Review take 4...

Hi Guys, things are a bit more positive this week!

We have reached RAS enlightenment!

In other words...

The Resource Allocation System part of the assessment is over!
Basically, they've run the figures and then decided on a suitable budget for us! Woo hoo!

What now? Well, we move to the next step - the Support plan!
This is a pilot scheme so it's all new for us too. It'll be a big learning curve but I think, it's really about working out how to spend the budget and get the best outcomes and that we can do! I mean, who knows best what will work for us than...us! lol

This new personalisation way, means the services Coo and I receive, will be more in keeping with what we really need. The care-package is a given - we need that and it's never been in dispute but the diffence with this new system is, there's options and choice to flexibily use the remainder of the budget to improve our lives! Woo hoo! Just how cool is that!

I'm hoping this new system delivers as expected, it could make such a massive difference to peoples lives!
It really has the potential to be so very empowering and positive!

I'll keep you posted on our journey!
(((hugs)))
Maz x

Review take 3...

Hi guys, we're still stuck in review!

The worker is very nice and she's an O.T. (occupational therapist), which always helps when describing physical disability! The main problem is the paperwork with the new system. It's not so nice and things have been problematic at best. Coo's stressed, I'm stressed and there's little movement this week...Grrrrrrrr!

I'm hoping things are starting to move now but the new system doesn't seem to fully take account of complex conditions like Coo's and it's been  a bit difficult to assess and agree, the carepackage of support we really need!



I feel the main problem has been the way the RAS - resourse allocation system - calculates the care budget. I mean, there's no provision for a disability like Coo's where a 'waking service' is needed to keep them safe. It offers either a sitting service or a sleep-over and our current service is neither!
Our situation means, we need someone to be awake, to take over from me on my two nights off a week!
They don't sleep or sit and watch either so offering a sitter or sleep-over service is not appropriate!

Any P.A. we have, has to monitor, record and cope with all the seizures and personal care continually throughout the night and it's not an easy job - I know!

I'm still hopeful this issue can be resolved soon and we can at least start to move on!
I'm keeping my fingers (and toes!) crossed and hoping, it won't be too long now!

Wish us luck - I've a feeling we're going to need it! lol
((( Hugs)))
Maz x

Social Services Review take 2...

Hi guys, we've reached the next stage of review - welcome to the world of... RAS!

For those who have not yet embarked on this path, that's the Resources Allocation System.
It's where your needs are assessed and quantified, well, as best they can be! and  then, an overall figure is reached regarding the care you are going to need and (more importantly) - the finance required to buy it!

Remember the old game shows? Where points make prizes? Well...welcome to RAS!
It's a bit of a crude way of describing the process, but in my view, it's also a  fairly accurate one! The main thing to remember is to look very carefully at your situation and the care you really need! It's not a time to be shy or worry about your dignity too much as every answer recorded affects the amount of your overall budget and ultimately how much 'Care' you can afford, to help you in your daily life!

Reviews are always stressfull. Coo really struggles with them as it's so very difficult to 'open the box' and really tell people just what it's like! He always feels really low afterwards, and I guess he's not alone in this. I mean, who can blame him, when it just looks so dreadful all written down on a form!

We've been lucky this time around, the social services person is also an O.T. (Occupational Therapist) and kinda understands the bigger picture of what things are really like. She asked pertinent questions without seeming to pry too much and Coo has coped  pretty well - thank Goodness!

Now, we just need to wait and see how the budget pans out and hope for what social services call a...positve outcome!

Wish us luck and if you're stuck in the review process too - keep your chin up!
(((hugs)))
Maz x

On BBC Radio today...

Hi Guys, I've been busy!
It's Carers Week and to help raise awareness...I've been on the...radio!

Carers Scotland asked if I would share what it's like being a Carer, mainly to raise awareness of Carer issues and how it really is and...of course...I did! lol
It was the CallKaye show. It's a  BBC Radio Scotland show with Kaye Adams, who's a well known journalist here in Scotland.
...and the topic?

Who Cares for Scotland's Carers?

Well, I thought about it, I'm concious Coo doesn't really like me sharing too much of our lives, but... on balance and with a topic like that, I had to be involved didn't I!

It went well, I was only on the air for the last few minutes but I did pack a lot in! and I'm glad I did decide to do this as it really helps raise the profile of Caring issues in general and, in my book,  that can only ever be a good thing!

I hope by keeping up the pressure and speaking out for Carers, one day, we can all get a better service and the support we so desperately need!

