Tuesday, 6 May 2014

PIP assessment

I have had my Personal Independence Payment assessment and I think it went well! Obviously I have no idea what the outcome will be yet, but I feel that they got a good understanding of my current difficulties. It now just depends which boxes they decide I fit into.. The purpose of this post is to hopefully help/reassure those currently awaiting a PIP assessment.

I won't give exact dates, but I initiated my claim early-November (telephone call) and returned my form early-December. I waited and waited and heard nothing (having been told I'd hear about an assessment within 20 days of sending my form- ha, yeah, no) so rang sometime in March and they said my application had been received, they had requested further information and I was on the waiting list for an assessment appointment; I was told I should hear in the next couple of weeks. I didn't. I eventually rang again (about 20 weeks after sending form) and was told there was a cancellation appointment available on Friday, and if I didn't take that it would probably still be quite a long time, so I took it. [I would advise others waiting for an appointment to ring and ask Atos/Capita whether there are cancellation slots available.]

While on the phone, I got authorisation to get taxis to and from my assessment as I didn't feel confident to travel to somewhere I'd never been before alone. She'd told me to bring 2 forms of ID and given me the address of the assessment centre over the phone, but I received a letter in the post confirming all the details.  So I arrived at the assessment centre no problem at all- had a lovely taxi driver who [showed me pictures of his dogs at the traffic lights and] took me to the building and pointed to the exact door I needed to go through. I assembled my scooter, got a receipt, and headed in.

A lovely lady on reception took my name and asked for my ID. She then asked whether I had any new medical evidence with me for her to photocopy- I passed her my pile of recently-received medical letters- and she told me to take a seat while she sorted the letters, and then said 'I can't believe I just said that' because I was sat on my scooter- lol.

I pulled across by the seats and she brought across the originals of my medical evidence. She then gave me the envelope and form to claim for my travel expenses.

There was one other disabled person (+ their accompanying person) in the waiting area who was taken in by a different assessor before me. The atmosphere was relaxed and non-intimidating. I felt quite at ease.

About 5-10 minutes after my appointment time I got called through. The assessor introduced herself and apologised that she would be typing and not looking at me a lot of the time, and for the amount of questions she was going to have to ask. She asked how I had got there (taxi), asked whether I had come alone (yes), asked whether the evidence that had just been photocopied was the same or different to the evidence I had sent to DWP (different) and asked about employment (student on medical leave- I explained about my deterioration and she asked which course I was studying and which year I had been in).

She then confirmed my diagnoses with me: Asthma, Chronic Fatigue Syndrome and Atypical Facial Pain. She asked whether my asthma contributed to any of my functional limitations and I said it didn't as my CFS has a far greater impact. We then moved onto my CFS and I was asked how long I have had it, so I explained that I got ill in September 2009 and was diagnosed March 2010, and she confirmed with me that I was on a number of medications due to my CFS- she checked that she had the copy of my repeat prescription and confirmed with me that I don't regularly take over the counter medications in addition to these. She then asked me about the symptoms I experience as a result of my AFP- I described my symptoms and she asked whether this condition is linked with my CFS- I said the facial pain is believed to be caused by my CFS, it gets worse if my CFS is worse, but also sometimes worsens randomly. I said that I take pregabalin for the facial pain, which gets rid of the constant headache, but I still get some random shocks of sharp pain.

She then asked whether any of my medications cause any particular side-effects; I said that my pregabalin worsens my tiredness, but had no significant side effects from anything else. She asked whether my medications help, and I said they do to some extent, but none of my symptoms are completely eradicated by them.

I was then asked what therapy/treatment etc I have had, so I explained that I have been under the CFS therapy team and received a lot of advice about energy management, pacing, improving sleep etc. I said that I was given 'exercises' (but explained that these were very gentle stretches) but have since been advised not to do these at the moment due to my low weight. I went on to say that I am under a dietician due to my low weight caused by nausea, so what I eat is very important. I also mentioned that I have regular reviews with my consultant.

She asked when I last saw my consultant, so I looked this up and told her. She asked how my most recent appointment went. I explained that my condition had deteriorated significantly since I had seen him the time before, and that he advised me to sit up regularly with my feet down to try to maintain my blood pressure and pulse reflexes (although I couldn't think of the word at the time) to prevent things worsening. I also said he had advised me to wear shoes around the house to try to keep my feet flat as my left foot is turning inwards. I mentioned that he'd also reviewed my medications.

