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Tatty1977 Member Posts: 6 Connected
edited June 2019 in PIP, DLA, and AA

I don’t know who to turn to, my question is complex but affecting my mental health. Plus l cannot phone anyone for support as DEAF since Meningitis young age. That along with physical disabilities means l had been on income support then that changed over to ESA not smoothly l was put in WRAG group but after attending WRAG they could see it was hopeless and l eventually was put on ESA.

My long term DLA: I was notified November 2017 DLA was coming to end in four weeks l had to get 33 page form and evidence back within 28 days it was a nightmare that has essentially destroyed my health physical and mentally further and stripped me of confidence (what little was left) then onto PIP, after long wait for face to face as they needed a palyntypist to interpret for me, it lasted 2.5 hours I was traumatised fatigued eye strain nauseous same repetitive questions already answered in forms only difficult as I am unable to pronounce certain medication or medical terms as I never hear them so had written them on forms as per consultants and help of Google as to what they meant for anyone not medically trained (much like myself) the DLA to PIP change started 2017 completed late 2018 yes months after as took while to get interpreter I do not sign BSL.  I then was downgraded from High care and High Mobility the local CAB said that I would not win a Mandatory revision but I really did not understand the descriptors and it physically hurt my brain to study one question at time and what words they needed in order they require but GP stated in new letter for MR that I cannot walk more than 10 metres and I spent almost the full 28 days every day alone writing for several hours or typing which was both painful and had a huge impact on my physical health. My GP did letter stating my limitation on mobility over 10 metres which turned it into continuing enhanced care and enhanced mobility.

This was same time my mobility car was due for renewal so it all clashed and after initial letter stating no enhanced mobility I had endless letters from motability about settling car amount send cheque for ridiculous amount or surrender car and at same time unknown to me the payments were not made so after I had mobility at enhanced rate reinstated I owed motability operations and had to make payment plan that took 10 months to clear

The same will happen in 2021 when the review will happen and I personally think it’s because DWP know I turn 66 in 2021 and trying to rob me of mobility/PIP I am fraught with anxiety since last year worried about the year 2021 as again it will be car lease up for renewal and another collision course

DWP change over forms assessment nearly drove me to suicide. I reach retirement age 66 in December 2021 and PIP will be reviewed same year which l believe is intentional to knock me off PIP so it's like a collision and since horrific trauma of PIP 9 months of hell anxiety food banks, l need to know more or try to understand what will happen in 2021. 

Nothing in local area Conservative controlled area no concessions at local leisure centre no disabled needs they even refused an Occupational Therapist report to install a shower for me after several falls. The local CAB are funded by the same council so I don’t hold out much hope for help. I tried as changing over from ESA to Pension 2021 how does that work I see on Google that I must apply for pension but if I do could it trigger ESA stopping I know I cannot have both but it would be good to know smooth transition from one to another.

l live alone and I’m terrified of the future. 

I am obsessing about 2021 as l turn 66 December 12th when everyone will be closing down towards Christmas. Local council has no disabled needs or advice centres plus l am in social housing Council and other support advice places online will not help unless you come under their borough. I feel like this is a tragedy waiting to happen and I’m wasting what time l may have left on earth in fear of change over as l realise l would not be entitled to ESA but how does pension activate and continued PIP as my car really is lifeline l cannot use phones so to make appointments medical health consultants l have to go in person to request reschedule and as l cant use public transport lm terrified of losing what little independence l have. I need to know how this it all works. 

I am so stressed out l cant eat focus concentrate l want citizens advice bureau to assist as no family helped before so I don’t expect any help now they never call or visit they will not cover or bridge gap between ESA ending and pension. I live from week to week best month November when annual water rates stop until following April and l then have water rates  to put towards heating for winter which l live in terror of, cold weather. It's so embarrassing to have nothing/nobody to catch you if you fall 

Anyone with any advice I would be grateful. Know it’s long (apologies)

Having been through this DLA-PIP journey so far if anyone wants any advise or help with PIP questions or anything if I know I will help in any way I can, feel free to message me and I am happy to help. 

Thank you for reading 




  • debsidoo
    debsidoo Member Posts: 325 Pioneering
    Hi @Tatty1977
    you say you are in Social Housing.Most Housing Associations have a designated officer to deal with benefits and welfare issues. Try and contact your landlord and see what provisions they have for vulnerable tenants such as yourself. They can also put you in touch with other organisations to try and arrange support. 
  • poppy123456
    poppy123456 Member Posts: 28,331 Disability Gamechanger

    4 months before you reach state pension age you should receive a letter asking you to claim it. Once you make the claim it will then start once you reach state pension age. There's many ways to claim it, including by post. The transition should be simple providing you claim it 4 months before so you shouldn't be without money.

    When the time comes you should get further advice about other benefits because you could be entitled to pension credit but this will depend on your circumstances at that time.

    Your ESA will automatically stop once you reach state pension age because it's a working age benefit.

    Your PIP will continue to be paid for as long as you remain entitled to it.
  • Tatty1977
    Tatty1977 Member Posts: 6 Connected
    debsidoo said:
    Hi @Tatty1977
    you say you are in Social Housing.Most Housing Associations have a designated officer to deal with benefits and welfare issues. Try and contact your landlord and see what provisions they have for vulnerable tenants such as yourself. They can also put you in touch with other organisations to try and arrange support. 
    Hi Debsidoo 
    Thanks for reply l am in social housing Council not housing association its council and local council are landlords and they have no welfare advisors no concessions at local leisure centre no special needs there is absolutely nothing available. As l mentioned occupational therapist sent council report to adapt bathroom 2016 its still not done. Not even agreed or plans in place. Taken me 3 years of emails back and forth citing health and safety and registered disabled to get them to "consider" later this month if l can have just shower cubicle fitted and bath removed. 
    I agree most councils do have support sadly not this one x 
  • poppy123456
    poppy123456 Member Posts: 28,331 Disability Gamechanger
    Try putting your postcode into this link it will tell you what's available in your area.

  • Tatty1977
    Tatty1977 Member Posts: 6 Connected
    Hi poppy123456

    Thank you for your reply it made lot of sense and l'm grateful you took the time to advise me 4 months before which would be August 2021. That sounds good. Also that you said PIP will continue if l'm entitled to it. Nobody  had told me l would get a letter inviting me to apply for pension, so that's a huge relief and if letter didn't arrive, l would apply in time frame you advise 4 months prior to retirement age.

    Would like to say in case nobody knew one of my reasons for panicky is when deaf hard to access information, help or "hear it on grapevine"

    When deaf and for all deaf with previous DLA awards way before PIP deaf had to go to high courts to fight to have sensory loss recognised as a disability. 
    Really appreciate your reply! 

  • poppy123456
    poppy123456 Member Posts: 28,331 Disability Gamechanger
    You're welcome. Hopefully it's help to set your mind at rest now that you know what to expect when the time comes. If you have any further questions please do ask and i'm sure someone will advise you.


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