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Fibromyalgia Action UK
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0 points , Pip 😥

Dear all

Just received notification. 0.points.

A wellbeing adviser from the county council applied for me and suggested it.

M. E/ fibromalgia, borderline personality disorder, depression, anxiety, 35 yrs, 12 years, urology, vulvodynia, gynaecology almost daily problems.

My life's been unbearable, had to give up work 6 yrs ago.

Cannot believe it, all lies. Stupidly didn't record it. Wasn't anyone who could be with me.

When she arrived within 2minutes of asking me how my illnesses affected me I had a awful panic attack, sobbing.

I found it so difficult having a person in my house.

I couldn't answer things was staring into space, no concentrate a lot of time.

I fell on the sofa when she asked me too do exercises , couldn't bend over.

(she said oh it's lower back)

She said, Normal weight and dressed appropriately.

I'm 4 stone overweight,!!!! had clothes on I had on for days, a pull on skirt. Top. No tights on couldn't bend to put on.

Long patchy, Grey hair were I don't bother having hair done.

I had urology, gynaecology, reports

Oh and she said as I was a full time carer to my 25 year old disabled son who lives with me, to stop the poor lad going into a home,

I must be OK.

(I have support workers who help)... Few hours a week

Just feel so angry and down.... I don't no how she sleeps at night.

Thanks for listening everyone. Any ideas.

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I'm sure there'll be others who reply to you who have more personal experience than I do.

I can see why these PIP interviews are done but the way they're carried out seems all wrong to me. It's as if the assessor has already been primed " don't pass this one, pass that one"

All I can suggest is an appeal and make sure you can have someone with you. I'd be happy to be the " backing person" for anyone in my area.

Could you have a list of things you can and cannot do for each section. E.g. Cooking : I can make

I cannot: and this list will be longer.

Personal care:

Mobility:

I know others will have more suggestions. I'm sorry you had to go through this, it seems so unfair when we're ill, not through choice, not through anything we've done. We're dealt these cards and do our best to survive.

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Thank you for the tips and reply, I feel terribly upset,and down.

What a country .

Best wishes

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:( sorry you've been through this, I've had this twice while on ESA and at the moment I have pending home assessment for ESA and Welfare Rights have just done my PIP review form for me.. not looking forward to the rubbish they'll come out with.

What you need to do is ask whoever helped you with the form to help you do an MR (mandatory reconsideration) and also request a copy of the assessor's report from the DWP. They may not overturn it with the MR but hopefully, it'll be sent to a tribunal.

Ajay575 might be able to advise you :)

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Thanks very much hope your ok.

In all the years I've been never claimed anything

I no it's not personal .criminals are treated better in this country and animals.

Best wishes

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Hi cherry it is happening a lot now terrible .I would advise be in pain etc and dress how they want you to be next time no wash as well it has to be once this happens terrible once you have been through this once bitten twice shy .your best advice is go back to your wellfair rights they are usually good and hard to get they should be best and know procedures etc leave it to them as they already helped you they will not be happy as well phone today or monday for appointment if you can.p.s I would leave the advice the now untill you see the wellfair rights if you can any problems come back on .even your mental health terrible .the fact you got zero points will help you hopefully

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Thanks Ajay, really appreciate reply.

Best wishes

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Hi Ajay

Can't get into welfare rights , I've been advised on here to go with fight back 4justice ,or benefits and work

Not sure who too go with any advice ??

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Hi cherry can you keep trying as they are best bet as filled your forms in say that when you phone or leave message that they are dealing with it hound them if you can they are busy but you are a client now .if that fails try cab first if you can try your hardest with they 2 first.if no success I only heard about fightback4justice they are meant to be Mistyang has used them.benefit and work is good as well I read their sites all the time you can get some advice from adviser on hear same as benefit and work. with benefit and work you have 24 /7 access and unlimited downloads etc and all your templates for MR and appeal It does cost £20 I would leave them untill you deff cannot get wellfair rights or cab if fails I would suggest benefits and work .mind get a letter from support worker if you can again saying all the help and support you need a d long term and unlikely to change and get support worker also to put the words for your mental health anxiety disorder and depressive disorder and severe if you can .

