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

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

Hard hats, PIP, DWP & Health hassles...

Hi guys what a time we've had here!
Where to start...ok, we'll start at the top...

It's been hard hat hell here! Coo's seizures spiralled out of control. At it's worst point this week, we were back up to 30 seizures a day and back on the dreaded rescue meds again...and just why was that? (pursed lips and sarky growl)...
Despite sending a barrow load of paperwork, copies of Coo's Social Services assessment of needs and four months worth of the dire seizure diary, a registration letter from our doctor (well...locum 1 yet another story!), and a supporting document from Coo's Neurologist too - now, you'd think that'd be enough wouldn't you? - but no! DWP/ATOS/Maximus/Capita or whatever they're currently calling themselves still decided they needed to face-to-face assess Coo and his disability! The stress triggered everything-and-then-some what a total nightmare! Anyhow, after a month of struggles dealing with the increase in seizures, moods and the rest, Friday and the DWP arrived at last. Thankfully the assessor was friendly and kind, spoke to Coo patiently and went over everything as quietly and calmly as possible - I think things will be ok, well I hope so but we've another 4 to 8 weeks to wait for a decision so we're still struggling on and making the best of things!

We need to work together!
Why oh why can't the DWP just ask you to sign permission, look in your medical file and speak to your consultant and save people with disabilities and their Carers from all the additional stress?
It would probably end up being a quicker more efficient way of doing things too but what do we know? eh?

If you're under review or moving from DLA to PIP get your info together, stay strong and try and fight your corner the best way you can!
((hugs))
Maz x

3 H's...Carers Health, DWP Hassles and Hanging on in there...

Hi guys, hope you've had a happy Christmas and are still feeling some Christmas cheer!

We've had some fun here!
We managed out to Coo's sister Diane's for Christmas dinner with all the family and we both had a lovely time too even with those 3 H's I mentioned in the mix we still managed to share some fun and laughter and just forget about things for a wee while!

#H1...Carers health well...
I've not been blogging much, typing still hurts and my pain levels are awful at the moment. I'm gutted my mobility is now effected, my ankles and knees are the worst and I kinda waddle like a duck at the moment but the feet splint thingies from NHS Ayrshire & Arran's Podiatry services are helping a little so every cloud! lol I'm still hoping things will improve and all the pills and jabs every week will come good in the end!
#H2...The dreaded DWP Hassle!
Oh no! This really has been total hell to deal with and at this time of year too - a happy Christmas kick from the Department of Works & Pensions! Now, don't get me wrong, I totally get why people need to be assessed to see if they are indeed ill and entitled to some financial help making it easier to manage their disability but I don't understand (and I don't think DWP do either!), the knock on effect the current system has for disabled people and their Carers!
So just what has gone wrong?
Well the 'invitation to change over from DLA to PIP' that one you just can't refuse! Came in the post.Within 48 hours, Coo's seizure activity flew right off the scale!
 It's been a very trying time for us both.

While Coo remains so stressed, we have been unable to stabilise his seizures so we're basically stuck at home for the time being but at least we're busy! Between filling in a 50 page PIP form (with arthritic painful hands I might add!), photocopying forty pages of seizure diary info and another forty odd pages of Coo's assessment of needs, next the power of attorney papers and lastly his ten page registration info from our doctors surgery, it's been tough!
#H3...Hanging on in there...
We're hoping by giving them all the information they need, maybe, just maybe, sense will prevail and Coo and I will be spared the further stress of a face to face interview. Past experience sadly tells us this attempt could be unsuccessful but we can but try! Who knows, they may listen!

One thing is for sure, we must stick together, shout loud when they get it wrong and ultimately, we must find a better way than the soul destroying system we have now. It's expensive to administer, ineffective and so unnecessary in so many cases!
I just hope for us, it all ends sooner rather than later and if you're currently in the same boat please find someone to take a turn and help you paddle!
Stay strong.
((hugs))
Maz x

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

#2 Carers Rights Day...What's changed this year?

Hi guys, looking back at my 'Carers Rights Day' post from last year...
http://mazcarer.blogspot.co.uk/2013/11/carers-rights-day.html
Has anything changed?
It's all still so very relevant and in some areas yes there's been changes but in so many important ones I'd have to say no!
SDS (Self Directed Support)
Our SDS care package, is still working well and for us a lot of the uncertainty, stress and struggles with the practical side of caring have been reduced and we're so grateful for the help and assistance we have but I'm very conscious, it's not so for most Carers and on that front I fear, this year there has been little movement.
DWP Welfare Reform
The issues surrounding Carers and Welfare Reform are still very much a worry for disabled people and their Carers and with the push continuing to hurt the most vulnerable in our society it seems likely this suffering is set to continue and isn't that a depressing thought!

I have really tried this year, tried to make sure Carers voices are heard and in the places where policy is influenced and made! For now, I really feel that's the only way we can begin to make any positive moves for change - so be it, Summit, Conference, policy or board meeting, I've pushed the real issues Carers face, in hopes those who make law and can positively influence things will understand and make the necessary changes!

Stay strong my friends, better days must surely be coming!
(((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 and Angels with only one wing...

Hi guys, yet again this wee quote has found me...

