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Marmalade

Life Expectancy and Attendance Allowance

Postby Marmalade » Mon Mar 28, 2016 3:54 pm

My 83 year old husband has PC. This was confirmed with a biopsy last week. He has a large mass in the body and tail of his pancreas 9.8cm x 4.2cm which is engulfing and occluding the splenic vein. It is compressing the superior mesenteric vein and the portal vein. It also engulfs the splenic artery. He has recently had a contrast CT for Liver and Lungs. The liver appears not to be affected and the lungs we are awaiting the results. We have been told that this is inoperable and that palliative care is all that can be offered. We will meet with oncologists to see what they may be able to offer in terms of management of symptoms but we are very concerned about how we will manage if I stop working (I am 59) to take care of him. We have assets but only minor income. We understand that we would need a form DS1500 but this appears to require someone to state that he is unlikely to live more than 6 months. Is it likely that one of his doctors would consent to fill in this form? I have been on the Macmillan site and on here and on the government site but there is no discussion on this. Has anyone any experience of making such a claim? Many thanks

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Life Expectancy and Attendance Allowance

Postby Proud Wife » Mon Mar 28, 2016 4:30 pm

Hi there and welcome.

Very sorry to hear of your husband's diagnosis.

To put your mind at rest, your husband should be awarded the higher level of disability allowance. If you just get a letter confirming your husband's diagnosis, I would recommend that you contact your local Macmillan CAB office - they will do all the form filling and apply on your husband's behalf. You will be entitled also to a carers allowance - £62.10 per week. It's not a lot but it's better than nothing! Can I also recommend that you apply for a blue badge, it makes life that little bit easier. My husband and I joke it's the only advantage of getting PC.

All the very best to you and feel free to ask whatever you need.

Fifi

Re: Life Expectancy and Attendance Allowance

Postby Fifi » Mon Mar 28, 2016 4:34 pm

Hi,

I am really sorry to read of your husbands diagnosis. I hope you get lots of support here.

As with regards to the claim, my Dad claimed. And it was backdated to when he was diagnosed. He rang the council, they have a macmillan helpdesk within. Obviously not sure where you live, but would guess they are the same. Dad's oncologist signed the form. He got around £600 a week and on top of that he got ( I think ) £70 a fortnight for a cleaner, as he lived alone. But we never used a cleaner, as I did everything for him. Please don't worry about the money. I know it is important, but it is an extra worry you do not need on top of what you are both going through.
Dad used to say they are throwing money at him now he can't spend it.

Leila xx

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

Re: Life Expectancy and Attendance Allowance

Postby Linda G » Mon Mar 28, 2016 4:43 pm

Hello Marmalade, welcome to the place nobody wants to be. So sorry to hear of your husband's diagnosis. When my husband was diagnosed his GP completed the DS1500 and the MacMillan nurse completed the rest of the process. It was done quickly and efficiently.
Hope you find lots of support here as and when you need it.
Regards
Linda G

Marmalade

Re: Life Expectancy and Attendance Allowance

Postby Marmalade » Mon Mar 28, 2016 5:17 pm

Thank you all for replying, it does help to know the system works for some at least. I was worried because you can't get anyone to put any figure on life expectancy so I couldn't work out how they could fill in a form that said the the patient would not reasonably be expected to last more than 6 months. I think it's one of those situations where it's best not to ask too many questions. Thank you also for not dismissing the post because of my husbands age. We are pragmatic about the outcome but as a couple who have been together for 40 years we are of course distressed by the diagnosis. We've had a rough time getting the diagnosis although we have been sure in our own minds what it was and my husband has had some pretty shoddy treatment at our local district hospital. I dread to think how he would have gone on if I had been in my 80's and not as on the ball as I am. Last week we arrived to find he had been booked by his GI consultant for the wrong, and much more dangerous than necessary, procedure. The consultant intervention radiographer basically refused to do it! Big hoo ha and we got referred same day to a major teaching hospital 2 hours away and some top class staff. We now just want to rest and try and get organised so we can enjoy the time we have left while he feels ok. Thanks again everyone

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Life Expectancy and Attendance Allowance

Postby Proud Wife » Mon Mar 28, 2016 5:27 pm

Please rest assured age does not matter one little bit as far as members helping members are concerned!! Don't worry about prognosis from a benefits point of view. Everyone is different and your husband's clinicians will simply rely upon statistics and clinical experience if asked to give details of life expectancy. You have enough to worry about as it is without finances as an extra burden and you are absolutely right, try to enjoy the time and create happy memories whilst your husband still feels okay.

You will find people on here with a wealth of knowledge and there will always be someone who can answer any question so ask away. The most important thing to remember is you are not alone. I won't comment on the level of care your husband has received thus far, we are in a similar position and if we'd listened to my husband's urologist who told him he'd pulled a muscle on the operating theatre table, my hubby wouldn't be here today. All he needed to do was read the CT report that flagged the lesions but that was all too much trouble for him. It's a sad state of affairs when we have to be so on the ball and not leave fate in the hands of the healthcare professionals.

Fifi

Re: Life Expectancy and Attendance Allowance

Postby Fifi » Mon Mar 28, 2016 5:30 pm

I hope you can get the claim sorted soon, and that will be one less worry for you both. They are normally pretty quick.

One thing I have learnt is that with pancreatic cancer, there is no time ro wait, for anything. Push and push and push.
And with regards to your husbands age, he is still a human being however old he is. He is still a man that deserves to live and that deserves the best care.

Pancreatic cancer is nearly always misdiagnosed as well. Doctors do not know much, and that is the reason you need to question everything, please don't be afraid to.

Also, 6 months, does not mean 6 months. When my Dad was diagnosed, he was given 6 months, and I truly believed it would be to the day. Dad had 14 month.

How is your husband? Is he eating ok, going to the toilet ok etc?

Leila xx

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Life Expectancy and Attendance Allowance

Postby Didge » Mon Mar 28, 2016 7:18 pm

They will usually sign it off (DS 1500) for pancreatic cancer regardless of how long they think the person has left. Just ask! As others have said, you should push for everything. If on a low income you can usually get a reduction in fuel bills too - ask Macmillan for help and they will point you in the right direction.
Didge x

Marmalade

Re: Life Expectancy and Attendance Allowance

Postby Marmalade » Mon Mar 28, 2016 8:14 pm

That's what is what I thought Didge thank you, it's reassuring. Like I said, we have assets so some benefits are excluded and we are not after anything we are not entitled to. Thank you Fifi, he is actually fairly well and his weight is stable, going to the toilet ok just tiredness, back pain and getting the Creon levels sorted. I've noticed that he has lost a lot of confidence and the effects of a stroke he had some time back are now more pronounced in his balance and speech as he loses muscle and gets tired. Unfortunately he also has a problem with a tooth that needs to come out (in hospital as he takes warfarin) which is painful and is making eating more of a challenge than needs be. We've decided that after six weeks of waiting we are going to have it done privately. His dentist should be able to do it but after a problem controlling bleeding last time, all concerned felt hospital would be safer, it is just taking an age. I'd rather sell something and get it done quickly. I want him eating as well as possible for as long as possible.

Marmalade

Re: Life Expectancy and Attendance Allowance

Postby Marmalade » Tue Mar 29, 2016 6:15 pm

Heard from my husbands key worker that she will send us DS1500 duly completed this week and she has arranged a call from a Macmillan advisor to fill in the forms. Thanks for the support, it means a lot