Oh...where do I begin with this one?
Today was the fourth time I have met with 'my' social worker. First impressions weren't great and it has continued along the same vein since then.
As far as we were aware (because this is what she told us), she was 'going to panel' around ten days ago to try and agree a personal budget for my care. We didn't hear anything, so I emailed (three times in total) and still didn't hear anything. So my husband phoned and left a message.
Still nothing.
Under duress, my husband rang her again and got her. She then told us she had not been able to answer any of the questions at 'panel' because she realised she didn't know anything about me!
No shit!
On her previous visits all she had succeeded in doing was making me feel like a massive burden to my husband and children. She had left me upset and angry on each visit and to hear that she had taken so long to realise she hadn't asked me a single question confirmed my first impression was not far from the terrible truth.
Well, today was her last chance as far as I was concerned. I was prepared for her. I had read the care act, knew the outcomes that needed to be achieved or not in order to be eligible for social care help (I cannot achieve any of them without help). All the 'buzz words' had been written down and memorised. I was ready to argue my case. And boy did i need to!
She came in, seemed amazed and overjoyed at the fact I was being taken into the lounge today to speak to her, rather than in my bedroom (don't misunderstand here...I was literally being taken, wheeled on a mobility aid into the lounge).
Her first point was about me getting a power wheelchair. According to her wealth of knowledge about me and how my chronic illnesses affect my life, she had decided that with a power chair I would be able to go into the kitchen by myself in the mornings, before having medication (how I am meant to get into the power chair is a matter she didn't even consider), get myself breakfast consisting of cereal and a drink, consume said food in the kitchen and then go for a wash and getting dressed with a carer.
A few points I argued here:
1. I don't eat my breakfast in the kitchen, don't want to and would then be unable to carry my breakfast into my lounge or bedroom to eat.
2. There would need to be someone to help me wash and dress anyway, so why is it such a huge deal for them to bring my cereal and drink in to me like they do now?
3. On days when I am in too much pain to move, how would that work?
4. No, my husband cannot 'just take a few seconds to do my breakfast every morning' because he has three children with autism to get up and fed, with their different diets and needs, plus the dogs and himself. Sometimes I am not awake when he is doing their food, most of the time there is a huge rush to try and get them fed and ready for the day as it is.
It infuriates me that they see on paper that my husband is home and assume that means he can take care of everything for me all day. The whole point of me asking for a needs assessment in the first place was to take some pressure off Stu. I wanted him to be able to be my husband as oppose to my carer. I must have said this two or three times to her today.
If we were coping, and everything was ticking along here with no problems, then I would not have asked for a care needs assessment. Who would? I don't know any home educating family that would get social services involved unless they really needed to.
She carried on and wanted to know how I manage to home school three children if I am really so sick I am stuck in bed. So I told her that anyone who asked that question is ignorant about home education and needed to understand that it is not literally sitting children down at a desk and making them work through books. That stopped her on that route anyway!
She then moved on to the day when I go to a day centre. She told me that by going there, I am leaving my husband to carry out all the home educating on that day. And....?? So...??
I had to argue every point she came up with. More than once.
The day centre seems to be a real problem with her. I don't know why.
She said it is my choice to go there...yes, true, I did choose to go there...but the reasons i chose to go there were because
1. I was so depressed I was feeling suicidal and needed to do something about it
2. To meet people and not feel so isolated
3. To try out activities I hadn't been able to do for quite some time
4. To feel part of the community again
and overall it has been very successful. It is a place where I know I am safe, my husband and children know I am safe and they can all relax and enjoy a day without having to worry about me. The staff there have seen me getting more confident since I started.
She went on to do a carers assessment of my husband, in front of me, where she asked questions like 'do you ever feel like running away?' and 'don't you feel like shoving it all in a cupboard and forgetting about everything?'
She feels sorry for him with all the driving about he has to do for the children, so I pointed out that I used to do all that, plus look after him and the household.
Again, that shut her up.
I told her that he is not coping. Reiterated the whole purpose of her being here was to relieve some of the pressure on him so he could manage the other things in his life better.
There are many times where i wonder if I would be better off in a home with residential care. That way, everyone would know I am safe and not have to concern themselves with me, but my children are so important to me that I culdn't live without them like that.
She kept telling me ' but you're so young ' as if I don't know that myself. She wants to see me back in the kitchen (because all women belong in the kitchen presumably?!).
She was here for almost three hours today and at the end of it all said we probbly won't hear back until the new year!
Goodness only knows what the outcome will be when she doesn't understand me one bit. She was telling me how fibromyalgia and ME fluctuate and on some days i can do more than on others. I said my good days are the days when I can get out of bed, feed myself and get washed and dressed. Bad days I am stuck in bed. She didn't listen. So I asked her to tell me what she thought I could do on a good day? She admitted she didn't know, so my reply was...'Exactly!'
I will keep fighting this and pushing for the services I know I am eligible for, as I will with the children and their social worker. I wish I had someone who could take the fight on for me, ut in reality I don't. Such a waste of spoons.
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