Health and Disability · Invisible illnesses

Another assessment! ESA this time…

ESA is employment and support allowance which is basically long term sickness benefit and after 13 weeks on ESA you are meant to have a work capability assessment to see if you fit the criteria to stay on ESA or you have to claim job seekers allowance if you don’t. If you get enough points from you assessment you get put into either the work related activity group of ESA or the support group. The WRAG means that the job centre do some activities with you that can support you back into work, the support group means that you get left alone as you are seen to be too sick to do any activities related to work. The assessments can take up to 6 months to get done rather than the 13 weeks that they’re meant to be done at due to a backlog, a higher number to do than expected and the changeover for the contract from Atos to Maximus. Mine was done pretty close to the 13 weeks which is a good and bad thing. Being un assessed means that JCP can’t do anything with you until you have the assessment, no activities and no sanctions, but you also get slightly more money once you’ve been allocated to a group, but you can also get removed from ESA and have to either appeal or claim JSA which can be another nightmare, but it’s better to get it out of the way so you don’t have to worry about it…this whole thing is so complicated!! This is a loop hole which some people use to remain on benefits when they don’t meet the criteria as they swap over from one to another and give us real claimants a bad name!

I got my appointment letter to go to the Gosforth centre, but Durham is actually a bit easier for me so I rang up and asked for it to be changed, this took 2 calls as the first time they changed the date of the appointment, but not the location which was what I’d asked for. I got it sorted and my appointment was for 10.30am last Friday at the Durham centre. After worrying about it and then not having the energy to worry about it properly I made sure I was up early enough to get ready and get to the centre on time. I was actually pretty early and got there about 10am. Parking was only 3 spaces at the front of the building which used to be a driving test centre. I got a space, but have no idea where I would have parked if they’d been taken as its in the centre of Durham near one of the university buildings. I took my ID with me as requested, got my scooter out of the car and scooted up the ramp to the front door. 

As with the PIP assessment building they haven’t really thought about accessibility and I struggled to get through the doors, someone opened the next door for me and the security guard got the door that I had to buzz to get through to get into the waiting room which again was difficult to manoeuvre into and wait at a glass window for the receptionist. She asked me to sign a form, didn’t ask for my ID and I parked in the very small waiting area which already had 7 people in it and was very stuffy. There were 3 couples and 2 of us by ourselves. The other lone assessee was twitching and obviously anxious, he said his appointment was at 10am and he didn’t get called in until about 10.40 by which time he’d complained a bit but managed to stay calm and just wait. During this time I sat in 3 different chairs which were all as uncomfortable as the other, I asked one of the guys to switch on the fan to get some air into the room as I could breath properly and 3 more couples arrived. By 10.45 I couldn’t manage anymore and asked if they had any other chairs. I was in lots of pain by this time and trying to distract myself by reading online about ESA assessments and what they were looking for. I had planned on doing this earlier, but just hadn’t got round to it. I’ve been trying to stay positive recently so avoiding negative and depressing things! I read that they’re assessing you from the minute you walk/scoot into the building…this isn’t actually true as there were no cameras in the waiting room and the receptionist couldn’t see us as her window was facing the other way…they do start to assess you when the assessor comes to get you, so they can spot people moving easily with alleged “bad backs” and check that what you are saying matches how you’re moving and what help you get from the person with you which I think is a good thing as physios and nurses can often tell from how you move what’s physically wrong with you, and body language can also help to identify mental health problems.

They didn’t have any other chairs so I was moved into the room that the security guard sits in, it was much bigger and I got to sit in a desk chair which had arms and was adjustable, so much more comfortable for me, but the damage had already been done by the silly waiting room chairs. I had a nice chat with Trevor the security  guard who was lovely and escorted me to the loo to make sure I was alright getting there and back. At about 11am I was called into my assessment. It was just the next room so I left Edna the scooter with Trevor and walked/hobbled/slid along the wall into the next room and was faced with the same horrible waiting room chairs, so I asked for a different one. Leanne my assessor was lovely. She went and got the desk chair from the room next door, I also forgot my water so she went and got that for me as well and had a box of tissues ready for me, I explained that I’d cry at her! She’s a physio and introduced herself, her qualifications and what we were going to talk about which was great. The lady who did my PIP assessment didn’t do that (as far as I can remember) and it made me feel a bit more relaxed and that she got how hard this would be for me. 

