Carers, Support, DWP & HSCP

 Hi guys it's so long since I blogged but I'm drawn here in times of stress so here we are again!

I'm still caring for my husband Coo (he has poorly controlled Epilepsy, multiple seizures every day), it's a struggle but we get there!

Usually I keep pretty upbeat. I'm just so used to keeping all those plates spinning all of the time and dodging in between the many moments of crisis! I guess most Carers live this precarious lifestyle, in the end we kinda don't have much choice!
Amongst the usual meds, appointments and health issues we've had DWP knocking at our door with the dreaded migration across to Universal Credit. 

How stressful has this been? Wow - we knew it was never going to be easy but WOW! It's been a total roller-coaster. Stress levels are through the roof, Coos seizure activity has escalated and things have been just awful. Coping with 8 or 10 seizures a day isn't easy but upwards of 15 and todays 20 is just so much harder! We're coping but the stress levels need to even out and please God this process is completed soon! 

The one ray of  sunshine is Donna, the worker from North Ayrshire Money Matters team, who has been supporting us. She has been a wee diamond and has helped us navigate this latest hurdle with kindness and patience. Thank goodness we had some help! I really feel for people who are struggling with this process alone and if that's you, please seek some help!

It's when things are difficult we truly need to dig deep and just keep on going but when help is at hand it just removes some of that pressure and makes it all so much easier. We are blessed with some great support. Carers Gateway have provided a much needed diversion with some timeout and respite days over the last few stressful weeks and our HSCP (Health & Social Care Partnership) have continued to provide an SDS (Self directed support) care package which supports us both and just enables caring at home to continue. Without this support it would not be sustainable anymore. If you're in this position (I was for many years), please reach out! I did, eventually and it's made all the difference for us both!

Stay strong as will I, surely more settled times are coming!

((hugs))

Maz

A lifetime caring #CarersWeek

 Hi guys, it's such a long time since I blogged but #Carers Week has inspired me again.

I'm hoping by sharing our journey other carers will self identify and ask for help. Don't wait the 20 odd years I did, do it now!

I always hope as each year rolls by that things are improving for our carers, who are working hard day in and day out just keeping going and sometimes in the most difficult of circumstances. 

Caring long term...

I've been effectively caring for my whole adult life - I just didn't know it for the longest time. Like most carers I just got on with it and like the swan gliding along the water, nobody really saw or even knew how hard it really was frantically paddling underneath the surface just to keep it all going! Little sleep, snatched where I could, nursing and coping with multiple daily seizures, raising our kids in the midst of the chaos and trying desperately to make ends meet financially - a hard life and sadly one that resonates and is still all too common for many carers. 

Carer Pressures... 

The worst of times is three fold really, one is dealing with disabilities and serious health issues coming at you from all directions and usually all needing immediate attention, another is the business of 'caring' the forms, the DWP, the appointments, the phone calls and the stress and that's before you add in the essential care needed every day just to keep things going! The third is the feeling of not feeling validated and valued by society in general. I found this really difficult for the longest time especially when the press and government started to wage war on people living on benefits and call #carers like me economically inactive! Shame on them! Carers work harder than everyone else, they don't clock off at the end of the day. They don't have sick leave or paid holidays and most seldom have any respite either. It took me over twenty years to seek help and even then it was on the back of a horrendous crisis where Coo was having 30 seizures a day for a 6 months period. We were living in pyjamas and struggling on day after day until I just couldn't sustain things any more and went to social services. Thank God I did! Help was out there, we were listened too and we did get help!

Carers Week...

I used to cry at #carers week. Events and day trips were offered but I could never go! There was no replacement care and Coo just couldn't be left at all. Life was enclosed and small. Everything was stressful and tense all the time as we drifted between appointments, hospitals, clinics and home. It was such a difficult, dark time for us both in so many ways. Fast forward a few years and things changed, we had to hit rock bottom before we found any help but it was out there. Isn't it sad that we just didn't know! Why is that? We really need to reach out more, try and break down those barriers!

SDS (Self Directed Support)...

