We need your help!

[Shannon_TBTC]

We know that a brain tumour diagnosis can sometimes have a big impact on people’s finances and it can be overwhelming thinking about what you can do to manage this impact. But we also know that a lot of people in this amazing community have experienced this and learnt along the way.

We are re-vamping our financial information, to be able to help more and more people in our community. We will be making it more accessible., covering more areas and developing new resources. One of these will be advice from the people who know best – you.

We would love if you are able to share any tips or advice that you have about:

-Applying for benefits

-Navigating the benefits system

-Appealing a decision

-Managing your finances

Please comment below with your tips and advice.

[SJa2020]

Hi Shannon,

Slightly different but in the same logical area. I had to very quickly do a will when I heard I may have a tumour. (Still undiagnosed 2+ months down) As I am a single mum. If you have children It’s best to do that if possible, takes one worry away.

Please note without a will children go to the other parent, if there are any issues in that happening, your will needs to state the guardian for your child. Along with the Will & split of assets itself .

Sorry not the financial info you were seeking but legal things for those with minor children.

All the best everyone.

[Hidden]

My daughter was 17 when diagnosed and had just finished a college course and was living at home. Due to her diagnosis and treatment she was unable to further her studies and unable to work. As she was currently receiving child benefit but, it was due to end, I contacted them to ask what I could do. They were very helpful extending her benefit for a further 6 months with proof of her predicament! It tied her over financially until she was well enough to get a part-time job (unable to manage full time initially). During her treatment period, Clic Sargent provided some money when we registered with them - we insisted we didn't need the money but their system insists giving you money when you access their services. It was really helpful paying for hospital parking and desperate coffees during the multiple hospital visits for treatment. We have since paid back into the charity along with TBTC as thanks for each of their support.

Remember that you can access free meds and free eye tests if eligible which is highly likely with a brain tumour diagnosis.

My husband and I had a critical illness cover which, when we looked into the small print, we realised it covered any children we had who may have a cancer diagnosis/serious illness. It paid out a lump sum which enabled us to buy our daughter a car, getting her mobile and independent on recovery.

Hope that helps a little..

[Tumo Pioneer]

My experience of trying to get any financial help has failed miserably. It’s so upsetting after being advised to apply for PIP after my 1st craniotomy 3 years ago only to be assessed after 12 weeks and not score any points at all. I’d lost the sight in my right eye due to optic nerve damage, had to surrender my driving licence. I was off work for 8 months (6 months SSP) then 2 months nothing. We managed because we had to. Just had my 2nd craniotomy March 25th 2020, applied for concessionary bus pass as told I would be entitled to it, the forms are so difficult to fill in as they want all the hospital letters (I’ve hundreds) as I’m under 4 different hospitals ( neurosurgeon, endocrinologist, optometrist, etc) I’m just too scared to apply as the thought of being turned down makes me feel like I’m a liar. The Brain Tumour Charity have told me to apply for PIP again which I’ve asked for the forms 3 weeks ago but not received them yet, (they will help me fill them in) and help me appeal if turned down again, but I don’t feel strong enough to apply to all these things, surely it could be automatic after such horrible operations, even if for only 6 months to enable a small recovery and adapting to everything else. I hate feeling like I feel, still waiting on MRI scan results from 2 weeks ago, shielding throughout Covid, I’m now struggling with a phased return to work which is so hard, but somehow I’m just about staying positive, although it knots me up inside. I didn’t expect my life to suddenly be like this after working full time since I was 16 years old. Sorry for the long post, but not everyone is as lucky as me as I have a very supportive family around me, how the hell anyone alone is supposed to manage through brain tumours I don’t know. Because mine are low grade there is no help out there, but I’ve had 2 craniotomies in the last 3 years, yes the same operations whether cancerous or benign. I’m 60 years old in November, still have a mortgage to pay, in amongst all my problems my husband had a heart attack ( he’s doing ok now) but was furloughed for 4 months. So sorry for the long post but I really feel something must, and should be done to help us a little financially during difficult times. Why do they make things so difficult, surely a consultant could make a decision?

[SJa2020 in reply to Tumo]

Our thoughts are with you & no need to apologise for the long message. I find this forum is for that - a place for you to vent and then get the advice & support from others or from the admin team who will have the facts & other info.

