Carers review, SDS & more

Hi Guys, new year is almost upon us! Where's the year gone? I think it's time for a wee look back so...here goes!

I used to get a bit stressed at the thought of a new year coming. I'd worry about the things I said I'd do and just didn't get around to. You know the kind of thing...lose a few pounds in weight, hold onto a few of the other kind of pounds and save for a rainy day...that kinda thing! lol

I still think, the most important thing being a Carer has taught me, is to slow down a bit and just take a breath! The world still turns just the same while you catch your breath a bit. Mainly caring has taught me just to count my blessings a little and be thankful for making it through the last year safely in the first place! LOL

I guess, most people take that kind a thing for granted...good health, I mean!
Whilst you are well and busy hustling and bustling about your life at such a great pace, you never need to give a second thought to such things. You can plan well into the future for work, holidays or pretty much anything you fancy and it's only when something happens to you or your loved ones that you really need to stop and think at all!

I think that's probably what I miss most. All the planning and looking forward to things, the certainty and order of it all. It sure was a lot easier when finance was the only issue to getting things done and we could both climb a mountain if we wanted to! On the other hand, this slower pace of life has it's upside too, we have both learned how to adapt and find a way - there always is one - it's just finding it that's the tricky part!

Looking back, we've been on a bit of a journey this last year. If I'm honest 2019 hasn't been the best year. We've both struggled with health issues and sometimes I begin to wonder just who is caring for who but there have been some good times too...really!
Struggles...
Ok, we've had problems with the meds - nothing new there!

Coo's seizure level's still really high at around 250 a month and he's currently stressing as there's some more surgery looming on the horizon, add to the mix we're still supporting my dad and my RA (Rheumatoid Arthritis) is still a bit of a struggle, it's hectic but we're hanging on it there! There's been lots of stress but other things have buoyed us up!

** Coo's no worse and not nearly as bad as the dreadful 30 seizures a day we've previously coped with! There are still crisis points and things are not brilliant by any means but they're better than they were and that's a bonus!

** With help, our quality of life has improved!
Our SDS (Self Directed Support) care package continues to make such a difference! I've blogged about some of the doors this has opened for Coo and I. Proper support really works, it can be life changing for people and strangely, it's not always the big expensive things that make the difference either, it's having the flexibility to make things work for you that's the key!

I've had some respite a wee while away with the girls - I didn't realise how much I needed a time out but it made such a difference, I came back feeling all refreshed and positive!

I made it up to Edinburgh for the Carers Parliament too and Coo and I managed a wee holiday, just some time out, some days away but so much fun!

Looking back, by far the most fun we had was with our cycles!

Who knew we'd enjoy cycling so much - I needed to adapt mine as I didn't want to give up cycling without a fight!
I'm hoping when Coo's well enough, the weather allows us and fingers crossed, my wrists hold up, we'll managed to get out for a wee while in the fresh air again. Coo's had lots of problems with infection and high/low white cells for the last few months, it's been tests, hospitals and issues galore and usually that would mean, avoid crowds and stay home but...not this time, we're hoping a wee while out on our bikes in the fresh air will lift our spirits and we'll feel the benefits too!

**The main three highlights of 2019?
Well, the first has to be the parliament visit!

I really felt so upbeat at the time, that things will change for Carers and in my heart, I still do, progress has been slow but again Scotland is leading the way with the new Carers Supplement - it's a small step but in the right direction!
There's still a ways to go, that is true but slowly, things are beginning to change and for the better!

**Another highlight is our wee holiday!
It's always stressful and difficult travelling with Coo but we did managed to get away for a few days on a proper holiday! What a wonderful experience this was for us both and without the next 2019 highlight (our SDS package), this would have remained an out of reach dream for both of us!

**The other main highlight? Continuing support with SDS?
Why was I ever afraid to move to SDS? We had such a struggle with this, I suppose, on reflection, we were just scared to risk the support we already had! It was and continues to be the best move we have ever made. It was the devil to set-up but has since proved it's weight in gold!

