Carers, IJB, Tenders and Easter...

Hi guys, it's been a busy week yet again and...Happy Easter!

I've been out with my local authority again, with both the Carers Tender and the shiny new IJB (Integrated Joint Board) - after a lot of hard work...Health and Social Care are now merged!

IJB...It's been an interesting process and I'm so glad, here at least, Carers and Service users were in from the off!
Our input is vital, we've been there with services, both health and social care ones and we know first hand what works well and often where some changes could make things easier and that is valuable!
I've said it before and it's so true...in order for things to work well, we need to continue to work together!
The Carers Tender...
How did I find it?
Well, long, tiring but very interesting too. It was a lot of work and a lot of paper and a lot of potential too! I'm content with the decision we reached so...now to get on and make sure those services meet the needs of our North Ayrshire Carers!

While I've been busy working away on the practical stuff of the last few weeks and keeping my pledge, making sure Carers voices are heard, the caring still continues too!
Coo's still real poorly, his seizure increase is still evident and we're struggling on. I'm so grateful for the support we have. Our SDS (Self Directed Support) care package means even though things are difficult at home, I can still manage to get out to meetings and continue with my plans. Sure I'm always aware Coo is poorly at home but I know he's safe and things will be fine while I'm busy.


I guess it's always a bit of struggle for Carers.
Being pulled in every direction is always difficult but it just shows how important proper support really is and just how much of a difference it can make for Carers.


Keep strong and keep speaking out -
Lets make sure Carers voices continue to be heard!
(((hugs)))
Maz x

Tenders, troubles & fun times too...

Hi guys, it's been a bit of a bumpy ride this week!

Poorly times...
Coo is still struggling
His cough went but his seizure increase has stayed put this time and he's back up to 15 seizures a night, totally shattered, moody and so sleepy during the daytime - never a good combo where sleep seizures are concerned!

Anyhow, we were starting to worry just what else was going on, when he developed of all things a toothache! Coo's dentist is lovely, he knows Coo's situation and how quickly things escalate for him so a quick phone call and a visit later, it turns out it's a dental problem this time! Poor Coo's now had the starts of a root-treatment, Ed (his Dentist) says, it looks like the tooth nerve's been dead for some time and caused some infection so...mystery solved this latest seizure increase is most probably down to a.... root cause - pardon the pun!
There's no point getting the bloods done - infection always affects the level of meds in his blood so we'll need to wait a few days, let things settle and start all over again!

Busy times...
It never rains but it pours - I agreed to be part of my local authority's Tender process. It's the tender for services for Carers & Young Carers in our area and it's important.

I truly feel we can only make things better by working together so Strategies, planning, commissioning or  tenders, Carers need to be involved at all levels and I just had to take up this opportunity!
I'm glad I agreed to be involved as it has been a really interesting process but my-oh-my, what a week! With Coo poorly, the increase in seizures and struggles surrounding it all and #SIB meetings too, this could not have been a more difficult time! On the plus side our (Self Directed Support) care package, allowed extra respite hours to let me complete this vital piece of work and it did create a bit of a diversion so...it all worked out fine in the end!

Fun times...
I'm dusting of my little black dress and digging out the heely shoes tomorrow as I've been invited out to the Provost Civic Pride Awards. I'm taking another Carer with me  and with my Carer friend Fiona along too, we'll have fun out in our posh frocks and networking to the max!

I'll let you know how it all goes!
(((hugs)))
Maz x

Struggles strivers and #SIB...

Hi guys, it's been an interesting week!

This week I've successfully avoided watching yet more T.V. programs surrounding 'Benefits' I've just about had enough of these so called reality shows!
I've decided to inject a positive slant instead so I'm banishing the negative labels of 'Skivers and Strivers'  and instead, I'm focusing on 'Strugglers and Strivers' - far nearer the mark especially where Carers are concerned.

Firstly this weeks struggles...
Where to start?