She then discussed my living arrangements and my mobility with me. She asked whether I lived in a house/bungalow etc (house), how many bedrooms, who I lived with (parents), whether there were any aids/adaptations (I said I had a shower stool but no adaptations to house). She asked whether I used any aids to get around the house, to which I replied walls. She confirmed with me that I use my scooter when I go out. She asked whether I have difficulty getting around the house- I said that I have to limit the amount I walk around the house due to fatigue and pain, and my symptoms worsen if I overexert. We discussed the fact pain, fatigue, worsening of other symptoms (nausea, sleep disturbance etc), dizziness and difficulty with balance all affect my walking ability.

She asked whether there was anything I wanted to add, and whether I had any questions. I didn't have anything more to say, so she moved on to discuss my typical day.

She asked when I normally go to bed, when I normally fall asleep, why there is a very significant delay (sleep reversal and pain), and when I wake up/am woken up. I explained that my mum normally wakes me up when she brings me breakfast, and was asked whether I would sleep longer if not woken, I replied probably a bit.

She asked what happened next and I said I take my medications, so we then discussed whether I manage my own medications- I said that I do, but this can be a bit temperamental at times. I explained that I have a lot of alarms that go off to remind me to take my meds, but this is not always successful.

She asked whether I had any physical difficulties eating the breakfast my mum brings me. I said physically eating isn't really a problem, but I wouldn't particularly think to eat if it wasn't brought to me, and if it was something very chewy I might struggle due to fatigue.

We then discussed getting washed and dressed. I explained what I struggled with and what I can manage- she seemed to completely understand and was non-judgemental about my difficulties. We discussed the problems I have with bathing and showering and I explained washing my hair in particular was very difficult for me. I said that I had no difficulty reaching any areas of my body- it 'just' causes fatigue and pain. I also explained that the heat (and being upright, although sat down, in the shower) is a problem, and can cause me to become dizzy, so I rarely shower/bath with no-one else in the house. I was honest about how often I just have a wash instead and how often I get dressed.

We then discussed going to the toilet/continence etc, and I explained that the only difficulty I have is walking to the toilet when I'm feeling unwell, so I often have to wait if I'm not feeling up to walking to the bathroom. I admitted that this sometimes discourages me from drinking as much as I probably ought to.

At one point (I'm not sure when) she asked about hobbies- I said cuddling my dog :)

She then said she presumed I couldn't prepare a meal, I agreed, and she asked me for reasons why. (I think) I gave the following reasons: lack of mobility to get around the kitchen, difficulty lifting things, fatigue and pain, nausea being affected by cooking smells, and simply lacking the necessary energy (not sure whether I said anything else..).

She then asked about dealing with finances and bills. I said money automatically comes out of my account to pay for bills at Uni-home, but my flatmates have to remind me multiple times to tell them how much they owe me because I forget or don't have the energy or motivation to deal with it because of pain/fatigue/feeling unwell. She then asked about concentration/difficulty understanding. I said I'm absolutely fine with things like forms, but longer more complex things can be a challenge at times if I'm feeling very unwell.

That pretty much brought the questioning to an end, I think.

She then said that she would move onto the full-body physical assessment (because my problem isn't localised) but that it wouldn't count against me if I chose not to do anything, and was emphatic about the fact that I shouldn't do anything that increased my pain or discomfort, or would cause me difficulties due to fatigue.

She asked whether I was happy to go ahead with the physical assessment at all, again emphasising that it was my choice and she didn't want to cause me any harm, and I said that I would do what I can.

She said we'd start from the top and work down.

She asked me to move my head left to right, I did so, but explained that it caused some degree of pain in my neck at the extremes.
She then asked me to look up and down- no problems.
I was then asked to put my hands behind my head- definitely the most painful- I explained that lifting my arms was less of a problem than moving them backwards, and she asked where the pain was that it had caused (upper arms).
Next was grasping my hands behind my back- no problem.
I was then asked to raise my arms up in front of me and bend my hands up and down. I raised my arms very briefly but it was painful, I demonstrated that I could bend my wrists up and down without problems though.
I was asked to wiggle my fingers- easy.
Next she checked my grip strength and the strength of my grasp thumb to forefinger.
She then wondered whether to ask me to do anything with my legs, and decided to ask me to lock my knee out and bend my foot up and down- I tried the first leg but was fairly unsuccessful due to pain, probably partly due to the weight of my boots. I explained that this used to be one of my exercises which was stopped.
She then asked me whether my difficulties were due to pain or weakness or both- I confirmed both.

I was then asked whether I had any questions or anything to add, was told to keep DWP updated about any changes, and the assessor said she would refrain from giving a timescale for the result as it is unpredictable, said I've probably been waiting a long time already, and said to ring them up to hurry things along in a few weeks.

