My Carers Rights Day, Strategy, Nails & Networking...

Hi guys, my Carers Rights Day went really well and I had some fun too!

Luckily I had respite arranged for the day so I didn't need to do the usual crash and grab, top speed and rushed affair so could relax and enjoy things, in fact the whole day had a leisurely feel to it for a change!

I got over to the Carers Centre (it's a few towns away!) for ten o'clock and started the day with a nail job and not the usual kind for me (hammer, usually followed with sore fingers!) but the shiny, pretty fingernail type! While the nail lady shaped and painted them pretty, I had time for a wee think!
It's a long while since I made the time and had such a simple thing done for me. For some reason I got quite a kick out of it, I didn't think I would and I nearly didn't book a slot at all but I'm so glad I changed my mind - I felt really great afterwards!

It's so easy to just keep putting yourself last in the 'need to do list' and I just realised, I do it all the time! For Carers, there's always a big pull on your time and emotions, it's easy to forget to make time for you!
I mean, I could have used some respite hours and booked a pampering slot a fair few times over the last year but appointments, meetings, general busy-ness and Carer-life tasks, kinda got in the way!
so...
I've decided I need to try a bit harder!

It was Carers Rights Day so I'd more in mind than nice nails and lunch! There was a legal advisor on hand from the local lawyers office with some free advice so I had a meeting to at last begin the POA (Power of Attorney) process and never one to miss a chance to network and push Carer issues where I can! I managed to raise some concerns with both the Council's Carer Champion and head of Social Services! They're both nice guys who are interested and want to help Carers and people with disabilities so I'm confident they'll take the issues  forward so...watch this space!
Last and definitely not least...
Our Local Authority launched the Carers Strategy!

This is the strategy, written with the input and full involvement of Carers from our local area. Carers were involved, from the initial direction this document would take, right through the process and through the Carers Strategy Group, hopefully to the successful delivery of the services it holds!
It's a good strategy for Carers, it's in language people can easily understand but more importantly it offers good support and information! Will it be successful? Will it deliver? We will see!

So what were the day's highlights?

*I had some pampering and felt better for the experience!


*I raised issues with those in a position to address them and...I'll chase down answers too! lol

*Our Carers Strategy launched! That's the one other Carer friends and I helped shape!

 All in all, I had a good Carers Rights Day this year!
Hope you managed a wee time out too!
(((hugs)))
Maz x

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

Welfare Reform Impact Research, Carers, disability & that roller-coaster ride...

Hi guys, it's been a bit up and down again this week!

Remember I agreed to be involved and share our story with the Welfare Reform Impact Research people? Well today was the day! There were two researchers today.

Thankfully they were both friendly and easy to talk to and although there were a lot of questions to get through, it was a good experience. I felt they listened so far so good!

It's never easy being involved with this type of project but it's so important! Only by sharing our stories and honestly telling our Government just how badly current Welfare Reform changes are hurting disabled people and their Carers can we hope to find and shape a better way!

We had a bad night, there's been an increase in seizures too and Coo's developed a cough and temperature so I really wasn't surprised when our GP phone about the blood tests from last week. Seems there are yet more problems for Coo and I. The AED (Anti Epilepsy Drug) levels are up, the white cells are up and the blood calcium levels are on the low side too.
Coo will need more tests and the calcium levels will need to be monitored for now as for the Phenytoin (AED) levels? Well, he is now right out of the safe range and not for the first time - but an infection or for that matter, anything much else going wrong, really causes the levels to fluctuate!

Now he has a temperature and sniffle, we've decided to batten down the hatches and sit it out for a bit! If things deteriorate we'll adjust the doses again but it's not unheard of for things to settle so...for now we wait!

This time last week we were having a lovely respite day at Glasgow's Christmas Celebration and today? Coo's been asleep and seizing all afternoon! Being a Carer sure is a roller-coaster ride! I'm off to dig out my hard hat again as I've a feeling I'm going to need it!
Let's hope for some more settled times for us all!
(((hugs)))
Maz x

Good News, Good health and Good cheer...

Hi guys, it's been good news all the way this week!

Baby Jessica got the big heavy Spica Cast off...

It'll take some time, she's no mobility...yet...but that'll come, with time and patience - The main thing is the Spica cast is...all gone!

Coo was poorly all last week, stress is a major trigger and we were both so worried about baby Jessie it was bound to have an impact!

Thankfully this week, things have settled and been a bit more stable seizure wise so I guess it's a big...woo hoo all around!
Ages ago, long before we knew Jessica's Spica cast was coming off this week, we applied to the ballot for tickets to 'Glasgow's big Christmas Switch on Event' and this time, we were lucky!

With all that's been happening, I wasn't sure, we would be able to make it at all but things have fallen into place and we are  going to go - I'm so excited! lol



We'll use the Travelodge again, Coo's comfortable there and if things get too much, it's just around the corner for a pit-stop!
We're so grateful for our SDS (Self Directed Support) care package, it's what makes much needed timeouts like these possible!

We're going to wrap up warm, just hope it doesn't rain too much and if all else fails...drink lashings and lashings of Hot chocolate! Sounds like a plan to me! lol

I hope you manage to have some Christmas light fun where you are too!
Keep cozy!
(((hugs)))
Maz x

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

Carers, Flu jabs and the Neuro too...

Hi guys, How have things been this week?
Well, Coo was doing ok!
His temperature stayed down and despite a wee sniffle he felt on the up so...

This week, we did in fact get our flu-jabs done! While this usually means a few days at home and an increase in seizures for Coo, it also means we can hopefully, avoid nastier complications further down the line! For him, Flu usually means a major crisis and a prolonged admission to hospital.
In our case flu jabs are not an option...they're a must!

It's been all go here, we had a visit to Coo's Neurologist this week too! He's a real nice guy and always listens so Coo feels comfortable raising any issues with him.
Anyways, we've been concerned over the last few months as Coo's had a lot of muscle and joint pain. He has pain due to all the limb jerking during seizures...fair enough and he uses a muscular pain relief but he's been in a lot of pain lately so he decided to speak to the Neuro, just see what his thoughts, (if any) were, on the subject. Turns out he had a lot of thoughts and all drug related!

Long term drug therapy, especially poly-therapy, is not much good for anyone really and Coo's been on AED's (Anti Epilepsy Drugs), for over thirty years. It seems, amongst the many side effects of his meds are Osteoporosis and bone density problems! This may well be contributing to his current pain levels so I guess we have, yet something else, that now needs checking - with a bit of luck it'll only need a blood test!

I often quote...

Carers...
'We are all in the same boat so we each must take turns to paddle!' 

I'm paddling hard for the moment but it's sure nice when someone else lends a hand at the oars!

Stay strong and keep paddling your boat!
(((hugs)))
Maz x