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Slipping through the cracks

JurphJurph Member Posts: 346 Pioneering
edited April 2018 in Disabled people
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.

Replies

  • whistleswhistles Member Posts: 1,590 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.
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  • JurphJurph Member Posts: 346 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!
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  • JurphJurph Member Posts: 346 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.
  • whistleswhistles Member Posts: 1,590 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?
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  • NystagmiteNystagmite Member Posts: 609 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")
  • whistleswhistles Member Posts: 1,590 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. 
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  • JurphJurph Member Posts: 346 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.
  • JurphJurph Member Posts: 346 Pioneering
    I'm sorry to hear that @Nystagmite. It seems we're all forgotten. 
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Go for the MR if you haven't already. 
    Do not follow me, I don't know where I am going.
  • JurphJurph Member Posts: 346 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.
  • mikehughescqmikehughescq Member Posts: 5,987 Disability Gamechanger
    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.
  • JurphJurph Member Posts: 346 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.
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  • whistleswhistles Member Posts: 1,590 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. 

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  • JurphJurph Member Posts: 346 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.
  • JurphJurph Member Posts: 346 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. 
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  • JurphJurph Member Posts: 346 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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  • JurphJurph Member Posts: 346 Pioneering
    Exactly! @Victoriad I looked at them thoroughly when I sent in my MR. I knew what I should get.

    They basically said that my grip is fine, therefore I'm fine. I feel like they thought I was making it all up.

    I'm off to a tribunal for it so I need evidence.

    I don't think I have a care package. I've never had any paperwork from them. They turned up twice, discussed my needs and got the housing to install the rails.
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  • JurphJurph Member Posts: 346 Pioneering
    Thank you @Victoriad I get what you're saying. The CAB said something similar. I meet the descriptors to get both daily living and mobility at high rate. I won't be disappointed to get standard rate daily living.

    Because my illness fluctuates, they've only taken my best days into consideration and said the rest doesn't count.

    It was 0 points at assessment and 0 points after MR
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    That was it for me. They decided I had no memory problems so no points on anything where you said you have.
    A memory clinic report would be useful but you don't need to show evidence apparently.

    @Victoriad they decided I didn't need prompting to take meds or be supervised. So I scored a zero. I wouldn't be able to do it reliably.
    It does seem that a bad memory is not in their criteria.
    Interestingly I was partially awarded DLA care because of my short term memory, there  was actually a question specifically in regards to that type of thing. That's now removed and I wonder because it's a known side effect without clinic reports its a zero. 
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  • JurphJurph Member Posts: 346 Pioneering
    The whole thing is really affecting my health but I'm enraged by the injustice!
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  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Yes four for care, assessor gave me six though. 
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  • JurphJurph Member Posts: 346 Pioneering
    edited March 2018
    @Victoriad

    How can I apply for pip again if I've had it denied? I've only just sent off my grounds for appeal.
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  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I need 4. The dm dropped the assessors 2. 

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  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    @Jurph ive just joined this site so please bear with me. I was diagnosed yesterday by my gp with fibromyalgia after years of chronic pain and no diagnosis and pushing for referral to specialists with no joy as bloods were clear. Basically my gp just pushes meds. So I tried another gp and bingo! Any way your post resonates with me as I too have anxiety and depression and other health problems. I too have applied for pip for chronic pain and other health problems as I wasnt diagnosed with fibro. I got refused and zero points with the reasons being complete lies. Im at appeal. Im getting help from mental health charitable organisations with this as they suggested I apply. Otherwise I wouldnt do it due to past experience of Esa. Anyway have you tried self referring to your local charitable mental health service?  They usually provide help with applying for benefits as well as CBT. I self referred for CBT as my gp told me its quicker than nhs. I realise now years later I should have done both as I waited 2 years after that to ask for a referal to nhs mental health team. When you are applying for benefits I think it helps to be attending nhs or other services to get evidence to support your claim. That sounds cynical but its a hard world out there. I am now thinking about going back to these sources again for further help with anxiety and depression and CBT. I was advised to use citizens advice bureau or council benefits money advice team to help me with pip. So thry filled out the forms and deal with correspondence etc. Its making me less stressed about the process. I am not expecting an award but I must try. Now I have been diagnosed then maybe I can get more points. Im not sure. Have you tried your local cab or money advice team? Also benefits and welfare is a good website to look at with pointers on what to do. For me its just sinking in with the diagnosis but ive always thought it was fibro. I had a trauma 8 years ago which triggered my health issues and forced me to give up work. My body just rebelled against it. Its so hard to prove you have invisible ilnesses and its so unfair for us to be made to feel insignificant. Thsts why I am so grateful for the support I am getting now. I had to go get it though. Good luck and look me up if you want to chat.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    Anyone that has a flucuating condition ( and that is all of us ) should keep a diary so that an Average can be established. Whether you fluctuate daily, weekly or monthly, it is how you are affected for the majority of time.

    If you declare only your worst day, the HCP will delve around with questions and look for days that are better, then use this against you.