We are each of us angels, with only one wing. We can only fly by embracing each other.
Luciano De Crescenzo
It's such a pretty verse, I think it's so apt for Carers and I guess I just find it so very comforting. What's more, I seem to come upon it when I need it for some reason...Kismet I suppose or even divine intervention!

I honestly feel, it's by working together we achieve great things and however difficult things become...there's always a way, the trick is finding it! lol

So many of my Carer friends are struggling at the moment. The Welfare Reform laws and the hated 'Bedroom Tax' are biting hard for most disabled people and their Carers and it's causing such stress and hardship for people, who are at best in an already financially precarious position. Add this additional financial burden and stress, to the impact of caring full time for a loved one with complex health needs and it doesn't take a genius to work out it's a recipe for disaster! So just why doesn't our government see it too?
I'm trying not to be cynical but it's a damning indictment that the DWP took to Twitter today, to tell us all how fair their policy really is and how it's all so very necessary but for disabled people and Carers like me, struggling at the sharp end of these law changes, it's so very damaging, difficult and soul destroying at times!

Coo's still poorly but thanks to our SDS (Self Directed Support), Looby came to keep Coo company for the day and I made it up to Edinburgh as planned, for the 'Carers Forum on Welfare Reform' .

I'm glad I went, it's interesting to see how other areas are dealing with these changes too.
Wherever we find ourselves, we need to stand up and speak out for those who can't, learn to put differences aside and work together for change!

Stay strong where you are, don't give up whatever you do!
(((hugs)))
Maz x

ATOS ESA and sense prevails...

Hi guys, what's the old song? What a difference a day makes!

ATOS & DWP have backed down...Oh my gosh!
What a turn up for the books!

So just what happened to acheive such a reversal?
Yesterday we were told Coo would need to go for the dreaded ATOS, WCA (work capability assessment) and medical and today it's all changed! Well, after yesterday's news, I took some time to regroup and today it began...

I contacted both our GP and Coo's Neurologist at the hospital, to check they had been asked for and had submitted reports to the ATOS people - yes on both counts so far so good!

 

Done!

Next I phoned ATOS in Glasgow, mainly to formally request audio equipment be available at Coo's medical. If we were going to have to fight this, we'd need access to as much information as possible - I honestly feel, it's in everyones interest to get their assessment recorded and I'm eternally greatful for the help of our MP's who fought for this service!

Anyways, I gave Coo's details, covered the security stuff and requested the audio equipment and that's where things started to change!
It seems DWP and ATOS have now decided, they have enough information and will not now require Coo to attend a medical after all! It's possible our medical information was late arriving and an appointment was triggered automatically, who knows!

I'd like to think with all the evidence we sent and reports from both medical people involved in Coo's primary care that sense prevailed!
I am just so relieved we don't have to worry anymore.

 I'm glad too, for us, this was over sooner rather than later.

The fight still goes on though! There are too many disabled people and their Carers disproportionately adversely affected by this unfair process, we just can't forget about them!

At a recent meeting, somebody struck a chord with me, she was a wee elderly woman and she said 'if you stand with me, I'll stand with you' and she's right!

We must keep strong and stand up for one another!
(((hugs)))
Maz x

ESA, ATOS and the fight begins...

Hi guys, well it seems, the waiting time is over, we've received a reply from ESA (the Employment and Support or DWP people).

Coo must go for a medical to check he is not fit to work! Now, while this is not totally unexpected, I mean, every day the media is full of people who are clearly disabled and struggling and are assessed as fit to work - it's such a mess and it's all so wrong!

 

I had hope to avoid this scenario with Coo. God knows, we did all we could to try to stop this happening. We filled in the form fully, shared and disclosed information we really didn't need to by sending comprehensive seizure diaries and copies of both his Social Services assessment of needs and care plan in the hope, this would be enough 'evidence' and...sense would prevail  - but no! We must present Coo (in whatever condition he is currently in!), for assessment by somebody who probably won't understand and...we must jump through the hoops - all over again!

Coo's seizure levels have been spiralling since we recieved the ESA50 form and already it's been a struggle so God alone knows how we will cope with this further ESA onslaught!
The worse thing of all is, it's so very debilitation for both Coo and I, it adds pressure and stress to an already very difficult to manage situation and...it just doesn't work and is all so avoidable!
It's not possible to assess a hidden disability like Coo's in this way!

I honestly feel it's a waste of time, asking Coo if he can walk, talk, hold a pen or take a message is just so ineffective. Far better to access information from both his GP and his Neurologist, the people who truly know how Coo's disability effects every aspect of his life. -

They are the experts not the DWP!

 

He's not fit to work, he really isn't! Now, the DWP already accept he needs a Carer - they pay me a Carers Allowance (paultry sum mind you but that's a fight for another day!) so with 15 seizures a day on average, continuing complex care needs and input from Social Services via a SDS (Self Directed Support) care package, you'd think the Department of Work & Pensions, could work this out, well...wouldn't you?
I'm so annoyed and disappointed too I guess, I truly thought well, hoped too that sense would prevail and we'd be ok.

We will be ok. We will have to fight yet again but as my granny used to say - 'What doesn't kill us makes us stronger!'
Here's to staying strong!
(((hugs)))
Maz