PIP interview with Capita this week. (sorry, long post)

savykate

Hi everyone,
I'm having a major freak out and I'd be really grateful for your advice or input please.
I've been in serious denial for a long time about the severity of my health but I finally admitted defeat after being encouraged by my geneticist, physio and my husband to apply for PIP.
I sent off my form which took me about a week and a half to complete with my parents' input (they're both disabled), the disability rights' handbook and advice from friends who've been through the process. Within a week I got a date for my interview which is this week.
Long story short is that I was born with a condition called Hypermobility Ehlers Danlos Syndrome (EDS) which causes extreme pain, chronic fatigue, daily dislocations/partial dislocations and in my case mitral valve prolapse and rectal prolapse. The EDS led to the development of Postural Orthostatic Tachycardia Syndrome (POTS) which is basically a depletion of blood to my vital organs and means I can temporarily black out on standing, causes more chronic fatigue, nausea, IBS and other fun stuff. I also have Endometriosis which has likely spread into the bowel and I'm presently being treated with induced menopause (I'm 27 by the way!), I've already had a laparoscopy for it where they found the endo on my ovaries. Some days the pain is so bad that I have to literally crawl up the stairs or just stand and cry because I can't face going up or down.
I'm also claiming for anxiety and panic attacks which are made worse by travelling because of constant pain and needing to be near the loo, as well as depression which I'm now in therapy for because my thoughts turned suicidal. The anxiety, panic attacks and depression are because of the amount of pain that I'm in. I'm also now hypothyroid after having had thyroid cancer 4 years ago.
I have 11 specialists over 5 hospitals including a geneticist, POTS specialist, humanistic therapist, occupational therapist, physio etc....
What I'm worried about is the fact that I'm in part-time employment as a youth worker for a church and I'm terrified that the interviewer will want to know how it's possible for me to work when all this is happening and I can't even safely prepare dinner for myself, my husband has to help me because my wrists can dislocate so I can burn myself with pans/kettles and can't open tins. He sometimes has to brush my hair and help me get ready. The OT gave me a bath seat because I can't have a normal bath because the hot water effects the POTS and makes my blood pressure drop dangerously low. I've been known to fall over in the bath too.
The only way I've been able to stay in employment is because my employer/minister and management team have been so understanding. They pretty much work around me. I get the teenagers at work to set up the tables and anything heavy or to put things away for me, and my volunteer team help prepare snacks for the kids. When I go to assemblies at the local schools I rely on my husband to ferry me back and forth. I can do the assembly despite being in pain/running to the toilet beforehand but as soon as I get home I have to rest/sleep. My boss has told me that if at any time I want to drop my hours I can do but they want to help me remain working for as long as possible because they think I'm good at it.
I'm grateful for their support but I'm so afraid that because my illnesses aren't visible and that my employers are trying to help me stay in work that the interviewer will think that I'm a fraud. Just the idea of driving to the interview in Nottingham (about 40 mins) is making me freak out and feel ill.
Has anyone been in a similar position or had experience of Capita interviews at their office please?
Thanks for any help. x

mad_spaniel

Hi, First don't go alone. In case your mind goes blank, a colleague or partner can act as an" expert witness" and speak up for you. Second, it's likely the assessment will be done by a nurse/ physic or someone less qualified than a doctor . It's unlikely s/he has the range of experience to understand the effect of the conditions you refer to has on you. It may be worthwhile printing off something from the web. Or take along any copy letters you have. Although it's not the condition that counts , it's the effect of the condition on you, documentation as well as verbal testimony and list of medications etc are more likely to give credibility to your stated difficulties. Next try to get out of the habit of saying "sometimes." You need to show you have care/ mobility needs "more often than not/ on the balance of probabilities" Think carefully of instances over the last week or so you can use to highlight your difficulties.
THERE IS NO NEED FOR YOU TO TELL THEM OR FOR THEM TO KNOW YOU WORK. You're not committing a fraud by claiming if you genuinely can show you need help with getting out of bed/ washing/ dressing/ cooking/ going to loo or that you need supervision or assistance etc etc. When they ask can you get out of bed, don't just say yes, say "yes but only with difficulty because....and it takes me 2/ 3 however much longer than might normally be expected because of my tiredness/ pain/ dislocations/ feeling dizzy (whatever applies)" Your text above suggests you're already seem to have done a good job of explaining things on your form. If you are turned down, seek advice and ask for a mandatory reconsideration within a month of the decision letter.

