Desperate

[Mihaela]

I've just checked my earlier posts on this thread and saw that I got that phone call from CAB on 22nd October: "I had a call from CAB yesterday to say Creative Support will be contacting me soon. I'd never heard of them, but I hope they can help me. She said Adult Services had suggested trying them. Oh well.... I'll wait and see".

 

As I'd been waiting for some time I rang CS today. They had no record of the referral at all and told me to contact CAB! So I tried to chase up the CAB adviser to find out what was going on, but she wasn't there, so I'll have to try again on Monday. I feel as if I'm banging my against a wall.

Edited November 7, 2014 by Mihaela

[Mihaela]

I've just got through to that CAB adviser. She definitely referred me, and she's as mystified as I am. She's chasing it up, so it's more waiting ahead. Not a good start

[Sally44]

I would also ask the CAB to find out why Adult Services did not accept the referral. You are a vulnerable adult and should be accepted by Adult Services.

[Mihaela]

Thanks, Sally. I must remember to ask about this. I'll let you know what she says.

[Mihaela]

Hello everyone! Here's the atest update. It's been a very stressful two days. Yesterday my advocate came talking about money and solicitors etc. again. As usual very little sank in, and I'm just as confused as ever. He said there were certain things in the letter that would upset me - which didn't help - so I've not seen it and don't want to either. As I expected, they hadn't answered my simple questions. (The answers only needed to be single sentences or just yes or no). It would seem that instead they'd written 5 pages of mumbo-jumbo, a long-winded reply which meant very little. They 'unreservedly apologise' if I feel upset by the way they handled my mother's case. How can anyone apologise for another's feelings? They should be apologising for all the awful mistakes they made and promises they broke - which directly led to the trouble I'm still having with the council. They've not admitted to any mistakes at all, although long ago one of them said shortly before she left "I admit, I've been neglecting your case", but unfortunately I haven't got that admission in writing. I'm going to complain to the legal ombudsman about the way the solicitors have caused me so much stress and worry since 2012.

Today I walked the eight miles for my ADOS test, an ordeal in itself for I hate walking through busy, noisy towns. I don't know how I did in the test, but I broke down crying twice. There were a couple of things that confused me and got my head spinning until my brain just went blank - one was about a picture of flying pigs, and the other was about trying to make up a story about some things he'd taken out a bag. Is this familiar to anyone? He wrote a lot down and asked a lot more questions than last time, about friends, school, loneliness etc. He's now arranging for me to see a psychologist, I think mainly in connection with my executive dysfunction. So that means more waiting for me. :/ I walked back through very high winds, and a wheelie bin blew over right in front of me, only just missing me and dumping rubbish all over the pavement. I was very relieved to get back to my cats just before it got dark

[Sally44]

Sounds like a tough day. Hope you are feeling better this morning.

 

So you are being assessed for a diagnosis of being on the autistic spectrum? That should also help with any referral to Adult Services.

 

Has anyone come to see you yet about how you are managing day to day with money, food, bills etc?

 

If not can you contact CAB, and ask them why Adult Services did not accept the referral.

 

You could also go to your GP and tell them the difficulties you are having after your parents died. Tell them you are being assessed for autism and that CAB had tried to get Adult Services involved, but they refused and ask the GP to refer you again. If you can, write down all the things you are struggling with and how you are managing things currently. Give that to the GP and tell him you have been told [via an autism helpline forum] to ask for the GP to refer you to Adult Services again as you are a Vulnerable Adult that needs assessing and who needs help with all your daily living skills.

[Mihaela]

Thanks Sally. I'm feeling a lot better today, staying at home to recuperate!

 

Yes, I'm being assessed for a diagnosis of being on the autistic spectrum. I have to see a psychologist next.

 

Has anyone come to see you yet about how you are managing day to day with money, food, bills etc?

 

No. I phoned Choice Advocacy today about Adult Services, and I'm waiting to be rung back. I'll also be asking CAB about why they weren't interested and I'll ask her about that referral to Creative Support that went astray.

 

You could also go to your GP and tell them the difficulties you are having after your parents died. Tell them you are being assessed for autism and that CAB had tried to get Adult Services involved, but they refused and ask the GP to refer you again.

 

I saw my GP on Tuesday but she didn't mention the AS diagnosis. They do know about for my other GP there referred me. Also she knew I was having a bad time after that phone call to the council in August 2012. I told her I had no money (for I'd completely run out at that time) and she referred me to CAB, and they got me this advocate - who's probably visited me about 10 times by now.

 

If you can, write down all the things you are struggling with and how you are managing things currently.

 

I was going to do this anyway and send it to my psychiatrist.

Give that to the GP and tell him you have been told [via an autism helpline forum] to ask for the GP to refer you to Adult Services again as you are a Vulnerable Adult that needs assessing and who needs help with all your daily living skills.

