Can't cope with fighting the care sys... - Fibromyalgia Acti...

Fibromyalgia Action UK

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Can't cope with fighting the care system

kettlejug profile image
11 Replies

I have autism, mental health,seizures and fibro.I have been having carers coming to my flat for several years. I had a crisis early this year resulting in increasing my home care hours to 37.5 from 20. It took several months to receive the extra hours, which were only given after a formal complaint. The council are refusing to backdate the hours. I have been waiting 18months for supported living with 24hr support. I have lost a placement due to hospital discharges jumping the queue. It takes a long time for a high enough provision to come up and I may be forced to leave the town I have always lived in.

Social services say mental health are responsible for crisis planning, mental health are not able to do that effectively without the care hours that the council isn't providing.

I am passed between services with no one taking responsibility. During g times of crisis I am extremely depressed and anxious which leads to self harm and suicidal feelings and attempts. I feel like they blame it all on me, despite the fact I am doing everything I can to get what I need to manage the next episode.

I don't know what else I can do?

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kettlejug profile image
kettlejug
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11 Replies
Africanmonkey profile image
Africanmonkey

Hi there Jettlejug,You are not the only one waiting for money to arrive. I have bad fybro but still help as a carer with my wife. We care for a man who is bed ridden 24 7 unless I get him out of bed for his exercise. But the council will not give him extra money for me so upto now he owes me nearly £20,000 but without me he would be stuck. He has had many carers but his attitude is not good and he orders everyone about, he is lucky to have us as nobody now wants to help him

Bananas5 profile image
Bananas5 in reply to Africanmonkey

are you eligible for carers allowance? Or attendance allowance he can claim?

x

Africanmonkey profile image
Africanmonkey in reply to Bananas5

The answer is no to your question. As it is taken off the funds he gets and the council keeps reducing his money every year instead of it going up.

Bananas5 profile image
Bananas5 in reply to Africanmonkey

I meant you claim carer's allowance. It is non means tested.

x

Africanmonkey profile image
Africanmonkey in reply to Bananas5

His social worker has said we would loose money out of the wages account but now you say this I will look into it thanks

CheetieCat profile image
CheetieCat in reply to Bananas5

Apologies for jumping in but are you sure? Always thought carers allowance was means tested if you earn a certain amount, and really not a lot.

Debsdelight72 profile image
Debsdelight72 in reply to CheetieCat

Correct/a/mondo puss, it was upto 120 squid when I started claiming for my Hubby,

Debsdelight72 profile image
Debsdelight72 in reply to Debsdelight72

I'm so sorry if my post is in/a/prop/iate(sorry spelling naf) I seem to be a little 🤔.. I don't know 🤭,Just sorry

CheetieCat profile image
CheetieCat in reply to Debsdelight72

Thought so, it's a pittance!🫤

Brigga profile image
Brigga

Sorry you’re going through this. It’s not fair. You need someone fighting your corner for you. Could you try contacting Citizens Advice, a disability charity or even your local councillor? Please have a look on line to see if there’s anything like this where you live. Sorry I couldn’t be more help x

Yassytina profile image
YassytinaFMA UK Volunteer

Hello, I am so sorry when I read your post, it is unfair people have too suffer and wait so long too get the right help and financial support, like another member has said can you speak too Citizens advice bureau ,just a thought, please don’t blame yourself take one day at a time , it’s the systems , back log of services trying too keep up, passing information from one department too another, have you caught up with your doctor lately ?it would be good too have a chat and explain how you feel right now and also ex-lain your current situation, please take care xx

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