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Hi Ajay. Thanks very much for tips

Best wishes

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Put in an appeal, I think the idea is that if they refuse at the first assessment people won't bother appealing. Do get some help from welfare rights as well. Just don't let them knock you down. They lied about me as well but I appealed and won. I know it's stupid that people that need help have to fight so hard to actually get it. Also make sure that you have proof that someone else helps your son. Keep fighting and don't forget that you have people on here who are on your side.

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Thanks for reply , I'm really trying hard to not let it get to me .

Panic attacks creeping in .

I no it's what They want to give up.and thanks , I have no friends at all now so to hear I've got support is lovely x

Best wishes

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healthunlocked.com/fibromya... hi there although I have no experience of this I’m glad members with ideas and experience have already replied so I hope you re apply and use some of the tips suggested , if you would like to lock your posts it will give you more privacy and for other members replying also , the link is above, I’m wishing you the best of luck in going forward with this x

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Hi thanks for the reply, I'm struggling with the instructions on how to lock post,sorry to be a pain.

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No problem I’m always trying to do things, when you right a post at the bottom you will see 2 little circles , one on the left will say anyone can see this post and the other one will say only our community members can see, so hit that button. Xx

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A lot of members seem to not see this Yasmintina - is there anyway it could default to locked to members and you would need to click the button to make it Public instead? Just a thought

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Don't know how to help. Just I know how horrid it feels. You are not alone. Ask CAB about legal help appealing. Our law service don't like to take cases where the person gets no points. they don't want to waste resources on hopeless cases! I wonder does the DWP know this and are awarding nothing to put folks off appealing?

Other areas are still taking cases and sometimes they do get from zero to max, so it's not hopeless. Whether you appeal depends on your resilience and if you can possibly manage without. Tribunals do take a long time and it's a long time to have to stress over it. But if you can, you should alway appeal if you feel the result was wrong. Too many still are put off due to fear and feeling like they cant manage it.

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Hi hope your ok, thanks for the information, best wishes

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Hello Cherry45

Go to the CAB ,they will help you with the way to go next.Help you prepare MR .Ihad the same done to me the assessor lied throughout -recorded what he chose to not what he was actually told-fabricated so much ..I have not worked since 1998 due to my disabilities/conditions-and they disregarded all that and being in receipt of IB/ESA and DLA all that time-so not a new claim.,

I also put a complaint in re the assessor/DWP which the CAB should help you with-I contacted my MP who took that on and the complaint goes to ICE-but it is a long process -ICE have received so many complaints they are over a year behind.

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Hi rainbow, hope your ok today,

It's shocking you see never applied before in 12 years.

I will take on board all your information it really helps as it doesn't become so personal and you realise that they are doing it to everyone mostly.

Best wishes

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It is terrible,if they stuck to the choices on the PIP point scoring-i did the self test-scored 30 points for both care and mobility-i have a carer now who washes and dries my hair and prepares my meals.

ie one example I cant get in /out of the bath unaided-which scores points ,use aids to dress/wash etc and get about -all of which were recognised in previous benefit claims-they cant not score points-but the assessor raised matters that were totally unrelated-ie school and work.my schooling has no bearing on anything and because part of my job was a wages clerk he said it involved budgetting when it did not and it was never raised during the actual assessment-so all lies,.I even reminded them that in 2005 the judge said I would never have to attend any more tribunals.

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I had that on my first assessment. Because I went to school and learnt maths I now have no trouble budgeting!!! It doesnt take into account how my brain doesnt work now! They're absolute Swines and liars and are hoping to put up so many barriers that we give up.

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i got because i went to mainstream school i had no problem reading signs or understanding "complex info"-should have told them I got a grade E for English O level and i left school in 1975-stopped work in 1998 on health grounds..As you say they dont take into account frazzled brain .I have had arthritis in my hands since 1994 and got "no sign or swelling or deformity" yet I have now been diagnosed with both rheumatoid and osteoarthritis plus what i am still fighting to get a diagnosis for.

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Agreed. Apparently I have no cognitive problems or mental illnesses because I:

- Went to mainstream school,

- Have a BSc and an MSc,

- Worked as an applied physicist for 7 years, and - Was doing a PhD in applied physics.