Should I tell this to the psychologist when I see her?

[Sally44]

Yes I would tell everyone. It sounds like alot of people are involved, but no-one is making the connection.

 

If you write down the things you have posted on this forum such as:

 

Do you have water, heating, electricity - are you managing to pay bills?

How are you cooking, shopping and budgeting - you said something you spend a similar amount on your food as you do for the cat. That is not much food for a human. Give examples of what you are eating every day.

 

It is clear from your posts that in many ways you are very capable, and probably come across as that. And so professionals may think you don't need any help. So write it down.

[dotmarsdotcom]

thanks for the update Mihaela,

 

I'm shocked they are still using that "look at pictures of things" approach.

 

I thought using that test had gone out of practice along with using leaches and thinking radium was the cure all for everything?

 

I'm not aware of anyone having had to do that test recently? since it proves nothing about anything at all.

 

 

all it basically does it provoke one to go into a bit more detail about what is on one's minds,

 

& I think stuff like that is like asking people to make pictures out of clouds in the sky,

 

i.e. anyone can see any shape they want to in a cloud.

 

(ones response is just as lightly to be about something one has read recently, or saw in a film- as anything to do with one's real deep long term thoughts.)

 

it's far better to just ask someone, is there anything that has been on their their mind long term? than do the "ink blot" test.

 

re: your having to walk to your appointments,

 

I have heard most towns have a volunteer service? manned by very nice people, who in their spare time, don't mind giving people lifts to and from medical/ physiatrist appointments.

 

I know a lady, who calls them to help get her to counselling meetings. etc.

 

I'm not sure what she has to do to qualify for their help? but I get the impression they are pretty fair about it.

 

no one should have to walk eight miles in the wind and rain to things like that, when there are people available who are happy to help.

 

...and in case you feel nervous getting a lift from a stranger, I believe they are all crb/ criminal record checked. etc. she's told me sometimes she get's picked up in a proper hospital vehicle, so the service must be a valid official thing.

 

re: getting apologies for mistakes that have been made to you and your mum, in the past,

 

you might find that is never going to happen.

 

I imagine they are nervous about opening themselves up to legal exposure.

 

if you told them you'd sign an indemnity to never sue them about It, I bet you'd get a instant apology the very next day, with someone coming around to do it personally,

 

(& no doubt local press camera's having been summoned to record them having done so. lol)

 

I also think re: getting apologies for mistakes they have made,

 

manifests the aspect, that some of those organisations, being so large & with so many links in their chains,

 

have a situation where the person who deals with mistakes, is often quite junior in the scheme of things,

 

and with them not being in anyway connected with the matter at hand,

 

just think.. it wasn't me who did it, so "I ain't going to apologise."

 

also, I've noticed some large organisations are specifically structured in such a way- exactly so the people at the top who make all the bad mistakes, never have to confront the people they have affronted. it is designed to be that way.

 

..they employ junior people to do that, who are just told "make it go away, otherwise your fired."

 

I still wish you could have a trusted person from your life, to go along with you to your meetings/ appointments etc. if only to emotionally back up you and support you, if things turn out distressing.

 

re: wheely bins.

 

right pain aren't they. where I live always gets high winds,

 

so it's common place for those bin lids to open, & their contents spew out everywhere. I think I'm going to invent a new kind of council wheelie bin, which has a lockable flap on the top :-)

 

more probably someone already has, but the council won't buy them cause they are too expensive.

 

all the best.

Edited November 14, 2014 by dotmarsdotcom

[Mihaela]

It sounds like alot of people are involved, but no-one is making the connection.

 

True, and I feel I'm getting sent round in circles.

 

If you write down the things you have posted on this forum such as:

Do you have water, heating, electricity - are you managing to pay bills?

How are you cooking, shopping and budgeting - you said something you spend a similar amount on your food as you do for the cat. That is not much food for a human. Give examples of what you are eating every day.

 

I've been doing this, trying to get it right which isn't easy. There's such a lot than could be said about it, I don't know how detailed it should be. I keep editing and rewriting all the time to get it perfect. That's one of my big difficulties, being able to make decisions.

I'm cooking a little lately due to having to eat better, but it means spending more money on gas and food. I've no idea if I can afford to. As far as I know the money for bills comes straight out my bank apart from council tax, and the housing people are still working on that. I never open bills or bank statements - too stressful and confusing. My advocate or the housing people do that. I have no hot water at either house. This house is very cold and my fingertips are often white & numb, but I can't type with gloves on! I use a single bar electric fire. Drying washing is very difficult and takes days. The second bar burnt out ages ago, and then this one did too a few weeks ago, but I managed to repair it by twisting the ends of the wire together and it works fine! I've no idea where I'd buy another one, and I can't really afford it anyway for nearly all my money goes on council tax. Shopping is as haphazard as usual (due to panic attacks) but I manage. I've started to buy a few vegetables and fruit now. I can't cope with budgeting due to keeping track of all the figures. I get distracted by patterns in numbers, and I don't trust my calculations, etc. I don't have one cat, I have three - and now I spend maybe a couple of pounds more on my own food rather than on cat food.