    If you only declare your best days and the HCP finds that you do have bad days , they will probably play them down in their report

    CR
    Be all you can be, make  every day count. Namaste
  • JurphJurph Member Posts: 346 Pioneering
    Thanks for taking the time to reply @debbiedo49

    It's comforting to know I'm not alone!

    My GP suggested the same about self referral. I referred myself early January. I'm on the list but it's another 3ish month wait.

    Like you, I've had it for years without explanation. I had a trauma and glandular fever around the same time so I suspect that was my trigger. I was only diagnosed in October.

    It's hard to find evidence to prove I struggle when all medical evidence shows no physical signs.

    The assessor dismissed mental health completely (she was a mental health nurse!)

    The CAB helped me with my appeal. They've been great but are very overstretched.

    ----------

    @CockneyRebel

    I was completely honest. I do keep a diary and tried to show it to the assessor - she said she didn't need to see it.

    I have bad days for pain a few days a week, and bad days for fatigue a few days a week. So bad that I'm house bound and can't do anything for myself.

    The DWP took this as having 'pain and fatigue 2 days a week' and therefore it's less than half the time and doesn't count. The merged symptoms into just one.

    The ignored my other days completely which I explained in detail.

    They implied I have 2 bad days then I'm the picture of health for the other 5!
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Victoriad said:
    Hello @whistles
    I would revisit the reason for the assessor giving you the 2 extra points and check against the descriptors so that if you missed this out in your application form for PiP, stick it all back on the form again.

    Usually from reading the posts on this forum it is the assessor that everyone is complaining about......

    I would have thought the assessor carried more weight in deciding the veracity of what you are stating on the application forms.


    I had a good one and he agreed with the forms in that instance.
    It will be looked at again at the review. I can't deal with the stress and the MR date has gone.
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  • CockneyRebelCockneyRebel Member Posts: 5,257 Disability Gamechanger
    HCP's and DM's often ignore a lot of evidence including diaries but tribunals will read everything.
    A tribunal looks at all the evidence available  to HCP and DM .If they find that it has been available at an early stage and it is relevant but not taken into consideration, they don't take kindly to it being ignored. If a good solid case has been presented it is wasting their time. There are some cases that the tribunal decides on the evidence before the formal hearing.

    CR
    Be all you can be, make  every day count. Namaste
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    Jurph said:
    Thanks for taking the time to reply @debbiedo49

    It's comforting to know I'm not alone!

    My GP suggested the same about self referral. I referred myself early January. I'm on the list but it's another 3ish month wait.

    Like you, I've had it for years without explanation. I had a trauma and glandular fever around the same time so I suspect that was my trigger. I was only diagnosed in October.

    It's hard to find evidence to prove I struggle when all medical evidence shows no physical signs.

    The assessor dismissed mental health completely (she was a mental health nurse!)

    The CAB helped me with my appeal. They've been great but are very overstretched.

    ----------

    @CockneyRebel

    I was completely honest. I do keep a diary and tried to show it to the assessor - she said she didn't need to see it.

    I have bad days for pain a few days a week, and bad days for fatigue a few days a week. So bad that I'm house bound and can't do anything for myself.

    The DWP took this as having 'pain and fatigue 2 days a week' and therefore it's less than half the time and doesn't count. The merged symptoms into just one.

    The ignored my other days completely which I explained in detail.

    They implied I have 2 bad days then I'm the picture of health for the other 5!
    Depending on how you look at things. 
    I could say if I had a standard good day based on the average person, I wouldn't be in warden supported housing in the first place. I am here because I don't function as the average standard person to start with.  :)

    Do not follow me, I don't know where I am going.
  • JurphJurph Member Posts: 346 Pioneering
    HCP's and DM's often ignore a lot of evidence including diaries but tribunals will read everything.
    A tribunal looks at all the evidence available  to HCP and DM .If they find that it has been available at an early stage and it is relevant but not taken into consideration, they don't take kindly to it being ignored. If a good solid case has been presented it is wasting their time. There are some cases that the tribunal decides on the evidence before the formal hearing.

    CR

    I hope so. Thank you for all your advice over the last week. I'm trying to get as much as possible together while I'm waiting for my bundle. Thanks to you, I know the process and won't have any surprises. 

    Hopefully I can get help with my anxiety while I'm waiting for the date.
  • JurphJurph Member Posts: 346 Pioneering
    whistles said:
    Depending on how you look at things. 
    I could say if I had a standard good day based on the average person, I wouldn't be in warden supported housing in the first place. I am here because I don't function as the average standard person to start with.  :)

    I think it's why these sites are so important. Anonymity makes it easy for us to talk to one another about our problems without the fear of being judged.

    I suspect I couldn't say what I posted here in person to anyone. It's great to be able to do.
  • whistleswhistles Member Posts: 1,590 Disability Gamechanger
    I agree with you. You can say anything and nobody judges because you they are in a similar position.

    Good luck on your appeal.
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  • JurphJurph Member Posts: 346 Pioneering
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