Hi @cannaecookrisotto, sorry to hear about your father's problems and the strain you both must be under. Is there not a Benefits section of your local Council you can help with an Appeal. What about your local CAB? Some of them have Benefit Workers who will do your appeal from the information you give and any supporting evidence. I don't know your dad's age but is 66 the earliest retirement date now? If he is nearing retirement age the Age UK may also be able to help. What about the Huntingdon's Disease Society? Can they not help? I will tell you how I got support if you can bear to wade through this.
I retired 2 years ago (72) due to sudden Bowel Cancer diagnosis and after the awful after effects of the operation to remove the tumour, lymph nodes, ovaries, cysts and part of the womb. As I am over the age of being eligible for DLA/PIP, the Nurse Practioner at GPs suggested I apply for Attendance Allowance and said she would support me. I tried to do it myself - I find the forms easy but very tedious and with repetitive questions throughout. I've suffered with rheumatism in my hands for years and years and also had previous carpal tunnel surgery on both wrists, so I find it extremely difficult and very, very painful to write by hand. What taxed me was that they ask for dates of diagnosis. I have so very many health problems from before the GP Nurse Practioner eventually referred me to hospital February 2024, where I was diagnosed with Small Bowel Cancer
(but I have always worked as it helped me both mentally as it kept my brain functioning and gave me a purpose and reason for still getting up in a morning and also physically as it kept me moving around). This is not the case for everyone but it has been for me, so please, please don't think I'm saying all people should be working, even if they are ill - I'm certainly not.
I ended up gettting all of my medical notes from the GP, and going through them at so many a day. There are at least 800 - 900 sheets and it took me ages to try and pull exact dates. I had rang the DWP on one occasion explaining it was taking me such a long time to return the forms because of this. The man who answered said they did not ask for dates, and it took ages and him speaking to another colleague before he acknowledged that I was correct. I asked for an extension on the date to send the forms in but he said only claimants could have an extension, I replied I was a claimant - I was in the process of claiming - he said no I wasn't as I hadn't claimed it yet, so I told him to forget it and I'll try and send it in that day or the next. (I was still up and down to various hospital appts and GPs and very much suffering with after effects and food intolerances I had also acquired due to the BC and/or the operation, so I was still busy and very, very tired all the time - literally exhausted).
To cut a very long story short, I missed the deadline and when the next deadline came up for the 2nd form I had sent for, I rang the DWP office again, to inform them that I could not make the deadline due to all the information regarding dates they wanted, as I had too much paperwork to go through and I was finding it all so overwhelming, and asked that they cancel any pending claim they had for me. The lady who answered the phone was lovely and she asked me to wait a moment because she was escalating the matter to her Manager. She came back on the phone and offered to come round to my home with a Colleague to complete the forms within a couple of weeks, which they did. They were very surprised as the form was completed apart from all the diagnosis dates DWP had requested - I explained that the form had been completed straight away but it was going through all the GP notes for exact dates of all the major illnesses I have (Ischaemic Heart Disease, (had a triple bypass some years ago), Angina, Asthma, COPD, Emphysemia, Giant Cell Arteritis, Arthritis, Fybromyalgia, Cervical Spondylosis, curvature of spine and discs in back are crumbling due to degenerative issues, borderline diabetes at each test every couple of months although I am only 8 stones so not obese and I suffer with severe depression, anxiety and extremely low mood episodes due to losing family and close people, also animal bereavements in Pandemic (lost my 2 dogs of almost 15 years who had multiple health issues that were deemed to be eventually untreatable in 2020 when I had to make a decision to stop being selfish and to let them go). What with not being allowed to go into work due to Pandemic and losing my only sources of comfort, I was ready to give up, there didn't seem any point.
By the time of applying for AA in 2024, I also had other issues with my health.
The DWP staff who answered the phone, and her manager/colleague, went through my medical notes and I don't know what they added to the form as they took it with them. Within a couple of weeks I was awarded AA at High rate of £104 pw. This has been a Godsend expecially towards travel costs as I use taxis to go to my hospital appointments as I get extremely anxious driving there as it is always busy and trying to find a parking space in the many overflowing car parks, so that I am not late panics me so much. I also get flumoxed trying to find the exit. I had an appointment on a Saturday and spent approx 30 mins afterwards just driving round looking for the exit and it was really quiet that day.
A taxi is £14 return and I often have 2/3 appts in a month plus GP appts where the parking is £1.50 but is easier to manage for me. I now can't walk as far as I used to as I am getting swelling and stiffness in my legs, so I need the car for even short journeys to the local shop, and with the high cost of petrol and rise in all of the household bills, the AA has has been a godsend. I used to take home £1,400 pcm in my job so still struggle as I'm missing that, but £400pm+ is a huge help. (Sorry to go on, but I don't get to converse much now with no work and nor the little socialising on dog walks I used to do, but can't any more, I end up waffling when I do have to speak to someone so I hope this makes sense)
Please, please don't give up as I feel that is what a lot of the DWP staff hope for (not all). Your dad should have been awarded PIP straight away at the high rate. Good luck and I hope you get it sorted and it is awarded soon. Take care.