 

It is clear from your posts that in many ways you are very capable, and probably come across as that. And so professionals may think you don't need any help. So write it down.

That's true, and the autism professional I've spoken to understand this completely. My capabilties are very noticeable to people, but they disguise the rest, and people assume I'm capable in ways that I'm not. Intellectually, my mind races ahead, but emotionally, socially and in everyday ways it's still like a 11-year old's. It's like expecting a 11yo to understand bills, tax, banking, owning houses, etc. Not fair at all.

Dotmars:

I'm shocked they are still using that "look at pictures of things" approach.

I actually enjoyed looking at that book. It was just when he asked to explain the flying pigs on the last page that got me upset.

 

The NHS still use leeches, especially in eye surgery. They breed them somewhere in Wales.

 

I'm not aware of anyone having had to do that test recently? since it proves nothing about anything at all.

 

I wouldn't know. I just go along with what they get me to do.

 

Anyone can see any shape they want to in a cloud.

Like the Rorschach test. I've always liked looking at clouds, but I don't often see faces in them.

 

I have heard most towns have a volunteer service? manned by very nice people, who in their spare time, don't mind giving people lifts to and from medical/ physiatrist appointments.

 

I'll try to find out about this. Thanks.

 

no one should have to walk eight miles in the wind and rain to things like that, when there are people available who are happy to help.

I'm used to it though. Done it all my life, although I don't enjoy it.

 

...and in case you feel nervous getting a lift from a stranger, I believe they are all crb/ criminal record checked. etc. she's told me sometimes she get's picked up in a proper hospital vehicle, so the service must be a valid official thing.

I don't put much faith in criminal checks myself. Since they were introduced they've not reduced crime at all. That's why they don't have them in Europe and there seems to be be more trust between strangers. Just because someone's been cleared doesn't mean that they won't try anything on, or haven't done so in the past - they just haven't been caught. It gives us all a false sense of security. In the end I suppose it just comes down to using our common sense and intuition - and hoping for the best! After I was attacked, I decided to avoid going out in the dark, and I always try to get back home before dark.

 

I imagine they are nervous about opening themselves up to legal exposure.

 

I'm sure they are! But at the very least, I expect them to give simple and clear answers to my simple and clear questions, and if they choose not to do so, to explain why - simply and clearly. Such as "because we don't want to admit to our incompetence"

 

also, I've noticed some large organisations are specifically structured in such a way- exactly so the people at the top who make all the bad mistakes, never have to confront the people they have affronted. it is designed to be that way.

I can well believe it! This is exactly how certain NTs behave. I've very little respect for the NT world and its many dubious habits.

 

I still wish you could have a trusted person from your life, to go along with you to your meetings/ appointments etc. if only to emotionally back up you and support you, if things turn out distressing.

If only. My mum would have done this even at 93! So would my dad, he even gave me lifts to the woods and picked me up, so that could avoid walking with noisy traffic. They protected me against the confusing, cruel NT world all my life.

 

I think I'm going to invent a new kind of council wheelie bin, which has a lockable flap on the top :-)

 

Good idea! It could make you rich.

 

more probably someone already has, but the council won't buy them cause they are too expensive.

oh...

Edited November 16, 2014 by Mihaela

[Sally44]

I think that you could just print out your questions and responses on this forum. You give alot of detail in them of what your difficulties are.

 

Making choices is another difficulty typical of an ASD or a specific learning difficulty or an anxiety disorder or executive function problems. I just wish you could get it sorted asap. It seems so basically flawed that the people that need help have to somehow identify that they need help and somehow navigate their way through the process of seeking help. If they could do that they probably wouldn't need the help in the first place!!

[Mihaela]

A good idea, Sally. I've written so much, many times over, about my weaknesses (and strengths) that it tires me out. It's as if my mind has become yet another special interest! I suppose I'm just trying to understand myself better, but when I obsess about getting it perfect I have others in mind - not me. I'm known to be pedantic when I write - I'm naturally a good speller, fussy about punctuation and all the accents must be included and correct. If I see an article with an apostrophe out of place or the wrong accent over a letter it irritates me, while most people either don't notice or don't bother. I take so long perfecting things that I find I get very little done! I wondered if this could be connected with executive dysfunction too.