SDS has been a game changer for us. It's been running for a long time, first with Direct Payments and then the move over to SDS a more person centred approach and it is! Our care package and I say 'our' as we both benefit from the support it provides. Coo has Looby our P.A. and that means I can sleep during the week and get some proper rest as I know he's fine, she will deal with all the noise, mess, chaos and seizure activity and I'll come back fresher tomorrow so we can all live to fight another day!

Here we are a few years ago sharing some of our story

Please if you are caring long term and it's a lot, don't be afraid to look for help. There's so many negative stories out there but there is also help and support too so reach out!

Take care of you too

((hugs)) Maz 

Still Caring, involved, struggling and coping!

Hi guys, it's been a while hasn't it!
I'm still hanging on in there - I seldom type now as the Rheumatoid Arthritis takes over but I'm still in there alive kicking and still caring!

Caring has increased, for us both... 

Coo's seizure pattern is erratic at best but we manage and just take each day as it comes.

Steadily my rheumatoid issues have taken over and Coo is helping me with buttons, fasteners, knobs, all the fiddly things and...well you get the picture and I'm still managing around all the seizure activity - it is what it is but I sometimes wonder just who is caring for who!

SDS...

Our SDS care package is very much life changing - I can still get out, be involved with meetings and do things that are important to and for me and I think that's the main advantage of jumping through all the hoops to set it up in the first place!

Health and Social Care...

We had a paper at our last meeting - HSCP (Health and Social Care Partnership) on carers and short breaks and the new carers support plan and as people find out more about it and things are agreed with carers - isn't it just great that the carer rep is able to be fully involved as SDS (Self Directed Support) is already in place - isn't that how it should be everywhere? I know it isn't but it should be!

I still feel it's only by truly working together we can really change things for carers and I guess that's why I try to keep my pledge and make sure carers voices are heard!
Keep strong!
((hugs))
Maz x

Still caring, challenging and carrying on...

Hi guys, it's been months since I blogged!
I guess I kinda fell off the radar a bit when my mum died, I kept going throught the motions caring for Coo and picking up the support for my dad too and I guess, something had to give!
I don't think I really dealt with my grief, well how do you, where do you even begin? especially whist caring for someone else already and taking on even more caring responsiblities!
Carer Health
I suppose it's just taken some time to regroup but I'm doing ok!
My own health took a bit of a tumble with everything that's happened.

My Rheumatiod issues have continued and I'm swallowing pills daily (more than Coo - which I never even thought possible!) and jabbing a Metoject pen every week - but I think I'm coming back up at last!

Self Directed Support
Our SDS has enabled me to have much needed support, timeout to grieve and just enable me to find my way again and keep going and for that I'm eternally thankful. I wish it were so for all carers but sadly, it still seems a bit of a post code lottery where SDS is concerned but I'm still hopeful this will change moving forwards!

Carer Challenges 
Even during this difficult time, I've needed to stay involved with Carers Scotland and my local Health & Social Care Partnership I like to make sure #carers voices are heard and wherever possible I do! lol

I'm so heartened Scotland's shiney new Social Security is shaping up to be a more caring agency than the one we have prevously endured with DWP (Department of Work and Pensions).

I have never agreed the best way forward was Austerity, sigma and fear and with a strap line of Dignity, Fairness and Respect, this has to be a major improvement and that being said, I've been interviewed for The National newspaper, on the new Carers Allowance Supplement coming to those carers in Scotland who currently receiving Carers Allowance. Whilst this is a huge step in the right direction, there remains so much to still be done - Carers work...and they work really hard, with very little support with the main 3 H's...Help - Health - Holidays!
Let's start making them a priority for all our Carers!

Keep strong as will I
((hugs))
Maz x

DWP Stress and health hassles - the peace didn't last long!

Hi guys, what a mess this month has been!
Remember a few weeks back when I blogged about how our DWP hassles were over for a while at least? Well, the reprieve lasted four weeks exactly and we're back on that treadmill yet again!