...so it's almost goodbye 2019! I have to say, it's been a bit of a roller-coaster ride at times. The caring is tough.
With health issues acquired along the way it's never easy but I'm feeling more supported and in a happier place than I've been in a long time so that's a bonus for 2020 - the roaring twenties beginning!
I'm holding strong and remaining optomistic about the new year ahead!

I hope you're feeling happy too and...
'a' the best when it comes - Slainte Mhath!

(((hugs)))
Maz x

Carers Parliament & Summit, Hospitals and proper support

Hi guys, I've been busy again this month and it's been all go!
Hospital hopping...

This week we managed the Ayrshire hospital hop tour - Ayrshire Central with my Dad and then a hop across to both University Ayr and Crosshouse hospitals with Coo. I'm hoping to just stay away from them for a wee while now we've done the tour! Sometimes caring just all comes together with a rush of clinical appointments and so it was this week!

I had to cancel meetings and rearrange care but thankfully we got there in the end!

Sometimes forward planning goes right out the window but working together usually pulls things back on track and proper support makes all the difference in the world as it enables some choice and control so I don't feel overwhelmed by it all and that's changed days!
Carers Parliament...
The Carers Parliament went well.
It's probably the only time where carers from all over Scotland get to come together, speak to those in power who can really make changes (Joe FitzPatrick MSP) was the speaker this time. Carers also share good practice, find out what's happening other places and generally go back and push for better services in there own area! What's not to like?
SDS (self directed support)...
SDS being in place means I can take off up to Edinburgh, stay over and join with other carers at the Parliament knowing Coo is well cared for and just fine at home, previously I just wouldn't have been able to go at all!
The uptake of SDS in relatively low and that's a shame considering all the positives as when it's implemented as intended, really person centred, it can be totally life changing!
Carers Scotland Summit...
Tom Arthur MSP co-convenor of cross-party on carers was the speaker this time.

It seems there's a lot of good work happening but it's not well known by carers in general so we'll need to push for more information filtering through if this is going to work more effectively...so we did...push I mean!
I truly feel it's only by working together we can really change things for carers!
Stay strong friends
((hugs))
Maz.

Carers, Self Directed Support, Parliament and 'the bucket man'

Hi guys I've not blogged much recently.
My fingers still hurt pretty badly with the rheumatoid issues and I've not found software that works for me - I guess they software companies haven't mastered understanding the Scottish west coast dialect...yet! lol
So just what's been happening? 

Well, Coo took a bit of a tumble last month, he had some major seizure activity, his blood drug levels were off the scale again and in the end a chest infection was to blame!
We dug out the hard hats and flak jackets, waited out the storm and just hung on in there and after a week back in anti-bio-land, things slowly improved...yeah, he's back on the up and it was just in time!

The Hydro and the Bucket man...
Thanks to our SDS (Self Directed Support) care package, Coo and I managed to cross something big off our bucket list! We were so excited about this one and it couldn't have come at a better time! We had both been so poorly recently and it was a bit touch and go but there was no way we were gonna miss the chance to see Jean Michel Jarre on his one night only spectacular show at the Hydro in Glasgow (bet he's not been called a bucket man before!
What a night! What music! What a show!
We had an awesome time! Can you tell? Ok, we had to take things easy, plan and prepare and build in some rest times too but we did it! woo hoo!
Care & Support North Ayrshire

 SDS is so brilliant! When it works, it works really well and has the potential to transform lives. Things that previously were just not possible and seemed far out of reach become that much more achievable and can make lives meaningful again - it can truly be the difference between existing and living!

So just how else does SDS support both Carer and people with disabilities? 
Well, on to my wee jaunt up to Edinburgh for the Carers Parliament, our SDS funding covers the cost of replacement care and effectively frees me up to go and do things that are important to and for me!

Like speaking at the Carers Parliament, presenting at a conference and joining with others at Carers Scotland or even a wee day away on my own for a bit of respite and if it's possible to make sure our Carer voices are heard too...then job's a good 'un!