I never thought of the difficulty in making choices, as I've always been like that. I suppose my parents made all the difficult choices for me. Sometimes I find myself facing a shelf in a supermarket in a kind of trance, just staring blankly, confused at all the choice. I don't even go to choose things for I always buy the same things and never leave with anything I hadn't intended to buy before entering, but I think the sheer 'overwhelmingness' of it all makes me just stand like that. When I realise I'm doing it I panic and move away quickly, and when it's really bad I almost run to the doors to escape. Choosing things like fruit and vegetables can be difficult too. A few examples - Fruit must have those stickers on for me to collect. I can only buy 7 mushrooms or sprouts at a time - no more, no less. If faced with a choice of potatoes all at the same price I must pick one of each. I pick unusual or deformed shaped carrots for I feel sorry for them and feel no-one would want them. Sharing coloured sweets is a nightmare for me. Everything has to be equal and balanced so that there are no odd ones left over, etc. If I spill lentils I have to pick up each one by hand. If I drop something (not often) and it breaks I scream, gather up all the pieces and spend ages gluing it together again even if it's unusable.

It seems so basically flawed that the people that need help have to somehow identify that they need help and somehow navigate their way through the process of seeking help. If they could do that they probably wouldn't need the help in the first place!!

Very true! I'll tell them what you said. Navigating my way is a bit like fumbling blindfold through a maze trusting to fate, for I don't really know what I'm doing or whether I'm doing it right. I only follow what others are paid to tell me to do, but it doesn't seem to lead anywhere.

 

[Mihaela]

After being told on Monday by my CAB adviser that Creative Support had lost the referral, but now had it, and would be contacting me soon, I rang them today - having heard nothing more. Yet again they said they'd never received anything or heard of me, so they said they'd ring the CAB again. This is becoming farcical! I'm tired and frustrated with all this waiting.

[Laddo]

Whoa, I've really fallen behind in all this! I'm absolutely appalled at how all this has turned out so far. It's sickening that the council and NHS can be so blasé about a vulnerable person struggling like this. I'm actually really angry on your behalf! I'm also very worried about the fact that you're having to walk 8 miles for your appointment. No one should have to do this, especially someone who isn't eating enough. Have you looked into online shopping? It might ease the stress of going to the supermarket a little, which in turn will help you to make decisions a bit better.

I really really want to do something to help you but I feel quite helpless being on the other side of the country.

Just had a thought: if the powers that be keep messing you about like this, maybe the members of this forum can collectively do something like create a petition to make the council and NHS actually start giving you some help?

I seriously hope David Cameron and all his cronies get infected with a horrific, incurable, humiliating and painful disease for all the vulnerable people they have failed like this. It all makes me want to go to the Tory headquarters and smash things up.

[Mihaela]

Thanks for being angry! I relieves my own anger a little, when anger can be spread around

But seriously, I'm not all that surprised for my experience with both the council and NHS over the past few years has been one of gross incompetence, arrogance, impoliteness, crass stupidity and flagrant discrimination. It's nothing new, but it's very frustrating. Friends say I'm very patient, but I have to be, for I've no choice.

 

I am eating more than I did, so I hope it's doing me good and fighting off anaemia, but the very fact that my health deteriorated was entirely due to worrying about how careful I must be over money, and having no support. I wouldn't walk to appointments if I knew I could afford the bus fare or knew how long I was going to live.

 

Have you looked into online shopping? It might ease the stress of going to the supermarket a little, which in turn will help you to make decisions a bit better.

 

My mother used to do this. It would make things much easier for me. When I walk back I take the longest route to avoid traffic noise, and often carrying a heavy bag in each hand (not pleasant up a steep hill in bad weather) I still have to endure some traffic, but when I cross a motorway footbridge I can't block my ears as my hand are full. Deliveries would stop all this, but until I know whether I can afford this luxury I can't really consider it. I'd also have to fathom out how to actually do it on the internet. When I did it with my mum I'd often get into a state when things went wrong. It was very much a joint effort.

I like your petition idea, it would really shake them up, but hopefully it won't come to that. When CS visit me (that's assuming they ever will), I'll show them this thread as evidence that others are concerned about the way I'm being treated.

Cameron and all his cronies live in a fantasy world. Even the words 'Tory headquarters' are enough to make feel queasy, but the idea of smashing them up does have a certain appeal...

Edited November 23, 2014 by Mihaela

[trekster]

I would write to your mp as the situation is beyond a joke now.

[Mihaela]

On Tuesday I tried chasing up CAB again. My usual advisor is away at least for this week, so they say they check her desk for any clues. They rang me back later that afternoon saying that the repeat referral did arrive at Creative Support and they'd be ringing me soon. If they don't contact me by tomorrow I've to ring CAB again on Monday. So far I've heard nothing.