ESA have come calling...Arrrrrgggghh!
Honestly and in the circumstances, what is the point of even more assessments and only weeks apart?  This must be costing a fortune in real terms processing costs and I'm less than impressed can you tell?

So just what has gone wrong?
Well, the issues are two-fold!
1. DWP don't share information the departments don't speak to one another is one issue and that needs resolving! The continual vicious circle of  DWP's making people relive their disability with frequent regularity, serves and achieves no positive purpose and has to stop - we're all getting wearier and sicker throughout this abysmal process!
- and the latest incompetent mess ...  
2. Our GP practice which is now directly managed by NHS Ayrshire & Arran and is mostly staffed with locum doctors, has not returned any and I mean -ANY- DWP paperwork since April!
The DWP's current health care assessors have confirmed an assessment is now imminent for Coo as the GP did not respond or return the necessary paperwork! Just how many patients have been failed here? How many have been put through additional stress and assessments unnecessarily? Totally unacceptable situation and all so avoidable!

Coo's stress levels are up and his seizure activity is way off the scale - we got a call from ADOC (our out of hours NHS services), his drug levels have spiked and things are difficult so I reckon the last thing we needed was another injection of yet more stress in the mix! - it's just not good enough!
Typical for Carers - it's all more work and more stress but it has to be done so I've contacted Dr Tyagi - (Coo's Neurologist), who's a great guy and always supportive so least we've got the difficult health bit sorted out, well, we've got a plan anyhow!
I've asked my Health & Social Care Partnership to try and improve this situation quickly and I've a phone consultation with our practice manager- this won't help us this time around but it hopefully should help other patients caught up in this right royal mess - when there are issues, we need to keep working together!

I often blog that we are all in the same boat so must take turns to paddle but it seems we've been paddling really hard this last few months Coo and I, dear God, we must surely be due a break from the oars soon!

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

PIP, Carers Week, SDS & IJB...

Hi guys, it's such a while since I blogged, my hands still hurt when typing and I've not found software that fully understands my Scottish twang...yet! lol

So what's been happening?
PIP...
Well, our hassles with DWP and PIP (personal independence payments) are over - well for a while at least! An assessor visited our home to save further disruption and upset for Coo and seemed to understand the issues of coping with such complex needs and thankfully, things went smoothly this time. It's such a relief it's finally over as we've both been so stressed with this process hanging over us for the last few months. Hopefully things will calm down a little now and we can get back to normal...well normal for us that is! lol

Carers Week...
Carers Week is easier for me to enjoy these days SDS (Self Directed Support) being in place makes the world of difference! Regardless of how Coo is feeling (within reason!) my plans seldom need to be cancelled and if I want to pop over to Irvine to the Carers Centre for a 'posh tea party' or a wander in the park it's ok...I can go and so I did!

North Ayrshire Carers Centre Irvine. (Facebook)

Here are some Three Towns Carers with two of our newly elected local Councillors Jean and Davina...they like a wee posh cuppa too!

Media Interview...
Look out for me in Caring Magazine next time! I gave an interview on North Ayrshire's Carers Appreciation card - it's a wee thank you for carers and among other things, gets them some discounts on local goods and services. The interview started out about our carer card and then grew arms and legs as I shared some of Coo and I's journey so it'll be interesting to see how it all comes out in the wash or the print for that matter! mega lols

IJB, Health and Social Care Partnership...

After all the recent changes, campaigning and elections, we welcomed new members and...it's all hands on deck and back to work for our IJB (Integrated Joint Board).
 
 Our new Carers Champion..

Councillor Christina Larsen is our new North Ayrshire Carers Champion and has joined us on the IJB so with new councillors and a champion who are carers themselves, we should have the best of chances in making sure carers voices are heard! I honestly feel, it's only by working together we can really achieve change for all carers!
Keep strong!
(((hugs)))
Maz x

Struggles, Stresses & Shingles...

Hi guys, yet another stressful month here!
Stresses...
Still no decision from DWP on his PIP claim/assessment so things with Coo have been a blast...again! The stress, health hassles and continuing seizure spiral sure took it's toll and Coo's AED's (Anti Epilepsy drugs) hit toxic levels last week.