I truly believe it's only by really working together we can ever get things right for Carers and Self Directed Support is only the first step but it can be a big leap in the right direction!
(((hugs)))
Maz x

Scotland's 4th Carers Parliament, Carena Event...

Hi guys, what a week and it's not over yet!

Carers Parliament...
Carers from all over Scotland made their way to Edinburgh for the 4th Carers Parliament. Two Carers from each of the 73 Scottish Parliamentary constituencies attend to make sure as many Carer voices are heard as possible and this year, members of the Welsh Assembly attended too. They want to set-up their own Carers Parliament in Wales so yet again here in Scotland, with our forward thinking and ethos of working together, we have influenced and hopefully helped Carers elsewhere too - I do hope so!
What a great day it was!
Our First Minister was there

Not only to thank Carers for their contribution in our society but to inform on policy and update on the new Carers Bill currently before Parliament. It's good Carers have such a high profile forum, it's taken a long time but now Carers are involved in shaping policy and really helping change things for the better and long may it continue!

Carena...
Remember the community website I was involved with?
Well, it's going from strength to strength! Today they had a great exhibition and showcase event over 150 stalls, people, groups and organisations, offering a range of information and supports available all over North Ayrshire and it was busy, busy, busy! I wasn't working at a stall today as Coo wanted to go along and check things out for himself so we mingled, picked up some freebies and learned a thing or two!

Carena is not only a website, it's all over facebook and just about anywhere people need some information on services and community supports, offering info on anything from community events to job opportunities and more! It really is a great community resource especially for Carers or anyone who uses social services here in North Ayrshire so...go Carena!

It's been busy time but fun too and I've learned something new too - you know what they say...every day's a school day! lol
Hope you're doing ok where you are.
(((hugs)))
Maz x 

Carers Parliament, challenges and positives...

Hi guys, I've been busy this week, speaking out for Carers - I do try!lol On Tuesday, with other Carers, I made the trek from the coast up to Edinburgh for the third Carers Parliament!

Just who was there from our government?
Carers Scotland delivered the day and Alex Neil - Cabinet Secretary for Health & Wellbeing and Michael Matheson - Public Health Minister, were the speakers. They both spoke well and shared lots of information relevant to Carers but the most powerful part of the day was where Carers shared their own stories, their issues and the struggles they had experienced trying to seek out proper care and support! No-one got angry, it was dignified and controlled but the pain and struggle was all so tangible in the room - we'd all been there at some point or were still struggling on now!

We need to speak out and just tell it how it is!
I used a Respite day to go and I'm lucky, our SDS (Self Directed Support) care package, gives me the support I need to have a time out, some Respite and be able to continue doing things that are important to and for me but I know it's very different for lots of other Carers.
Fifteen minutes networking when we arrived at the parliament, showed that SDS is working well in some areas like mine and...how shall we put it? Far less impressively in other areas around Scotland! I challenged the minister on why it's been interpreted so differently by the local authorities, there's no consistency and he agreed!

He assured the Carers present, our government is on the case, they are closely monitoring and reviewing all the local authorities in Scotland and just how they are (or are not!) implementing SDS and I hope they do sort this out!

When SDS works, and I mean really works, it can be so wonderful!
Really opening doors for Carers, doors that have previously been shut tight! - Respite, time out, equipment, help at home, even just time to think, draw breath and regroup for the next onslaught. It really can be the difference between, coping and continuing and giving up.
Caring on alone is a scary place. Having to make decisions for someone else, all the time, when you don't really know what the best course of actions are, is really scary too and a helping hand, a bit of support and a little kindness along the way makes all the difference in the world!

I'm glad I got to go to the Carers Parliament and speak out - it's important for Carers to come together like this, to talk, share experiences both good and bad and to challenge our government when necessary!
It's only by working together will we ever have a chance to change things!

Keep strong!
(((hugs)))
Maz x

Carers Roller coaster, Indyref, Carers Parliament...

Hi guys, what a roller-coaster few weeks!

