Friday, 30 May 2014

Total Insanity! The Mad Budget 3

I have just received a hand delivered copy of my third social services review.  I'd like to thank Nottinghamshire County Council for meeting my request to have a copy before I leave for Stanmore on Sunday night.  It is very much appreciated.  What isn't appreciated is the stinking pile of bulls**t that was contained in the envelope. That might sound harsh but stick with me and you'll see what I mean.

On the whole the social workers conveyed my situation pretty well.  There were a few minor errors, they got my GP name and address wrong, they got the ages of my children wrong, but it was generally a pretty good picture of my life and my needs.

It's what they did with that information that is the problem.  They ignored every word of it and plucked numbers out of thin air then signed off on it.  My fate is sealed.  They have (not) considered the facts and decided that my needs can be met with 23 hours a week support.  That is a decrease of 9 hours per week.

This is the breakdown:
(click to make it bigger)

I am allowed 10 hours a week to deal with my person care needs and meal prep, which is pretty much accurate.  After that things get a little crazy.

I am allowed 4 hours per week for domestic support.  If anyone knows how I can do 14 loads of laundry in 1.5 hours I'd really like to know!  Ditto with the cleaning.  I have three children.  If you have children you will know the cleaning never really ends.  You are constantly picking things up, wiping things down and mopping up the mud from the kitchen floor when your little darlings come running in from the garden and forget to take their shoes off, again, desipte you telling them every single day of their lives.

In the review I mentioned my health had been bad recently so I ordered the supermarket shopping online. Social Services have now decided I don't have to go to the supermarket ever again and I can only spend 1 hour a week of my budget paying someone to help me put my internet order away.  There is no contingency for nipping to the shop to replace that weird substitution they always bring, or the thing that was out of stock, or to allow for when one of the kids drinks all the milk or the bread goes mouldy a day before it's sticker date.  I guess those things never happen to social workers.

At least I'm not a prisoner in my own home.  I'm allowed to leave my house and access the community for 2 whole hours a week!  Aren't I the lucky one?  Wait, that's about the amount of time it takes to deal with my medical appointments.  I guess I'll not be making it to knit and natter any time soon then :(

The best part of this joke (it is a joke, right?) is the amount of parenting support they have allocated me.  5 hours a week to take my children to school, and half that amount during the school holidays.  Nothing more.  Nothing to help with the games my children want to play, the visits to the park to play with their friends, the birthday parties at friends houses after school, the library visits.  Nothing to help with the arguments and tantrums, nothing to give me a little respite when I'm ill and need to rest so I don't burn out before teatime.  Nada.  Zilch.  It's not enough to cover the costs of my very reasonably priced childminder.  Would you do 10 school runs for £34.13 a week?  No, and I don't know anyone who would, well apart from social services because the manager totally agreed with this farsical review.

I don't think the social workers have children.  If they did they would know it's a twenty four hour job and kids always seem to know when you're exhausted by playing up even more than usual.  I love my kids, they are generally well behaved but they have their moments and I need a little support to be able to be a good parent to them.  Obviously social services don't appreciate this at all.

At least they gave me 2 hours contingency for getting my children to medical appointments, especially considering my daughter has glasses, my youngest son has asthma and all three showing potential signs of having the same condition as me.  Unfortunately I was diagnosed with Ehlers Danlos Syndrome too late to receive genetic counselling.  When I conceived my children I had a diagnosis of ME/CFS, there was a chance I would recover and I was reassured that I wouldn't pass it on to them.

I hate having to ask social services for help, I hate asking for help with anything but the eligibility criteria says I am entitled to support to live independently.  The 30 hours a week package I have in place is working very well, my staff are under contract and meet all my needs most of the time.  If it ain't broke why fix it?  Because Nottinghamshire County Council have to save money and it's easier to punish the disabled and infirm than look at ways to conserve resources and be efficient in their business.

I can't accept this review.  The council's complaints team are already taking it to the next level and I shall be contacting my MP because this budget doesn't even come close to meeting my needs and I'm not going to let them get away with it.

Thursday, 29 May 2014

You can't argue with idiots

Remember the ongoing saga with social services?  Today I herad back about the result of the third annual review of the year.  They have now cut my budget from 32 hours to 23 hours.

The first words that entered my head are unrepeatable in polite comany.

They took all the information I gave them, the outcomes I had spent hours writing, the financial breakdowns that outlined how my current costs meant I needed a 30 hour a week package, and the letters from all my consultants and decided that I needed:

  • 14 hours personal care
  • 4 hours domestic care
  • 5 hours parental support

Fucking bollocks!