We had blood tests done to check things in the afternoon and by nightfall, ADOC - the out of hours NHS services - were on the phone with the toxic news and a 'reduce the meds now' message! We were back on that dreaded AED drugs see-saw again!
Our already leaky boat, just got a great big bit more leaky - we coped or I thought we had. We know the drill, drop doses, contact the Neuro and let him know we're struggling, hole up at home -I call it hard hat and flak jacket time- and wait it out!

Coo's neurologist, Dr Tyagi's great! We've known him for ten years, he's patient and kind and really listens to him, he's an all around great guy! He sorts an emergency appointment and between us we sort out a plan of action and begin to move on!
Shingles...
Blood results are better this week so panic over you'd think? NO!
I got poorly with the shingles! What the heck!?! I'm seldom proper ill! I think it was probably stress related and a mixture of everything going on. Thankfully I'm on the mend now and Coo's doing better too so result...woo hoo!

That circle of support is so important for Carers especially when they are poorly!
We're lucky the SDS (Self Directed Support) care package, kicked in seamlessly and Looby - (our PA) came to stay for an extra few nights until I felt a bit better and we all lived to tell the tale! lol

I think that's really the difference it makes when Health & Social Care get it right! Carers have some much needed help and feel supported, they recover quicker and are able to cope with the situation and from an economic point of view, costly hospital admissions are avoided too as with proper support it's all managed that much easier at home!
**It would have been so much more difficult coping without it that's for sure!**

I'm hoping for a more restful time...a few weeks stress free would be nice for us all though wouldn't it!
Stay strong
((hugs))
Maz x

#CarersWeek Time outs and Troubles...

Hi guys, it's Carers Week!
So far I've managed a wee trip up to Glasgow Science Centre with my wee Three Towns Carers. They were so kind and offered us a fully supported trip! Woo hoo - result!
I've a historic walk planned for tomorrow around old Irvine's Harbour area which sounds good too so that's the fun bit...what's the troubles then?

All those balls, juggling again...

Well, I've already been at a meeting yesterday with our PPF (Patient Participation Forum) and I've another today - a follow-up one and I agreed to at the last minute! It's on shaping services for older people and complex needs and I've another stacked up for tomorrow with the Health & Social Care 'Performance and Audit'! All very valuable and all equally important and in theory do-able but and here's the rub...Coo has taken another tumble!
I should have saw it coming, his AED's (Anti Epilepsy Drugs) were too high in his system two weeks ago so he's had to reduce the dose. Now all seemed fine, well fine for Coo that is, around 10 seizures a night but last night's been a bit of a trial! He's seized every 20 minutes since two a.m. and...of all weeks, it would have to be this one - Carers Week, where I'm a bit stretched as it is!
Typical how Caring kinda gets in the way and just when you think you have it ticking along and manageable? Bang! Something happens to remind you again, just how fragile the balancing act all really is!

Aw well, it is what it is!
At least I have some support in place. Our SDS (Self Directed Support) Care Package, does ensure I have some sleep and additional respite care to at least enable me to function and continue mostly as planned so I will make my meetings and most of the fun stuff that's important too!
Gone are the days where it felt the whole world's cancelled and just staying home was the order of the day!
Now-a-days, Looby comes to keep Coo company and life goes on!

As for my own health hassles?  More bloods tomorrow! You gotta see the funny side...His 'n' Hers blood test appointments?!? That's a whole new area- even for us!lol
So the health hassles/self management? Still a work in progress but...I've parked them for this week! lol
Anyway, keep strong, I hope you have some support where you are and are managing to find some Carer week fun too!
(((hugs)))
Maz x

still hanging on in there...

Hi guys, I've not been posting much recently we've had health hassles on all fronts!
Coo is still poorly so we're living quietly for the moment and my wrist/arm/shoulder pain is rumbling on and I gotta say, I'm now getting just a tad fed-up with the whole thing!
I tried to chase up my Rheumatology appointment  (I was referred in December), just to say I'd accept a cancellation and guess what?