Ok, Coo's had an increased in seizures yet again and we were struggling. Then the usual, will we-won't we, increase the meds or sit tight for a bit and see how things go, began. In the end we decided to wait and see. Forty-eight hours later....he has a sniffle and a cough so crisis averted, at least we know the cause of the increase so it's...batten down the hatches, grab the hard hat and struggle on through!
Meantime...
The work is piling up. Between #SIB and a full on Tender process to negotiate, it would just need to be this week wouldn't it? Hey-ho it's always the way!
Onto the 'Strivers' part...
#SIB (Shadow Integration Board - Health & Social Care)
Here in North Ayrshire our board is really moving now. The agencies Local Authority, NHS, Third and Independent Sectors are all now on the same page and more importantly Carers and Services users are on that page too and not just as a foot-note either! We're right up there as equal partners! Gone are the days where services were 'developed and provided for Carers' - now we input and help write strategies and develop those vital services too and that can only be a good thing!

With heavy care responsibilities this week and the additional work-load too, I'm beginning too wind down and feel the need for sleep now! Thankfully it's a sleep night! Woo hoo! - our SDS (Self Directed Support) Care package, ensures I have regular sleep nights each week and I'm eternally grateful for that support - Lord knows how I lasted before - it sure wasn't easy!
It's not just the sleep really, that is so important but it's also the way it all enables me to keep going in other ways too. Without such support, I would not be able to fully contribute and I'd most probably still be isolated at home.
I know this level of support is not the same everywhere and there's still much to do in supporting Carers but thankfully, I feel we're on the right track at last!

Keep well, stay strong and....speak out where you can!
(((hugs)))
Maz x

Advisory Group, Carer Newspaper & 3T Carers ...

Hi guys, it's been a mixed bag kinda week...again!

Coo's been poorly again and we've mostly been home, although I did manage out to my meeting on Wednesday!
The Carers Advisory Group...

This is the group where Carers, local authority, NHS and third sector get around the table, discuss issues and look for solutions and a way forward - important stuff!

It's good Carers are now regarded as equal partners - well around here anyways!
Gone are the days where services were developed and delivered in a 'take it or leave it' approach, only Carers know what will truly work for them and it's never a one-size-fits-all kinda deal!
In recent years it's sure improved around here and lets hope it's improving elsewhere too!
The Carers Newspaper...

I've decide to highlight and post a link to the...
        Carer Newspaper.
Sometimes Wendy and the Chill 4 us Carers team include items from here and even if I'm not included - it's always a good read so...
Thank you Wendy!

Last but not least...The Three Towns Carers!

Even though things are not doing brilliantly here health-wise at the minute with Coo, thanks to our SDS (Self Directed Support) care package, I will still get out tomorrow and spend some time with other Carers. It's so important to have a wee time out, it may just seem like a cup of tea and a chat but it's so much more! In fact, it's vital for Carers to spend time together, share information, experience and advice and most important of all...have a laugh and for a wee while, turn off all the stress of caring. I'd be lost without them!
If you haven't already, dig up a local Carer group and give them a go, you may be pleasantly surprised at the warm welcome!
Stay strong
(((hugs)))
Maz x

Busy week Carers, Welfare Reform, Anniversary and PPF...

Hi guys yet again it's been a busy week!

Coo's just Coo - seizures and sleepy but still strumming happily along - he's been back on his guitar this week so things are surely on the up!
I've been out and about again!
PPF -  (NHS Patient Participation Forum)
On Tuesday I met a new group, our local PPF - well, it's not really a new group, I've been involved with them online for years but this week I met up with them face to face!
It was interesting and informative and as always, the real value is in sharing information and experiences. I really felt it was worthwhile being involved  - it's important people have a voice and raise issues and challenge where necessary.
Welfare Reform -
The latest Welfare Reform session for the Scottish Government conducted with researchers from Napier University went well. Sometimes it can be difficult sharing information, it's not always easy to open the box and examine things fully.