I'm feeling wrung out and kinda like an old dish mop! lol

but where to start?
Ok, hard hat time...
Things have been difficult for Coo and I, his AED (Anti Epilepsy drugs), are too high in his blood stream so we've been tweaking the doses, battening down the hatches and just hoping things will settle a little! Multiple daily seizures are never easy but we're both hanging on in there!

#Indyref...
I've been wrapped up in Scotland's Independence referendum!
For me, it wasn't a huge desire to leave the UK.

More of a burning desire to do things differently, find a better way and in the process, hopefully improve peoples lives in general.
I've always voted - it's important to me and I previously always voted Labour too but in more recent years, I've felt a pull towards something different.
ATOS, austerity cuts and the continuing struggle for Carers and disabled people just to get by, have left me so sad and down-heartened at times, more of the same was unthinkable! I guess in the end, it was the announced further austerity cuts from Westminster that made my mind up.
I wanted something else, the chance to hope for a new start and hope for a better way too so I voted yes!

There's no other way to put it...We lost!

There were a lot of us (45% in fact), who wanted to try but, in the end, it was not to be. I can't believe how deeply I felt when the results came in, kinda flat and sad and I suppose so very unlike optimistic me!

I hope the promised powers do come to the Scottish Parliament or I and many others both 'Yes and No' voters will feel extremely cheated - I guess we will see!

In all this current political turmoil, the Carers Parliament on October 8th should be interesting!

One thing's for sure, I'm hoping for more settled times!
Keep strong friends,
(((hugs)))
Maz x

My Carer poems...

Hi guys, with time spent at home again, I've been in a reflective mood and...with Carers Week upon us, I dug around the blog for my Carer poems....here!

Having just received the report from the 'Carers' Parliament 2013' through the post, I've settled on this one, it's the one I wrote and delivered at the first Carers Rally in Edinburgh over five years ago - I can't believe it's been that long!
Check me out in the fetching 'Tartan and high-vis' vest! lol

‘Just a little Peace’

We don’t need any help, we’re managing fine,
Pile it on…pile it on…never look for a sign.
Carers work on with not much of a break,
They continue to care for a loved ones sake.

As the caring goes on and the load does increase,
God send us some respite, just a little peace.
Some time to go walking, kicking leaves in the park,
even just sleeping when everything’s dark.
The caring continues deep into the night,
we struggle and strive and continue to fight.
For help it is out there or so we are told,
but trying to find it...you need to be bold.

Some time for a break, to do something new.
Maybe just sit still and take time for you.
Reading a book or watching a show,
Finish something, not having to go.
As the caring goes on and the load does increase,
God send us some respite, just a little peace.

It’s not easy to spot us, we look just like you.
Carers are working and constantly too.
When others go home at the end of the day,
We still keep on working, minus the pay.
Please listen now, it’s so easy to find,
Yourself as a Carer and stuck in this bind.
Nobody knows how, it just happens unplanned,
as quick as that jar with the small grains of sand.

Heed what we say as we carry on,
caring and struggling way past the dawn.
we know lots of Carers who live in this way,
it’s not what they asked for, this role that they play.

Some time to themselves it’s not much to expect.
It’s down to government and Scottish Exec.
Some help with this task that never seems to cease.
as caring goes on and the load does so increase,
please send them some respite and just a little peace…

It still kinda covers all that I want to say. We've a long way still to go!
Keep strong my friends,
(((hugs)))
Maz

Research Welfare Reform impact ...

Hi guys, I'm busy again and back on the campaign trail!
This time, I've agreed for the next three years, to take part in a research program regarding the effects of Welfare Reform.

 

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 disabled person, Coo and I, have had to struggle through and find a way to navigate the recent sorry system of changes!
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 and their...'you need a medical' - 'no you don't'...'yes you do' approach!
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 ashamed of the rhetoric the UK Government and media have used in relation to Welfare Reform. The 'Scroungers and Strivers' rhetoric has only succeeded in fuelling anti-disability feelings, further alienating disabled people and dividing our communities.

I 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' have fallen 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!
(((hugs)))
Maz x

Scotlands Carers Parliament, difficult decisions and Respite too...