Keep fighting the good fight and don't lose heart, surely better days must be coming soon!
(((hugs)))
Maz x

Welcome to Social Services Review...

Hi guys, it's review time!
Those with social services input already in their lives, will know exactly what that means and those who don't, well, here goes...

Every so often (usually annually if you're lucky!), all care and support, needs to be reviewed by Social Services. Basically, it's to see if you still need and qualify, for the help you were assessed as needing last time around - with me so far? Good! lol
It can be a bit of a mine-field but if your needs have stayed the same, things are usually fairly straight forward and signed off relatively quickly, but, if your health has deteriorated and you need more help - in our case more Personal Assistant hours added to our Direct Payment - well, you need to prove you really need the help and go through the whole assessment process again!

Lucky us! This is where we are now - welcome to...'Review!'

The new assessment forms are fairly bulky.
They're 35 pages long and as Coo's condition is complex that means, very little fits into those wee tick boxes so every comment and qualifying box needs to be used to explain the disability effects and that's no easy task!
This time, the form took around five hours to complete but it now holds a very detailed account of exactly what living with so poorly controlled Epilepsy, is really like on a daily basis for us both.

These forms are always difficult for Coo and I as we have to 'open the box' and really look hard at all the gory details! Worse still, record it all and share it with social services. Coo always finds it upsetting and difficult and that's totally understandable! But...to get the help we both need to continue and live with things, it's really the only way! I try to make things easier for Coo by, filling in as much as I can, then adding input from family and lastly, a read - through with Coo to add and change anything he's not happy with. I'm not sure how others manage this but it seems to work for us best this way!

We've completed the first step: the dreaded forms and we've also had a follow up meeting so hopefully things are on track now, so...so far so good!

I don't think we're alone in finding review time so stressful. I guess the threat of losing the little bit of support you already have, is always a real worry and I just hope things move along smoothly and we hear back from Social Services soon!

Wish us luck and if you're knee-deep in the dreaded review forms yourself - keep your chin up!
(((hugs))) always,
Maz x

Direct Payments in Scotland...

Hi guys, I came across this and thought it interesting.

It's from the blog of Lesley Riddoch...

The Scottish Government's response to the consultation (Self Directed Support) (Scotland Bill) 2011:

   

'Employment of close relatives via direct payments'

40. The question of the employment of close relatives using direct payments was raised by a number of people. We understand that the current regulations on this matter are interpreted in a variety of different ways, with some councils allowing this in only a very narrow range of exceptional circumstances. In our view where the employment of a close relative is appropriate - in other words, where it is the best solution on hand, where it will achieve positive outcomes and where it is the informed choice of the disabled person and the carer - a local authority should support the family to put the necessary arrangements in place. In the lead up to the Bill's introduction we will consider the range of appropriate and inappropriate circumstances, with a view to laying a fresh set of regulations in the future.'

I'm so glad my local authority are supportive, it seems other councils are not so helpful - thank God I live here!

 (((Hugs)))

Maz x

Define normal challenge...

Hi Guys, I came across this and thought it was a good idea.
It's a define normal blog challenge!

Well, what do you think? Sometimes, I tend to forget, what we perceive as normal, other people from what's considered normal families are kinda shocked by!

This week, well to start with, Coo's speech was a little slurred and he felt poorly so...

Appointment  #1 was on the cards -

More blood tests to check AED (Epilepsy drug levels), were ok and white cells too, just in case he'd picked up an infection...again!

Appointment #2  - That was for the results and to get the drug doses adjusted as he did have an infection!

Appointment #3 - Well, that was the most concerning one as it was with the Neurologist. It seems we're at the end of the road with drug therapies, there's little improvement in seizure activity levels and while that's bad enough, the main issue was the fact, our Neuro calmly dropped into the consultation, the fact Coo is now a high risk for a SUDEP, a sudden unexplained death in Epilepsy - well...okay.

Of course we accept this and take it in our stride - we've always known there was a risk and that's normal for our family. Just another ordinary week but while it's ordinary for us, it's not so for the other people around us and that's the bit you sometimes forget about isn't it!

People were genuinely shocked by this latest turn of events and when I think about it so should we have been - shouldn't we?
On reflection, I think it's part of our coping strategies, you just kinda accept what is said, take it on board and carry on regardless don't you!

I wonder what kind of 'normal' week the other bloggers have had - I guess we'll see, won't we!

(((hugs)))

Maz x