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Slipping through the cracks

Jurph
Jurph Member Posts: 361 Pioneering
Sorry this is a bit long but I'm desperate for advice.

I've seen various medical professionals for the last 5 years. At the time, the appointments were for individual symptoms (rheumatologist for back problems, orthopaedics for wrist pain etc). A rheumatologist eventually diagnosed Fibromyalgia in October. As well as anxiety and depression diagnosed by my GP.

I now feel I'm being forgotten. I've been referred for CBT and physio for my ankle but that's it. My usual GP retired and it's now a 6 week wait for appointments!

Social services helped me by installing a grab rail in my bathroom. They were also going to help me with getting a shower put in so I can wash my hair by myself. However, as I live with my parents in a 3 bed housing association house - they claim it's 'under occupancy" and the housing wont put one in! My parents work full time and don't claim any benefits.

I've been turned down for PIP (with 0 points) which I am appealing. I'm struggling to get evidence to back up my claim though.

I *think* I've been awarded ESA support group. I haven't received a solid decision or the report I asked for but I had a letter telling me my ESA was going to increase from £73 to £125 so I guess I got it?

I don't claim anything else.

I feel I'm slipping through the gaps. I'm reliant on my parents for physical assistance and financial help but I'm scared I'm becoming a burden.

I'm starting to feel they'd be better off without me.
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Comments

  • whistles
    whistles Member Posts: 1,583 Disability Gamechanger
    Support group is £125 yes. Going up to £127 with the new financial year.
    As for falling through the cracks I haven't had outside input besides my gp for over ten years. I have a fluctuating condition.
    It doesn't necessarily mean you are falling through the cracks if they actually can't offer you anything, change anything. 

    If you are living with your parents then they might see that as you are already getting the help you say you need on the pip forms.
    Dare I say it I don't qualify for pip care, it's going to be the case for hundreds of people. Did you do the self test.
    Do not follow me, I don't know where I am going.
  • Jurph
    Jurph Member Posts: 361 Pioneering
    Yes. The self test suggested high rate for both.

    It seems my parents are expected to look after me for nothing and then pay my expenses for having a disability.

    I thought it was to help me be independent.

    Everything is taking so long that I'm suffering. I waited 4 months for physio, I've just started.

    I've been waiting 5 months so far for CBT. 

    The GP prescribes something for pain, but I have adverse reactions to many. I then take one tablet, have a reaction then have to wait 6 weeks to start the cycle over again.

    It's like I'm being punished for living with my parents (I'm nearly 30). If they kicked me out, I'd get all sorts of help!
  • [Deleted User]
    [Deleted User] Posts: 1,748 Listener
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  • Jurph
    Jurph Member Posts: 361 Pioneering
    edited March 2018
    Thanks @Victoriad . I spotted that while panicking about my appeal.

    I'm struggling medically and financially and it seems like a vicious cycle that I can't break.
  • whistles
    whistles Member Posts: 1,583 Disability Gamechanger
    When did you apply for pip. I wonder if it was before the condition must be present for three months? 

    I feel for you as I'm in warden supported. I was assessed to be living here, but I don't fit the criteria for pip. Probably support is already there.
    Have you looked into more independent living with adult services?
    Do not follow me, I don't know where I am going.
  • Nystagmite
    Nystagmite Member Posts: 603 Pioneering
    You probably wouldn't get much help if you lived alone. I don't get any help at all, despite being known to social services as an adult with a visual impairment and learning disability. (although, they claim the latter isn't true and it's "just anxiety")
  • whistles
    whistles Member Posts: 1,583 Disability Gamechanger
    Reading the above posts does make me appreciate I must be lucky to get the support I do.
    I hope it's not one of those location lotteries though. 
    Do not follow me, I don't know where I am going.
  • Jurph
    Jurph Member Posts: 361 Pioneering
    Just this January @whistles . I never considered PIP before. Once I received my diagnosis, I realised I wasn't going to get better anytime soon and asked for help.

    I have suffered for at least 5 years but it became significant about 2 years ago.
  • Jurph
    Jurph Member Posts: 361 Pioneering
    I'm sorry to hear that @Nystagmite. It seems we're all forgotten. 
  • whistles
    whistles Member Posts: 1,583 Disability Gamechanger
    Go for the MR if you haven't already. 
    Do not follow me, I don't know where I am going.
  • Jurph
    Jurph Member Posts: 361 Pioneering
    I have @whistles . I got 0 points for that too.

    I sent off my appeal forms on Monday but I'm already suffering. I have new symptoms of anxiety that have popped up. I'm sure it's down to stress. I've bever had them before.

    I wish I'd never applied.
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    You don’t need medical evidence to back up your claim. You need examples from your life of what has happened when you have tried to perform the specific activities in the PIP regulations.
  • Jurph
    Jurph Member Posts: 361 Pioneering
    edited March 2018
    I understand @mikehughescq . Unfortunately I'm lacking in that too.

    I haven't seen anyone other than my gp since my diagnosis (he's just retired, I haven't seen another yet). All I have is me complaining about somethimg then a professional saying there's nothing physically wrong with me.

    I've asked the social services OT for a letter but she claimed they don't do that.
  • [Deleted User]
    [Deleted User] Posts: 1,748 Listener
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  • whistles
    whistles Member Posts: 1,583 Disability Gamechanger
    The strange thing is @mikehughescq one of the reasons for deciding I didn't need prompting was because I had no medical evidence to back up my short term memory loss. I wasnt receiving outside help, wasn't on medication for it and didn't show signs in the interview. They noted I couldn't do the short term memory test.
    They dismissed that I can't remember or don't know what I'm doing. 
    I explained someone orders and collects the medication and what happens if that isn't done, they said that's not included with medication question and dismissed I need promoting to remember to take it. My carer sat there and told them all the above.
    It's obviously something very hard to prove I guess. 

    Do not follow me, I don't know where I am going.
  • [Deleted User]
    [Deleted User] Posts: 1,748 Listener
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  • Jurph
    Jurph Member Posts: 361 Pioneering
    Hi @Victoriad . That's what happened. My GP referred me to the occupational therapist of my council's social services. They installed handrails by my external doors (large steps) and in my bath. She's seen what I struggle with so I thought a letter from her would be good evidence.

    They also agreed to help with a shower. Just a head over our existing bath, not a wetroom. She saw how important a shower head would be to me. They then recommend what the housing should do.

    Unfortunately, it's the housing association that refused to install it.
  • Jurph
    Jurph Member Posts: 361 Pioneering
    It must be @whistles my 'cognitive function was normal' during the assessment. Therefore I don't need prompting to do anything.

    I 'looked well nourished' therefore I don't need prompting to eat.

    And then I 'showed good insight into my medications and illness', therefore my cognitive function was fine. Regardless of the lists in front of me the entire time. 
  • [Deleted User]
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  • Jurph
    Jurph Member Posts: 361 Pioneering
    @Victoriad I'm not sure of the exact reasoning.

    The official excuse is that our house is 'under occupancy'. It's my parents and me in a 3 bedroom. I guess it's because we have a spare room? But we don't claim housing benefit.

    It's such a struggle to have a bath that I avoid it. I only have one once a week when both parents are home just in case I fall or can't get out.

    But, I always need help to wash my hair. I can't hold my arms up long enough to wash it and have to lean over the bath which causes pain everywhere else.

    I only do that once a week at most too as it's embarrassing to ask mum to help and it hurts so much.

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