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Benefits discussion

User
Posted 22 May 2014 at 16:03
Hi all
We have often spoken of having a separate section for a discussion of benefits. I'd like to start one.

For men with incurable cancer it is possible that they may be entitled to PIP or Attendance Allowance (age dependant not means tested) especially if a doctor or oncologist will supply a form called a DS1500. This form states that a life expectancy of six months or less is possible. This form doesn't mean that a doctor thinks you have less than 6 months to live but simply that you have an illness where if you did die within 6 months, it would not be unexpected. This is true for anyone with mets because who knows what the future will bring. If you get a DS1500 then it is a fast track to a weekly payment (can't remember the amount). What you need to know is that this form has a three year renewal time and we are on our second. So don't be afraid of it. This money will help you to meet the additional costs of having an incurable cancer. Don't be shy, ask the DWP, your doctor, your hospice nurse, the Citizens Advice Bureau or even your specialist nurse.

I'd like people to know this exists as it makes a huge difference for those of us in this position.

There is plenty of advice out there for help in completing the form, which is pretty daunting, but a DS 1500 means that at least some of the form does not need completing.

The second benefit that may apply is the mobility allowance at the higher rate. This allowance is a little more difficult to get as it does require a level of disability to be present. Many men with advanced prostate cancer will meet the requirements and this benefit allows you to get a car under the motability scheme. It is I operant when filling this form in to take advice as mentioned above,

The next important benefit is the Blue. Badge scheme. This is given by councils if you have e benefits mentioned above and a form can be obtained from your local council or on line. This is a hugely important benefit for many of our men, it means that they will have the space they need to get in and out of the car.

There is also a scheme for getting your prescriptions free (I think they are free if you are over 60) but I am pretty sure that a cancer diagnosis also confers this benefit.

I am sure there are others but wanted to start this thread off for any newcomers who may need some information on this subject.

Regards
Allison
User
Posted 22 May 2014 at 16:03
Hi all
We have often spoken of having a separate section for a discussion of benefits. I'd like to start one.

For men with incurable cancer it is possible that they may be entitled to PIP or Attendance Allowance (age dependant not means tested) especially if a doctor or oncologist will supply a form called a DS1500. This form states that a life expectancy of six months or less is possible. This form doesn't mean that a doctor thinks you have less than 6 months to live but simply that you have an illness where if you did die within 6 months, it would not be unexpected. This is true for anyone with mets because who knows what the future will bring. If you get a DS1500 then it is a fast track to a weekly payment (can't remember the amount). What you need to know is that this form has a three year renewal time and we are on our second. So don't be afraid of it. This money will help you to meet the additional costs of having an incurable cancer. Don't be shy, ask the DWP, your doctor, your hospice nurse, the Citizens Advice Bureau or even your specialist nurse.

I'd like people to know this exists as it makes a huge difference for those of us in this position.

There is plenty of advice out there for help in completing the form, which is pretty daunting, but a DS 1500 means that at least some of the form does not need completing.

The second benefit that may apply is the mobility allowance at the higher rate. This allowance is a little more difficult to get as it does require a level of disability to be present. Many men with advanced prostate cancer will meet the requirements and this benefit allows you to get a car under the motability scheme. It is I operant when filling this form in to take advice as mentioned above,

The next important benefit is the Blue. Badge scheme. This is given by councils if you have e benefits mentioned above and a form can be obtained from your local council or on line. This is a hugely important benefit for many of our men, it means that they will have the space they need to get in and out of the car.

There is also a scheme for getting your prescriptions free (I think they are free if you are over 60) but I am pretty sure that a cancer diagnosis also confers this benefit.

I am sure there are others but wanted to start this thread off for any newcomers who may need some information on this subject.

Regards
Allison
User
Posted 22 May 2014 at 17:11
Good idea Allison and I was thinking this morning that there are quite a few new members recently who may be unaware of their right to free prescriptions.

Basically, anyone diagnosed with cancer can get an exemption certificate from their GP which entitles them to free prescriptions. The exemption certificate lasts for 5 years. In addition, anyone undergoing treatment for cancer or treatment for the side effects of cancer treatment is also entitled to an exemption certificate.

So it applies to
a) the newly diagnosed man
b) the man who is on active surveillance
c) the man who has opted for radical treatment
d) the man who is incontinent, has bowel problems or is having treatment for ED as a result of surgery or RT
e) the man with advanced disease and on hormone treatment, chemo, etc
f) the man with clinical depression as a result of diagnosis if he is being treated for the depression
g) the man in end stage

After 5 years, the man can apply for a renewal and as long as b, d, e, f or g apply he is likely to get another exemption certificate for another 5 years. The exception would be (c) as some lucky guy that has radical treatment, gets 5 years of undetectable PSA, isn't depressed, is continent and needs no Viagra or similar will no longer meet any of the criteria. If in the future he has a recurrence, he could then reapply at that point. We will be applying for John's to be renewed any time soon so we'll see how that goes!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 May 2014 at 00:11

VAT Exemption Scheme:


 


If you are buying goods and services for a disabled person then some these may qualify for zero vat.  A short form normally has to be completed confirming the patient's conditions, and a signed statement of truth.


