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Out and About

Story by

Karen

Date published

21 November 2018

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How it all started

Assessor when I mentioned having fibromyalgia said it seems like every corner you turn nowadays somebody has it. Then went through assessment without asking me one question at all but the way she said it was like she never believed in fibromyalgia then the fact she never asked a single question backed up the way it came across. She asked me to explain what dercums disease is that I have but never asked how it affected me or stopped me from doing anything. I also have osteoarthritis and she only asked if I was getting a hip operation if its that bad, when I said no she said so its not that bad that you need operation, I explained I'm to young for that I'm 43. When I got report back it had all sorts of lies, she said I never got mixed up at all, I could walk up steep hill in her opinion! I have h.s /cysts hereditary, high blood pressure, osteoarthritis, dercums disease hereditary which I had small operation to remove one lump, PTSD more than one, bereavement of 3 and I get spasms caused by my illnesses day&night. However I was only kept on standard rate they threatened to strip me of those points if I went in for my appeal which I did go in they kept it same but never gave me high rate. I went in with my daughter/carer they never asked her anything or us at end I wasn't allowed to ask my carer about dates and times which is shocking considering I have more than one illness that affects my memory.

What I did to try to overcome it

Letter of complaint written just not posted yet.

How it made me feel

I was completely traumatized by it all.

The outcome

I appealed, they stayed the same I'm still awaiting the report so I can take it to court.

Final thoughts

I felt intimidated, traumatized, mocked, not believed, not listened to, not asked if I had opinion. I still cry talking about it, it drained me that day and for weeks afterwards.

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Comments

Tilly 26 November 2018

Record interviews then a court can hear it

Mavis 26 November 2018

The level of ignorance and confirmation bias in assessors is profoundly shocking. I wish I could help more with advice but may I leave a few tips here for anyone dealing with this type of bias? Firstly, remember that any form or rule Capita etc give out is only their own take on the law. Find out what the law says and remember knowledge is power. If you can, avoid using the phone, only respond in recorded delivery letters. Remember that if you have to appeal or go to court in any worst case scenario, an evidence trail is vital. If it takes you time to do this it is further confirmation of your disabilities. Keep a record of what you do, a paper file of who you write to, when, how long it took, what help you had and record the sending via photographs or get someone to post it for you. You are disabled, not stupid. Show them. If you must use a phone, it is acceptable to record someone if bias is suspected and you do not have to tell them if, by their actions previously, Capita for example, they have already proved they are biased and discriminatory. You may be recording without consent to prove the 'bigger lie' and this would not be held against you. For Example - forgive me here - if someone asked to sleep with your 12 year old you would record it. Technically it is without their consent but the bigger law they are trying to break would allow discretion in recording. Never see Capita etc without another person present. Never make an effort with appearance. Let your pride go and be your usual self because the whole point of the forms is to consider you at your worst so let them see it. As regards letters, do not worry that you can't write professionally, you are a disabled person and should not be expected to. Mistakes etc only prove the point you are trying to make - that you struggle. Let them know that you will send copies to your MP, then find your MP and send them copies and explain things. You need all the back up you can get. Don't be afraid to challenge them because disability does not mean victim. Try to get all records ready for them. If you spend some money on getting your medical records from your GP it will be money well spent for years. If you can, or someone else can, contact support groups, even if they are not helpful the fact that they can't help proves your difficulties. If they can help, that is more support. Research your medical problems and print off information from good sources and put it in your file of evidence. It can always be used at appeal. If anything, you can ask your GP to reconsider health matters in view of anything new you may find out. Write to your GP - don't ring - put down everything and how you feel and keep a copy. Put it in your file. Ask the GP if there is anything you can do and that they can suggest to deal with your problems. You look like a person being proactive in your health care and if there is nothing, it proves the point yet again that you really are as bad as you say . Don't be afraid to acknowledge despair and defeat, it is part of human experience, so ring The Samaritans and log the calls you had to make, ring MIND, anyone, ask questions of online sites and groups and keep a record. Ask for any help with feelings that is out there, put yourself on the NHS counselling list. Your feelings matter and it may take time but it is something to hang on to. Prove that you are disabled, that you try, that you fight and if something helps, great but when it doesn't you still have proof you have fought back. It all goes in the file. If you need to appeal, write to your MP, or contact the Press, you then have buckets of data about your struggle. Always write, always record, always fight. Good luck everyone.

Tony 26 November 2018

I think one has to take the lead, advising how problems affect everyday life, do not let the assessor intimidate you, override them if they try to talk over you, may it clear to the assessor how if affects you on a day to day basis, they are not mind readers, record all, this information would be needed for court anyway, check the report when it come in against your understanding of what was said 😊

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