This is all true, however:

- I finished school 27 years ago, my BSc 18 years ago and my MSc 16 years ago,

- My applied physics job ended 12 years ago,

- (The HP forgot to mention my 2 years working part-time in epidemiology 4-6 years ago, but I had to be signed off from that job until the end of my contract due to the way it exacerbated all my conditions),

- I had to leave my PhD programme 9 years ago *because* I developed my physical disability, and the programme was seriously exacerbating my mental illnesses.

ALSO

- I've had my mental illnesses since childhood,

- I've been in various therapies and on 14 different psych meds since 1994, and permanently on meds since... 2004-ish?,

- I've had to take years off from school, uni and work throughout my life due to my mental illnesses and physical problems,

- My mental illnesses have worsened severely since my physical disability started, and

- I'm on 8-11 prescription meds a day, including tramadol.

Wrote this up for tribunal. They agreed.

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Happened to me too, all I can really add is to go to mandatory reconsideration and then onto tribunal if needed. I know it's hard to fight back feeling as we do but we have to try to stand against this it's unjust.

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Thanks , hope your ok today.

Yes I will , we can't let them treat us like this

Best wishes

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Hi Cherry so sorry to read of how awful you have been treated. Personally I used Fightback4Justice, they have a website and a Facebook page too. The next step would be for you to ask for a Mandatory Reconsideration but you need help with this, please don't try to tackle the DWP on your own. Please have a look at Fightback4Justice their success rate is great, I used them for my DLA and PIP. They charge expenses but worth every penny fightback4justice.co.uk. m.facebook.com/Fightback4j/ please don't give up without a fight. Gentle hugs xxx

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Hi thanks so much for your reply and kind words.Hope your ok.

In a world were there's not alot .

I will check out and decide were to go .

Thanks really good tip.

Best wishes

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I was led to believe they don’t ask you to do anything physical so why they asked you to do exercises I don’t know. Also you should start or include, at least one of, the following in every sentence-

-Harm is likely to occur

-An acceptable standard

-In a reasonable time

-Repeatedly

Good luck with it all.

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Hi valpea,hope your ok, I no I was really humiliated.

Bending , stretching , putting arms up my back , reaching up, can I stand on tip toes , at. that point fell back on the sofa backwards I was using the arm for support and the base for support at the back..

Felt so stupid . Useless.

Best wishes

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Stop feeling useless or stupid! How can you be useless when you’ve come so far? I’m sure your son would say the same.

Take care.

Val x

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Thanks valpea, smiling 😁

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At mine i was asked to do "exercises" which were all one -off movements ie pinch the assessors fingers .touch your chest with your chin.

they were not considered that i would not be able to do things repeatedly and safely.-had a major housefire and two pan fires-burning myself cos turned wrong ring on and forgot put frying pan onto heat up-went to do something -pan went up in flames.

touching chest with chin-which is impossible to do anyway -proves nothing.pinching someones finger is not the same as holding a pen for a length of time causing pain and stiffness and inabilty to write.

re bending stretching etc -doing these repeatedly causes pain-in me back and shoulders -again were one off movements.

the assessor claimed to be a paramedic and the MR stated he was fully trained to assess-he lied about how my conditions affect me for one.

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They ask most people to do physical exercises.

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Appeal to tribunal.

Unfortunately being on your own definitely would go against you. Being your son a carer can also depending on what was written in his claim.

Plus listing your conditions is not as much use as we think unless we go into details of how they affect us. That means shaming ourselves to admit we can't cut certain foods to prepare or eat and how we get food from a pan to the plates without lifting the pan and So on

It's degrading to say the least but you have to base it on your very worst days in detail.

Please have someone with you for future interviews/appeal not only to help you remember and actually speak on your behalf but also to lend support after it's done.

Good luck xx

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Hi thanks, my son was there .

I thought it would be enough.

How naieve I am.Thanks for comments I will take it all on board.

Best wishes

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I learned the hard way unfortunately. I am entitled to high rate care now but only get mid rate. I daren't claim the extra in case I lose it all.

Isn't it awful how they make us feel as though we somehow fiddling the system?

Rita xx

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Rita, it's outright shocking disgrace

I wouldn't be entitled to high rates as I'm not as severely disabled by it as some thank god.

I'm truly sorry for all those that are.I was 6years ago, could barely walk a few steps ,but it's at a medium level I would say, which is a godsend.

