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

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

Carers Roller coaster, Indyref, Carers Parliament...

Hi guys, what a roller-coaster few weeks!

I'm feeling wrung out and kinda like an old dish mop! lol

but where to start?
Ok, hard hat time...
Things have been difficult for Coo and I, his AED (Anti Epilepsy drugs), are too high in his blood stream so we've been tweaking the doses, battening down the hatches and just hoping things will settle a little! Multiple daily seizures are never easy but we're both hanging on in there!

#Indyref...
I've been wrapped up in Scotland's Independence referendum!
For me, it wasn't a huge desire to leave the UK.

More of a burning desire to do things differently, find a better way and in the process, hopefully improve peoples lives in general.
I've always voted - it's important to me and I previously always voted Labour too but in more recent years, I've felt a pull towards something different.
ATOS, austerity cuts and the continuing struggle for Carers and disabled people just to get by, have left me so sad and down-heartened at times, more of the same was unthinkable! I guess in the end, it was the announced further austerity cuts from Westminster that made my mind up.
I wanted something else, the chance to hope for a new start and hope for a better way too so I voted yes!

There's no other way to put it...We lost!

There were a lot of us (45% in fact), who wanted to try but, in the end, it was not to be. I can't believe how deeply I felt when the results came in, kinda flat and sad and I suppose so very unlike optimistic me!

I hope the promised powers do come to the Scottish Parliament or I and many others both 'Yes and No' voters will feel extremely cheated - I guess we will see!

In all this current political turmoil, the Carers Parliament on October 8th should be interesting!

One thing's for sure, I'm hoping for more settled times!
Keep strong friends,
(((hugs)))
Maz x

Caring, Harping, Strategies & ATOS...

Hi guys, after all the rushing about last week, it's been so quiet here the last few days!

Coo's been poorly again so we've been mostly at home and after all the busy-ness of last week that's probably not a bad thing and it's given me time to catch my breath, regroup and chill for a bit! I did manage to get out to my wee Carer meeting on Monday though!
 Looby came to keep Coo company and I headed out for a wee chat and a cuppa with my 3 Towns Carers.
It's always good to spend time with other Carers no matter how tired you are!
It gives me a wee bit of a boost being with others who know how it really is, they don't judge but they do offer solutions and a bit of laugh along the way too!

While I've been home, I've taken some time out harping!
I tend to reach for my harp when I'm feeling a bit tired or even a bit over-whelmed and need a wee boost and it usually does the trick!
I  love music and I think it's therapeutic but who knows, all I can say is...it sure works for me!

Carers Advisory Group...

I'm busy with a new group later this week.
It's with my Local Authority, NHS and other partners and I agreed to be part of this one as their Carer Strategy is a good one and I really feel having experienced Carers involved from the off, is the best way to ensure everything offered in the new Strategy is actually delivered!

ATOS...

With Coo being poorly, sadly, I didn't make it up to Glasgow this week for the latest Demo. against ATOS Healthcare.
This company has cost us (and many other families with disabilities!) many a sleepless night! We stressed majorly over their fiasco surrounding Coo's on and off need to travel for assessment with them. One minute he was to go and another it was not necessary, they just couldn't make their mind up. In the end it got sorted but not without a lot of stress, worry and anxiety and those are words this company seems to generate on a national scale!

I've met news that ATOS want an early exit from their  DWP work capability assessments contract, with mixed emotions. 
Who knows, maybe another company will do better but let's be clear ATOS are not the only ones to blame for this fiasco - DWP's flawed policy is the real villain of the piece and I'm afraid that battle is very far from over!

We live to fight another day!
Stay strong my friends,
(((hugs)))
Maz x

2013, the good, the bad and the down right ugly...

Hi guys, 2013 had some good, bad and downright ugly points!

I want to end this post on a good note so we'll start with the bad and ugly side of 2013!
Like most Carers it's been a difficult year. For Carers, it's truly, never very easy but in 2013 there's been added pressure too that's for sure.
Our government's been less than supportive at times, their 'War on Welfare' and general uncaring attitude towards truly struggling disabled people and their Carers, has caused untold distress and suffering for people, like us, already paddling hard to just keep afloat!
Sad thing is, the up to date stats show there's very little financial gain for our government's stance but they're still intent on their path of social destruction and they've successfully used our media and their 'shirkers and strivers' rhetoric, to turn communities against one another - and that's truly ugly!

Coo and I have struggled through. It's been a difficult year, but also one full of trials and triumphs.
The trials?
Well, as always, there were many difficult times with real health worries throughout 2013.
*Health - living with serious long term conditions is always stressful and difficult!
*Family - Baby Jessie's very late, hip-dysplasia diagnosis was an additional worry, the on-going surgery problems she'd face too.

As if that that wasn't enough, we felt under siege by our own government.