Yesterday I attended the Autism Working Group which is connected with the council. Apparently Adult Services don't provide support and it's palmed off onto CS. Everyone there had already heard of CS and seemed to know all about them. All our grievances were passed onto the council and the NHS Clinical Commissioning group - who were also there. It was generally thought that CS weren't 'fit for purpose', and nobody appears to be overseeing them - although the council pay them. It sounds chaotic. So frustrating for everyone. That day wore thoroughly me out.

As for writing to my MP, that's yet more stress for me and I'm afraid I have little faith in politicians. It would have to be a last resort, and I'd need help.

[Laddo]

This is getting absolutely absurd now. It seems like they're just sending you from department to department as they so often do. Seriously, what has happened to work ethics in this country! All everyone seems to do is palm off work onto other people which results in disasters like this one.

 

I wish there was something I could do to help you, Mihaela. If there is anything I can do, please don't hesitate to let me know.

[Mihaela]

I forgot to post the latest news. having heard nothing last week I rang CS on the Friday and was told that the relevant person was 'at a meeting'. They gave me a mobile number and told me to ring on the Monday (yesterday). This was unexpected, and foolishly I didn't ask for her to ring me back after the meeting.

Anyway, I rang that number yesterday, and she asked who my support worker was - I haven't got one, which is the whole point!. She'd no idea who I was, and was totally unaware of the referral, but said she may not have seen it yet. I assured her that the CAB had now sent the referral to them twice and spoken to them too. She said she'd check and would ring me within a week or so. She sounded friendly enough, but all this vagueness is getting a bit much. So I'm still waiting. As for an actual visit, that still seems a distant glimmer on the horizon at present.

Thanks, Laddo. I'll bear your offer in mind. Giving them a nudge from another direction might be necessary. Let's see what the next week brings...

Edited December 2, 2014 by Mihaela

[Waterboatman]

Mihaela, like myself you are complicated, too complicated for the basic support system.

 

I am now, ("Support Group", ESA), and yet as I do fit the basic model, problems, falling between supported models. So confused operators struggle or discard silently.

 

No point making load noises about this, its a basic human failing.

Give them a bit of space and try again, gently, like talking to a child.

 

If you know that, you can not this, PM me and I will do this for you. I am switching my PM on.

[Laddo]

I forgot to post the latest news. having heard nothing last week I rang CS on the Friday and was told that the relevant person was 'at a meeting'. They gave me a mobile number and told me to ring on the Monday (yesterday). This was unexpected, and foolishly I didn't ask for her to ring me back after the meeting.

 

Anyway, I rang that number yesterday, and she asked who my support worker was - I haven't got one, which is the whole point!. She'd no idea who I was, and was totally unaware of the referral, but said she may not have seen it yet. I assured her that the CAB had now sent the referral to them twice and spoken to them too. She said she'd check and would ring me within a week or so. She sounded friendly enough, but all this vagueness is getting a bit much. So I'm still waiting. As for an actual visit, that still seems a distant glimmer on the horizon at present.

 

Thanks, Laddo. I'll bear your offer in mind. Giving them a nudge from another direction might be necessary. Let's see what the next week brings...

 

There must be a way to hurry Creative Support up. I'll do some snooping around the internet and report back later.

 

I've just had a look at CS's website and it seems they're making some bold claims about their company:

 

"The services that we deliver to people with autism are designed around individual needs. For this reason no two services look the same and we are proud of the way we have been able to tailor support packages and the living environment around the specific requirements of our service users (and their families)."

 

Lolz. I wonder who wrote this self-congratulatory rubbish? And I wonder what they had taken before writing it to experience such otherworldly hallucinations?

Edited December 2, 2014 by Laddo

[Mihaela]

It seems that all these outfits, big charities, quangos, government agencies, police forces, NHS, local authorities, etc. speak the same self congratulatory language nowadays. I could give examples of many others where they fail to live up to their words. It must be a new trend. (Some even use PR companies to write their scripts. Bell Pottinger aren't fussy about their clients - be they Tony Bliar or the Uzbekistani government - as long as the money rolls in).

All I can say so far about CS is that, although their blurb looks good, they haven't yet given me the chance of finding out how good it actually is.

Edited December 3, 2014 by Mihaela

[Mihaela]

I've heard nothing from CS, so I'll be phoning my CAB adviser yet again today.

 

I've also received an 'appointment reminder' to see a psychologist along with my psychiatrist on 8th January. Unfortunately I'm already committed myself to the Autism Working Group meeting on the day before - 60 miles away. If I had a car it would be easy, but that journey takes me 5 hours, and then I'd have a walk hoame with 3 cats, and then 4 miles out to the hospital and back - Impossible, so I've asked for another appointment and to inform me quickly. They claim they sent an earlier appointment letter, but I never got it. So the waiting game continues.

