Taking control of my life

spud30

Hugs Ames, I'm so sorry you didnt get the outcome you were hoping for.

I'm glad to hear you have people on board to help you fight the decision......not sure how wise it would be to call on the ex though, so soon after the break up. Do it without his help if at all possible hun

dancingfairy

Not sure what type of voluntary work you do and whether it is connected with your current problems but do you know anyone who has been in a smilar situation or who runs a support group or anything who can advise on the right wording for the forms or has appealed a decision etc?
df

Ames

The voluntary work I do is sitting on a couple of local committees - my tenants and residents association, and one liaising with the council. There were more, but I've had to drop them lately, I was hoping that with help I could rejoin them.

I don't know of any support groups that I could go through, I'm waiting to see the ME clinic, they might be able to help. And maybe Mind could help too. I'll contact them as well once I've calmed down a bit.

dancingfairy

Do you know why your were turned down? I mean is your council desperately trying to cut the budget down and there isn't enough money? personailty thing - did you have someone who turns everyone down? It might help if you had any of that kind of background.
Hopefully your psychologists and psychiatrists will be able to lend you some support in this?
Anyway it sounds like you are doing really well in terms of recognising that things weren't working with the ex and by trying to sort things with your sister - 2 massive steps forward and one setback - just this hurdle to overcome now.
df

Ames

I've no idea of the circumstances why they turned me down. A few years ago I was assessed at needing 10 hours per week, my needs were the same but I was at uni, so 'needed' the help, it seems that if I'm not working or doing something that means I have to go out at fixed times then it doesn't matter if I get dressed, washed, eat etc. When I had to quit uni they removed the help straight away. In fact, it had never got put in place it took so long to sort out. What gets me most is that they said they wouldn't help me because it makes me more independent to do things myself! Surely independence is about living as normal a life as possible, not spending hours doing basic tasks and putting yourself in danger to do them.

I don't think the psychologist would be able to help, he didn't even know that ss don't provide help with housework! I'll see if he can help me, maybe by writing something to explain why I need my independence and to be able to get out and about, ditto the psychiatrist.

The SW even said that it didn't matter if I couldn't get to hospital appointments because they can be rescheduled! She obviously has no idea how the mental health system works.

Ames

I've spoken to sister and ex, they're both going to be away next week when she comes back. Sister says she'll write a letter giving her point of view about things. Ex says there's no point fighting if I don't meet their criteria, but I've been told nothing about criteria. I know other areas you have to have substantial or critical needs, but all I've been told is that I don't have needs because getting dressed etc isn't a need. I get the higher rate of both DLA components, so I can't see that I wont meet criteria if they just listened to what I'm saying.

Starting to work on a plan of action now, working out a list of people to write to - MP, GP, councillors, Mind, psychiatrist. I'm seeing the psychologist tomorrow so I can get his support then. Just need to decide whether to do one letter and copy it to all of them, or whether to do individual ones. I'd rather just do one so I don't have to keep track of who I've said what to.

GeorgeUK

Hope you can get them to see sense Ames.

Don't suppose the local paper would be able to help or support your case?
People are paying out money in taxes so that those in need can get help type of thing?

Ames

I did think about the paper, I'll try that as a last resort as it might make things awkward with the MP/Councillors (the councillors especially like to keep the journalists all to themselves!).

I've just emailed Mind, and I'll try contacting my NHS health trainer too.

Ames

Sent this email to the councillors, it's pretty much the same as the mind one with a bit of a political dig in it as well:

This morning I had an assessment by social services. I have ME and various mental health problems - past diagnoses include Bipolar and Borderline Personality Disorder, my current diagnosis is Cyclothymia, Affective and Anxiety symptoms. I have just split up with my partner and so am in need of care. The following is the social worker's responses to my physical problems. She said that I had developed adequate coping strategies and therefore didn't need help.

They wont help me shower/wash because I've developed a coping mechanism where I shower less than once a week and have to sleep for two hours afterwards and can't do much for two days afterwards.

They wont help me with food preparation/cooking because on a bad day I can microwave a meal, and on good days I can just about use ready prepared food. She didn't say anything about my regular burns from my hands shaking and twitching. Even though on a good day it takes me an hour and a half to 'prepare' a meal that's fine, and showing my independence. Nothing mentioned about my inability to do washing up, maybe I'm supposed to use dirty plates and pans. Also it's acceptable that I skip lunch on bad days because I spend so much time sleeping.

Don't need help with bringing the shopping in and putting it away because I can bring in one bag at a time with rests in between.

Don't need help dressing because on a bad day I can't go out anyway so there's no need to get dressed.

I explained that I wanted help so that my weeks were better - instead of one good day and six bad, if I had help with things they might be all average days, but it doesn't matter.

I really needed the help so that I could go to my meetings and things. I'm chair of the Little London Tenants and Residents Association and am on the CAG. Don't know what I'll do about it all now, I can't manage the meetings as things are now. But if I resign from everything and spend all my days in the flat then my mental health will deteriorate quickly and badly. Also, as I am unable to work, I feel that it is important for me to put something back into the community. The government are complaining about those who are sick and disabled spending all their time on the sofa watching daytime TV, and yet without help that is what I am expected to do.

The SW even said that it didn't matter if I couldn't get to hospital appointments because they can be rescheduled! She obviously has no idea how the mental health system works.

I feel that this will severely impact on my mental health. If I followed what the social worker said, I would be spending all of my time in the flat, which in the past has led to social phobia problems, and increases my mental instability, I have a history of taking overdoses which means I am only allowed weekly prescriptions. I need help collecting these, but the social worker didn't say anything about this. Also, I have just started a course of CBT, my second appointment is tomorrow. The attitude that I can miss appointments whenever I have a bad day would have a seriously detrimental affect on the impact and effectiveness of this therapy. As I have far more bad days than good, the chances of having to miss an appointment are high. I was also told that there was no point in offering help with encouragement to get dressed etc, as due to my physical health dressing wasn't necessary on bad days.

It is my feeling that 'independence' means the ability to live as normal a life as possible, with help to do so. However, the social services definition seems to be the ability to struggle to do the basics, regardless of pain and fatigue. I wish to live an independent life, as normal as possible, rather than a pain and danger filled existence.

As my partner only moved out a week ago, the 'coping strategies' were only meant to be short term until formal help could be put in place. I am only managing to do as much as I am because my ex partner is popping round to help out with a few things, but he is unwilling and unable to do this any longer.

I feel I need help with personal care and encouragement, and I'm very worried that this assessment will impact negatively on my mental health. Any help or advice you could give would be greatly appreciated.



Also copied it into the social services email, although that's a generic council questions one so wont hear anything for a while.

Ames

Ex has come round with chocolate cake and actoin movie, which is great. Although he has pointed out that there's some logic to the SS assessment - that technically I don't need to go out most days and therefore don't have care needs. I guess, as he says, it depends whether I'm fighting the system or an individual decision.

Apparantly my complaint has been forwarded to the right team in SS.