I thanked her, she opened the door for me to leave, made a comment about the fact I'd now be going home to crash after it all (wow, she understands!), and that was it! Assessment over! It wasn't too bad at all!

It's a weird experience in that you literally just discuss your limitations and what you can't do, so it ends up very skewed. In medical appointments, there's normally some advice which is positive, or you can discuss something that has improved/not worsened, whereas there's nothing to really make you feel better about things in the assessment. It didn't make me feel down- it was very matter of fact- I just felt very disabled!

I'm hoping I will get enhanced mobility as she didn't ask me to walk at all because she realised the impact it would have, but have no idea about care. Just a case of wait and see now!

I've been feeling very unwell recently, but I'm glad I went and got my PIP assessment out the way. I've got a couple of appointments in the next week, so will update about those when I can, and I'm trying (but struggling) to get post(s) together for ME awareness week which starts on Sunday, with international awareness day on Monday 12th May- I'll do what I can!

(Earlier post about disability benefits- benefit claimants are not scroungers: http://jesscfs.blogspot.com/2013/11/benefit-claimant-scrounger.html)


  1. Wow! That's exactly what I'm going thru in the United States with Social Security Disability. I applied in May 2013. They've turned me down and we're in first appeal. It could take two years. Hang in there. I enjoy reading your posts.

  2. Thanks for this, I'm in the Uk too and shall be making the first call for p.I.p on Monday.
    Very helpful, best wishes.

  3. Dear Jess,

    I've been looking at your blog because my 15-year-old daughter has ME too. It's really interesting and thoughtful, thank you.

    You've probably explored every possible "cure" for ME but I thought I would mention one which my daughter is trying and which really seems to be working for her. It is called the Perrin treatment and you can see details at http://www.theperrinclinic.com/. I was pretty sceptical but a friend's daughter got a lot better with it and we've been trying it since last July. It takes a bit of time to work and you can feel worse before you feel better (in fact that's a good sign, apparently), but our daughter is definitely improving.
    It's a mixture of massage and gentle osteopathy and is based on a theory about the lymph system. There is some research to back it up but not yet enough to convince the NHS. It is a pleasant treatment, quite relaxing and can even make you nod off! Anyway if you don't know about it it might worth investigating.
    Good luck to you with your PIP and generally and good luck to all ME sufferers out there!
    All the best,

  4. I've been applying for PIP recently too. I sent my written assessment off last month and am keeping my fingers crossed I won't have to wait so long for the face-to-face assessment as we are seriously struggling now financially... I had been wondering what the assessment might be like so it was really helpful to read this. Thanks for sharing your experience :)


  5. Please can I ask

    Was you granted PIP

    At what level

    How long after assessment?>

    Many Thanks

  6. I look after my g/f who has had ME for 3 years now. We only found out about PIP from a man who was clearing up some confusion in my ESA form about Jan 14.

    So we filled out the forms etc, not realising the was help online, just trying to be as honest as possible.
    We waited the required 6-8 months for an assessment (form went in Feb assessment was in October).
    The assessor seemed nice at first, but got more and more pushy as time went on, not allowing me to help Katie answer questions for give her support. Then suggesting answers for Katie and pressuring her to agree with comments like "surely you can do this cant you?" or "you can do this, yes? is that a maybe? I am going to put it down as a yes", we tried to point out it was a maybe as it depended on how she was on the day but got nowhere.
    Then during the "exercises" my other hlaf said she was in pain, then said the pain was getting a lot worse. Was told "only a few more" and her knee gave a massive crack. Then within 5 minutes the assessor had "finished" and we were out of there.
    Since then my other half cant walk on the knee at all.

    Now got a letter refusing PIP, looking through the report nothing we said seemed to have been taken into account, nothing we told the assessor seems to have been recorded. Only what the assessor suggested and what is happens on "a good day" which any ME sufferer knows are few and far between. So off we go into the appeals system, I kind of expected this to happen but to blatantly misrepresent what an ill person has said is scandulous!

    Sorry for the rant, but I think people here will be the only one who knows what this sort of dispair feels like when you see the person you lvoe struggling so much and for so long have been trying to financially get by just to be told "you score 0 points" aka F-off your fine....

