Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Next step

Roobarb
Posted by

post has reminded me, my local council has a macmillan benefits person, the hospital emailed her the DS1500 and she applied for everything on my behalf, it was very straightforward and I didn’t even need to lift a finger, the DS1500 is a bit grim but it means you skip all the assessment stages and in theory are fast tracked.

ownedbystaffies
Posted by

Well worth talking to someone from the government's free pensions advice service too, pensionwise.gov.uk to discuss all options regarding pensions. Making the right decision is crucial.

Fishtrombone
Posted by

Hi Gragon,

I had no idea that part pension was even a thing. I've certainly learned a lot today. 

Macmillan CAB sorted out the non-means tested PIP for me which has been invaluable with helping pay for all the taxi travel as I don't own a car. 

My HR dept haven't made a mistake as yet they've just been noticeable by their absence. I've not seen or heard from them since going off long term sick last October. The last I had heard was that the Occupational Health doc had requested information from my Oncologist back in Sept. I assume that is to prepare in case of early retirement on medical grounds.

Thank you for your help

Fish

x

Fishtrombone
Posted by

Oooh I will check out the council too thank you Roobarb. You never know my council might have too fingers crossed.

Cheers 

Fish

Fishtrombone
Posted by

Definitely ownedbystaffies, don't want to mess this up. I will be dedicating next week to getting informed. I don't have much so no room for errors. Thank you for the link.

tvman
Posted by

Hi Fishtrombone

I was diagnosed with a blood cancer in 2015 at the age of 57 but I felt well enough to carry on working, even though my doctor said I should leave and the surgery would take care of all necessary form filling. 3 months later I was diagnosed with a lumbar condition which 4 months later put me in a wheelchair. Those two events in combination led me to have several sessions with a counsellor. I was a bit of a mess, an emotional wreck. 

I had been doing the same job for 35 years and I was self employed. I had an employee for 20 years who had three young daughters and I didn't know how to tell him, although he guessed that I wouldn't be able to carry on working as walking a lot was an essential part of the workday. He's now a caretaker in the school that his daughters attended which is a big relief. Thank goodness I listened to financial advise from an Independent Financial Advisor (IFA) in the early years and I had two pensions that the IFA had set up as well as a sickness scheme that paid me for 2 years when I finished working. . 

I asked MacMillan for financial advice, I also contacted the Citizens Advice Bureau, and made an appointment with a financial advisor from the government's free pensions advice service, Pensionwise. Of them all, the MacMillan advice centre in a hospital just outside Belfast were the most helpful in terms of benefits advice. They filled in forms such as for DLA as it was before PIP. 

I'd advise you, Fishtrombone to contact MacMillan benefits advisors, they're fantastic at what they do. I know others have given the same advice, I'm just giving credence to their replies. 

Good luck, Fishtrombone, stay around for the ultimate support group help  and let us know how you get on please.

Tvman x

My philosophy is simple, love life and family.
Fishtrombone
Posted by

Thank you so much for sharing your experience Tvman, you have been through so much. 

It sounds like you were really thorough and organised. Thank you for the sound advice. I definitely will be following up on your suggestions. I've never been very on top of my finances as I've always lived with such small financial margins. But you're right, sound advice from the people that have the knowledge is what I need right now.

Thank you again

Fish x

Maz59
Posted by

A word of warning about ESA I was awarded ESA contribution based and put in the support group which was very good. I even did it over the phone but no one mentioned that when you draw an occupational pension this greatly reduces the amount of ESA. Because of this I accepted ill health retirement before I went to half pay and lost out financially as I would have got half pay and ESA for 6 months which was more than my pension. It is a strange system as my pension was less than half pay but I lost money had I have known I would have done the Maths and kept my job for the 6 months. 

Hope you get everything sorted 

Maz 59 

tvman
Posted by

Hi 

I'm getting the same ESA as you, with the support group extra too. The ESA people contacted me about my personal pension but they couldn't do anything because I take money in chunks ie I phone up my pension company and ask for money. If I took a regular monthly income, then it would have been different, I would have had my ESA cut.

How are you doing these days Maz?

Take care

Tvman 

My philosophy is simple, love life and family.
Jo300
Posted by

Does age make a difference to early retirement? I’m 49, I have two pensions running, one that I have t contributed to for years, since I left the bank I worked at, but it’s continued to grow, and one that I contribute to privately as I am self employed. The whole benefits thing I’ve found to be a complete nightmare. I’ve only just claimed PIP 3 years after getting my incurable diagnosis and had my f2f in November so still no idea if I will get it. Haven’t claimed ESA yet but I do need to as neither can I realistically mange my job full time. 
it feels like a minefield!

Jo
x
Roobarb
Posted by

Hi in short yes - this made things tricky for me, definitely take advice (once you are 55 things change significantly). Plus I would guess your bank pension may be final salary, makes things tricky too, the other one will be simpler.  You really need to know your pension stuff if accessing them.

you are so right, this is all a minefield, this thread has been great for showing how tricky things are and how important to take advice, so good luck! Love heather xxx

Maz59
Posted by

Hi TV man 

I have managed to stay clear of hospital for a while and got my meds reinstated even though my oncologist thought I had no chance. The reply we got was basically as there was evidence they had been working why was I ever taken off them. 

After a 6 cycle delay I am now on my second cycle and it has been like starting all over again. I am having to keep myself away from infections which is difficult at this time of year but I am managing OK but it gets a bit lonely. 

The last scan showed significant growth after the 6 month break in meds so I am hoping the next one in March will show a reduction. 

My husband and I are decorating at present and we are both saying this is the last time. We love doing it but it is getting too much for us. Especially as I have started 3 rooms at once and want it all finished yesterday. 

The ESA thing is a nightmare I went from over £100 a week to £24 and my income was lower. I was told it was a shame I had paid into a pension scheme as I would have been better off not doing. Not what you want to here when you have had to make such great changes due to your health. 

But I know there are others worse off. 

Hope all is well with you and your family. 

Maz 59 

Fishtrombone
Posted by

Thank you Maz59 and tvman,

I will heed the word of warning with ESA. My Macmillan/CAB has sent the link for ESA ready for when I do make the move so I know little about them. I would have probably gone ahead without realising that the possible pension would affect the ESA. So are we talking about a means tested system?

Also what role do the support groups play? Are they helpful?

Thank you for your help

Fish

Fishtrombone
Posted by

Hi Jo300 and Roobarb,

it's been really helpful sharing all this information. When I said I was clueless I can now understand why I've steered clear of it all my life. It all seems a bit unnecessarily confusing.

It's been brilliant talking to people who have made it out the other side though.

Cheers!

Fish

Lass
Posted by

Heya Fishy, 

Yes to the means tested. If you can work while on ESA, but you can't work over 16 hours, or earn over a certain amount. Their own helpline can't agree if that's week by week, or if an average is taken over the year however. 

Any income at all is taken into account too, and your benefits reduced accordingly. But for some weird reason, it's not pound for pound. 

Then if you have savings over £5,000, then you get nothing until you've used up your savings to below the threshold. Then they'll start paying benefits.

Regarding the support group, it's a benefits classification. So there's the basic level of ESA, but then there are a couple of higher levels for people with extra needs. So if you're getting PIP, you're put into the support group and so are entitled to a higher level of ESA. So not an actual support group like this or weight watchers. 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh