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Apprehensive ahead of my girlfriend's F2F assessment

PIPnewbiePIPnewbie Member Posts: 279 Pioneering
Hi there,

I have to preface this with a short story to better explain the situation.

I met my girlfriend online back in August last year on a mental health group.  We were both going through it; I personally work full time as a duty manager in the retail/hospitality sector, but was having terrible panic attacks and anxiety last year that left me bed-bound.  I have since been made much better and been given a new lease on life thanks to 50mg of Sertraline daily. 

However, my life compared nothing to the hell my girlfriend described to me (without agenda or hope as I was just some stranger online, not a person who could help in any way), so believe what I'm about to describe is genuine, and I have witnessed it myself.

Long story short, we met in October last year after I travelled down from Wales to Devon to meet her.  It took a lot for her to do, as she lives with her grandparents and doesn't have friends outside of a few she kept in contact with from school on Facebook, as well as other Facebook friends she's met in groups.  We hit it off and I've since been travelling down on my weekends off and staying when on holiday from work,  for nearly a year.

Her grandparents support her with food, clothing, and a roof over her head, but they won't be around forever, and I plan to move there to support her in future, but PIP would be an amazing help, which I feel she's entitled to.

When the latest news broke a few months back about PIP being a disaster and how they had to review so many claims, how they had to change the definition on mobility because people were being illegally discriminated against, we decided to make a claim.

I won't go through every descriptor and what I feel, having read them and witnessed how she lives, she should be entitled to, but rather state her health conditions and how she lives with them.

She was diagnosed with aggressive Crohn's disease at 9 years old, and had to have four operations over as many years, leaving her with just 20% of her colon and 66% of her lower intestine.  She cannot eat a single meal without needing to go to the toilet immediately after, sometimes even during.

She often wakes having had an accident but is so exhausted and stiffened in her joints and back that her grandmother has to help her clean and shower, as well as change her sheets and clothing.

She cannot cook.  She struggles to stand for even 5 minutes as her lower back gives out, as well as her hands having burning, stabbing, aching pain just attempting to do anything repetitive for a few minutes like preparing food.  She's got tiny scars and burn marks on her hands from years of trying before giving up.  Even if she could do that, her toilet needs are so sudden and potent she has to stop what she's doing immediately and go, or soil herself again and again. So even if her back and limbs and hands were fine to work with, she'd have to abandon cooking right in the middle of it, which is as dangerous sounding a prospect as anything I've heard.

She has so much medication even I can't keep track of it all, and it numbers in the teens.  She has to use a TENS machine (which was given to her by her pain specialist AFTER we sent her application off - should we update them about this?) as well as use Humira injections weekly.  Both of which her grandmother or mother has to perform as she's too weak and in pain to do it.

She's very close to a fibromyalgia diagnosis, which her pain specialist has confirmed will probably take place in her next appointment with her, but sadly that is coming 4 weeks after her F2F.

She needs help getting into and out of the bath/shower where she will sit on the corner bath seat, as she cannot stand for long, she aches that much.  She can't wash her own hair because her arms will ache, have pins and needles, burning, and so forth before a minute of doing so is even up.  Another reason she cannot stand for long is when her torso is straightened out the adhesions in her stomach from where they performed multiple surgeries when she was  younger feel like they're tearing, which she's been assured isn't dangerous, but still doesn't take away that it's so painful and debilitating.

In the mornings she has to wait in bed an hour before even trying to get out of bed as she's as stiff as a board, and cannot even pull a nightie over her head as her arms are pretty much dead, and same goes for pulling up any jeans or lower body clothing.   Her grandmother (or myself when visiting) helps with this as well.

She needs pushing to eat because she knows the minute she has anything approximating a decent size meal, she will have to go through the exhausting, painful, and emotionally sapping experience of either soiling herself or having to rush to the toilet.  If she has to go to a hospital appointment or anywhere where she MUST attend such as this F2F consultation, she simply won't eat for 2 days and can't even be force-fed because she needs to feel completely empty inside so that there's no chance of toileting for her to go.  As you can imagine, this leaves her feeling even more weak and ill.

She needs social support to engage with anyone as she is 95% housebound, if not higher.  She has no inclination or energy to leave the home and has anxiety about meeting anyone who isn't a family member or the health professionals she's been dealing with all her life who are now like family themselves.  She can't look anyone strange in the eyes and stammers when trying to speak to any new reception staff at the hospital for instance.

In terms of communicating and reading, she is something approximating "normal" on those counts, though sometimes things have to be explained to her multiple times because her brain is so fogged up and in a confused state from her erratic sleep pattern, having eaten little, exhaustion, etc.

Her grandmother handles all her finances so she doesn't make any budgeting decisions.

