Now URGENTLY looking for Asperger's-friendly solicitor (LEICESTER and environs) — Scope | Disability forum
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Now URGENTLY looking for Asperger's-friendly solicitor (LEICESTER and environs)

Humandroid Member Posts: 2 Listener
edited December 2021 in Autism and neurodiversity
Yes, me again. Starting new thread as my last is almost a month old. As I have now been in contact with just about everyone at Heathcotes in an attempt to improve my situation, and got nothing but weasel words and gaslighting in return, I feel I have no choice but to commence litigation. I have searched and come up dry - and, of course, I need legal aid. I did have someone at Irwin Mitchell, but I've not heard from her since the beginning of May, and she's no longer replying to my emails (nor is her paralegal).

Remember the lad who's always slamming his door? There is supposed to be at least one member of staff stationed outside his room 24/7 - there rarely is. They know how much it affects me, and yet still they do nothing. 

As I think I mentioned in my previous post, I strongly suspect I have developed both Addison's disease and Graves's disease due to the constant stress. I have told staff repeatedly that I am so burnt out that I am unable to hold a conversation, yet still all they will do is get a doctor here and expect me to be able to describe my symptoms, and then I have staff say "If you don't speak to them, they can't help you" - what the (and I'm really, REALLY trying not to swear here) **** AM I SUPPOSED TO DO...?! 

What part of "I am too burnt out to speak" is so difficult to understand...?! I have told them that this isn't going to change - except for the worse. I'm not going to suddenly miraculously recover (if I could I'd not need medical help). I am really shitting myself now as it took me developing tinnitus for them to stop other residents turning off their shower extractor fans and setting the alarm off - I'm terrified that it's going to take me either going into adrenal crisis or thyroid storm for them to take my physical health seriously. 

They are still holding meetings behind my back, without my knowledge or consent, people who don't have the first clue - and I need that to stop. They know full well I'm too ill to participate (and I'd not do so without legal representation, because my human rights are being flagrantly abused). I also still can't force them to get my benefits restored - and I need to challenge the closure of my PIP claim. 

Due to my being hyperthyroidic, I'm on edge 24/7; I can't sleep, I can't eat, because I now have almost permanent diarrhoea (and I keep being sick due to the suspected Addison's) so, obviously, I'm still losing weight. I'm extremely weak, I have fibromyalgia-type pain, literally everywhere, permanent headache, I need to pee constantly, and typing this is almost impossible due to the tremors in my hands.

Not to mention the brain fog, the constant fatigue and lethargy, the constant sensation of feeling like I'm going to black out - the global parasthesia - my entire body feel numb, muscle spasms, and the onset of Graves's opthalmopathy (which, if left untreated, will lead to me losing my sight). Oh and my abdomen which is so swollen and distended that sitting up isn't comfortable. I know I've also got some kind of bowel obstruction. 

There is something that helps (not much, but a little is better than nothing); I can't say what it is, because it's not strictly legal (no, not that, although if I could get that it would be even more beneficial. It is a plant, though). I buy it from someone in Austria, and, although he's very generous, he's not going to give me it for nothing. I last had a delivery back in July and, usually, I can make the amount I buy last at least 6 months but, due to the extreme stress I'm under, I'm almost out now. This is why I urgently need my benefits restored. The other thing I'm getting through ****-tonnes of is Nicorette Icy White 2mg gum (I'm addicted to NRT - how do I cure that...?!). 

When I say I could die in here, I'm not being hyperbolic, it is a very real reality. Hence the very VERY, urgent need for legal advice.


  • Tori_Scope
    Tori_Scope Posts: 7,032

    Scope community team

    Hi @Humandroid :) I'm really sorry to hear that your situation still hasn't improved. 

    Did you see the email that I sent you last month? Here's some of the information and questions I included in that email:

    Do you have any trusted friends or family outside of the residential care home that you can speak to about this?
    In terms of the way the staff have been treating you, have you followed the care home's complaints procedure? I appreciate that you've said you've contacted everyone you can- does this include a complaints department?
    You might find the Care Quality Commission (CQC)'s advice on complaining about a service or provider helpful. You can find that here on their website.  
    Regarding the concerns you have over your physical health and dietary requirements, are you still able to contact your GP at all? Or someone else in your medical team? 
    Do you still have a support worker, or someone within your local authority's social care team, who you could contact? It'd be good if they could be made aware of the way your care has been handled. 
    You mentioned last time being interested in getting an advocate, which I think could be a good pathway to follow. It does look as though LEAT have an advocacy service. Did they ever get back to you? The NHS website has a page on advocacy that you might find helpful, as there are other organisations that provide advocacy services who you might be able to contact.
    Regarding your benefits, the Turn2Us website has a page on claiming benefits when you live in a care home, which could be relevant to your situation. It can be difficult to navigate the benefits system, but there's help out there to support you in claiming the benefits you're entitled to. 
    Our helpline team also pointed you towards the following resources. Did you get a chance to have a chat with them?

    You may be able to get benefits advice from Citizens Advice Leicestershire or the Community Advice and Law Service (if Leicestershire) or search for benefits advisers on Turn2Us or Advicelocal

    If you feel you need an advocate, have a look at Someone to speak for you and advise you (if Leicestershire) or Advocacy Services (if Leicester).

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