Hi guys, it's been a busy week!

The sun has returned so it's also been a sunnier, more positive time too! Isn't if funny how a little sunshine can brighten the mood? I always find grey days make for even greyer moods so I like to catch the best of the sunshine anytime it pops up really!

The Carers Parliament is on Tuesday, it's the second time Carers from all over Scotland have come together to discuss the issues they face and lobby our government for a better deal.
I'm not making it to the Parliament this time as I'm...double booked!

I found out Jesus Christ Superstar was coming to the new Hydro in Glasgow.
It's only playing for one night and Coo and I have wanted to go for years so I booked it way back in January!


Once this years Carers Parliament date was confirmed, I knew it would be difficult to say the least! I thought hard about things, tried to find a way around it, to jam it all into the box and I nearly tried to do both too but...sense prevailed! lol
I decided, if I cancelled and went to the Parliament, Coo would be disappointed and for that matter, I would too! I eventually made my mind up and decided not to try for a Parliament place this year. It was more important for Coo and I to have our respite break and continue with our plans.

I had a wonderful time at the Carers Parliament last year! I spoke out, shared a little of Coo and I's journey so far and pushed for changes I felt were important for all Carers!
So...
Good luck and a big 'go get 'em' to the Carers from all over Scotland who are making their way up to Edinburgh on Tuesday.
Have a great day and have a brilliant Carers Parliament!
(((hugs)))
Maz x

Carers Scotland today...

Hi guys, I've been busy today!

It was 2013's first meeting of the Carers Scotland Committee so it was a wee trip upto Glasgow! Pity there's never time to actually visit the city though but....business is business! lol
It was great to catch up with the other Carers, share new information and work through the latest issues surrounding Carers.

Well, just what did come up today?

Welfare reform and the so called 'Bedroom Tax' - There's lots of Carers struggling to get to grips with these two! Scotlands next Carers Parliament, SDS, Respite (or lack of it as the case may be!) and the usual business of the day for a busy charity - a bit of everything really!

I think it's important Carers get the chance to be part of the process and are right in there at the beginning, when the strategies are written. I'm glad too, our wee group are able to travel from all over Scotland to share their views and help things along their way!

I guess, we gotta support one another and just keep at it!
Slowly the barriers are being chipped away and Carers are finding proper support and respite. In an ideal world it shouldn't be this way, but while it is...we've all got to stay strong and just keep knocking down those barriers where we can!

Stay strong my friends - we'll get there!
(((hugs)))
Maz x

Review time already...#9

Hi guys, Social Services have been in touch and it seems it's review time again!
Where has the time gone?
We've been using the SDS - Self Directed Support- care package since last July and just how have things been? Well, that's an easy one...it's been really great!

Coo and I have had more opportunities than ever before and for the first time in a long while, we've had really good support. It's brought some sunshine and we've honestly had some fun!


SDS has been a positive experience for us!
I've had more respite than ever before, the support and flexibility has meant both Coo and I have been able to make things really work for us. It's a long time since we felt so in control and that's been so very empowering!
Things people take for granted like days out, in the past, were always difficult for us. Coo would struggle with travel and once he started to tire, it was so very difficult to keep him awake and seizure free until we could return home. We both usually ended the day feeling very stressed and it kinda took the pleasure away - it was usually easier just to stay at home!

Having the option to go for a day out and then have a sleep-over too has made such a difference! It's meant we can both enjoy the day now, without worrying about how we're going to manage the return journey - what a difference!

The additional respite has made such an impact for me as I've managed to go places on my own and be involved with things that are important to me - like the Carers Parliament for one!

I used some of the additonal P.A. hours for Looby to come stay over with Coo, this allowed me to travel up to Edinburgh the night before and be well rested and able to fully contribute while I was there and Coo and I both managed some new experiences, we had some time away too ! We loved the Pandas at Edinburgh Zoo and had a wonderful time visiting the museums in Glasgow too!