 

I'm meeting my solicitors today with my advocate, to try and sort out the mess they put me into after my mother's death. 80% of what she left me has now gone, largely on their extortionate fees. Fees they received for making serious mistakes, such as not paying the bills that I took round to them for months!

[Waterboatman]

Mihaela solicitors are expensive and should be used sparingly, for legal work only.

Paying your bills is not something you should have asked them to do.

Your medical appointments are harder to get and more important than going to an 'Autism Working Group'.

It is already too late to solve what has already been done, your solicitors will happily charge you until you have nothing left. That is how they are.

Granted when you have nothing left and are on the point of becoming homeless, the 'state' system will become interested, just try to make sure you run out just after 'April'. At the moment councils are very low on funds.

 

You really are a desperate person, getting further into a desperate mess, it hurts to know there is nothing I can do to help you.

[Laddo]

Waterboatman is right Mihaela, the medical appointments should take priority over the Autism Working Group as it is getting more and more difficult for anyone to get medical appointments these days. The NHS is breathing its last breath and will likely be gone in the next few years, so you need to take advantage of it as much as possible while it's still there.

Your solicitors also do only have one thing in mind - profit. They don't care about their clients. They will deliberately take as long as possible to extract as much money out of you as possible. I would just stop using them to be honest as they're not doing anything and keep messing you about.

I'm still thinking about what we talked about yesterday and if there are any ways I can help you. I'm thinking of you all the time.

Take care x

[Mihaela]

Mihaela solicitors are expensive and should be used sparingly, for legal work only.

 

True, and I've learnt the hard way. The current dealings with them are costing me no money, but much stress.

 

Paying your bills is not something you should have asked them to do.

 

You don't understand. How could I have paid any bills without money? I survived for 4 months on less than 300 pounds! I never asked them to pay bills - my mother instructed them in a letter (the day before she died) to pay all bills, make sure I had money to live off and that I had a bank account. They didn't carry this out. That's what's caused all this mess in the first place. I never knew nothing was being done about paying bills until I got those summonses from the council. When I first met them, a couple of days after my mother's death, they told me to deliver any bills and assured me that THEY would pay them.

 

Your medical appointments are harder to get and more important than going to an 'Autism Working Group'.

The purpose of my involvent in that group is to make them aware of how the council have treated me. It's a group working to change the council's abyssmal record and is important. Representatives from Adult Services will be present. Besides, I'd promised to attend and at that time I knew nothing of any medical appointment. I wasn't told. I don't like letting people down. If I make a promise I strive to keep it.

 

It is already too late to solve what has already been done, your solicitors will happily charge you until you have nothing left. That is how they are.

 

They're not doing this, and have said so, because I've made a complaint against them.They wouldn't dare, anyway.

 

You really are a desperate person, getting further into a desperate mess, it hurts to know there is nothing I can do to help you.

I'm less desperate than I was, for things are happening - very slowly, and I'm certainly not getting deeper into the mess, for that very reason.
****************************************************************************************************************************************************************

 

 

The NHS is breathing its last breath and will likely be gone in the next few years, so you need to take advantage of it as much as possible while it's still there.

True, and I can see chaos on the horizon, but the email I received from them did ask if that date was convenient. Nor did I receive the initial appointment letter, or even know when it was sent.

 

Your solicitors also do only have one thing in mind - profit. They don't care about their clients. They will deliberately take as long as possible to extract as much money out of you as possible. I would just stop using them to be honest as they're not doing anything and keep messing you about.

True, This is precisely what they were doing for over a year, without ever warning in advance that they were siphoning increasing amounts of money away. I certainly will stop using them once the complaint is resolved. They are charging me nothing during this process - for they know perfectly well they're at fault, but don't care to admit it.

 

Thanks for your offer. I'll be bearing it in mind.

Edited December 9, 2014 by Mihaela

[Laddo]

If your mother instructed them by letter to make sure your bills were paid etc. and they haven't done this, I'm pretty sure they are breaking the law as that would count as a written contract. Hopefully you should be able to claim a large proportion of their charges back. I will ask my mum about it as she works for a solicitor's.

[Waterboatman]

I think as this letter was an instruction, or better a request. It really required the solicitors to agree to it, I think if this had not been so late in the day, that they would have declined. Laddo I think you can confirm this.

Its a sorry mess created by good intentions, the solicitors should simply have declined, as their client was no more, they fudged. Mistake.

Has the term 'power of attorney' been mentioned? No one can act as your effective guardian without this.

Laddo check this, I am not a legal bod. My legal connections are 'extinct'.

