How we cope with and without support can be very different. It 's easy to question whether you’re ill when you are doing better because you are getting support. The big question though is how would you do if that support was stripped away.
When things are running more smoothly with support it can be hard to admit or see that that wasn’t always the case.
I don’t see myself as that ill because things are better but the truth is I’m getting a lot of support that I didn’t get at my old address. My stepdaughter had pushed for me to move for years because of how she saw I was living when she visited.
Mental health professionals had said things like “Has limited ability to live independently in the community” and "“Struggles to take care of his needs adequately”
I’m doing pretty good since me and my girlfriend moved to our new place. She has been instrumental in helping me get better over the last 15 years we’ve been together. I worry a lot what will happen when she is gone.
I hardly ever cook due to a combination of low motivation and organising/preparation/planning difficulties. My cooking skills are very limited. I can’t cope with a lot of instructions in cooking anything. Then there is the issue of making a food plan and shopping for everything. I post the recipes for the benefit of others.
Hi @firemonkey Thats good to know that you are getting lot of support. Its not usually the case for me. I am on my own. I need to show to the world that i am a person who has good things to come from me.
I wasn’t coping very well before I had support services. My bungalow hadn’t been cleaned in years. I lived off noodles, I had acquaintances taking advantage of me financially. I had very poor daily living skills.
Social support is huge for illnesses like ours. My boyfriend pretty much exclusively takes care of the things I can’t do well, which means my showers are typically done by him, my cleaning around the house is done by him… without that, I would be living like a slob.
My stepdaughter does my cleaning.Where I lived previously she could only visit occasionally and basically I was living in a tip . Of course mental heath services hardly ever came to my flat too see the state of things. Once in 8 years because I was late for a depot. If you are not a danger to yourself or others or a substance abuser and are living independently albeit with difficulty then you are put at the back of the queue for support. Especially if you don’t have family nearby to fight your case. Now I’m here my stepdaughter comes to any meetings with social services people etc.
She is trying to get me 7 hours support a week but last I heard they are offering 2. The idea was to lift some of the weight off here to give her more quality time with me. 2 hours will be insufficient but better than nothing.
Even mental health professionals have quite a negative attitude toward social care support if you are mentally ill ie a rather dismissive “Well you are not physically disabled so you only need prompting with hygiene etc and help keeping your place clean” as though these are lesser problems than that of a physically disabled person. It all smacks of physical problems are more disabling than mental ones.
Then there is the probability I have dyspraxia and NVLD which affects my practical skills in terms of daily living. These of course have never been recognised by mental health professionals .
Yes, they often ignore certain markers of functioning. For me, they see my grades are good and call me high-functioning when I don’t quite feel that way at all.
I think its hard to receive social care funding in the U.K. if you have serious mental health problems like Schizophrenia, I think this because you don’t hear many people talking about if they have a personal care budget or support staff, you mostly hear about people with psychotic illness struggling with loneliness and being abandoned by CMHT’s because their time is time limited unless your on depot Clozapine. They are left to struggle alone. I’m with the Learning Disability which has a smaller number of services users and the care I receive is excellent. They don’t discharge you. I get 21 hours support a week plus access to 55 shard hours between 3 other people who live in the house with me. The people I live with have lesser support needs then mine, mostly emotional needs but they’ve got funding because of learning disabilities. I can see the contrast between services. I think CMHT’s have less money but have huge case leads whereas LD have smaller case loads and more money.
In terms of tailoring care to personal needs things like direct payments are theoretically a good idea. The problem though is the logistics involved which can be quite anxiety provoking and daunting. I think direct payments are easier the less ill you are especially in terms of having any cognitive NB organisational issues. It needs to be made easier for people to cope with.
I too am getting, and paying for, an awful lot of support that I wasn’t getting living in my house. I am doing so well now partially because of all of this support.