I know most people do these kind of activities every day and without much planning or thought but it's not so for most Carers and having proper support can make all the difference in the world!
***and the SDS review?
Well, I know how we feel things have gone during the last seven months with SDS so...now we just have to wait and see if our Local Authority agree. I hope they feel it's the best way forward too and continue our funding!
Fingers (and toes) crossed things go ok!
(((hugs)))
Maz x

A look back over 2012...

Hi Guys, new year is almost upon us!
Where has the year went? I think it's time for a wee look back...

I used to get a bit stressed at the thought of a new year coming, worry about the things I said I'd do and just didn't get around to. You know the kind of thing...lose a few pounds in weight, hold onto a few of the other kind of pounds and save for a rainy day...that kinda thing! lol
I still think, the most important thing being a Carer has taught me, is to slow down a bit and just take a breath! The world still turns just the same while you catch your breath a bit. Mainly it's taught me just to count my blessings a little and be thankful for making it through the last year safely in the first place! LOL

I guess, most people take that kind a thing for granted...good health, I mean!
While you are well and busy hustling and bustling about your life at such a great pace, you never need to give a second thought to such things. You can plan well into the future for work, holidays or pretty much anything you fancy and it's only when something happens to you or your loved ones that you really need to stop and think at all!

I think that's probably what I miss most. All the planning and looking forward to things, the certainty and order of it all. It sure was a lot easier when finance was the only issue to getting things done and we could both climb a mountain if we wanted to!
On the other hand, this slower pace of life has it's upside too! We have both learned how to adapt and find a way - there always is one - it's just finding it that's the tricky part! lol

Looking back, we've been on a bit of a journey this last year.
2012 hasn't been a bad year, it's been a good one...really!
We've had some problems with meds and side effects and the seizure level's still really high at around 250 a month but we're managing! There's been lots of stress but other things have buoyed us up too!

** Coo's no worse and not nearly as bad as the dreadful 30 siezures a day all through 2007 - 8 and most of 2009! There are still crisis points and things are not brilliant by any means but they're better than they were and that's a bonus!

** With help, our quality of life has improved!

Over the last year, we've switched to a SDS (Self Directed Support) care package and it's made such a difference! I've blogged about some of the doors this has opened for Coo and I.
Strangely, it's not always the big expensive things that make the difference either, it's having the flexibility to make things work for you that's the key!

I've had some respite, we've managed to have a wee holiday and some time out with some days away too but by far the most fun we've had is with the two cycles we bought!
Who knew we'd enjoy cycling so much! lol
When Coo's well enough (and weather has allowed us!), we've managed to get out for a wee while in the fresh air. Coo's had lots of problems with infection and high/low white cells for the last few months and usually that would mean, avoid crowds and stay home but...not this time,  we managed a wee while out on our bikes in the fresh air and felt the benefit for it too!

I'm still having fun with crafts and in the garden too although my tomato growing was severely hampered this summer as we had very little sunshine! boo! hiss!

**The main three highlights of 2012?
Well, the first has to be the parliament visit!
I really felt so upbeat at the time, that things will change for Carers and in my heart, I still do!
There's a ways to go, that is true but slowly, things are beginning to change and for the better!

**Another highlight is our wee holiday!
After so many years I managed to go with Coo on a proper holiday! What a wonderful experience this was for us both and without the next 2012 highlight (our SDS package), this would have remained an out of reach dream for both of us!

**The other main highlight moving to SDS?
It has to be the change! Well the push even ('cause we were scared to risk the support we had!), to move over to SDS! Gosh that was a good move! why was I worried?
I guess it was fear of the unknown and risking the help we already had - what if they said no also the re-assessments and the stress - it was the devil to set-up but has since proved it's weight in gold!

...so it's almost goodbye 2012! I have to say, I'm feeling more supported and in a happier place than I've been in a long time and I'll remember 2012 as being one of the good years!
That said, I'm happy and optomistic about the new year ahead!

I hope you're feeling happy too and...
'a' the best when it comes - Slainte Mhath!

(((hugs)))
Maz x

Thoughts on the first Carers Parliament...