Once I was settled she explained that she’d read my form (I didn’t have a copy which I should have done to remember what I’d written) and that we’d concentrate on mobility and how my fatigue affects me day to day. She asked me to describe a normal day, so I started at the beginning explaining that I have a routine that I set up with my occupational therapist and sleep specialist a year or two ago that I was seeing at the chronic fatigue clinic to help improve my sleep and help me manage my health, which it has done! I go to bed about the same time everyday and get up about the same time to create a routine for my body. My alarm goes at 8am and it takes me about half an hour to get moving and get out of bed, I then wash my face and brush my teeth while I’m getting my breakfast ready, getting my pills out of the fridge and feeding the cat so I’m multi tasking and saving energy so I’m not walking about too much. She asked if I shower and change my PJ’s and I laughed at her…showers are for really great days and PJ changing is for when I can smell them…I’d prefer to have the energy to get to the loo when I need to or make myself some food than have clean PJ’s on everyday! This is embarrassing stuff, but she nodded like she got it. There’s lots of typing going on and I was trying not to speak all the time while she was typing so I didn’t say anything that would go against me, or say something stupid then she’d think I was an idiot! She then asked how much I can do most days as I’d written on my forms that I go out most days. I explained that this was part of my routine as well and that going out was a huge thing to keep me physically moving, get some human interaction and stay positive. We discussed what I did and that it’s usually chatting over coffee or lunch or the cinema and then after that I’m wiped out and can’t do anything else. We discussed how just talking to people is draining, and that if friends and family come to see me I have to tell them to leave when I’m getting tired, or I have to cancel things or cut them short if I’m getting too worn out. I’m managing about 2-3 hours a day at the minute, but this isn’t everyday as sometimes I’m too tired and in too much pain to do anything at all, or my mobility is so bad that I can’t even get down the stairs in my flat. Then after my activity for the day I’ll be on the sofa, maybe have a nap, have some food and then it’s bed time, I used to aim for 9/9.30, but it’s more like anytime after 6.30pm at the minute as I’m just so wiped out. We had a laugh about watching TV and reading as I can watch the same thing or read the same book over and over again as I can’t concentrate on them properly, and my memory is so bad I just forget what’s happened. (That’s one reason I like doing reviews as it means I remember that I’ve watched something and if I enjoyed it or not!) my night time routine takes about an hour and a half as I have to leave an hour between some meds so again I multitask, sorting out the cat, taking pills, washing my face, doing my skincare routine and brushing my teeth (showers never happen at night as far too tired!) I read and listen to music to stop my head from spinning (I haven’t achieved anything today, I forgot to do whatever…I have to text whoever…I haven’t replied to that email…I’m so useless…) why do negative thoughts always come so full on at night? So I write in my happy book and try to drown out the voices in my head with music and a good book (nothing complicated or self improvement or I get confused or excited and can’t sleep) usually chick lit (nothing too romantic or that makes me feel lonely and miserable) or a good crime thriller. Then I can go to sleep, usually, but not if I’m in too much pain or too itchy so I wriggle around scratching and trying to get into a position that doesn’t hurt too much somewhere. This can take ages if my knee, ankle, hips, wrists, fingers or other body part are too sore that no position feels comfy so I smother myself in MSM gel, heat lotion and sometimes the heated blanket comes out, then I’ve got to stay awake until I’m not in as much pain to turn off the blanket as I’m too scared to sleep with it switched on. So after about 2 hours I might get to sleep. I generally sleep through the night but I know from my Fitbit  thing that it’s not deep sleep (deep sleep should apparently be 10% of your total sleep, mine is about 1%) this is cos of pain and itching so I wake up and haven’t had the refreshing sleep you need to recharge and feel better. So I wake up and it starts all over again.

We discussed housework… I’ve had a cleaner for a few years now as not being able to keep my house as clean as I wanted to was upsetting me and now there’s no way I could manage to do it, plus I’d much rather spend my energy doing fun things like going out, seeing someone, having a chat, reading a book or watching a film than cleaning the house! My cleaner changes my bed, does the ironing, hoovering, dusting, cleans the bathroom, the kitchen and the floors. Leanne asked how often that is and whatI do in between visits, do I dust? Hoover? Ha ha ha! Another friendly laugh as I explained that I do nothing! I’ve come to terms with my house only being as clean as I like it to be every other Monday when my fab cleaner comes round. I tidy up the cat litter and wash my dishes myself, this is getting less often than it used to be and this is all I do! This is humiliating to explain, and I don’t like people coming over as I’m embarrassed about my flat, my rug is filthy, the floors are covered in cat hair and I’ve got stuff everywhere because I keep everything out that I use regularly so I don’t waste too much energy putting things away and getting them out again!