[Mihaela]

They fully agreed to it on that first meeting a day or two after my mother's death, but they didn't keep to the agreement. Yes, they certainly did mention power of attorney and discussed it at some length. I didn't fully understand at the time. I was too upset about my mum dying, but I spoke to my cousin straight after and she advised me not to agree to it.

I was completely in the dark and trusted their reassuring words, but was badly let down.

 

Anyway, I went to that meeting. They were obnoxious and I had a minor meltdown. I'm disgusted. I'll give the details tomorrow as it's worn me out

[Laddo]

I have got some good news for you Mihaela - I spoke to my mum and she is going to get together various bits of information that should be useful for you which I will send to you. Apparently pretty much everything the solicitor's firm has done is in some pretty major breaches of both law and legal guidelines. Apparently some of it is bad enough to potentially go to the high court if the firm refuses to budge - I know this may sound daunting (it certainly would for me) but apparently someone can represent you in court without you having to actually be there. My mum is willing to help you in any way she can as she hates solicitors. I will also fight for you in any way I can

[Mihaela]

I'm still finding it difficult talking about that awful, pointless meeting. Even just thinking about it is affecting my health. Just in case others reading this thread might feel I'm ignoring Laddo's last post, I've already spoken to him about the meeting at some length. Thanks again for all your help, Laddo

All I feel able to say for now is that the head solicitor behaved appallingly, and made quite a fool of himself. He reminded me of a smooth-talking used-car salesman - and was even dressed for the part. He bullied, charmed and blustered, wouldn't address the crucial points and was self-congratulatory. He began by showing a veneer of 'care' using emotional manipulation. He tried his best to twist the facts, but I could see right through his tactics. He began to realise that I wasn't as gullible as he had hoped, and this showed every time he inadvertently dropped his 'caring' facade.

I'm stronger than morally-challenged people like him imagine. They're not accustomed to dealing with people as complex as me, and are way out of their depth - but this doesn't stop them using the same dishonest tricks that use on more impressionable people. I may well be vulnerable and emotionally naive, but I'm intellectually astute, morally strong and far from gullible. I stick to my principles, while his proved to be superficial or even non-existent - nor do I suffer fools gladly. After all, I've had much experience. However, the stress of dealing with the dishonest, selfish and unscrupulous NT world takes its toll on me.

I'll give further details when I feel able.

 

The good news, apart from the kind offer of help made my Laddo's mother, is that CS have at last found my second referral and hope to be visiting me before Christmas!

Edited December 12, 2014 by Mihaela

[Laddo]

Thanks again for all your help, Laddo

 

You are very welcome In case you see this before next time we speak properly, my mum has sent me a lot of useful information which I will pass on to you as soon as possible.

 

We will get you through this!

[Mihaela]

Latest update on CS. I eventually got a letter from them with a form enclosed . The letter said that the referral form they'd received from CAB wasn't the right type, so they'd sent another for me to fill in. I don't like forms at the best of times, and that's part of what I need help with anyway. The form wasn't really meant for clients and included a great long list of risk factors. It took ages to perfect, and I still wasn't happy with it. One the cats left a muddy pawprint on it and I'd ticked a whole line of risk factors as low instead of leaving them blank, for I hadn't properly read the instructions. Sometimes I got confused about whether they wanted to know whether I was a risk to others (no), or others were a risk to me (yes). I'd got a friend to help over filling it in, but I still wasn't fully happy with it. So I rang their office and was given another number to contact - a number not on their website, and with a local code. They'd said in the letter that they'd enclosed an SAE, but they hadn't. This caused more problems. I thought I'd have to find a stamp and envelope. I've not posted a letter with a stamp for many years, and found a few old steamed-off stamps. I picked a 19p one which seemed vaguely familiar and about right for a 2nd class stamp. I couldn't believe it when a friend told me they were now 53p - that's over 10/6 in real money! That's how of touch I am! I still convert money to the old amounts automatically. It comes without thinking, and it's always accurate to the nearest halfpenny, yet I'm useless at checking my change or adding up properly).

I don't mind ringing them for, unlike the council, they're always friendly with me, so i rang that number and she said not to worry about the form as it didn't have to be perfect, which was a relief. Then I mentioned the local number and asked where they were so I could hand over the form the next day. It just so happened that me and my 'friend' (haha!) would be passing the place the following evening, so I took the form there and gave it to some random person working late in an office. They have a big house down a driveway with flats (for some of their clients I suppose) - a lovely place, very clean and well-decorated. I'd been given directions, but I'm not that good at remembering the details so we just went to the nearest entrance. I hadn't even noticed the signs pointing to the other entrance - where we should have gone. Even though well lit, darkness and bright lights mess up my brain. When we got in I was too busy looking at Christmas decorations and ornaments in a cabinet in this strange new building and my friend sort of led me to the office, and when he asked my name, she had to answer for me. I just couldn't think straight - so embarrassing! He said he'd pass on the form to the right person. It was only when we left that I saw the signs. This is typical of what I experience in day-to-day life. New experiences and places can can cause sensory overload and I'm easily distracted by things around me.