DWP , that's part of the of there plan degrade , embarrass, shame,

Felt all those emotions this weekend.

Hoping your feeling ok ish today

Best wishes

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I am on the liver forums too as my liver decided to fail ... WATCH THOSE DRUG SIDE EFFECTS AND APPETITE PROBLEMS ALL

one guy on there had his benefits sanctioned so he lost them for 6 weeks because he missed an appointment - he was on the table for emergency surgery at the time. Not a good enough excuse.

He developed a particularly aggresive liver camcer and was given 6 months.

He lasted 4. The day after his funeral his wife got a letter saying his PIP application had been reviewed but he didn't qualify!!

The guy was dead, how I'll do we need to be?

It's beyond s joke that it isn't medically trained staff handling claims. As you said it's a disgrace.

Rita xx

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DO NOT base it on your worst day! They say to base it on an average day, so if they find out you used worst day they could charge you with fraud. Also, if you happen to be having a good day at assessment/tribunal they'll wonder why you're doing so well.

If your disability/illness is variable, definitely explain that. I did it as follows:

Good days - about 30% of the time: I can fly and shoot lasers out of my ears. (Some useful details.)

Average days - about 40% of the time: I can't fly but the lasers still work. (Some useful details.)

Bad days - about 26% of the time: No flying, no lasers, no fun. (Some useful details.)

Worst days - 4%: The lasers burn my brain. Pain levels range between 6 and 9/10. Serious fatigue (have to sleep about 18 hours a day) for 2-3 days after a worst day.

:)

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You definitely need to apeal

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My last PIP application returned 0 points too. I took it all the way to Tribunal where I was awarded 19 points. To add insult to injury, they then failed to pay me saying they were going to decide wether or not they would appeal the tribunal decision. I waited 3 weeks, then contacted my MP office. They paid me the same day!! Don't give in! They automatically give 0 because most people never bother to appeal. I'm not kidding, it is a scandal!! Take a look at what MP Carol Monaghan has been doing on our behalf, in Parliement. (https://www.thecanary.co/exclusive/2018/05/10/an-mp-is-calling-for-a-debate-into-one-of-the-biggest-medical-scandals-of-the-21st-century/ ). So don't give up, Get technical and specific. Your appeal should emphasize your inability to think , Brain fog, Your fluctuating condition, Your worst days, and the fact that you are unable to do things safely and repeatedly without it affacting you negatively. The PIP is an award to compensate for the additional costs that your condition causes you, like extra heating, washing, more expensive shopping, etc The PIP is not awarded purely because you have the condition. So go over what you put inyour application and make sure it emphasis what it needs to. Take out your highlighter pen and get help with the details then take it to tribunal. Good luck.

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Mo123, thanks so much. Fascinating read.

Great tips and a boost to my moral.

I will definitely do as you suggested and get as much help as I can.

Best wishes

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thanks for putting up that link.will definitely take a look,

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I feel very sorry for you.Please go straight to a Mandatory reconsiliation and if that fails go to appeal. I havnt read anyones replies here but get a copy of your eport if you havnt done so and write, or get someone to write a letter refuting all the lies. Then if you go to appeal it will be taped anyway. \if you can afford it join Benefits and Works which is £18 for the year.They do excellent guides on how to fill these forms in.

There are 4 descriptors that you need to repeat at them ,which are, can you do xyz, repeatedly, safely, in a timely manner and reliaably, So for instance-if you can cook a meal but cant do it repeatedly throughout the day then you cant do it, or if you're likely to injure yourself etc. With fluctuating conditions like Fibro and M.E you need to stae, if its true, that you are never symptom free and dont have 'good days and bad days-just average and worse ones. Good days implies you have no symptoms.

I've just had a PIP F2F and I taped it because at the first one loads of lies were told about me. Good Luck

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Hi thanks for your reply, sorry to hear of your problems facing the mindfield of benefit claims.

I've tried very hard all weekend not to be upset bit we're human unlije capita ,DWP.....

I've felt everything more this weekend I'm not sure if it's a reaction to the upset .

Thanks all these pointers , I shall take them all on board, thank you very much for your reply.