savykate

Thanks so much. On the form I was sensible enough to put 'frequently', 'often', 'repetitively' and other words like that rather than 'sometimes'. I think I use it because I've been downplaying the situation for so long. You're absolutely right, I need to try not to use it though I am worried I may trip myself up.
My husband is going with me thankfully. Brain fog is a side effect of POTS so if I start spouting gibberish or not be able to talk at all then he can step in for me. Although I'm concerned that he may not be able to express the situation properly for me. I guess at the end of the day if you live inside your body, you're the person who knows what's wrong.
I may have trapped myself into a corner because on advice I wrote on the form 'I am only able to remain in employment due to support from my employer and management team.' because I was under the impression they needed to know. Guess I better get hoping and praying they don't pick up on that. Definitely kicking myself now.
I included about 15 hospital letters from different departments and my prescription list with the form. Will they have read these? I'll print off some info just in case on your advice. WebMD is always fun!

oldernotsowise

savykate
Interested to read your post as i am in pretty much the same position. Having been diagnosed with EDS 3/4 (geneticist cant determine!) Fibromyalgia and a whole host of other related issues i am simply too apprehensive to apply for help.
Half of me says stop being stupid you are really not well and you need to ask for help whilst the other half of me tells me to put up and shut up.
Have read so many posts on here about those who have applied and passed or failed makes me more unsure.
The Doctors attitude never helped- "dont be stupid man nobody has ever suffered from that in this surgery"! Took two more years of visits to 5 various consultants before i met my geneticist who was gobsmacked that my symptoms and condition had been ignored for so long.
From what i have read you can find on the net a guide to filling in the form in relation to the DWP descriptors that are marked. Even if your form is filled in you could take relevant bullet points to the meeting and present them at the outset i am sure.
Will be very keen to hear how you get on and what the experience is like.
I do wish you all the best and remember it is not your fault you have inherited a condition that cannot be cured but only endured by you.
Good luck

rogerblack

In order to be able to do a thing for PIP, you have to be able to do it safely, reliably, and in no more than twice the time that a normal person would take.

http://www.adviceguide.org.uk/england/benefits_e/benefits_sick_or_disabled_people_and_carers_ew/benefits_personal_independence_payment_e/benefits_the_pip_assessment_e/pip_activities_descriptors_and_points.htm

Contains the actual descriptors.
You are in principle allowed to work on DLA/PIP.
You need to explain why your working is not incompatible with your claimed abilities.

it seems on a rough glance at your conditions, that there should be enough points to easily get a fairly high rate of PIP.

mad_spaniel

I have a friend who works 25 hrs a week but because of her rapid cycling bipolar amongst other things. She gets the enhanced rate care and mobility of PIP. She got this without a medical and without her consultant being contacted. She claims working tax credit with the disability element and because she gets the enhanced rate of PIP also gets the severe disability element added in to give higher WTC award. So the Benefit system does acknowledge that there are people who work despite their illness(es) and it's ok to do so. If you are successful in your PIP claim, you may possibly be entitled to WTC for the first time or at an enhanced rate. There's not enough info about you/ your husbands circs to say here. There are plenty of Benefit entitlement checkers on the web

mad_spaniel

Forgot to say she's single so the 30 hour working rule doesn't apply

savykate

Thank you everyone for your help and support.


mad_spaniel, I'm part-time at 25 hours and my husband is full time at 37.5 hours but also acts as my carer, although isn't entitled to carer's allowance because of working full time, even though full time youth worker's salary doesn't pay much at all.
I've looked at WTC before but I didn't think I qualified because of our combined income. I'm assuming that's still the case if I received PIP? I was grateful that the form initially said you can claim 'whether you are in work or not' and isn't means tested because the whole point of applying for me if that I keep having to go on sick leave. Work is understanding but they won't pay me other than SSP for a job I'm not able to go in for but without my wages we can't pay the bills so it's a relief to know that still working won't necessarily be held against me.


Thank you rogerblack. I explained on my form that there's a lot of things I can't do safely. In the kitchen I have a perching stool from my OT because the chronic fatigue can make me collapse. I can't lift kettles/pans or drain them because I can dislocate joints. I often have to crawl up my stairs or stay up or downstairs because it's not worth the pain of going up and down. In the bathroom I need help to get out of the tub and I'm at constant risk of blacking out if I have a bath instead of just a wash (we don't have a shower and we rent). Everything takes me at least twice as long as a normal person and I need reassuring more often than not that I'm doing ok when I do attempt something in the home.
At work because I do youth work the activities we do are my choice, so I plan around my conditions. If there's active things that involve running/playing I give instructions/ act as a judge but don't participate, the teenagers I work with know I'm not well and are totally sweet and help me to set up/pack away and even tell me to sit down if they think I look like I'm in pain. When we do the deeper stuff that involves talking, I always sit down and they even fetch my chair for me. When I had severe chest pains once they even walked me home. Suddenly realising how lucky I am to have such great kids to work with!!! I work a literal 2 minute walk from my house and I'm under constant supervision from my management team who make sure I only do what I'm able to and who tell me off if I even think about lifting/cooking/taking on too much work. I've leant the art of job delegation so that my volunteer team do the things I feel I can't or am struggling to do and basically just manage them. So I'm hoping that by explaining that if it comes up that it should help me.
I used the descriptors to help me fill in my form and according to that I have over 20 points for daily and 12 for mobility but I'm sure the interviewer will debate that...


