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

Hopes and Hello's to 2015...

Hi guys and....

I wonder what 2015 will hold for Carers, just what would your wish list be?

I have two things on my list this year -

 

*I'd like legislation to help Carers get the support they need!

 

Carers don't really ask for much, they'd just like to once in a while, be able to access things most people take for granted ever day - time to sleep, a wee while to themselves away from caring or maybe even some Respite, dare I say a proper break! and why shouldn't they have a little piece of life to themselves?

Carers and SDS...

It's apparent the dreaded post-code lottery still exists as some areas have embraced SDS (Self Directed Support) more than others and their Carers have benefited from the changes. Other area are still dragging their heels or are making only a half-hearted attempt at SDS and that's a shame as I've found being more in control of care, respite and generally having more of a say in planning and deciding just what care and support will work best for us, to been so very empowering!

 

The other thing on my wish list?

 

Please stop the current almighty 'media-fest' on the poor and vulnerable in our society!

It's all so unfair!

Nobody chooses to be ill, nobody decides one day to be disabled and nobody sure as heck says 'When I grow up, I'd like to be an unpaid Carer'. Well do they? No!!

Being a Carer and coping every day with issues most people would find challenging at best, is hard enough, without our media whipping up a hornets nest around benefits and those who claim them! All that 'strivers and scroungers' media rhetoric has really hurt us this year and it's all so unnecessary!

Carers are benefits claimants but we are not unemployed, we're far from it! Carers Allowance is the lowest benefit and a Carer must be caring 35+ hours every week to claim it!

Please think before you attach a label to another person, things are seldom as they seem!

We must stand together - I'm hoping for a more tolerant society and I think we'll only achieve it by truly sharing the facts and dispelling those nasty, hurtful media myths!

 

Stay strong my friends,

(((hugs)))

Maz x

Happy days, Hospitals and Carer Thoughts...

Hi guys, did everyone have a happy Christmas? Ho ho ho!

We had a lovely day!
We made it for dinner at Coo's sisters and a great time was had by all!
We're still struggling along with the usual health hassles but everything went well on the day and for that we're mightily thankful!

The cheerful, festive feelings didn't last long though and we were at the hospital for yet another Christmas time - my MRI arrived on the horizon. I suppose it was better done sooner rather than later but I'm just fed up of the whole situation already!
I've discovered I'm not a particularly good patient.

I really hate being on the cared for side of the equation and can sympathise with Coo...it's down right rotten! Now, I'm not sure if it's the continuous appointments, meds hassles and bloods with Coo over the years or not but having lived it so long with someone else, I just don't seem able to muster up the energy to go through it all myself - I feel kinda battle hardened even though I've never really been ill myself at all! Does that make sense?
Who knows, maybe it's just par for the course for most Carers!
Anyhow, The symptoms are no worse, they're no better either...but they're no worse! We're both coping ok and I've survived the first round of tests so...now we wait!

2014 has been a great year!

Health-wise it's been challenging but we've been so blessed in other ways too! Our grand-daughter Jessie's surgeries went well, her walking is improving all the time! A new wee grand-baby came along too! Wee Islay arrived in October, she has similar hip problems as Jessie but they'll fix and she's bonny, hale, healthy and happy!
All the buzz with the commonwealth games and my wee stint with the Baton gave us a major feel good factor too so all-in-all it has been a good year this time around!

We're ok and I hope you're doing ok where you are too!
(((hugs)))
Maz x

Health issues, Carers & SDS...

Hi guys, it's been a very difficult week, Coo's is still poorly, we're waiting for blood and x-ray results and to cap it all I ended up in A&E myself.

I had numbness and tingle in my hand and face for over a week, I had no pain so wasn't that concerned but I caved into pressure from family, got a last minute cancellation and saw our doctor. Fully expecting a quick once over and maybe a prescription or even better an...it's fine don't worry...but no - I had to go to A&E and wait and wait!

I won't go into all the details here and now - I think that's a post for a stronger day- all I'll say is, the whole A&E experience fell very short of the quality of care I had expected. Waiting times so in excess of current guidelines, I could have cried in frustration! I'm not exactly sure what I'm going to do about this yet but that's a fight for another day, not today!

By contrast, hospital care itself, leaving aside the eight and a half hours wait in A&E, was caring, friendly and excellent quality and for that, I am so very thankful as it restored my faith a little. The staff we're open, friendly, tried to make my stay and as a Carer, the need for it to be over and me out of there as quickly as possible work but dear-oh-dear what an experience!

Thankfully our SDS (Self Directed Support) care package kicked in seamlessly, while I was admitted, Looby came to stay an extra night & day with Coo and this really meant, I wasn't worried so much about how things were faring at home and that so helped!

Thankfully my CT scan was clear, I need an MRI and I've agreed to have it done as an out-patient but for now I'm just trying to gather some strength, re-group and re-assess things a little.

I'm ok and we're coping!
(((hugs)))
Maz x

Christmas trees, Carers and happy time-outs...

Hi guys, Christmas is definitely upon us!

I guess, I can deny it no longer! The lights and Christmas trees are going up all around me too so yup...I guess it's here! lol

The last month has been a real struggle again. Coo is still so very poorly and we've been mostly at home, living quietly. The infection he picked up around the time of his flu-jab, just didn't go away. No matter what we tried from cough and cold remedies, right up to and including anti-biotics - nothing made any difference what-so-ever! The infection continued, the seizures spiralled and we were back on that roller-coaster ride again!
Land sakes...what a month!

So what have I been up to then?
Well, apart from coping with Coo that is! I've been busy, with my wee Carer Group. Even when things are difficult, it's important to spend time with other Carers, they know just what it's like and can really support one another and...here are some of our wee group!

We were at a  local Christmas Fayre on Saturday fundraising for our group. This wee day is important for us as it means we can have wee days out and lunch throughout the year.
Now, that might not seem much but for lot's of Carers it's a real life-line, a window to the outside world and just a wee time-out away from caring!

One such day is tomorrow - the group are going to Cardwell Bay!

Its nice, especially this time of year, it'll have snow flakes, trees, twinkly lights and tinsel all around... and...I'm  going!
I'm one of the lucky ones and have an SDS (Self Directed Support) care package in place so our PA Looby, will come stay with Coo, I'll know he's safe and I will still get to go enjoy it all with the others, forget about things for a wee, happy, while!
I know it's not so for lot's of other Carers, I struggled on alone for decades before we made the switch and got some proper help in place. I  only wish more Carers had such good support too.

Stay strong friends,
(((hugs)))
Maz x