Best wishes

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I got 0 points at my last PIP assessment (after 7 years with a combo of standard and enhanced for both daily living and mobility). When I got the report and saw the 0 points (and the ridiculous things he wrote) my mental health went down the tubes. The decision letter and the MR letter made it worse.

It's really difficult to be given 0 points, especially after what the system makes you do. You had to think through and write up all the embarrassing/depressing/horrid details of how your disabilities/illnesses affect you. I found that very difficult, as I try not to think about that kind of thing - I try to think about what I *can* do. Then you (probably) had to tell a complete stranger about it, knowing that they were judging you the whole time. Eek. After hearing/seeing/examining you, that stranger gave you 0 points, which means they basically called you a liar, a fraud, a feckless lazy scrounger! You know what your disability has cost you - the things you can no longer do, the dreams you had to change, etc. Having an "expert" disbelieve me was crushing.

I have mental health problems and chronic pain, so no visible signs of my conditions. I've had people doubt my pain (lazy, crazy, exaggerating, etc. according to my Dad and two of my mental health workers) and disbelieve the extent of my mental health problems (thanks Dad) so often that sometimes even *I* wonder... After getting 0 points I had a crisis and began thinking that maybe it *is* all in my head, that I've lost my old life because I'm crazy, or lazy, or... I had to ask my pain management group, my counsellor, my partners and my friends about it (they all told me to stop being ridiculous).

Being betrayed by the system that's supposed to help you is difficult too. I kept flipping between abject depression, absolute fury, and, occasionally, hysterical laughter. As you find out more about it and how common this kind of thing is, you might experience depression, rage, anxiety, disbelief, etc. Realising that the gov't really doesn't care if we die, that the public don't know/care enough to do anything about it, and that our country isn't what we thought it was... Pretty shocking. I felt helpless and hopeless.

Then there's the fear... How do you survive without that benefit? Will you have to live without enough food, or enough heat? Will you lose your home, end up moving back in with parent(s) or sofa-surfing, or become a rough sleeper? What if you lose your Motability car? You probably won't have enough money to be social, and isolation sucks. Borrowing money from friends/family is humiliating, but loans are dangerous... If you fight, the MR will probably go poorly? What if the tribunal doesn't believe you? Even if you do get it back this time, when will that next brown envelope come through the post? What if you end up on Jobseeker's or in the WRAG? What if you have to switch to UC? Sanctions! Aaaaah! Our lives are dependent on a system that assumes that we're guilty from the start, and I find that hard to handle.

After my 0 points assessment my mental health got so bad that my friends/partners had to make sure I ate, bathed, etc. and I became suicidal. I wish I could have avoided that, but this was my... 5th tribunal? 6th? I just didn't have enough let to go through another one. Luckily I had people who supported me and helped me through it!

Don't blame yourself - you did nothing wrong! Don't doubt yourself. Don't think that the HP chose you because they didn't like you - it's not personal. If you can, don't give up! You'll get support and help (here, other forums, twitter, facebook, orgs such as fight back, Mind and other condition-specific groups, welfare rights, CAB, etc.). Don't be afraid to ask for help - the system is complicated on purpose, and I think it's designed to get us to give up. There are lots of people who've had similar experiences who want to help, and sites like benefitsandwork and pipinfo are great resources.

I found that getting angry and fighting it helped me - you may too. I'm not helpless, darnit! We can:

- Take it to MR,

- Take it to tribunal if necessary (BTW, I won my tribunal 11 months after my assessment. I got 19 points (standard for both) for 4 years),

- Complain to IAS/Capita about the assessment and/or the report,

- Complain to the DWP about the process, the result, IAS/Capita, the Case Managers who dealt with the original and MR decisions (particularly if they just rubber-stamped the assessor's report),

- Complain to the assessor's professional body,

- Keep complaining. You may get nothing, you may get an apology, or you may get compensation. Whatever the outcome, you'll add to the statistics - there was an 880% rise in complaints last year - that adds another little bit of evidence against this horrendous system,

- Tell your MP about it if you feel you can,

- Tell friends, family, strangers, your dog,

- Tell the newspapers if you feel you can. A lot of the public are really ignorant about benefits - educate!

- Support others going through this if you have the energy,

- Join DPAC and other groups,

- Tweet, post on FB, make gifs, write stuff for a newspaper, start a blog, go on demos, etc., but only if it won't be bad for you.