If she has to travel anywhere new it would be utterly impossible without anyone.  She has a car that her grandparents upkeep, but she rarely drives it, and if so, only to her mother's or sister's who live within 3-5 miles, but even then she's always paranoid about the car breaking down and on edge until she pulls up outside their homes.  Because this PIP consultation centre is a new place, I am having to drive down to Devon straight from work to take her, as well as be support for her in the consultation.

In terms of her walking, I have taken her out a few times so she can see the outside world, but these are to secluded, rural areas where there isn't a lot of people, and where she can sit and just observe nature for once, but she cannot walk far, takes what seems like an age to get up because she is so stiff, and needs me to lean against for support when walking her, or anyone for support when walking around her house (she mostly lays on the sofa or in her bed at  home).

Other than that, she is just generally in terrible pain.  It's difficult watching a film because the noise her remaining digestive system makes is just loud, constant gurgling, like hunger sounds, but amplified by 10x, but they're painful, and she has to grip my hand so tightly during which I feel the bones in my hand are about to shatter. 

Aside from that, she has what she describes as pain worse than anything Crohn's and stomach related in her limbs, when they start to ache, feel ice cold, where even the softest material feels abrasive on her skin, and like the surface of her limbs and joints are in a vice as they feel they're being squeezed so tightly.  During these moments she can only pitifully breathe out a moan as a yes or no when talking to her. 

For her application, I spent every night after work writing and writing accounts of her issues on her behalf, most of which from what I've observed with my own eyes.  Her grandmother also sent down all her medical documents, appointment summaries, etc. from years gone by, which I photocopied at work and put in with her application.  I feel I am a good writer, so ensured I wrote her struggles in even greater detail than here, and with painstakingly intricate, visceral but factual detail.

She is the sweetest thing and I love her more than anything.  She is often upset and paranoid I will leave her for somebody "able" as she is too much stress, and because I am her only hope in life.  I've spent countless times repeatedly reassuring her that will never happen.  It breaks my heart what she goes through, and it really infuriates me as a taxpayer that they could refuse her with what she goes through, and makes me wonder why we have a safety net on society at all, and what exactly my taxes are paying for.

I will end it here, and apologise for writing so much.  I just wanted to include as much detail as possible so perhaps anyone willing to read here might be able to offer key advice that significantly helps, or maybe some have gone through very similar.

Thank you for taking the time to read.  Any advice would be massively appreciated, or even just taking the time to read and offer well wishes.  Many thanks.

Replies

  • CharliCharli Member Posts: 49 Connected
    You sound like a really caring boyfriend, she should really try to get a home visit as her disabilities seem to suggest she couldn’t make it to the centre without considerable distress, I found CAB invaluable in the help they gave me when dealing with my husbands pip claim, he couldn’t attend CAB so they dealt with me they  also spoke to atos and DWP on our behalf numerous times and it was thanks to them that we eventually got a paper assessment done, there are a lot more knowledgable people on this site than me and they give great advice, they’ve helped me a lot, I just wanted to answer as your girlfriends story really had an affect on me, please wish her well on my behalf 
  • PIPnewbiePIPnewbie Member Posts: 279 Pioneering
    Hi Charli, thank you so much for the reply.  That was really nice of you and your kind words are appreciated.

    What is CAB, if I may sound stupid a moment? lol 

    When they called for her F2F she stated nervously on the phone that it would be better if she could get a home assessment, but the woman on the phone coldly rebutted that her claim manager has stated she is able to leave the house so can only be assessed at a centre.
  • CharliCharli Member Posts: 49 Connected
    CAB - citizens advice bureau, my husband got his paper assessment due to severe mental health issues, we asked for a home visit they refused saying it was to dangerous to send their staff to our home my point was it was more dangerous to send him somewhere he didn’t know and that I wasn’t going to be held responsible if he flipped out which was less likely if they came to us anyway CAB helped fight our corner as they kept sending dates for f2f which he couldn’t attend, I sent extra info from his mental health workers could she possibly get a letters from her gp and specialists asap to send to them you can cancel one assessment but she’ll get another date so any extra info she can send might help, but it can be a drawn out process our case has been going on since February and we’re finally just waiting on a decision good luck but as I’ve said other people on this site are far more knowledgable than me an are an invaluable source of advice 
  • CharliCharli Member Posts: 49 Connected
    If you go to CAB they’ll talk to pip on your behalf our area has a benefits advisor in CAB and she had a wealth of knowledge and it seemed like a direct line to pip as when she rang them the call was answered almost immediately 
  • YadnadYadnad Posts: 2,856 Member
    PIPnewbie said:
    Hi there,

      I have since been made much better and been given a new lease on life thanks to 50mg of Sertraline daily. 
    I really wish that was all I needed to feel some part normal. I have to try to live on 150mg a day!
  • poppy123456poppy123456 Member Posts: 23,181 Disability Gamechanger
    The answer they often give to those asking for a home assessment is that if you can attend a GP appointment then you can attend a face 2 face assessment at one of their centres. Very often a GP letter is needed stating the reasons why she can't attend the assessment centre. Most people have face 2 face assessments as it's rare to have a paper based one.