Hi guys, I was asked for some thoughts on the recent Carers Parliament so I'm going to share my them here...

 

Thoughts on Scotland’s 1st Carers Parliament…

I’m glad I got a place!

Others were not so fortunate so it made it more important to speak out if given the chance!
Coming from the coast, it was agreed the Carers from our area would travel up together so we left the night before and stayed the night in Edinburgh. This was a good idea, it gave us time to get to know one another a little bit too.

I felt nervous and excited on the actual day, I also felt a responsibility to try and raise the issues I knew were important to Carers across Scotland! We, the lucky ones who got a place, really needed to hold our nerve and find our voice - tell it how it really is for Carers!

There was a buzz about the place, people were excited and there was an air of expectancy too. People really didn’t hold back, they wanted to share their stories and highlight what does and doesn’t work for Carers in today’s Scotland.

I think the greatest impact of the day came when Carers not only asked their questions in the chamber but shared a little bit of their life, the struggles but also the triumphs when things worked well.

I struggled on alone for over twenty years before accessing some help and respite – it was a difficult time. Meeting other Carers at the Parliament, those who are still struggling on alone with little respite or assistance brought it all crashing back to me. Just how isolating and life limiting long term, things can be, for Carers themselves.

I came away with a feeling of satisfaction, we were listened to, ministers did respond positively.

This was tempered with a feeling of bitter-sweet, I’m no longer in the unsupported dark days in my caring role, I have help now but other Carers are still struggling in darkness with little help or respite, that left me incredibly sad, there’s still such a long way to go.

 

It was a wonderful day. It raised awareness of Carer issues and hopefully opened the door for further changes that will benefit all Carers.

 

Maz x

http://www.scottish.parliament.uk/newsandmediacentre/55355.aspx

Pat's Petition...

Hi guys, more on Pat's Petition...

Over the last year, my Carer friend Pat has been working hard, speaking out for Carers and disabled people!

It's a worrying time!
Welfare reform is upon us and our government had cut hard and deeply. It seems Carers and people with disabilities have been dis-proportionately targeted in these benefit cuts and thankfully people like Pat have chosen to speak out....

Pat Onions has submitted an e-petition to the government website.
Pat is blind and Pat is also a carer. When we asked her why she submitted this petition she said -

We were determined to attend the Hardest Hit rally in Edinburgh. Determined, in spite of disability, to stand with the others who had made the long and difficult journey. Determined to show we were united as one voice against the vicious cuts we are all enduring. We knew there were many thousands who couldn’t make it. Disability, ill health, providing care, or cost would prevent them coming.   - We made it!

More on Pat's Petition:

http://carerwatch.com/reform/?p=83

If you've not already signed the petition, there's still time!

(((hugs)))
Maz x

Carers Parliament...

Hi Guys! A wee update on the Carers Parliament...

I think October 1st was a good day for Carers. Over 180 Carers went to the Scottish Parliament and shared the Carers story. They spoke of the issues they had just managing to live and continue to cope day to day in most cases.

Carers at Parliament 1st October 2012

Here's the link to the debate: http://www.scottish.parliament.uk/newsandmediacentre/55354.aspx

It's published on  he Scottish Parliament website and I'm at around 40 -50 minutes in (debating chamber part 1).
I was in the morning debate, I explained that I'd been at both ends of the spectrum, being totally unsupported and struggling on alone for over twenty years, then through the long journey to where we are now with our Direct Payment and SDS to a feeling of value and support being in place.

I hope my message was clear, we need legislation!
It's not fair and should never be based on how supportive your Local Authority is or even your postcode! All Carers need effective support and access to respite on a regular basis and it should be their right!
I hate the way Carers usually have to fight for everything and at a time when they're feeling under pressure and really low it's just not acceptable they are left floundering around searching for help!

I saw some Carers I met a little over three years ago, when we held the last 'Carers Poverty Protest' in Edinburgh. Worryingly, where things had improved for me and Coo with our Direct Payments and SDS set-up, things had not improved at all for them and they were still struggling on alone even now three years on!

