After getting no joy… or communication… or anything at all, actually… from the Health & Social Care Team that I’m supposed to be “under”, I sent a complaint in about them.
I mean, they really are ridiculous. And I’ve had to contact the Single Point of Access Team about getting yet another OT… The fourth one now. In just under 3 years. I told them the truth, and it’s not a nice one to tell or admit to. There is a lot of shame in having to tell a stranger, nothing but a voice over the phone, you have not had a shower in over 3 months in my own shower, and it was over 2 months before giving up to go to the Premier Inn to do it instead, having to be cleaned by your mother with wet wipes (like my 8 month old niece has to be!), and use dry shampoo to clean your hair.
To me, this also means I can’t dye my hair, I can’t take care of it, or myself. My parents had to spend hundreds of pounds for me to stay in Blackburn Premier Inn (one of the cheaper available options!) at short notice because I so couldn’t go on like that without washing my hair properly (it was a complete bird’s nest all tangled in itself at the top of my head that no one could brush anymore) – let alone being cleaned properly and getting some hot water on my suffering Fibro symptoms.
It’s humiliating. Degrading. Awful. Pathetic.
So much for that “Welfare Act”… What a joke.
(RE: Social Worker & OT)
Using Council Complaints Form:
I have been trying to get help and support for myself for over 2 years.
I’ve been given a social worker who has barely talked to me and is apparently not available to take my calls. No one has sat down with me to help with social care, care package, assistance or even explained how this whole system works. I really don’t know where else to turn to. And this system is designed apparently for my social worker to never see me or speak to me. I don’t even have proper contact details or a letter from them.
Also, I cannot get an OT to stay around long enough to actually do anything to help. They see me once then sign off my case. I’m on my 3rd now and I’m still not getting anywhere. I need my shower to be made accessible for me now I am completely immobile and unable to weight bear. I haven’t had a shower at home since I left Hospital on 8th March this year. I have to use wipes and spray on dry shampoo to clean up. I can’t use the bathroom upstairs, so must manage to struggle downstairs to the wet room, except the wet room doesn’t have the right equipment or wall grab bars for me to manage to use it. Therefore I cannot have a shower at home. I told the last OT that came to see me about it, but heard nothing. My father told me she had said to him she was “no longer dealing with me” – this is despite receiving zero correspondence from her to tell me this, not in writing nor even in a phone call. I’ve left a message today. Obviously I’ve had enough of chasing people now, so I no longer have any patience or hope to ever get anything done at this rate.
Both have been super-focused on getting me out of my house into special wheelchair-friendly accommodation. This is despite my trepidation on living along and being safe. I am anxious about being alone. I feel I am a danger to myself from living alone (longtime suicide, self harm, hyper-anxiety, severe social anxiety, inability to move at all during fibro-flareups, meltdown history), I have no assistance or input from psychology or physio to allow me to manage to physically manage around the house or learn how to manage things for myself now I am disabled. They haven’t been available to truly discuss any of the following or my real suitability to living alone, physically or mentally. They haven’t discussed care packages, their ideas, what I think, or anything because they’ve only seen me once, together, several months ago, and I have deteriorated a lot since then. They haven’t been back nor contacted me, except the one time to ask if I wanted to be put down for an apartment that became available.
Neither social worker or OT has listened to my requests for my home to be made useful and accessible to me. Because of this, nothing has been done in my home to allow me to move around freely or to even shower. I can barely make it to the bathroom and use the toilet upstairs. I must crawl, or drag myself, to the bathroom upstairs. I can’t clean my teeth in the sink. I can’t wash. I never go or stay downstairs. The only time I leave my room is if I need to leave the house.
Despite having explained to them in their one and only joint-meeting (which they didn’t execute very well, and they upset and confused me, leading to a near meltdown), they clearly didn’t listen to a single thing about me, my needs or what I wanted, either. They have been completely disinterested in helping me and focused only on trying to get me this imaginary new apartment. Disregarding the fact I had to live in my current home *now*, regardless of any pie-in-the-sky new place I might be offered.
I have ASD (Autism/Asperger Syndrome) and Fibromyalgia (amongst other things). I am a full-time wheelchair user, unable to feel or move anything below the sternum. Complications means I’m mobility-challenged, have great difficulty using my hands as they claw and don’t move well, and my fingertips are numb. I can only control my arms, shoulders and head. I’ve had no input from physio to help me with this. And the trauma of going through this has never been addressed. As of now, my elderly parents care for me 24/7 and daren’t leave me alone for more than a couple of hours, and are always available on the phone. They take it in turns to care for me. I stay in my room, almost never leave – for many reasons, including mobility restrictions and very bad health.
I am anxious and wondering when anyone is ever going to help me. I have been suffering for 5 years, and been in Wales for nearly 3. I’m still waiting for some proper care and assistance to actually live some kind of semblance of a life, and so far I have been let down at every turn. I would hope that perhaps in bringing this to your attention that this might change. I don’t hold my breath… but I hope.
The initial response was an almost automated (but personal) reply from them, and apparently someone is supposed to be in touch within 10 working days. That puts it at a maximum of 3rd July to get hold of me and discuss it.
Hopefully they’ll stop dicking about and get something done that is actually useful for a change…