oldernotsowise, I'm so sorry to hear you're in a similar boat! I think invisible illnesses are terrifying because no-one can see what's wrong with you and you become so good at hiding it. In my case I'll see someone in a wheelchair and think 'Oh my gosh, they must be in a much worse place than me, they need more help. I don't deserve to get a disabled parking space' etc whereas in reality I probably should be in a wheelchair some days and I'm talking to my OT about elbow crutches this week and getting an OT team to come and assess my working environment.
Interestingly my rheumatologist told me that he think I have fibro too like yourself (my parents are both on DLA for fibro) but he said because so many specialists think it's in your head he didn't want to give me a diagnosis because people might write me off. I only found out I had EDS accidently when a physio said 'you're hypermobile' and I googled what that meant! I fought to be sent to the geneticist who diagnosed hypermobile EDS with additional vascular symptoms, she then sent me to the EDS diagnostic clinic in Sheffield. Have you been?? And then they sent me to the POTS clinic in Sheffield. If you haven't been to a diagnostic clinic I think they're only in Sheffield and London but it's worth getting that bit of paper that has a clear diagnosis if you can. We have to remember it's not in our heads, our pain is real, we've fought too long and now's the time to admit that we need help. Admitting you need help to yourself or others isn't weakness, it's true strength.

wild666

mad_spaniel wrote: »

Forgot to say she's single so the 30 hour working rule doesn't apply

16 hours is enough for someone classed as disabled to get WTC

savykate

oldernotsowise wrote: »

savykate
Interested to read your post as i am in pretty much the same position. Having been diagnosed with EDS 3/4 (geneticist cant determine!) Fibromyalgia and a whole host of other related issues i am simply too apprehensive to apply for help.
Half of me says stop being stupid you are really not well and you need to ask for help whilst the other half of me tells me to put up and shut up.
Have read so many posts on here about those who have applied and passed or failed makes me more unsure.
The Doctors attitude never helped- "dont be stupid man nobody has ever suffered from that in this surgery"! Took two more years of visits to 5 various consultants before i met my geneticist who was gobsmacked that my symptoms and condition had been ignored for so long.
From what i have read you can find on the net a guide to filling in the form in relation to the DWP descriptors that are marked. Even if your form is filled in you could take relevant bullet points to the meeting and present them at the outset i am sure.
Will be very keen to hear how you get on and what the experience is like.
I do wish you all the best and remember it is not your fault you have inherited a condition that cannot be cured but only endured by you.
Good luck

oldernotsowise, just to update you. I went for my assessment yesterday and was pleasantly surprised that my assessor seemed to have done his research and understand EDS and POTS. I was honest and because I have confirmed diagnoses from specialist diagnostic clinics I think that helped.
I ended up crying a lot from both the physical pain of being sat in the most uncomfortable chair in the world (which he then swapped for me before my spine decided to pop something out) and from the emotional aspects of it all (my claim is also for depression and anxiety as I think I said above).
It took an hour and a half but I think it was supposed to be an hour because a member of staff popped their head in and when I'd had the interview, been the loo and come out they'd all gone home and the lights were off.
There was a minor physical involved. I say minor but it hurt like heck, involving trying to touch toes whilst sat, crossing arms over to touch shoulders and gripping onto his fingers.
I got the feeling he was an occupational therapist but don't quote me.
I sobbed a lot when I left because as I was talking I'd realised what a mess I'm actually in and how much my life has changed. That people always tell me I'm unwell and that I've accepted it but not the extent of it due to being in denial for so long. I'm just glad my husband was with me. It was very emotionally draining but I think it was worth doing and I think I'll qualify for higher daily but I don't know about mobility despite being very limited.
But please do it, you sound like you need it too. I'll let you know when I get a decision.

rogerblack

savykate wrote: »

oldernotsowise, just to update you. I went for my assessment yesterday

As a general point, I would suggest, after a couple of days, calling PIP, and asking for a copy of the report.