    Sorry for the rant, but it just makes me so angry I want to scream

    A carer for another faceless ME sufferer let down by DWP

    1. unfortunately I think you are best going into it expecting to get turned downl, they try it on to get people to give up, but just keep fighting ,you will get there in the end, I did even if you have to go to tribunal, joining the benefits and work website useful, definately worth joining, I did and won only down to there advice of what to do ,being aware of what DWP are looking for, never dealing with the DWP by phone always by letter so you have paper proof write a complaint also about the medical I did and they were found to be negligent, never do anything at a medical that causes you pain or anything that you cannot safely repeatedly as this counts as not being able to do it at all as with your girlfriends knee she should not have been made to do this so report the nurse, keep your chin up and fight and get the justice she deserves

    2. I had mine few weeks back, the woman over spoke me, answered my questions, was clock watching the before we got to the important bit, how your illness affects you. i got up carefully from chair slowly twice as was in pain, used my inhaler approx 6 times as chest was getting tight due to severe anxiety. I SHOWED HER BETA BLOCKERS I HAD GOT FROM DOC, especially to get me through this interview. To cut a long story short, i should of got, middle to high care rate, i only got low rate mobility, which i was on before, for four years, and i was a lot worse. LOOKING AT THE FORM I GOT, AND THE POINTS SCORED, i was in a state of shock, the woman had lied, said she watched me when i got up, totallie, she had her head down typing, she sais i can interact face to face, excuse me what about the beta blockers i got to get me through interview, as normally i talk so fast no one can understand me, and i used my inhaler numerous times. She also said no one came with me, when they did, she put does not have help with meds when i do. I AM JUST SO UPSET ABOUT IT ALL, how can they do that and lie, like that, so that people with lots of illnesses, dont get what they are you, she was horrible. i never got asked how my pain affects me, nothing like that, she was in a hurry and when i tried to talk she just glared at me, and i didnt say anything then. Was not the experience i was expecting. I SUGGEST EVERY ONE TAKE some one with them, and record the assessment. The woman i had, should be sacked. IM GOING TO DO A RECONSIDERATION I HOPE. i phoned them a week ago, and no one phoned me back. I DONT WANT TO TALK TO THEM. I even sent a letter to them days after the interview, complaining about my unfair treatment, and though they knew this, if they bothered to read it, they still marked me down. When i left there i was limping, as she jurt my left knee, she knew this too, no mention of that. Dreading doing the reconsideration as my anxiety is so severe, this could be the death of me.

  7. Got my PIP assessment in the morning, your blog has been very helpful in my preparation I've written out 2 sides of A4 about the various ways my disability affects my life, feel quite shitty about myself but quite confident that I should qualify.Thank you for sharing you've been a great resource for my prep.

  8. At the moment I'm a year over due for a PSP assessment. I'm not sure I'll have one any more as I was awarded DLA for life some years ago. I'm just keeping quiet for now even though I've got significantly worse. I'm afraid to rock the boat. Thanks for your post though. We only tend to see negative ones so it's good to see a positive post. Cxx

  9. Hi, thank you for you informative post. Can I ask if you were granted PIP and if so, at what levels?

    1. Hi, yes- I was granted pip. I don't want to put the levels on here publicly, but you're welcome to drop me an email at Jess.cfs.blog@gmail.com and I will happily reply there :) if you're going through the process at the moment then good luck! I'm going through the reassessment process now (have the forms atm!)😬

    2. Hi Jess. How did you get on with the reassessment. My husband has had ME for 17+ yrs, and been through both DLA and PIP processes. He had his reassessment forms in dec 16 and we have just had a letter to go for a f2f assessment AGAIN! feeling pretty despondent because we were hoping after all this time he would have a paper based review.

    3. I found my reassessment a bit traumatic to be honest, and I was hoping to get a paper based review and had to have a face to face too.. I didn't get the award that the hospital/social care staff think I should have done, but I don't want to appeal and have my award downgraded further.. Its not a fun system to go through is it, but I hope your husband gets the award he deserves! Take care x

  10. I have had cfs for 7 years now I did get awarded pip for 2 year's then after 12 months was recalled for assessment and stripped of it, the most heart breaking thing was I was basically called a liar. As we all know it's not necessarilly an everyday illness, altho I'm tired everyday sometimes I can manage, I've been off work now for 5 week's cos I been bad sleeping for up to 17 hour's and in pain, I only work part time and just wanted a bit of help from the system as I've worked all my life, cfs is not taken seriously enough and therefore we have to suffer, hope other sufferers are successful

    1. I'm so sorry to hear of your experience- that's awful! My PIP was reduced last year even though I'd become more disabled, and the reasons given basically called me a liar too- they were ridiculous and upsetting.. I completely agree that CFS isn't understood enough, and it doesn't fit neatly in their boxes 😣 Maybe you should try applying again and hope you get a better assessor? The system is just not fair.. take care! x