Mad World

Do you ever get the feeling that you're the only sane person in a mad world? I keep muddling thorugh but life and other people sure as hell aren't making it easy!

Social Services and Nottinghamshire County Council are stressing me out, it seems the people at the top of the ladder who make all the decisions but haven't got a clue what's going on, the people in the middle of the ladder do have a clue but can't change the ridiculous policies and basically have to do as they are told and me the service user is left trying to make sense of all the madness.

Yes that's right I have been on Direct Payments since 1998 but aparently the letter saying I've been on them for 8 weeks is factually correct because Direct Payments changed to a Person Budget 8 weeks ago, and now I'm getting my Personal Budget as a Direct Payment. Of course that is perfectly clear! I don't know why I didn't see it before! At least I managed to get them to stop paying my husband's carer's Direct Payment Personal Budget into my Personal Budget Direct Payments account. It's not exactly personal if you give them money to someone else is it?

I'm going around in circles with my health too. I'm still pretty poorly but laziness and discrimination in the NHS mean that I still don't have a clear diagnosis or treatment plan. In 1990 I was diagnosed with ME. At that time there was no treatment, clinics or specialists so I was left to figure it out for myself. I was pretty ill, lost my mobility and had numerous infections and flares of severe joint pain. My GP back then was unsympathetic at best and any advice I was given only made me worse (exercise makes me worse, then do more exercise. WTF!)

In the past 2 years I've been diagnosed with Reactive Arthritis, have been refused treatment by one rheumy, refused an appointment by another, diagnosed with Palindromic Rheumatism by a 3rd and been strung along by a 4th.

At the moment I've been taken off the hydroxychloroquine (which was helping me) and I have been suffering low grade fevers and joint pain for the past 7 weeks. I don't know where to turn to for help. I have to wait on average 3-4 weeks to see my own GP, I can see another doctor if I phone for an emergency appointment but this is usually pointless because I get told to see my rheumy or my own GP. My rheumy won't see me for another 5 months, she blames all my symptoms on chronic fatigue and just wants to dose me up on Gabapentin, a drug I've had before which makes me spaced out to the point that all I can do is sit on the sofa and dribble at Jeremy Kyle.

I've been thinking about what I want the doctors to do. I want them to find out what is causing my symptoms and to try and treat the cause, and if not cure me then at least help me have a better quality of life. Apparently that is too much to ask of the NHS.

I don't know what to do to help myself. I try and eat a healthy diet and stay as active as I possible can without aggravating my symptoms. I just wish I could find a real life Dr. House to tell me what I have and what I can do about it. LOL!

They couldn't organise a bun fight in a bakery!

Nottinghamshire Adult Social Care and Health Department that is. Sometimes I wonder what they get paid to do, or if anyone there has a brain. I am receipt of Direct Payments. I am given cash by Social Services so I can purchase serivces to meet my assessed care needs. The County Council are obliged to provide a support service which offers practical help and advice on managing my Direct Payment, recruiting and employing staff, doing PAYE etc. The council paid for The Rowan Organisation to provide this support but as of 1st April 2011 they will no longer do this. Under the Self Direct Support/Putting People First scheme service users will be allowed to choose who provides their support. There are 8 service providers in my local area, all of which charge different rates for different levels of support.

The Rowan Organisation wrote to me informing me of their service charges and asking that if I wished to continue using their support service to complete the form in good time before 1st April so that I was not left without support.

On 4th March 2011 the Adult Social Care and Health Department wrote to me asking me to get in touch with my social worker for a review of my Direct Payment so it can be increased to include enough extra money to cover the additional cost of purchasing support. Luckily I was meeting my social worker that very day so I asked her and she said she didn't know. She did a review and said she would get back to me.

Today (29th March) I still had not heard back from my social worker so I telephoned the department for advice. Bearing in mind that if I do not purchase support services by 1st April I will be left without support I wanted to resolve the matter quite urgently. I simply wanted to know how much money would be made available for me to purchase support services and when I would get the money. I spoke to the Duty Social Worker. My social worker was off ill, my review of 4th March was not completed and the duty social worker had no idea if I would get any money to purchase support services, never mind how much or when I would get it. This was not the answer I wanted to hear. I need to choose the level of support and pay my chosen provider by 1st April - in 3 days time, and they still hadn't made any arrangements! No-one seemed to understand or know what was going on! I was told to use my suplus Direct Payments to purchase support. I asked how could I choose the level of support when I don't know how much money they are going to give me in my budget to pay for it? This isn't a small issue considering a low level package costs around £200 and a high level packaged costs just under £2000 from The Rowan Organisation. The social worker didn't know.