Please try & apply again for PIP taking help from the BC . It is so unhelpful that though support (PIP etc) is there, the process to access it is so longwinded - many Don’t get it! Keep going & all the best

[Wolfie04 in reply to Tumo]

Hi Tumo. I’ve also been declined by PIP. I too scored 0 points. I really thought that brain surgery, be the result benign or cancerous, would be treated with a level of priority but it doesn’t seem so. The past five years of my life have been in a flash. I’m stuck in a bubble. I have had two surgeries, medication cocktails that make me even more sick than before this nightmare started. It’s the not knowing about what “financial” help we’re entitled too. It’s the justifying that I am tired with having to do. I didn’t lean on the benefit system initially because I really couldn’t handle it and covered my expenses with savings but now a case of having to lean, it’s a struggle. I don’t think that we (the patient) should be filling in the form for PIP. I wasn’t comfortable writing down “my stuff” but what I did write down wasn’t a true reflection of my abilities. A friend of mine has written a letter to be presented to PIP in my dispute for help and it made me cry. I’d never seen my situ written down and so frankly! It was actually a very honest account of the way I’m now living my life. It wasn’t a comfortable read. It was an observation from my friend. It’s made me sad that since 2015 my life has been a rollercoaster and entering this whole benefit system is not for the faint hearted. It is very much an application that we should get help in filing our claim. Nobody points us in any direction and it’s only a case of necessity that we do any of this. I feel sick knowing if and when I get any sort of assistance that in the future I’m going to have to justify again and again my need. It’s been 5 years for me and I’m hopeful that one day I’ll be “normal” I’m trying to remain positive but it’s like everyone is moving on but me, I’m stuck and now entering this new phase of benefit system. They really do take advantage of “us” not feeling well or capable. It would be really helpful if there was some place on this magnificent online forum that made it a tad easier for folk just wanting to move forward with a bit of help.

[SJa2020]

Don’t know if this helps, I’m an accountant by profession if anyone needs bit of help can do so.

Something simple like managing the finances easy ways to go about it for the period you are ill or about to go in hospital.

Actually here’s a small list:

1. First try and be calm & if it’s too soon to the news Give yourself time or take support from family/friend.

2. I found it helped to look at it logically rather than put emotions in it - I know v. difficult to do.

3. If you have children &/or are a single parent Look at all the legalities &/or get support for that. Look at my other post re Wills as a means of support & legal protection.

4. Finances: Look at given period you are in hospital & a month after as well.

5. List out your main income & costs - item & amounts. (Eg below)

6. See what needs to be paid during this time & get it set up. This means during your op & a month later you don’t need to worry about the finances.

List of income/costs

Income:

Salary &/Or £

Benefits £

Costs:

Rent &/or

Mortgage

Loan payments

Debt payments

Any other such agreements

Food costs (if people at home)

Utilities (Gas, Electricity,water)

TV licence

Car

Phone & broadband

Mobile ph

Please don’t let the list overwhelm you just to help set it out.

All the best everyone. Stay positive! And let me know if there’s anything I can help with. (while I’m still on sick leave) . I don’t do tax in details etc & those things best to go to the usual accountant you would go to.

All the best everyone be strong & positive - We can get through this!

[Wolfie04]

Hi. I recently got refused by PIP. Now having to go through the 2nd stage of asking PIP to review my application. I scored zero points. Talking to another friend Tumo on this forum he also scored zero. This brain surgeries/tumour stuff is important to us all and when I received my letter from them, the indication was that my “situation” didn’t come under the PIP award criteria. Now having to redo the whole thing again. It’s like I’m having to justify my symptoms, my living conditions and my capabilities. It’s tough. Really hard to find the words and as if living this life isn’t tricky enough for them to sort of disregard my circumstances. Living with the after effects of two surgeries and the implications facing a lifetime of meds, scans and persistent pain and fatigue etc doesn’t seem to fit in to their forms! I’ll reapply again tomorrow and only hope it is acceptable. It’s been a life changer this brain stuff and there’s just no understanding about how we as brain tumour/surgery survivors need support!

[Tumo Pioneer in reply to Wolfie04]

Haven’t got the fight in me, but know i have to try. The brain tumour charity help with form filling so I’ve made a telephone appointment in a couple of weeks so they can help me fill it in, as it’s so complicated to fill in. Finding evidence letters when I’ve hundreds of letters and my eyesight isn’t great is frustrating, understanding what they are asking isn’t clear. Really shouldn’t be like it is. We must keep fighting in to make it easier for everyone in the future. So hard when we look ok, but our heads and bodies don’t work as they use to, only people going through this know how hard it is, but we must not give up. Fill in those forms and appeal if you have to, I will to. Stay safe and good luck

[Wolfie04 in reply to Tumo]

Yep in my experience a full and true insight into my life and health was not explained on my application and I think it takes the help of willing and able organisations like this one that can really make a difference. Good luck second time around the PIP hurdles! 😐