Pernicious Anaemia Society

Fed up

Last Friday afternoon I had my appeal for my benfits due too the damage caused by not getting my b12 injections. It was clear that they have never dealt with a suffer of Pernicious Anemia before. By the end of the meeting I felt as if I have been making the whole thing up. One of them didn't believe that a vitamin deficency causes nerve damage and all the other problems that come with this condition.

They said in my letter that I cannot get the extra money I'm owed but had they done the assessment in September when I came out of hospital rather that 5 months later then I would have been awarded the money.

All this stress really hasn't helped and over the last couple of days I've been having really bad panic attacks, dizzy spells and ended up slipping last night while trying too get out of the bath and smashed my foot against my shower. This afternoon was so fed up I called my GP and they actually sent a doctor out too see me!! (A shock I know). He was shocked too find out that I'm having too self medicate and that I have not had any follow up for almost a year. I have been told too go in next Friday for tests and then follow up a week later. He also said that the poor circulation helped too keep the swelling and brusing down in my foot but as a lot of the damage was caused last year when I fell there wasn't a lot he could do.

4 Replies

Not really sure to say - the treatment you are getting is truly appalling.

Good that someone now seems to be taking some notice.

Have you been in contact with the PAS - may be that they can help with an appeal against the decision that has been made on the benefits as it does sound rather poorly handled - they should really have referred to experts on the condition.


hi Penni. I'm soooooo sorry to hear what your going through and the response/actions from the benefits assessment people. it is appalling & totally unacceptable behavior.

i know that one has the right to challenge/appeal decisions made by ATOS or the new assessment company - can't remember their name. This may require going to a tribunal, but not necessarily.

however, you should be able to get a supporting letter from your consultant clearly delineating the state of your compromised peripheral & central nervous system due to delay in diagnosis and treatment of your PA. you should get another letter from your GP stating how debilitating & compromising your condition is, how it limits you on a daily basis. now is a good time to drop your GP a line as your circumstances will be fresh in his/her mind. briefly explain your treatment by the 'Benefits Assessment'' people to him/her & the benefits you were turned down for. That's the very least the medics can do for you to compensate for their negligence in late diagnosis.

If it were me, i'd write a letter of complaint to ATOS or whatever outfit assessed you. i'd clearly outline the fact that you were evaluated by someone (giving the name) who had NO knowledge whatsoever about PA, never-mind the horrendous irreversible consequences of it's late diagnosis, that you are now suffering. and that a decision was made on complete lack of vital knowledge on how your condition affects you daily. i'd include copies (photocopies) of all letters from the GP/Consultant/PAS etc.

if you need further help with challenging the appeal, i'd go to Citizen's Advice Bureau (CAB) in your area. the local council should also be able to give assistance any appeals that you wish to make. Health Watch is another source that maybe able to sign post you and of course the PAS. i'd give PAS a ring. no doubt they'll be able to advise you, maybe even intervene on your behalf by writing to ATOS explaining the effects of neglected PA on the nervous and other systems. i think it's appalling that assessment health professionals (if one can call them that) don't have basic health information/knowledge and are allowed to make such important decisions on behalf of health compromised people. another source of help would be a letter from your MP that seems to get them listening and acting more professionally.

i do so sincerely hope that you get the help you need, the benefits you are due & that your general health soon improves. my thoughts are with you.

all good luck



So sorry to hear about what you're going through.

The PAS are sympathetic. You can leave a phone message and they will get back to you. Head office: 01656 769 717

Another possible source of support Contact details on website

Have you been in touch with your MP? They may be able to ask questions on your behalf.

It might be helpful to write down what you remember was said at the meeting...questions asked and responses given. I keep copies of e-mails, letters and a written record of phone calls. Is there someone you can take with you for moral support if you have other appeal meetings?

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I understand how very difficult it all is. I have a friend who has MS and she was told she was fit for work when to anyone with any knowledge at all would know she was not. Her view is that they know darn well she was not fit for work but if they say she is, then she goes on job seekers allowance which is a lot less than the benefits she was getting. Then when she is too ill to turn up they can then stop the job seekers allowance as well. This situation is beyond disgraceful. What puzzles me is how these benefit fraudsters do it. It could well be that there are not that many but the media hype it up so that people would agree it is a good thing decreasing benefits. I hope your foot heals up soon, and that you get some kind of help.

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