This has been yet another planning disaster from Nottinghamshire Social Services. I really could do without the stress at the moment and the only thing I got out of the telephone call was I am getting a complaint form in the post tomorrow to complain about how incompetent they are. Again.

Goodbye Spiggy old friend

In August 1993 a friends cat had 3 kittens. I begged Trev to take me round to see them. We already had a cat but I wanted another one. That was when I first saw Furface (later renamed Spiggy). He was the naughtiest kitten, he bit his mother when he went for milk and he was a devil with a cotton reel. He was so full of character! I fell in love with him so when he was old enough we bought him home to live with us.

Our first cat Scrumpy was not impressed, she didn't come down from the window sill for 3 days but eventuall she came to tolerate Spiggy, even if she did knock him off the top of the cat scratching post when he wasn't looking.

Spiggy was full of confidence, always picking fights with bigger cats but usually coming off worse. I'd hate to think of what I paid in vets bills over the years because of his war wounds. Spiggy loved his food, especially chip shop chips, baken beans, lettuce and tuna. He was also skillful in the art of Schrodingering, I will never figure out how he managed to creep onto my lap without me noticing.

He loved to hunt, mice were his favourites but in the spring he like the challenge of catching young bats. I guess to him they were just mice with wings. He was excellent at hunting balls of yarn too and he completely destroyed my one and only attempt at bobbin lace, but I forgave him.

Spiggy lived life to the full for 17 1/2 years but unfortunately his health started to deteriorate. He became very frail and we decided it was time to to let our majestic little cat go peacefully. He went to sleep at the vets at 2.30 this afternoon. I hope he's having fun in cat Valhalla, chasing bats, plaing with cotton reels and eating all the tuna and chips his little belly will hold.

Missing you Spig-spigs! xxx

A rose from my valentine

A dozen red roses to be exact!

My dear husband Trevor came home from the supermarket yesterday and presented me with a dozen red roses for valentines day. He's been really soppy since I had my operation, but I'm not complaining! He knows that red is my favourite colour and that I love roses so he'd thought he'd treat me because I deserved it.

Valentines is a very special day for us. We first set eyes on each other on 14th February 1992. I was at Manor Lodge in Worksop, it was folk night and I was on stage singing when Trev walked in. A friend pointed him out to me but I saw him with another woman so I thought I had no chance. It turned out the other woman was his friend's wife and he wasn't seeing anyone. We didn't speak that night but he spotted me in the Frog and Nightgown a week later and he came over to say hello,and the rest is history!

Love you Trev! xXx

Now That's A Snowman!

I found a box of old photographs at the back of the cupboard on the landing. Flicking through the snap shots took me right back to my teenage years and reminded me of the group of friends I used to hang out with at the Frog and Nightgown in Worksop. We were all very close and we did all sorts of crazy things together. In the early spring of 1991 there was a heavy snowfall and we all went out to the recreation field behind my parents house and built a snowman. We didn't just build any old snowman, this snowman was 10 ft tall! It stood proud in the middle of the field for weeks, and long after the rest of the snow melted a little frozen stump remained.

A meeting with an old friend a few weeks ago lead me to start organising a reunion of all my old friends from the Frog. I found quite a few people on Facebook but some of the others were harder to find. I Googled many names and managed to find a couple of people including Giles Bassett-Darby, one of the Frog's Alternative night DJs. After running his own business for a number of years he's now an artist selling his hand drawn cards and pictures through his website tillypepperart.co.uk I love the simple style of his designs and you can imagine my surprise when I saw this greeting card! It's the snowman! :D :D :D

Odd Socks

Ever since I picked up Stray Sock Sewing in the local library I've been addicted to making sock creatures. It's rather theraputic making them. They don't take long to sew so it's pretty much instant gratification as far as crafting goes and it's interesting to see how each creatures character develops as I stuff, shape and sew. Here's a couple of my latest critters, a cute kitty and a rather sad looking puppy (taken with my snazzy new camera!) Are they cute or what?

Say cheese!

A couple of friends have unwittingly inspired me to take up an old hobby again. I have always loved photography but I never really had the time or money to take it any more seriously than grabbing a few snap shots on holiday. Whilst i was recovering from my hysterectomy I made the mistake of looking up digital SLRs. Big mistake! I set my heart on a Canon EOS 500D but unfortunately there was no way I could meet the £500 price tag. So just after Christmas I was browsing on eBay (as you do...) looking at second hand cameras when I found a Canon EOS 450D at a bargain price. Hardly used, complete with image stabilising lens, I had to have it! Trev and my parents said they would chip in for my birthday next month so I bought it! Yay! I ordered a funky camera bag and Trev has bought me a book so I can learn how to use it properly. I can't wait until the weather gets better and I can take it out into the countryside, well at least as far as my scooter will get me!

Say cheese!