 


More details here ... http://www.hmrc.gov.uk/vat/sectors/consumers/disabled.htm#2


 


In our own case, all the supplies bought for one of the bathroom conversion jobs were obtained under this scheme saving us about £1000 on the job.  Not to be sneezed at!


 


Cath

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User
Posted 22 May 2014 at 17:01
Age Uk will often help with the filling in of these forms. They have helped my parents and mother-in-law.

Paul
Stay Calm And Carry On.
User
Posted 22 May 2014 at 17:11
Good idea Allison and I was thinking this morning that there are quite a few new members recently who may be unaware of their right to free prescriptions.

Basically, anyone diagnosed with cancer can get an exemption certificate from their GP which entitles them to free prescriptions. The exemption certificate lasts for 5 years. In addition, anyone undergoing treatment for cancer or treatment for the side effects of cancer treatment is also entitled to an exemption certificate.

So it applies to
a) the newly diagnosed man
b) the man who is on active surveillance
c) the man who has opted for radical treatment
d) the man who is incontinent, has bowel problems or is having treatment for ED as a result of surgery or RT
e) the man with advanced disease and on hormone treatment, chemo, etc
f) the man with clinical depression as a result of diagnosis if he is being treated for the depression
g) the man in end stage

After 5 years, the man can apply for a renewal and as long as b, d, e, f or g apply he is likely to get another exemption certificate for another 5 years. The exception would be (c) as some lucky guy that has radical treatment, gets 5 years of undetectable PSA, isn't depressed, is continent and needs no Viagra or similar will no longer meet any of the criteria. If in the future he has a recurrence, he could then reapply at that point. We will be applying for John's to be renewed any time soon so we'll see how that goes!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 22 May 2014 at 23:35

Alan and I have benefitted enormously through the fully funded NHS Continuing Heathcare scheme.  It is a package of care designed around both patient and carer.  It is one benefit for which you are not able to apply personally .. the application form is divided into some 12 sections and completion is undertaken by District Nurses, Palliative Care Nurses, or Macmillan Nurses - as a general rule.  Information is gathered from all members of your local care team .. plus the patient and carer.


 


Full details of the scheme can be found here on the NHS website ... http://www.nhs.uk/chq/Pages/2392.aspx?CategoryID=68


 


This benefit is totally different and separate from anything which may be offered via Social Services .. their services are generally means tested.


 


I can only tell you about the sort of help we get .. but it will give you a general idea.  Alan has a nurse in 5 days a week to shower and dress him.  I have 4 hours per week 'respite' with a 'care-sitter' staying with Alan, allowing me to get to the bank, shops, etc., for essentials.  In view of my own limitations I have 2 hours per week help in the home (housework, etc).  Two nights a week we have a 'sleep-in' carer who is responsible for Alan's needs between 10pm and 7am giving me a chance to have two nights a week undisturbed sleep.  We were recently informed that Alan qualifes for 6 separate weeks per 12 month period to be cared for in a nursing/care home which is in the local area - a break for both of us every 8 weeks or so.


 


Assessment is officially every 12 weeks, I think, and is undertaken by Alan's PCN who sees him every three weeks, so she is always fully up to date with his needs.


 


Obviously the help we now get is very much appreciated and I hope this insight will be of help to others.


 


Cath


 


 

User
Posted 22 May 2014 at 23:59

Council Tax Reduction:


 


If you need to carry out alterations to your house for the benefit of a disabled person, you can apply for a reduction in Council Tax.  The criteria is that significant changes have to be made to a bathroom .. bedroom .. or kitchen to accommodate the needs of the disabled person.


 


In our case we had alterations made to two bathrooms to enlarge shower cubicle in one and remove a bath in favour of large shower cubicle in the other, so that a chair could be placed inside and there would still be enough room for a second person to help with the showering.  A council representative will call and inspect the work.  For us it resulted in our house being technically 'downgraded' from Band D to Band C for the length of Alan's life.  They re-issue an ongoing confirmation form about every 12 months which has to be signed and returned.  This is a financial gain to us of something just short of £200 per annum.  Every little helps!


 


Cath

User
Posted 23 May 2014 at 00:11

VAT Exemption Scheme:


 


If you are buying goods and services for a disabled person then some these may qualify for zero vat.  A short form normally has to be completed confirming the patient's conditions, and a signed statement of truth.