The lasting impression I came away with from the first Carers Parliament is...

• While things are improving for some Carers, myself included, there remains so much more to be done!
• The vast majority of Carers attending on the day did not have adequate support in place or any access to regular respite, or even any respite at all!
• Infact some Carers admitted, if the Scottish Parliament had not paid for replacement care for the day, they would not have been able to attend and speak out at all!
• Respite is still out of the majority of Carers reach!

We really still have a ways to go don't we  and we must keep the pressure on that's for sure!
(((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

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

Coo's arm...

Hi guys, Coo's mishap is still a problem!

We saw the doctor today for Coo's usual blood tests.
While we were there, he had a look at his poorly arm - it's painful and now developed a bit of a clicking sound when he moves the elbow joint, well Coo never does things by halfs! lol

The up-shot is, he's hurt it during a seizure and needs to go to the A & E.
As our GP puts it so aptly...
"I do try me best but I 'aint got x-ray eyes!" He is a bit of a character, our doctor don't you think?
I guess, with all the scrapes he's seen Coo and I through over the years he's more of a friend than just our doctor!

Anyway, Coo's decided to wait - he's never very kean on visiting A & E! and our hospital is quite far away and Friday nights there are usually bedlam and best avoided if at all possible!
His reasoning is...one more day won't hurt things and it's his choice I suppose!

Hey-ho, looks like another hospital visit is definately on the go tomorrow!

Wish us luck and a speedy in-and-out too! lol
(((hugs)))
Maz x

Carers and votes...

Hi Guys and happy election day!

What do you think?
Will a change of government change things for Britain's unpaid family Carers?
Who knows, I guess time will tell!

I will vote. I always do as knowing the hardship people endured so we can all vote makes it important to me. I guess all those history bytes on the sufferagettes from years gone by, have done their job and stuck fast in my memory! LOL

I like to think things will change for us Carers and sooner rather than later. I hope we do see some advances in both respite and services and the woefully inadequate Carers Allowance, especially for our pensioner Carers as caring can only get more difficult as you become aged yourself!

I guess we'll see what tomorrow brings government wise and healthwise?
Well...thankfully things are a bit better here!
Coo's still struggling but things are settling a bit!
He's getting his bloods done again today so hopefully the drug levels will be in or close to the safe range this time!

I hope things are fairly settled where you are too!

Love,
maz x

Carer Poems...

Hi guys, I mentioned in my 2009 relection post, I'd had my poems published with funding from the N.H.S.
More information here, it's to help find hidden Carers and encourage them to seek out some help and support any way they can!
Here's one of my poems from the booklet and it's kinda apt that it's here on a web blog as it's about Carers supporting each other on the Internet!


Carers Connect…

I am a Carer and someone’s wife,
The person I care for still shares my life.
We’ve been through the wars my loved one and me,
It seems such a long time so far back to see.

When first you’re caring it’s all raw and new,
lots of appointments and hospitals too.
In early days you still hope for a cure,
but as time keeps going hopes get fewer and fewer.

Pills and potions giving anything a try,
therapies and treatments to help you get by.
Nothing is working and time still goes on,
Keep struggling and striving into each dawn.

When meeting friends who in years you’ve not saw,
They ask how things are but talking is raw.
They can’t understand and what support can they show,
of an lifestyle we hope they won’t ever need to know.

Information is power, we all need to know,
best ways of coping, for help where to go.
‘Selfish Pigs Guide’* is a good book I read,
it changed me completely, the things that it said.

It told about Carers, people like me,
millions all out there, why couldn’t I see…
I’m not on my own, lots of Carers I’ve met,
They chat and connect via the Internet.

It takes some time to build confidence too,
And state, I’m a Carer’ and that’s what I do.
It’s not who I am but it is a big part.
Carers keep caring body, soul and heart.

*The Selfish Pigs Guide to Caring is written by Hugh Marriott It's a wonderful book if you're new or even not so new to caring.
I hope you get a chance to read it or borrow it from the local library, honestly it's so worth the effort!

maz x