Carers Rights Day...

Hi guys, Carers Rights day is almost upon us again, it's on Friday!

I guess, it's the right time to look back and see if, for Carers, anything has really changed!
Are we still fighting the same fight and struggling on alone or have we Carers gotten a better deal?
I really feel, that kinda depends on where you live and if your local Authority has embraced SDS (Self Directed Support) or not!

Coo and I have been lucky!

Where I live in Ayrshire, the Local Authority has been very pro-active and supportive so SDS is a reality here for over 50 families who agreed to test the water and try it on for size! The word from the Carers I've been in contact with? Well, it seems most have had a positive experience and this new way of providing care and support for both the disabled person and their family has worked well!

I've definitely found SDS a positive experience and to be totally honest, it's the most effective support Coo and I have ever had! Just the comfort in knowing help and assistance is there when we need it, not having to worry all the time about where funding will come from or even if there will be enough in the pot, has relieved a lot of pressure and stress. The flexibility that has allowed us respite breaks when things have been at their most difficult too, have made things a lot less stressful and easier to manage.

It's not so everywhere though! In fact it's really a bit of a mixed bag and that dreaded postcode lottery comes into play. On my Carers Scotland Committee team, I know Carers in Highland and in central areas, who have moved to SDS and are having a good experience too but too many Carers in other areas are still struggling on alone!

I've found the biggest strain this year has not been from the usual sources, neither health, caring nor disability - it's been from our own government and media! Just how sad is that!


The people we elected and trusted to support and care for the most vulnerable in our society have let us down! Their aggressive 'War on Welfare', their attempts to dismantle the much needed support and funding from our Welfare State system, has by far been the greatest struggle currently faced by Disabled people and their Carers!

Our Government and media seem to forget, we Carers are 'working' at least thirty-five hrs every week and we're paid £59 Carers Allowance,
(just over £1 an hour!) but we Carers save the government as much money as they'd need to fund another NHS!
Please try to remember this before you attach the horrid 'Benefits Scrounger' label!
Carers need support not scorn!

Keep faith in better days and keep strong!
(((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

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

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

Carers Week 2009...

Well, haven't I been busy!

lol Last year for Carers Week, I met with Scotland's health secretary Nicola Sturgeon, to try and raise Carers issues and this year well....I was on the...


Cool or what? LOL

The reporters came to our home to film on Tuesday and it was all edited and on the news for Friday night!

Coo wasn't well enough to be filmed but in any case he wouldn't have been keen, he's a bit quieter than me!

I only hope sharing my story helps other Carers push for better services and a bit of help.

Here's hoping,
maz x