The saga of Bedroom Tax and ATOS  all added to the stress and strain that was our 2013.



The triumphs?
*Health - I'm sure we triumphed - we're still here aren't we! also coming out the other side with wee Jessie -  3 successful surgeries and at last getting rid of the heavy Spica casts.
*ATOS - Seeing off the ATOS threat, wasn't easy, it was very stressful. Coo struggled most, the seizure activity kicked hard, we were stuck in at home on that scary roller-coaster ride again. I guess we just held on for dear life and hoped, they would see sense and the nightmare would end...and it did...for now anyway!
*Bedroom Tax - We so stressed with this issue!
We could not move - our house is adapted - we need the rooms we have, either for staff who come in to help or for respite sleep periods, to help me keep going but yet again, due to the stress of it all, we were plunged into chaos as Coo's seizure activity went off the planet and we again struggled!

We asked everyone we could think of, who had an influence to help.
Our MP raised our plight with the Prime Minister himself.
In the end, we secured a Discretionary Housing Payment but the saga that is 'Bedroom Tax' will raise it's ugly head again in March-April time.
*SDS - We used our SDS (Self Directed Support) care package and funding so successfully! In times of difficulty and struggle, when Coo was well enough to, we disappeared for a few days respite, turned off all the stresses, took a time-out and recharged our batteries for the next onslaught! I'm not sure how we'd have fared without this much needed help and support!
*Speaking out for Carers - I was happy to speak out, share my Carer story and try to encourage other Carers to seek help - we can only help and encourage people to see us can't we?

My granny used to say it's a good life if you don't weary and...she's right!
so...
Hello 2014 and here's to not wearying!
(((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

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

The ATOS and Carers Roller coaster ride...

Hi guys, we're still struggling but things are a little better!

We're still on the roller coaster ride we call caring!
It's so very hard to plan things as from one day to the next, sometimes one hour to the next too as it's hard to predict just how things will be!

Coo's seizures are still problematic, the hassles with ATOS have not helped either and the seizures continue to increase. It's so very difficult to pin-point, if it's stress or yet another infection that's the cause of the latest increase in activity so we're still riding that roller-coaster for now!
We're having yet more bloods done this week, to try and rule out infection...and if it is stress?
Well, we'll try and keep things as calm as we can and hope the people at ATOS do their job and this latest onslaught ends sooner rather than later!

Why do they need to assess severly disabled people in this way?

Wouldn't it be more effective for people like Coo, if ATOS would just contact the hospital and get the information direct from the Neurologist? Take the time and care, to ask the guy who assesses Coo's health and medical condition every few months and really knows how devastating an impact Epilepsy has had on every aspect of his life?

Wouldn't that be so much kinder, less stressful and less invasive too and probably more effective in the long run?
You'd think so wouldn't you!

Does it really make sense to send someone like Coo to a medical to see if he can walk, talk and write his name? - I really don't think so!

Some day this will change and the sooner the better!

I hope you're ok where you are,

Keep strong,

(((hugs)))

Maz x

One battle ends another begins - ATOS...

Hi guys, ATOS are at the door!

No sooner have we sorted out our 'Bedroom Tax' struggle, now we have lurched right into another nightmare! The department of work and pensions have set the wheels of review in motion and ATOS are now at our door!

The forms to assess if Coo is fit to work, arrived a week ago, I can put it off no longer and have now started to complete them - what a time consuming, depressing and demoralising job!

Coo struggles so with this side of his disability, the need to assess and examine every tiny detail and worst still, record it for all to see! For obvious reasons, we don't take the lid off the box and closely examine things often, it's just too painful, especially for Coo!

He doesn't cope well with this aspect at all, he's already struggling with the stress and anxiety effects this process brings  and he has a massive increase in seizure activity. Last night his seizures were so violent and coming so fast, every twenty minutes and in an attempt to calm things, I had no alternative but to sedate him. At least then around 4 a.m. thankfully we managed a couple of hours sleep. We both have been so exhausted, it's been such a very difficult day for us.

I've always had to take on the bulk of the work with the forms, it's just easier this way so I'll fill them in as best I can, clarify things with Coo, add in additional supporting information and just hope for the best!
It really shouldn't be this way for people who clearly have severe disabilities - there must be a better system! Honestly, by the time this process is completed, Coo and I will have had to struggle really hard to cope with his care needs and disability at home and we'll have had to navigate through some very troubled times too.
I wish our government knew just what they were doing to us - for that matter even cared - and all in the name of 'Welfare Reform' and at such high human cost for disabled people and their Carers!

I'm posting a rainbow picture as I really need it's calming influence...

I kinda like the idea of holding one in my hand.
I think it's soothing and I hope you find it soothing and calming too!
(((Hugs)))
Maz x