Woman with Asperger's in Leicester DESPERATELY seeking PA/peer advocate/peer support worker — Scope | Disability forum
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Woman with Asperger's in Leicester DESPERATELY seeking PA/peer advocate/peer support worker

Humandroid Community member Posts: 2 Listener
Yes, that would be me. I won't bore you with the details (I don't have the mental or physical energy for a long post, anyway), but I have been at the mercy of the MH and adult social 'care' system for almost 2 years (484 days in an ATU, then 229 where I am now).

Typing this is hard because I'm really not well. Due to the stress of the past 2 years, I have now developed both Addison's disease (autoimmune adrenal insufficiency) and Graves' disease (autoimmune hyperthyroidism), both currently undiagnosed, but I'm 100% textbook for both.

This is a care home for people with severe learning disabilities and complex needs. The unpredictability of the other residents, the noise and the staff (for whom just about everything seems to be too much trouble) in the 8 months I've been here means that the immediacy and urgency of my situation cannot be overstated.

Since I have been here the home has had THREE managers and more than 2 dozen support workers have left. The average age of staff and managers is UNDER 30

The previous manager, while she was young (25) was extremely intelligent, and she understood that, due to my adrenal problems, I needed a lot of salt. The current manager (26) well isn't (no qualifications, or experience, and her previous job was working on the checkouts in Asda) and is now denying me what I need (because salt is bad). Consequently, I'm deteriorating rapidly. Don't mean to be unkind, but I'm suffering, in large part, because I'm having to deal with people who aren't my intellectual equals.

This is what I URGENTLY require help with

✅Dealing with medical stuff (I have had paramedics out twice but, due to sensory overload and burnout, I'm unable to speak, and I have now been told, by the current manager, that any further requests for medical assistance will be denied as I’m just "wasting people's time for attention". I'm now terrified that the only way I'm getting out of here is in the back of a hearse. I wonder every night how long I have left before my body just gives up. Since this BS began, I've lost almost 6 stone (size 26 to size 2), and am terrified that this will leave me with PTSD so severe I won't survive. AND I NEED MY SALT! My sodium level is now so low that I can't eat much, because I just bring it back up, as sodium is vital for smooth muscle movement.

✅Dealing with my benefits. When I left the ATU, I was given a small, yellow, form which I was told to sign and give to the manager here. This, I was told would restart my PIP claim (I think it's unfair that a claim is closed when someone is hospitalised, their support needs don’t change). I did this on the day I arrived (unceremoniously dumped here - told to get in an ambulance in Aylesbury and ordered out here) but, due to how chaotic Heathcotes is, nothing was ever done, and my claim has now been closed. I am almost overdrawn and I am in no fit state to deal with the DWP.

(This is Heathcotes Group's website; it has around 20 homes in England, and claims to specialise in learning disabilities, ASCs, mental health issues (there's a woman here with paranoid schizophrenia) and complex needs. The page for the home where I am repeatedly describes Asperger's as a learning disability. https://www.heathcotes.net)

✅Dealing with staff. I'm sick of being spoken to like I'm a toddler. Sick of staff not doing what I ask, when I ask. Sick of staff losing and damaging my stuff (broken my phone and lost many of my clothes). Can't cope with them just barging in. 

I have been trying to find support the entire time I've been in here - phone calls go straight to voicemail and emails aren't responded to. Was told that LEAT Leicester would be the best people to help (https://www.leatleicester.org.uk/contact). No response to emails or phone calls in 8 months. 

Now DESPERATE for help, so posting here.

Anyone help (or know anyone who can)?


  • Tori_Scope
    Tori_Scope Scope Campaigns Posts: 12,488 Disability Gamechanger
    Hi @Humandroid :) Welcome to the community.

    I'm sorry to hear about the situation you're in at the moment, as it sounds as though there are quite a few different things going on for you. 

    I'm going to send you an email from [email protected], so please do keep an eye out for that. 
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  • chiarieds
    chiarieds Community member Posts: 15,902 Disability Gamechanger
    edited November 2021
    Hi @Humandroid - I'm very sorry to read about the difficulties you've been facing.
    Firstly, I think your medical concerns need unravelling, & I hope you're given access to a GP, as initially some simple blood tests may be able to ascertain your problems. Addison's disease, altho usually, is not always an autoimmune disorder. With it you can certainly crave salt, but this also occurs in different disorders, & a check of your blood pressure would also be worthwhile. Addison's isn't associated with hyperthyroidism (again, many with hyperthyroidism have Grave's disease, but not all); but rather the opposite, hypothyroidism.
    In the absence of any family or friends, if this is the case, I wonder if getting an advocate to speak up for you would help. Please see: https://www.nhs.uk/conditions/social-care-and-support-guide/help-from-social-services-and-charities/someone-to-speak-up-for-you-advocate/
    I'm not suggesting you can't speak for yourself, but rather with the situation you're in with the current manager, that this may prove both helpful & supportive.
    Secondly, about PIP, yes it does stop after 28 days if you go into hospital, etc, but your claim, as far as I'm aware, should have been paused, not stopped. Again I 'think' the decision to close your PIP claim can be challenged, but it wouldn't start again until you're discharged. However I'll ask @poppy123456 to have a look at your situation.
    I also hope Tori's email is helpful, & that you get the help that you need. We're all here hoping to support you.
    Edit: Have you had a letter from the DWP to say your PIP claim has been closed; if so, did it state why?
  • poppy123456
    poppy123456 Community member Posts: 52,444 Disability Gamechanger
    Whether your PIP daily living can be paid while in a care home will depend on who pays the fees. 
    When you were in hospital your PIP claim shouldn’t have closed completely.

    Going into a care home

    Disability benefits

    If you go into a care home, your disability benefits (AA, DLA or PIP) may either continue or stop, depending on who pays your fees.

    Your benefits will continue if you:

    • pay your own fees, or
    • have entered into a deferred payments arrangement with your council (where your care costs are covered and then claimed back later so you can delay selling your home)

    Your benefits will stop if:

    The mobility component of your PIP or DLA will continue if you're in a care home. But it stops if you're in a nursing home. 

    Do you claim any other benefits like ESA or Universal Credit? 

    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello and welcome to the community @Humandroid

    How are you getting on? I hope you had chance to read the above replies from other users and found them helpful :) 
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