 


More details here ... http://www.hmrc.gov.uk/vat/sectors/consumers/disabled.htm#2


 


In our own case, all the supplies bought for one of the bathroom conversion jobs were obtained under this scheme saving us about £1000 on the job.  Not to be sneezed at!


 


Cath

User
Posted 03 Mar 2015 at 21:04

 


First of all I would like to say hello to friends from the old forum.  I have not been on for a few months.


I have a possible problem with Attendance Allowance renewal. 


When Dad was originally diagnosed 3 years ago with advanced pca with mets his GP provided the form so we could apply under special rules. We had been told it was terminal but three years on he is still here and doing well due to Prostap injections. Spoke to his GP on the phone today about the renewal and she said it cant be done under special rules this time as DWP class terminal as somebody not expected to live longer than 6 months so I have to complete the form in the ordinary way.


The problem is that sometimes he needs more help than others. Sometimes he can manage things on his own like shopping, getting in and out of the bath, cooking etc but then other times he gets very breathless and extremely tired due to anaemia etc and finds it difficult to do much at all. On looking at the questions on the form it is looking a bit doubtful that he will get the AA renewed if he doesnt need my help all the time. I have been his carer for the last 3 years and if he loses his AA i will also lose my CA which means that I would then have to work and would not be there for him when he does need me.  I could not believe it when the GP told me that her own father had been refused AA even thought he has advanced lung cancer.  I know people who are much more able who receive it, I don't understand it at all.


I would be interested to know if other people with pca have been successful in obtaining this benefit.

User
Posted 03 Mar 2015 at 21:58
There is also carers allowance, this is payable to a primary carer if they look after someone for more than x hours a week (not sure of the current figure) It will not be paid if the carer earns more than about 100 pounds a week but this does not include pensions. There is no means testing of the person you care for. It is taxable.

Many of these sound more complex to apply for than they need to but Macmillan, Maggies and your local hospice will all have a specialist benefits helpline. Our Hospice did everything for me including rushing though his fast track forms for DLA and Motability so that he got them before his 65th birthday. Once a man is older than 65 he cannot qaulify for the same benefits. They also helped me to get everything I was entitled to in terms of widows benefits when Mick died.

Great Idea Allison
xxx
Mo
User
Posted 03 Mar 2015 at 22:01

I have found Age UK to be excellent at helping to fill in these forms. Try contacting your local office to see if they can offer any help.

Paul

Stay Calm And Carry On.
User
Posted 03 Mar 2015 at 22:39

Brilliant Idea for a thread Allison, so many people need help and advice for how and where to go for financial help .When we were first diagnosed I was like a rabbit caught in the headlights , we had no idea that there was so much help out there but you need to know where to ask . 


A good friend has health problems not PCA related but she has difficulty walking and with stairs etc she and her ex husband where in the RAF many years ago and the SAAFA have been brilliant fitting a stair lift and downstairs washroom so sometimes help can come from totally unexpected places , one thing that I have learn't is that if you don't ask you don't get.


BFN


JULIE X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 03 Mar 2015 at 23:01

Well done Allison.


Sue, fill the form as at the worse Dad is, if you need help filling in the form then get AgeUK to help, but remember it is based on the worst that Dad can be, ie. the more help he needs.



Chris.

Edited by member 03 Mar 2015 at 23:02  | Reason: Not specified

User
Posted 04 Mar 2015 at 20:12

What a useful thread, really helpful for all of us on here plus interesting if applies to other members of the family with different illnesses.


Thank you everyone.


Alison

User
Posted 04 Mar 2015 at 21:03
I cannot for the life of me see why a GP cannot reissue a DS1500 form, it doesn't mean that someone will die within six months but that if they did then it would not be unexpected. The form is valid for three years, we are on our second and I hope to get a third. I think your GP is being very rigid. I'm sorry their own experience was so bad but that's no excuse for not helping your dad.

If they can't be persuaded then please ask Macmillan to help with the form or age UK. You really do have to concentrate on the bad days, it's horrible but that's all you can do. Be honest about dad's limitations. We even said that walking outside when possible was something My OH liked to do as it was so good for his physical and mental health because he felt bad that sometimes he feels a bit better!

I hope that you get the right help with this form, say lots of things on it about how much help he needs etc if you fill it in yourself. Good luck with it.

Love Allison xxx
User
Posted 20 Jun 2017 at 06:42

this is one of the best threads on here, it should be posted at the start

nidge

run long and prosper
'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 20 Jun 2017 at 08:04

Just found this thread after being on this site for 18months ,thankyou nidge for bringing it to the forefront again ,Gary already gets the free prescriptions but at his app today will ask about any other ones that we may be entitled to .
Best wishes to all
Debby

Edited by member 20 Jun 2017 at 08:21  | Reason: Not specified

 
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