Remember three things:

1. Self-care comes first!

2. What they're doing is immoral and almost certainly criminal. It doesn't mean that you've done anything wrong, or that you're somehow bad.

3. You have value. You're a unique human being: nobody will ever have your exact thoughts, experiences, or personality, nobody will do the things that you do, nobody will live your life. It doesn't matter whether or not you work, volunteer, knit hats, write a blog, have kids, bake cookies, or lie in bed all day. You have value because you're you, one-of-a kind and irreplaceable. Even if *you* don't think you're valuable, we do.

If you still need help, I'm happy to offer advice. I'm just a claimant, not an expert or professional, but I've won 5 or 6 tribunals. Be warned: Sometimes I stop communicating for a while due to pain flares or mental health.

I've written a novel, and it's probably over-emotional nonsense. Day 3 without sleep + pain + meds + constant kitty interference! Whatever, it's written now, so I'll post it.

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gosh you've really been through it! I love your resilience!

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Thanks. :) They broke me this time, though. :/

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Waylay, really sorry I've just seen your incredible post I don't know how I missed it.

I write all the pointers to replys down and take it all on board.

Your incredibly resilient , I do not think I could do what you have .

I've never claimed anything before except carers allowance.

I suppose I fooled myself thinking into thinking I wasn't as bad as ive been .

I can't imagine what you have been through .

Thanks again for the post .

Invaluable.

Best wishes

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Thanks. :)

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I don't know how they sleep at night either, they're playing with people's lives! I had an experience similar to you. Ask for a mandatory explaination or apply again

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Hi thanks for reply, I told my doctor yesterday about them saying in particular I'm a a carer so must be OK. She was was livid and I is writing a supporting letter.

All I can do and other people is battle on,

Best wishes

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Hi cherry that is good about the letter .photo copy it 3 times and send 1 to the MR and keep another for appeal incase they do not read it AT MR and hand it in at appeal and they will read it before you go into the appeal and keep the original for any benefits in the future to use and copy .once again hope you get a result good luck .

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Cheers Ajay will do. 👍

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What really annoys me is the consultant phycological, has said its more than likely my caring role has resulted in fibromalgia /M. E because of the trauma of 24 /7care I've done.

I totally gave up my life,as do other carers.

It was worth it to stop him going into residential, I do have letters from the care agency who now comes in for him so I will include them also.

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PIP seems an unfair system, but when you apply for PIP the application form asks you how you illnesses, disability affects your daily life in relation to the PIP descriptors, so sending in and focusing on your illnesses and disability but how your illness affects your daily life reference to the PIP descriptors and the same at your acessment, as for doing exercises the acessor cannot ask or make you do any activities that cause you pain, discomfort or upsets you. There is no set agenda to fail him or her, pass him or her you have to prepare yourself with answers that best describes your difficult days and not a yes no regime as this allows the acessor to enter the first option without investigating further of why you gave that answer.

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Hi thanks for the reply

Best wishes

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Appeal, get letters from the care workers, GP etc who help you and send those as evidence, keep a diary sheet of how your condition affects you during a 24 hour period, put everything on this diary sheet including how it makes you feel, the physical stress on your body etc. do this for every day (it will be a bind to do but when you have your appeal heard you will have evidence to give the panel) also put on you appeal form how you told the assessor everything but that she/he didn't listen to what you told them. I told mine last time that I could only walk as far as the end of the cul-de-sac, she put down that I could walk 4 bus lengths, the end of the cul-de-sac is not even 1 bus length. I am waiting for my assessment this time, I usually get a home assessment, this time they sent me an appointment to go to an assessment centre even though they were told that I could not get there, like you I have nobody who can go with me and I have panic attack, I fall easily etc, it is taking an awful lot of phone calls, (so far 3 to the assessment centre and 2 to my GP) they claim they wrote to my GP on 14 November and that they have not replied to them so that is why I have to go to the assessment centre, my GP say they did reply to their letter, and that if I want another one I will have to pay my GP £25 for it, this would only contain the same information that they have already asked my GP for and which he claims he sent to them already.

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Hi great tips , thank you very much for the post.

Merry Xmas and I hope your sorted out with your pip X best wishes

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