    During the assessment unless you're her appointee then she will have to answer all the questions, explaining in as much detail as possible how her condition affects her. You maybe able to prompt her but that will totally depend on the assessment provider on the day.

    If she does cancel the assessment remember that you can only do this once. Good luck and hopefully she won't be waiting too long after the assessment for a decision. 
    Proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice I have given to members here on the community.
  • debsidoodebsidoo Member Posts: 327 Pioneering
    Hi @PIPnewbie
    just a thought but is there time to get a letter from your GP stating that due to incontinence she is unable to attend a centre for Face to face or is it too late.
       Debsidoo.x
  • Mumof2dsMumof2ds Member Posts: 148 Pioneering
    Hi. 

    ItsI unbelievable that they wontw do a home visit for assessment. Then surely they would see first hand your girlfriend's day to day living experience with her supportive grandparents. 

    You would like a lovely caring guy, who has supported and done, and continues to support your very poorly girlfriend. 

    I cannot offer advice, but wanted to wish you both luck with the assessment
    (wherever, and whenever  it eventually happens!) 

    Thinking of you both. 
    P X 
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • Mumof2dsMumof2ds Member Posts: 148 Pioneering
    Excuse typos and auto correct ( forever an issue on this phone!) P x
    Politeness costs nothing, but goes a long way in life. 
     Always look out for each other. Be kind. 
     Hugs and smiles mean the world. XX 
  • PIPnewbiePIPnewbie Member Posts: 279 Pioneering
    edited August 2018
    Charli said:
    CAB - citizens advice bureau, my husband got his paper assessment due to severe mental health issues, we asked for a home visit they refused saying it was to dangerous to send their staff to our home my point was it was more dangerous to send him somewhere he didn’t know and that I wasn’t going to be held responsible if he flipped out which was less likely if they came to us anyway CAB helped fight our corner as they kept sending dates for f2f which he couldn’t attend, I sent extra info from his mental health workers could she possibly get a letters from her gp and specialists asap to send to them you can cancel one assessment but she’ll get another date so any extra info she can send might help, but it can be a drawn out process our case has been going on since February and we’re finally just waiting on a decision good luck but as I’ve said other people on this site are far more knowledgable than me an are an invaluable source of advice 
    Thanks for recommending them.  I will definitely look to that route if we have to appeal.  As it is only 6 days away we have left it too late this time.

    Yadnad said:
    PIPnewbie said:
    Hi there,

      I have since been made much better and been given a new lease on life thanks to 50mg of Sertraline daily. 
    I really wish that was all I needed to feel some part normal. I have to try to live on 150mg a day!
    I've very sorry it has not worked out for you. Perhaps they could try you on a different medication?

    The answer they often give to those asking for a home assessment is that if you can attend a GP appointment then you can attend a face 2 face assessment at one of their centres. Very often a GP letter is needed stating the reasons why she can't attend the assessment centre. Most people have face 2 face assessments as it's rare to have a paper based one.

    During the assessment unless you're her appointee then she will have to answer all the questions, explaining in as much detail as possible how her condition affects her. You maybe able to prompt her but that will totally depend on the assessment provider on the day.

    If she does cancel the assessment remember that you can only do this once. Good luck and hopefully she won't be waiting too long after the assessment for a decision. 
    Thanks for the advice, Poppy.  I think it's probably too late at this point as it's nearing the end of Tuesday and the assessment is this coming Monday.

    And thanks for that advice, too.  That might have messed it up, but I've been on the phone to her trying to rehearse all the details.  It is difficult as she is tired and in pain, but what makes it easy is that they're genuine answers, it's just there is so much detail given the amount of issues she faces.

    debsidoo said:
    Hi @PIPnewbie
    just a thought but is there time to get a letter from your GP stating that due to incontinence she is unable to attend a centre for Face to face or is it too late.
       Debsidoo.x
    Hi Debsidoo, I think it is too late.  We are 6 days away sadly.  Hopefully it isn't an issue.

    I am worried how easily she agreed to go to F2F is going to raise a red flag with them.  She was scared on the phone and just went along with it in case she lost her claim.

    Mumof2ds said:
    Hi. 

    ItsI unbelievable that they wontw do a home visit for assessment. Then surely they would see first hand your girlfriend's day to day living experience with her supportive grandparents. 

    You would like a lovely caring guy, who has supported and done, and continues to support your very poorly girlfriend. 

    I cannot offer advice, but wanted to wish you both luck with the assessment
    (wherever, and whenever  it eventually happens!) 

    Thinking of you both. 
    P X 

     Thank you so much Mumof2ds, that's so nice of you to say.  I will update you all here how it went if you're interested.
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