordance to NI contributions. After that, or when not enough NI contributions have been paid, the claim moves to Income based. That is, it will still be paid if the claimants income is low enough. In other words it becomes means tested.
Andy x
My OC told me i couldn't be cured, but hopefully it could be contained. It was only 12 months later, after a second relapse from treatment that didn't work that we eventually found out about getting benefits from the government. Once I filled in the form as cancer, no cure, and the gp signed it i didn't need to fill in any more i don't think. This year i got a renewal letter, with a renewal form to fill in, and there were no problems. The hospices nurse did just check it out before i sent it, but said if the doctor says you can't be cured you are entitled to a full benefit .......... That's my story anyway. I also have a blue badge with no problem. I often felt guilt using it, but now I need it, so am glad i don't have to worry about or now.
Good luck
Viv
Viv
yes the hospice nurses can do the form filling in and they are very knowledgeable I think these forms are made for us to give up on and then that saves money.
Hope you are feeling better and the fluid has disappeared
Regards Barbara,
Hi Viv, I think your post underlines why not everyone receives DLA. For some, the relapse leads to a change in how the condition is viewed.
Thanks for sharing this information.
Andy x
Just to throw my input into this.
1. applied for blue badge on line, answered the questions truthfully and within 48 hours a blue badge arrived in the post.
2. applied for AA on line, after 10 weeks which included them writing to the GP, awarded higher rate without explanation.
3. applied for Carers on line, after about 8 weeks, granted without question.
We both receive pensions and we have savings.
Its as easy as that. Love Paul xx
Hi Paul, Thanks for sharing that. Obviously, you were able to show Sandra's needs warranted the benefit. As we know from the whole discussion, not all are able to for various reasons and I personally think it is wrong (with late stage diagnosis) that they should have to do so. Once Macmillan applied for Angie she was very quickly granted them.
Regards
Andy
When was this I applied for pip last October , granted 10 months later after a grilling interview standard 50 per week , pins and needles feet because of Clemo . It's very difficult to get pip these days which is disgracefull
Hi this thread is over a year old and PIP is now up and running. You're right the criteria is ridiculous and it should not be so difficult for ladies with advanced OC to get the benefit.
Best advice is to speak with Macmillan, they are so helpful with benefits advice.
Andy x
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