We were heading for a church (for free food!) - a five-mile walk in the dark and rain - and this place just happened to be on the route. The church was another new experience for me with lots of distractions. My friend had been there the Christmas before and knew her way around, and had met some of the people, but it was all new for me. We ended up decorating little cakes, and I got so absorbed in it that when the name question came up again, I automatically looked towards my friend for the answer! I really don't know why. We tease each other a lot and got the giggles. I think the others there took pity on us. I take pity on my friend for she's worse than me in many ways. It must be so obvious that we don't fit in and aren't 'normal'. We both enjoyed it though.

 

I'm only saying all this to show how nothing is straightforward in my life. At least it's never dull.

Edited December 20, 2014 by Mihaela

[Mihaela]

Latest update.

 

CS have confirmed that they've received my referral form, and will be seeing me in the New Year. I'm trying not to build up my hopes, but she sounds a very caring and easy-going kind of person - the only type I can deal with.

Yesterday was ruined by a morning phone-call from my advocate just to say that the solicitors hadn't bothered replying to his email. He scared me by saying I might be taken to court for not paying council tax and 'lose my assets'. Court doesn't bother me, for I know I'm in the right, but losing my things does, for that's what the bailiffs letter threatened. (If anything, it's me who should be taking the solicitors and council to court!) He doesn't seem to understand that:
1. I've no idea how much I owe, and am still awaiting news from the housing advice people on this;
2. I can no longer deal with the council directly - even just thinking about how they treated me makes me panicky;
3. Besides I've no idea how to pay them, and fear doing something wrong and getting punished;
4. I'd get confused unless it was made very easy for me;
5. It's the council's legal duty under the Autism Act to provide any necessary support (in my case with executive dysfunction).

The solicitors and council are entirely to blame for this mess, and they owe me an apology. I said at the beginning that I'd happily pay whatever I legally owe - and this does not include so-called 'court fees', for I'm not responsible for the solicitor's mistakes. I neither know how much that is nor how to do it. I'm determined that my health suffers no further from the effects of official incompetence of any kind. I've suffered all my life, and it's time I had a break from it. It's time my vulnerabilities (and strengths) were properly recognised and accepted.

I'd forgotten about all this trouble until he rang, and was quite happily in my own little world preparing for Christmas. I had a lot to do and now I'm a day behind, for I could do nothing yesterday and felt very depressed. I may have to 'celebrate' Christmas a day late.

 

For those who'd read the previous post, and may wonder how I can make fun of my own difficulties, if I didn't do that from time to time, I'd lose my sanity and my life wouldn't be worth living. I need the company of other aspies (such as my 'friend'/friend) to enjoy life to the full. By the way, it was a Mormon church - which added to the surreality of the evening. It was all so surprisingly ordinary and un-threatening, even the carols were familiar - and it was my first genuine awareness of Christmas this year.

Edited December 23, 2014 by Mihaela

[Laddo]

Keep going, Mihaela. We believe in you.

 

 

For those who'd read the previous post, and may wonder how I can make fun of my own difficulties, if I didn't do that from time to time, I'd lose my sanity and my life wouldn't be worth living.

 

 

To anyone who wonders how someone can make fun of their own difficulties: you should all learn from Mihaela here. Laughing at your own faults is one of the best things you can do to get through the darkness. If you don't laugh, you can only cry.

[Mihaela]

Very true. This why I feel relaxed with my aspie friends. We actually have fun. We accept each others' difficulties and oddities and there isn't the stress that so often arises when dealing with NT's.

 

By the way, when I got back the other day I found a 'letter' from CS. It contained the same form that I gave them before Christmas, with no accompanying letter or SAE. I presume it was a mistake of some kind and I'm certainly not filling it in again. How long should I wait for them to contact me next?

[Laddo]

I would email CS as soon as possible and say that you are extremely dissatisfied with their efforts so far. How long has it been since you first contacted them? Three months? Have they actually done anything in that time? When I sent a complaint to them they said they take complaints very seriously, presumably as it will damage the image of the business, so hopefully it will act as the kick up the they deserve.

[Mihaela]

Good news at last!! Someone from CS is coming to visit me next Thursday!

[Laddo]

Yay! Let's hope you can finally get the support you so deserve

[Mihaela]

I had the visit yesterday - really nice and empathic people, and they've offered to do anything I need them to. It was brilliant, and all so easy and stressless! They can provide up to 11 hours of support a week, but I don't anything like that much. It's been well worth the wait, and they'll be contacting me again soon to get started.

Edited January 16, 2015 by Mihaela