Then we moved onto mobility, I got to the appointment myself, I drive to my doctors and hospital appointments by myself. I don’t have a person who does these kind of things with me, I manage by myself. I think this will go against me in terms of the criteria, but I’m not going to lie and make my life seem different to what it actually is. I am fiercely independent. I live by myself and yes it’s tough. It’s hard having to fill out every form without someone to help me, it’s isolating not having someone to talk to about how I’m feeling everyday (I know I have people to talk to, but you know it’s not the same as having a partner or living with people) I don’t have anyone to remind me to do things, help with finances, put out the rubbish or even make me a cup of tea occasionally. So I do everything myself and that takes a lot of energy and limits what I am able to do as I’m not sharing responsibility for things. She understood the challenges that this brings but I didn’t explain that I had to get an automatic car because the gears were causing too much pain. I forgot to say that having heated seats means I can drive a bit further than I used to be able to, but being in traffic is very painful as I’m moving my legs and arms more than if the roads are clearer. I forgot to say I only use petrol stations that have pay at the pump as walking into the station to pay can be too far most days and I forgot to say that some days I get into the car and realise I’m not focusing and am too sleepy to drive so I go back home and don’t do anything that day. This might have been helpful to say, but I forgot about it.

After about 45mins we’d gone through everything she wanted to ask and she asked if she could do the physical exam. She looked at me as I shrugged and said yes and she asked if it would cause more pain if she did it. Yes it would. I’d gone past the stage of feeling physically sick with pain when sitting in the waiting room, I’d taken extra pain killers and smothered the MSM gel on me, but she could see I was in lots of pain, so we didn’t do the examination. I don’t know if that’s a good or a bad thing in terms of the criteria, but I know I couldn’t do it. We discussed that my medications had changed recently, that I’ve been seen by the pain clinic and that they’ve diagnosed fibromyalgia, she took loads of notes as I explained my recent appointment, I probably should have taken the doctors letter but I didn’t think about anything like that. She typed everything up and said that we were done, she helped me get back to my scooter and gave me a hug which made me cry more than I was already! Trevor helped me out of the doors and made sure I got to my car ok. 

Another humiliating experience over. I just have to wait to hear how many points I’ve got, if I can stay on ESA and if so which group I’ll be in so I can figure out what’s going to happen next.

If you’re going through the same or a similar thing then my top tips for your assessments are:

1- Make sure your appointment time and venue suits you. Get it rearranged if you need a morning rather than an afternoon appointment, if like me you’re not good first thing then ring up and ask for a later slot. Get the venue changed if another location suits you better.

2- Take someone with you if you need moral support or someone to physically help you get to and from the appointment, get around the building or interact with the staff. 

3- Make notes of things that you want to get across to the assessor. Read through the criteria that you are being judged against and make sure you understand how to answer the questions honestly and explain how your health fits the things they’re looking for. 

4- Photocopy all forms that you fill out and send in so you can read through them beforehand to remind yourself and see if anything has changed since you completed them so you can explain this to the assessor.

5- Get there early, but not too early and ask for a different chair if you’re in pain. Ask to wait in a quieter room if you’re getting anxious, also ask for a drink if you need one and ask to not do the physical sections if you’re in too much pain. I struggled through my PIP physical crying as it was hurting so much when I should have said I couldn’t manage it and only didn’t do a couple of things. If you can’t ask for things yourself then make sure the person you’ve taken with you can do it for you.

6- Always explain what you can do on your worst day. Be brave and explain how tough things get. Drive through the humiliation and explain what you can’t do anymore. Make sure they know which aids you use, what other people do for you and what you just don’t do anymore because you can’t. 

7- If there is a mobility length then figure out what that looks like and feels like for you. Can you manage 20m? Where would that get you from your front door? Can you do it consistently? If not then explain how far you can go on your worst day.

8- With a variable condition they’ll need to know an average or whatever you are like for the majority of the time, so talk about what it’s usually like for you. If there is no usual then explain the worst it gets and explain how many days a week/month this happens. There will be a criteria for a % of the time that you are affected so check this out before hand, see if you fit it and make sure you can explain that you meet the %.

9- Forgive yourself! If you are anything like me then these things will really get you down. I hate having to fill out the forms because you have to explain how bad life is. The actual assessments mean that you have to tell a stranger how tough things are, what level of disability you have, what support aid’s  you use and what other people have to do for you. This sucks!! It brings everything to the front of your mind. You’re only focusing on the negative things and nothing positive and it has to be done!!

10- Try to relax until you get the decision and appeal if you disagree with what’s been said. I know this can be tough, exhausting and stressful but if you have been treated badly then you need to decide if the appeal is worth it.

My experiences of benefits have been both positive and negative and it’s so easy to focus on the negative. The buildings and facilities aren’t suitable, the criteria to get the benefit don’t fit everyone, the process is stressful, demeaning and humiliating, but I’ve been treated with respect by everyone I’ve spoken to and seen, I’ve met all the deadlines by doing a little bit at a time, I’ve asked for what I’ve needed during the assessments and I’ve been honest and vulnerable about my conditions and how I am affected. I’ve done my research and I’ve got through these horrid experiences with a little bit of dignity and hopefully writing these blogs will help other people going through similar things.

Claim what you qualify for and challenge where you have to. Be brave and if you can’t then ask for help. 

Good luck and let me know how it goes!

Vic xx

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