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

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