Alif and Max, what an awful situation to find yourselves in.  You always think that there is going to be help out there for this kind of situation but, obviously, not.  I do hope that someone has some much needed help for you both.  With my very best wishes.

Hi Alif and Max,

I am sending you a link to our information about financial support.

It would be worth also contacting our nurses about this as they may have further advice they could give you.

Either you could call them on : 0808 800 4040, freephone from landlines and most mobile phones, from Monday to Friday, 9am to 5pm. Alternatively you can post your question in the Ask The Nurses section.

Best wishes to you both,

Jane 

Hi Alif and Max,

I am sending you a link to our information about financial support.

It would be worth also contacting our nurses about this as they may have further advice they could give you.

Either you could call them on : 0808 800 4040, freephone from landlines and most mobile phones, from Monday to Friday, 9am to 5pm. Alternatively you can post your question in the Ask The Nurses section.

Best wishes to you both,

Jane 

Hi Alif (and Max)

Just wanted to add that I am thinking of you both at this difficult of times.It just seems so wrong that when you need very necessary support, financial help is hard to come by.

When my hubby had to stop working a year after diagnosis and then sick pay commenced (alongside disability benefits), I was working very part time hours.  We looked into 'carer's allowance' to see if it would be worth me giving up work (I was offered six months unpaid leave) but it would have not improved our financial circumstances.  In the end my husband opted for community care nursing and I continued to work (taking annual leave when it seemed necessary)until five days before his death when I was home full time. I had suggested releasing equity in our home but hubby did not want to go this route or take his pension early (which would be available as he was over 60) but these are not options for those who are so much younger.  Some companies (mine included) can make one off benevolent payments in times of need so it could be work asking but I know when you are self employed this is not an option. We also took advice through Citizens Advice Bureau/MacMillan/GP/DWP to make sure he was getting all possible allowances.  Its an awful predicament to find yourselves in when there are so many more important things to consider (my husband got very fed up at being told by doctors/consultants to get his affairs in order 'sooner rather than later' for the three year journey he was on).  We  made it through his journey without getting into debt but at the emotional cost of spending less quality time together. I wish it could have been different. 

My heart goes out to you and your families. (I would love to have a big rant on your behalf but will send huge virtual hugs your way. Jules

There seems to be more available if you are of pensionable age.  Attendance allowance is payable on top of PIP but you have to be over 65yrs old.  Pension credit is also available for those of pensionable age.  Carers allowance is not an amount a couple could live on and lowers the patients PIP payment as well as far as I can see.

It is definitely a tricky situation for those in the lower age bracket and makes you realise how in hindsight (a wonderful thing as they say) it would have been so worthwhile to pay life insurance which also pays out with a diagnosis of a terminal illness.

Max , you actually have to be between 16 and 64 to get PIP and, being 71, I am not entitled to anything.  The whole system is a mess!

Hi Pauline, I didnt realise that PIP was connected to age but if that is so, then Attendance Allowance must be what you can claim instead if you are over that age - there are special rules for terminally ill persons with this benefit so it doesnt necessaryily have to be claimed for personal care but to enable/maintain independence in your own home It is not means tested so hopefully it i something you are entitled to.  You need to google it on the DIR.GOV website. Fingers crossed. You may also be entitled to pension credit.   You are right - the system is a mess. However, so are many things connected with this illness sadly and they only come to light when you are involved with it.  I hope you are keeping well \pauline - you are so supportive to others when needed x

Hi, Max, many thanks for that information, I will check it out.  I know I wont be able to get Pension Credit as my husband died many years ago and I get a pension from his company plus my government one. This takes me a few pounds above the maximum I am allowed to earn. One of my biggest expenses is going to the hospital.  I have to get a main line train, the London underground and parking which costs £34 each time.  Because I am not on any benefits I cant get transport.  Sometimes I am at the hospital 3 times a week and its a huge expense. Max, you are right, the benefits do only come to light when you are involved and at a time when you really don't have the energy to sort it all out. x

Pauline ..... the link that Jane has put on her Mods post shows some interesting info regarding reclaiming travelling expenses.  Take care x