Health difficulties, disabilities and the current changes and challenges in our welfare system have brought their own brand of stresses for many disabled people and Carers and Coo and I are no exception!
It's really why I agreed to be involved with this three year project in the first place! It's important! I truly feel the research collected, will properly document just what did happened to the most vulnerable people in our society during one of the most turbulent and divisive periods in recent times and...I for one, want a proper record, taken from ordinary people and in their own words, accurately recorded!
We must all stand together and speak out strongly, whenever and wherever we can!
Happy news this week too...

It was our wedding anniversary this week. Thirty-one years - just where does the time go? lol
The weather was fine and bright so we decided to hop on a ferry to Arran...
It's a wonderful place for a visit and at any time of year! From museums, hill walking, cheese tasting and whisky distilling it's got the lot!
Just like Wallace and Gromit...we had a grand day out!
We sure had fun this week, I hope you have a wee bit fun too!
(((hugs)))
Maz x

Welfare Reform sessions Scottish Government...

Hi guys, it's that time again...
I think it's important to stand together and speak out when we can and with that in mind, I've agreed to keep involved with the Scottish Governments tracking of Welfare Reform.
I've now been involved with this for around two years and the next session is almost upon us.

A wee memory refresher...
Quote...

The aim of the study is to explore the impact of welfare changes over time on a range of households in Scotland. The project is being carried out by the Employment Research Institute, Edinburgh Napier University and the University of Stirling on behalf of the Scottish Government. 

 

I think it's important for people to speak out, share their experiences both good and bad and as both Carer and person with disabilities, Coo and I, have had to struggle through and find a way to navigate the recent sorry system of changes!
Firstly, the initial issues and stresses of the move over from Incapacity Benefit to ESA (Employment Support Allowance). Next, the seizures, stress and the hassles of coping with the ATOS people then last and by no means least, our struggle with 'Bedroom Tax' and securing a HDP (Housing Discretionary Payment). Both our MSP Margaret Burgess and MP Katy Clark helped us through what was a difficult time. Katy raised our case in the commons and we did get a reply from David Cameron PM.

I am dismayed the UK Government and media still continue to use their shameful rhetoric in relation to Welfare Reform. The 'Scroungers and Strivers' labels have stuck and only succeed in fuelling anti-disability feelings, further alienating disabled people and a continuing divide in our already fractured communities.

ATOS has gone but the stress and worry remain. We dread the continual stream of 'brown envelopes' from DWP that wing their way through our mail-box but I still honestly feel, most of the stress and issues created by this Welfare Reform process could have been avoided, if the policy had been planned and executed fairly in the first place!

It seems so incredibly unfair that most of the 'cuts' continue to fall disproportionately on families with disabilities and their Carers and it's important the true hardship people find themselves in, through no fault of their own is shown!
It's so very important to speak out if you get the chance!

I'll let you know how it all goes, stay strong as will I!
(((Hugs)))
Maz x

January Burns Day, Birthdays and Carer Business...

Hi guys, what happened to January? I turned around and it's just about gone!

Ok, what's been happening?
Well, Firstly...Happy Burns Day!

January 25th is a special day for us, not only is it Burns Day, it's Jessica's day too so...
Happy 3rd Birthday Jessie!
Not only did we have birthday cake and the usual treats but in honour of Rabbie sharing Jessie's special day (or the other way around!), we had haggis, tatties and neeps too -what a great wee family day!

Health...
Things are still a bit of a struggle here, Coo's just being Coo - loads of colds and sniffles about and loads of seizures too but on the whole he's fine and me? I had that wee health scare at Christmas, thankfully not a stroke after all (MRI was clear!) but I'm no further forward regarding what really happened and with around 18 weeks waiting time to see a Neurologist, I have a feeling this will run and run. Good thing is, the symptoms are no worse and we're coping so it's all fine!

Now to business...

It's good Carers are now involved through most practices and processes with our Local Authority. In fact it's a welcome change as it's not so long ago Carers were more or less told what services were available and had to try to make them work but...not anymore! From Carers Strategies, Advisory groups and support planning, we're involved and in the case of the SIB...we have a seat on the board! Changed days and that can only be a good thing!
Stay strong friends and keep fighting, we'll get there!
(((hugs)))
Maz x