Carers Strategy...

Hi guys, I've been out visiting with my Local Authority again!

This time, it was around their new Carers Strategy.
I was speaking to a group of social work managers and office bearers about good practice and good news surrounding our personalisation care package. I shared a bit about my caring role and both Coo and I's SDS journey so far - it's been a bit of a long and winding road!

I actually directed them here to the blog! I told them about the issues we had while setting up our current care package and that when we finally finished the RAS (resources allocation system), we honestly felt we had reached RAS enlightenment!

My talk went down well and I hope having Carers on board at these strategy meetings will make it all real for the social workers and councillors involved in such an important decision making process.

I honestly feel, just as I do with personalisation and SDS, the Carers Strategy if developed appropriately, has the potential to offer real and vital changes for Carers and I guess that's why, I put myself out there when I can and kinda tell the people making the decisions just how it really is for Carers!

I find Case Studies tend to make more of an impact and don't come across as just words and if you have Carer involvement in there right at the start when they're writing the strategies in the first place.. all the better!

Keep strong and if you have the opportunity to influence the decision makers -  just go for it and tell them how it is!
(((hugs)))
Maz x

Carers Parliament...

Hi guys, guess what? I'm going to Scotlands first ever Carers Parliament!

It will be held in the Scottish Parliament in Edinburgh on the first of October and Carers will get a chance to pose questions to ministers. It's going to be televised on the Parliament Channel too so it should be good!

Having had such a positive experience so far, first with our Direct Payments and more recently with our SDS personalisation care package, my question is...

***When will we see the promised Direct Payment for Carers in their own right? This funding will enable Carers to purchase much needed support and respite and this alone could make such a massive difference! A wee bit of additional funding can relieve a lot of pressure and make everything just that little bit easier to manage!

It'll be interesting to see what other Carers ask and more importantly what the ministers answer will be!
I've time to submit some other questions too so please leave a comment if you've a question you'd like posed on the day!

I honestly think it's only by working together and supporting days like this, even if they only succeed in raising awareness of Carer issues, that Carers will ever really get the support they need!

Lastly, if you are one of the lucky ones who are there on the day maybe I'll see you!
(((hugs)))
Maz x

Holiday choices...

Hi guys, It's been sunny weather here for a few days!

It's made such a difference to the mood in the house!
I often find this is the case, grey days make for even greyer moods and a wee drop of sunshine seems to raise the spirits and lighten the load a little so...long may it continue! lol

Our SDS - self directed support or personalisation care package - what a label! It's really the new system that gives us some control with Coo's care and how his budget is spent and it seems to be opening up some new possibilites for us!

For the first time in years it could be possible for us to access some travel again! We've not been abroad in many years as it was just too expensive with Coo's unstable seizures, insurance was always very expensive, if they'd quote at all!
Sometimes travel insurance cost more than all the other holiday expenses put together! Usually this meant we just couldn't afford to go so we'd just stay at home in the U.K instead.

***It seems things are about to change for us!

With some support, plus a wee friendly push from our social work friend to try new experiences, added to the fact, we managed to find a medical insurance company who would insure Coo for less than the usual inflated rates, means...we've decided to spread our wings again and try a few days in Europe! Woo hoo!

I'm not sure where exactly we'll go yet but it'll be somewhere within Europe that's for sure. That way it's only a short flight and a lot easier for Coo. I guess the next step is to have a wee look around and see where we'd like to visit!
It's exciting times well for me anyways!
I guess some people take things like holidays and travel as run of the mill and expected but like most Carers, I view it very differently as a bit of a luxury and something to be prized!

I was really worried about switching to this new SDS sysem for our care package. I just didn't want to risk what we already had and maybe be worse off, not so much financially we'd have managed somehow but being left with less support than before was the real worry for us!

I'm so glad we stuck with all the SDS assessment hassles and those RAS (resource allocation system) teething troubles as it's proving to be a very positive experience! For the first time, in a long while, I honestly think our quality of life is improving and that's something I think we both had kinda given up hope on!

If the option of Self Directed Support comes your way, don't worry and stress about it, give it a try, it's really working well for us!

Happy days and sunshiney thoughts,
(((hugs)))
Maz x

Holidays and happy days...

Hi Guys, we've been away for a few days in the sun so it's been holidays and happy days too - woo hoo!

We went down to the borders at Dumfries and Galloway and spend a restful week lazing in the sun and just generally living life at a slower pace, it's been good for us and also fun!