I have no referral -apparently it got lost in transit! Here in Ayrshire & Arran, Consultant referrals are paper based -or snail mail to you and I!- between our two local hospitals Crosshouse & Ayr and mine? well, it got lost!
I have to say I'm not impressed with this latest development and I took to twitter and said so with a #unimpressed too!
I'm  hopeful, now I've alerted them to the fact it is indeed 'lost' they will get on and sort it out and an appointment will arrive soon! I guess we shall see!

Carers Scotland...
Health issues aside, I've still been busy with the Carers Scotland Committee, especially now Scotland's new Carers Bill  is at last making it's mark in the parliament!

This bill has the potential to make things so much better for Scotland's Carers!
We just need to be strong and make sure it delivers!


Health & Social Care Integration...
Isn't it ironic, I'm so committed to our Health and Social Care Partnership here in Ayrshire & Arran that I sit on the board and always speak out strongly for our Carers and...my own recent NHS experience has been so very less than expected?!? Disappointed? Yes...but not down and out...yet!

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

Events Review, Carena, #HSCP Engagement, Aids & Adapts...

Hi guys what a time of it we've had!
Ok, where to start! It's been busy that's for sure!

First up...
The Carena event at the Magnum Centre Irvine...
Coo was well enough to go and I thought he'd like it so...off we went! The plan was to be there around 10 o'clock but after a bad night seizure-wise it was nearer noon but we got there in the end!

So just how was it?
Busy! - over 130 stalls, from community and support groups to services and providers and all working in our own local area, who knew that many were out there all offering services and all basically just wanting to help!
This type of exhibition event is really valuable, especially for Carers as often people just don't know what is out there. Sometimes it's support from a wee local group that offers a few precious hours respite that is really all that's needed and is just enough to make caring easier and keep things going that little bit longer!

Next...
The HSCP - (Health & Social Care Partnership) Engagement Event at the Hallmark Hotel Irvine...

Firstly we were late! Coordinating half a dozen Carers from the three towns area over to Irvine was not as easy or as timely as it could have been! lol That said it was great! The members of the Three Towns Carers group who managed to get there (eventually) ranged in ages from early thirties to our Gwen at eighty-four years young! We've all been caring long term so you could say, there was a wealth of experiences to share and...share we did!

Between us we hit most of the work shops, if not all of them and we were pretty vocal on what we wanted from the partnership and just how we felt things should be!
Incidentally Carers have always wanted more joined up services where people and departments 'talk' to one another. Many is the time we have felt like that wee pinball bouncing around each and every way trying to find some help. It was never easy that's for sure! This new partnership way of working has the potential to be different, I guess we shall see!
Our Carers were well impressed with Jim and Annie's 'Fairer Scotland' workshop.
I guess, for most, with the best will in the world, finding yourself in a caring role full-time is not particularly fair! It kinda struck a chord and they really opened up about what is so unfair at the moment and their thoughts on how it could be so much better for Carers - once they started they didn't want to stop and that was just great!

Lastly...
Review of Aids and Adaptations services...
This was totally different!
An appreciative enquiry...Mmmm well, what can I say?
It was different that's for sure!
I'm more of a warts and all kinda person and like to hear a really balanced view both good practice and uplifting case studies but also I've found there's real value and balance in hearing where things have gone not so well and with Carers and services users around the table it could have been a great listening and learning experience for all, now that been said, it was still a worthwhile event!

People did share their experience and sometimes it is good to hear about where things are working well and services are delivering and helping people.
It's so important Carers and Service Users continue to be involved in every aspect of our services from planning and procurement to finance, provision and especially review! In most cases, we know what is working and how with a little bit of a tweak it could be made better too!

Health and Social Care affects and is for everyone - sometimes you just don't know that yet! An accident or illness is all it takes and then you need to find out pretty quickly just how good your local services are so if you get a chance to influence those who really can change things...grab it! I truly believe it's only by working together we can change things for the better for everyone!

Keep strong my friends as will I,
(((hugs)))
Maz x