Throughout this 'THE REALITIES' category I have explained some of the realities of getting (or at least trying to get) help with finance, medical allowances and housing benefits after being diagnosed with High Grade NeuroEndocrine Carcinoma of Ethmoid Sinus (cancer of the head and neck); both during and after chemotherapy and radiotherapy treatments.
Before I go into detail of How I went about getting REAL Help, meaning a lot of people and organisations say they are there to help but in reality are totally useless (all talk, no action), I will just explain my circumstances a little to give you an example of the kind of help I really needed.
Around 18 months before diagnosis I used to be self-employed whereby I then took time off (quit self-employment) and began visiting my girlfriend more. I got to know her children better, we took holidays together and in general I was visiting her more often in her flat. Over this time I was living off my small savings. Fast forward to 1 month before my cancer diagnosis, I decided to move in with my girlfriend and her family. All was well.
With my cancer diagnosis coming one month later and my small savings since spent, I now need financial support. At this time I look after my girlfriend's children and take the youngest to/from school. I also do housework, shopping and other things to help my girlfriend while she is at work. So I am like a House Husband and Step-Dad combined, which suits me fine. However, I am not happy that she has to foot some of my expenses while I try and get financial help.
When I first saw the oncologist she appointed me a CNS (Clinical Nurse Specialist) called Emma Cunningham. The job of a CNS is to look after you in terms of your lifestyle and medical needs. They are supposed to help you with application forms, claiming benefits (such as PIP, Bus Fares and the one-off MacMillan Grant) as well as be there to answer your questions relating to the just said. They should be there to give you advice, show you the ropes and sign any authoritative forms.
I say "should" because in my case Emma was not initially there for me when I needed her. As an example: Me and my girlfriend had a short 3 day Prague holiday booked for November 2017, which was booked before my birthday in September, whereby we needed a simple letter for Ryanair purposes so that we could get a refund on the tickets. Just a short paragraphed letter would do, stating I cannot fly due to a sinus cancer.
On Friday 3rd November Emma said she would do the letter and I should receive it by post on Tuesday 7th November. Fare enough. I waited, but it never arrived in the post. So I rang her on Wednesday 8th November whereby she said "Sorry, I was so busy. I will do the letter later and hand deliver it tomorrow when you have your chemotherapy treatment". She never turned up. In the end I had to get a printout of my official Diagnosis Letter from a nurse in the Chemotherapy ward after calling Emma from that ward.
I appreciate Emma may have been busy, but if she was that busy she should have either hired herself a secretary or just said nothing about helping me. Luckily, Ryanair was good enough to accept my official diagnosis letter and gave us a full refund.
Almost one month went by before I saw Emma again, prior to the appointment with my oncologist, where she apologised for not giving me a call to get PIP and the MacMillan Grant processes started (something a month ago she said she would and could help me with as part of her role as a CNS). At this point I was "Just Listening", thinking I would get the run around.
Fortunately, after that meeting with Emma I found her to be very helpful and got to understand just how busy her job can be. Now she calls me back whenever I leave a message on the NHS switchboard and I feel she is now totally there to help me. I point out the above scenarios simply because as a new cancer patient it can be frustrating and daunting when "it appears" that your CNS is not helping you.
In hindsight I would say you need to be patient at first and allow your CNS time. Everything should then work out fine between you.
In the end, Emma did get back to me about the MacMillan Grant. She did the application over the phone, asking me various questions about what financial support I needed, signed the application on my behalf and posted it. She also confirmed my cancer status with the DWP, when they rang Emma, so my PIP application (which I filled out myself after applying for it from the DWP) could go ahead.
Although I was originally hoping to sit down with Emma to discuss things like tax credit benefits, applying for PIP, getting an eye glasses voucher and getting help with travel costs such as bus fares to the hospital, petrol for hospital visits and a blue badge disability certificate, some of which she could and did help with, I had to realise that some of these things needed sorting out by me alone (i.e. via Google research and calling DWP to answer personal questions that Emma would not know the answers to) or at least see a dedicated benefits advisor about.
The cancer village at Guy's hospital does have dedicated advisors, who can also help you to fill out forms, but it takes time to book an appointment with them. You also have your local Job Centre Plus to turn to of course, but these days even they are turning people towards the interet to do certain things online.