Sorry, but there is no other way to express my disappointment and anger at the situation.  My PA has a contract for 18 hours a week, my childminder works the equivalent of 6 hours a week doing the school run and other support and I pay and agency cleaner to do 6 hours cleaning and laundry.  How am I supposed to manage with 23 hours?  What do I cut?  
  • Do I risk letting my children walk to school on their own?  They are 8 and 9 years old and have to cross quite a busy road with double parked cars.
  • Do I lose my cleaner?  Without her the beds woudln't get changed, the floors would go dirty and the bathrooms would fester.  My house would end up being a health risk?
  • Do I lose my PA?  She is an absolute saint that gives me the independence to do everything I need to do from medical appointments, and food shopping to going to the library, looking after the kids so I can rest and generally keeping control of my life.
I still can't believe what they have done and they will not budge one inch so I'm going to have to take this to the next level, I might even have to get a solicitor involved as they are in breach of several of their own policies.

Fair Access to Care Services, a government document that sets out the standards social services are expected to follow states:

Staff undertaking reviews must work with the individual, carers and relatives on managing the effects of any reduction or withdrawal of services or personal budgets resulting from the review process.

When I asked the social worker about this at first she said it was my responsibility to work it out, then she said they would help me find cost free support in the community.  There isn't anything reliable or suitable to meet my needs.  If there was I'd be using it already!  In the past social services has suggested asking other parents to take my children to school, but that is wrought with problems.  Would you take someone else's kids to school, every day for no pay and with no chance of the favour being returned?  How many years would you be prepared to take on that responsibility?  It's not really an option because being pretty much housebound I don't know any other parents well enough to ask and I would not be happy doing that as I can offer nothing in return.

FACS also says social services:

...need to exercise considerable caution and sensitivity when considering reduction or withdrawal of care and support, and to ensure that people and their carers understand the reasons for these changes. 

There has been no sensitivity and no explanation, I was told that was what they had decided and I could not barter for more hours.

They are not allowed to reduce or withdraw support if that would mean an increase in eligible needs, but that is exactly what they have done.  Well they picked the wrong person to piss off because they are going to have one hell of a fight on their hands.

Wish me luck!

Thursday, 1 May 2014

Making our invisible, visible.

This is me.  My name is Clair and I have a medical condition you have probably never heard of.

I have Ehlers Danlos Syndrome - Hypermobility Type.  I also have Postural Ortostatic Tachycardia Syndrome and Sicca Syndrome.  I've been ill for nearly 25 years.  I will never get better.

People tell me, "At least you don't have cancer."  I'm grateful I don't have cancer.  My health conditions are unlikely to kill me but I will suffer from debilitating symptoms and pain for the rest of my life.  There is no cure and treatments will only help me manage the symptoms.

I can't do many things that most people take for granted, I can't walk far, I can't work, just getting out of bed can be so exhausting I can't do anything else.  I don't have good days, only bad days and worse days.  I am never symptom free.

I am in constant pain, my joints partially dislocate, I bruise easily, I get dizzy and often collapse when I stand up because my blood pressure drops very low and my pulse races.  My autonomic nervous system doesn't work properly, my muscles don't relax properly,  there isn't a single part of my body that isn't affected.  My body has to work hard just to sit upright in a chair so I get tired quickly and having a rest doesn't make me feel better.

I try to live life to the fullest but people struggle to understand how ill I am when they see me out and about looking 'well'.  Ehlers Danlos is an invisible condition.  If you tell people you have cancer they understand.  You either go into remission or you die.  People don't understand when one day they see me walk a few yards from the car to the corner shop but the next day I say I'm too ill to get out of bed.  It's not because I'm depressed or scared of moving, it's because it wipes me out so much I'm not physically capable.  If you run a marathon could you run another one the following day?  And the next day?  And the next?

I'm not faking it for attention, I'm not lazy or depressed.  This is just how it is.

The hardest part about having an invisible condition is having to fight for the help and support you need.

It took 23 years for me to be diagnosed.  The NHS had all but given up on me.  I had to research my problems, find the right doctors to see and then I had to pay for a private consultation just to get a diagnosis.

The fight didn't end there, I am still fighting for appropriate treatment and have to travel all over the country and pay to see the right doctors and specialists, because unless you live in London there is next to no help on the NHS.  I also have to fight for social care to enable me to manage my health and look after my family, and fight for disability benefits so I can afford to buy equipment, medicines and therapies.

I'm not a teenager dying of cancer, I know I'm not going to raise a million pounds but I would like to spread the word about Ehlers Danlos Syndrome.  Hopefully you can find it in your heart to help people like me by donating to Ehlers Danlos Support UK.

Thank you!

BTW the hippo in the photograph is a wheat bag, I zap it in the microwave and it helps me deal with the pain.