Coo and I needed a wee break from all the stress that's been happening setting up the new SDS (self directed support), care system.  We've both struggled with this and now it's all agreed and things are in motion, it was time for a wee change of scene...

We stayed at Wigbay just around the bay from Stranraer and had fun exploring from Portpatrick - where we enjoyed a bonfire and firework display, through to Drummore and right down to Scotlands most southerly tip at the lighthouse on the Mull of Galloway!

Guess what?
They have a tea shop at what seems to be the top of the world!
It's perched right up high on the cliffs and has fabulous views and food!
What do you think?
Lashings of sticky toffee pudding and a wee cuppa right up on the clifftops?
 - I call that a Result! lol

While we were away, Coo kept relatively well, (well, no worse than usual!)  and Looby, Steven and baby Jessica came to stay for a few days too so it was kinda like a home from home too.
Best of all, as Looby was there, I managed to get a wee hand and some sleep when Coo was poorly.

I'm glad we had the opportunity to get away for a wee break, especially to such a lovely, tranquil place and I think it's done us both the world of good.
We both had a really restful and enjoyable time!

I hope you're enjoying some peaceful times where you are too!
(((hugs)))
Maz x

That AED see-saw again...

Hi guys, we're back on that dreaded AED (Anti-Epilepsy Drug) see-saw yet again.

Too much drugs in the bloodstream mean yet more seizures and then there's an unexplained dip with not enough drug and that means even more of them!

It seems we just can't get a break these days so just like these wee frogs it's a continual up-n-down kinda thing this week!

Thankfully things seem to be settling a little so I think, at last, we're starting to come out the other side, well, I hope so!

The new personalised care system is now up and running.
It seems to be working out ok and even though it's early days, I think it's going to be a better system for us - woo hoo!
All we need now is Coo to settle a little bit more and then we can start working on getting fit!
This summer, we decided to buy some bicycles with an aim to improve our fitness but Coo's been so unstable recently we've not managed to sort things out yet. It'll be fun picking some new cycles. I think Coo will enjoy checking out all the details and me? Well, I'll probably just pick a girly purple or pink one! lol

I hope the weather holds out long enough so we can get out on a bike ride so...
Lets hope for some sunshine!
Happy days,
Maz x

St Swithin...

Hi guys, Good old Saint Swithin was way off this time!
It was dry on his feast day so we had a fighting chance and I was hopeful but...no!
It's rained and rained and rained this week, we're practically washed out! lol

Never mind, the welly boots and brolly has been well used this summer! lol

I got drenched nipping down the garden for some strawberries earlier! Although I have to say...
It was worth it!
The wee alpine ones taste lovely and  best of all...there's millions of 'em out there so...woo hoo!

Just how are things growing where you are?
Here everything is really late this year!
My tomatoes are still non-existent! The plants are healthy and strong and the buds are coming out now but by this time last year, I was already munching them with salad! I guess we really haven't had enough sunshine at all.
I think they're on a go slow! lol

Let's hope August brings some sunshine or my wee tangy toms will all still be green and only any good for the chutney pan!

Coo's moods have settled now the Social Services review is over and thank God for that! I was really worried about him as things were getting difficult to manage. I mean, more moods and upsets for Coo, mean yet more seizures and it becomes a bit of a vicious circle!
He's bouncing back again now so yet another crisis has been averted and that's the important thing!

Now things are settling and Coo's more like his old self, we can take our time and plan what we really want to do with our additional budget.
It's a long time since we thought of such things and it's quite exciting really but...what to do!

Maybe some fun activities, some days out, a wee holiday or...
a combination of all three!
Who knows but whatever we decide let's hope the sun shines for us. One things for sure, it'll be an exciting time this year - Coo and I have not really had the chance to get out and about much and this new self-directed-support, managing your own care and activities could make a real difference for us!

I do hope you're having some sunshine where you are  or at the very least some sunshiney thoughts!
(((hugs)))
Maz x

Happy Saint Swithin's Day...

Hi Guys and a Happy Saint Swithin's Day!
Isn't Swithin's window pretty!
It's all apples and raindrops!

Old traditional proverb...

St. Swithin's day if thou dost rain
For forty days it will remain
St. Swithin's day if thou be fair
For forty days 'twill rain nae mair.

I hope it's true this time around as for the first day in weeks...we've had no rain! woo hoo!

I hope Saint Swithin's has been sunny and fair for you too!
(((hugs))) Maz x