Hi everyone, I've had aortitis now for 2 and a half years and have been receiving income based Employment and Support Allowance. My condition is 'stable' but I am not in remission yet. I still feel unwell most days, fatigue and breathlessness being my primary symptoms just now. I did think that by now, I would have felt better generally but I dont. I mention this at every specialist nurse and consultant appointment, but it seems that that is whats expected when you have vasculitis. I have received a 'booklet' to fill in about how my condition affects my daily living and whilst I am not totally disabled, I certainly don't feel well enough to work. I have tried pushing myself as I hate being this way, but it always results in my feeling quite ill for days afterwards. I have been assessed by ATOS in the past, when I suffered with depression, and I found the whole process very demeaning and I was denied any benefits as a result. I have also read, with some regularity, that other people who are more disabled, with, for example, cancer, or MS, are being forced to look for work. I am extremely worried that this will happen to me. I am also aware, that appealing against any decision results in loss of all benefits whilst the appeal process is ongoing. This also includes housing benefit. I am currently receiving Work Related Activity Group ESA and am currently carrying out job searches, to practice looking for work, and I have to type up my cv. My work coach is very good, but feels that I need to start this practice, in the eventuality that I have my benefits stopped. I am 58 yrs old, and cannot retire now, until I am 66. I applied for PIP, some time ago, and received a letter, saying that because I didnt attend the interview, I would not be considered. In actual fact, I asked for a home assessment and a different time, because I wanted my disabled mother to be with me. They said they would ring me back, but never did. What to do now? I just don't know. Any advice, would be very welcome.
Receiving ESA, now due a health assessment b... - Vasculitis UK
Receiving ESA, now due a health assessment by ATOS
Hi Suzycat, dear old PIP ( sarcasm). l've read your message and having been through the PIP route twice now, there are a couple of things that helped me and may help you. Firstly, do you have - what used to be called a social worker - now usually a "team of advisers" of some sort or a health worker? If not speak to your GP. When l first started to lose my sight (2014) l had someone from the county Sensory Team, to help me complete the PIP form, you need to use the right jargon and they know how; actually she did it for me by talking to me over the phone, it was then sent to me to read and sign. Me being me, l took a photocopy of the form - just in case for future reference - which l highly recommend.
Secondly, if you have to phone DWP for anything, and this goes for 99% of all government departments, when they say they'll phone you back, YOU phone them, as they never - in my experience - return calls!
On my first dealings with DWP l was granted Standard living allowance; this has not been increased. On my second PIP adventure 2017, which came about because my PIP expiry date was the day before my 65th birthday and l wanted to know what happens next, l spoke to a very helpful adviser who asked me if my condition had changed; to which l said yes; l had had a fall in 2016 and fractured 4th lumbar vertebrae. He then told me that l would need to complete another PIP form - thank goodness l had kept the old one - he also said that once you reach 65yrs, although you'd still receive PIP payments you cannot get increased payments; useful to know. So, yes another interview, l think l was lucky by having considerate interviewers each time; it didn't stop me being wound up like a volin string, and l managed to get Enhanced mobility allowance this time!
So keep on phoning DWP about a home visit appointment, try not to be to abrupt - l know it's hard - because sometimes a little consideration/humour to them can go a long way.
Best of luck, Sally
Thank you Sally, Ive read a lot about the DWP and their 'antics', theyr not getting good press just now, and neither are their health assessors. I totally understand the diplomacy bit...got no choice really, but to ' cow tow' to them, nevertheless, I really feel that they really do not care, and neither does government, generally. Your advice is sound, and im sorry for you, and anyone else who has the uphill struggle of fighting for their rights. Thank you 😊
Chin up Suzycat. Do you have a health worker or someone who can help you with your PIP form, preferably someone who had experience in filling them in? Sally
Hi Sally, and thanks for your input..this is not a Pip form, it is a capabilty for work questionnaire, that I have to fill in and return to ATOS, who then decide if you need a face to face assessment, which I think is highly likely. The pip questionnaire was what I mentioned earlier in my illness, I haven't followed that up just now, simply because I need to address the capability for work questionnaire first. I dont have a social worker as such...I dont need one just now. I might try Citizens Advice though.
Hi Suzycat
I had an assessment earlier this year and found it very demeaning and stressful. I was summons to an interview at the job centre before then which I was very angry about. But he did give me on good bit of advice which was don’t tell them how you are feeling on the day that you are there but tell them how you feel on your worse days. I started every answer with ‘on my worse days....’ I had a young lady GP who was very nice and indicated to me that she thought I had more than enough to cope with and she didn’t feel the need to go into my back problems. I was put in the support group which saves the hassle you are going through. I also took my Huge folder full of all my letters etc from my various consultants. She seized upon these and took copies of the latest ones which showed my poor blood results. I found it very depressing to have to concentrate and express so much that is wrong in my life.
Good luck I hope it goes well for you. Let us know how you get on.
Jackie
Thank you Jackie, I'm sorry that you had to go through that.
I read nearly every day, about genuinely poorly people, who have to suffer the stress of going through the health assessments and probably then being refused benefits. It's refreshing to hear that you had a more sympathetic assessor, but unfortunately, I feel that this is rare. Thank you for your reply x
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