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

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

Tommy's wonderful Carer Event...

Hi guys, I have news and it's exciting!

My Carer friend Tommy, whom I've blogged about before, has organised a wonderful event, Celebrating Carers and Caring!

I'm delighted he remembered my wee 3Towns Carer group and sorted some tickets for us! A heartfelt thank you! It would have been so very much more difficult for us to manage and we'd have most probably missed out all together! You are a truly lovely guy Tommy!
(((hugs)))
Maz x

I hope he doesn't mind but...over to Tommy....

Here's some further information from Tommy's blog...

Thursday, 2 January 2014

Concert Line up Announced -"Letters Life and Love Stories - A Celebration of Caring in Scotland

Home-grown talent to honour Scotland’s hidden army of carers at Celtic Connections concert!

 

Its with the greatest of pleasure I can announce the line up for the  "Letters Life and Love Stories - A Celebration of Caring in Scotland concert I have been working on over the last months in alphabetical order 

Admiral Fallow, Eddi Reader, Emma Pollock ,Horse McDonald, Hue & Cry Little Fire

Siobhan Wilson. Plus more special guests to be announced

Celtic Connections website, accessible here for info and Tickets - http://tinyurl.com/pfrgr7v

The Health and Social Care Alliance Scotland (the ALLIANCE) and Regular Music with Celtic Connections are delighted to confirm a range of home grown talents will come together to celebrate the lives of many of the 660,000 carers in Scotland and those who support them.  

 

An exciting array of Scottish musical guests, will be appearing On Monday 20th January, Glasgow Royal Concert Hall  are indie folk five-piece Admiral Fallow, songstress Eddi Reader, founder member of The Delgados Emma Pollock, Horse McDonald, Hue & Cry, Little Fire and Siobhan Wilson, plus more special guests to be announced.

On Monday 20th January, Glasgow Royal Concert Hall will play host to Scottish favourites  In alphabetical order...Admiral Fallow, Eddi Reader, Emma Pollock ,Horse McDonald, Hue & Cry Little Fire, Siobhan Wilson.

Plus more special guests to be announced,

for the ‘Letters, Life and Love Stories’ Concert, which forms part of the Celtic Connections Calendar for 2014.

 

The concert will be accompanied by a reception at which the Deputy First Minister, Nicola Sturgeon will address an assembly of specially invited guests including carers and inspirational professionals and volunteers who play a part in their journeys.

 

The idea of the concert came from a meeting with Tommy Whitelaw of the ALLIANCE, Mark Mackie from Regular Music and Celtic Connections  Festival Director Donald Shaw where Tommy shared some of the letters and spoke about ways they could be brought to life by music.

Tommy Whitelaw, who worked for 20 years in the music industry, spent the last five years caring for his mum Joan who had dementia. He started a campaign, ‘Tommy on Tour’ to raise awareness, gathering letters from carers. Now as Project Engagement Lead with the ALLIANCE’s Dementia Carer Voices Project, he speaks to carer groups, health and social care professionals and students as well as key decision-makers who have influence over the lives of people affected by dementia.”

Tommy Whitelaw said...

 

“Over the last few years I have seen the amazing lengths that carers go to through love as well as the transformational impact that special people can have on the carer journey. This event is the perfect opportunity to say thanks to these inspirational people for the role that they play.”

  

 

Letters, Life and Love Stories Concert and Carers Reception

 

"Letters Life and Love Stories - A Celebration of Caring in Scotland” Gala concert will be held at the Royal Concert Hall in Glasgow on 20 January 2014 as part of Celtic Connections programme.

The concert will pay tribute to the love and dedication of Scotland’s carers and the part played by the many professionals and volunteers who contribute during the carer journey.

This partnership event with Regular Music and Celtic Connections will celebrate the lives of many for the 660,000 carers in Scotland and those who support them.  

Tommy Whitelaw, who worked for twenty years in the music industry, spent the last five years caring for his mum Joan who had dementia. He started a campaign, ‘Tommy on Tour’ to raise awareness, gathering letters from carers across Scotland.  The concert is the result of Tommy sharing these letters with Mark Mackie of Regular Music and Donald Shaw, Festival Director of Celtic Connections and a desire to bring the stories to life through music.

The concert will be held on 20th January at 7.30pm in Glasgow Royal Concert Halls as part of Celtic Connections. Tickets can be booked online via theCeltic Connections website , by calling the box office on 0141 353 8000 or in person from the box office located at the Buchanan Street entrance of the Glasgow Royal Concert Hall.

Latest Concert Press Release

Carers Reception 

We are delighted to confirm that the Deputy First Minister Nicola Sturgeon will address guests at the ALLIANCE's pre-concert reception to be held in Glasgow Royal Concert Halls from 4:00 to 6:30 pm.

The reception will reach out to inspirational individuals and groups, asking them to tell us about their journey caring for a loved one, and the motivation behind their caring role.

At the reception there will be a range of exhibition stands from national and local organisations who engage with carers. These partners will each undertake their own project to collect and present the inspirational stories of those they support and represent in an innovative and engaging way.

If you are a twitter user, follow #icarewecare  for the latest updates.

 

 

 

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

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 Summit, Campaigning and keeping strong...

Hi guys, I've been busy...again!
I've been a member of Carers Scotland's Advisory Committee for the last 3 years and on Friday, it was our 'Annual Summit'.
I set off early with some of the Three Towns Carers group who made the trip up to the big city! We like to make sure the Carers in our area have their say and raise both good practice, positive stories and any issues we have too!

I love Glasgow, it's a great place for a visit - all that hustle and bustle always makes me feel 'up' and excited! lol

The Summit went well!
The speakers were interesting and Deputy First Minister, Nicola Sturgeon MSP, had a good question and answer session.
As expected, the issues raised by most Carers were:
***The struggle with Welfare Reform,
***ATOS - Disability Assessment process issues
***Bedroom Tax!
***Social Services - Cuts/Contributions to Care Packages (some Local Authorities are doing better than others!).
I guess it's not surprising people were angry and upset. It's a worrying time for Carers and disabled people, who feel they're under scrutiny and unfair criticism from Department of Work and Pensions & ATOS, also general public and the media too!

All the scrounger's and striver's rhetoric has really hurt the genuine disabled and their Carers. - it's a horrid state of affairs and all so unfair!

Lord alone knows where it'll all end, one things for sure, it's hurting our most vulnerable citizens most!
We must stay strong, continue to campaign and speak out for a better deal for Carers and just help one another where we can!
(((hugs)))
Maz x

Scotlands Carers Parliament, difficult decisions and Respite too...

Hi guys, it's been a busy week!

The sun has returned so it's also been a sunnier, more positive time too! Isn't if funny how a little sunshine can brighten the mood? I always find grey days make for even greyer moods so I like to catch the best of the sunshine anytime it pops up really!

The Carers Parliament is on Tuesday, it's the second time Carers from all over Scotland have come together to discuss the issues they face and lobby our government for a better deal.
I'm not making it to the Parliament this time as I'm...double booked!

I found out Jesus Christ Superstar was coming to the new Hydro in Glasgow.
It's only playing for one night and Coo and I have wanted to go for years so I booked it way back in January!


Once this years Carers Parliament date was confirmed, I knew it would be difficult to say the least! I thought hard about things, tried to find a way around it, to jam it all into the box and I nearly tried to do both too but...sense prevailed! lol
I decided, if I cancelled and went to the Parliament, Coo would be disappointed and for that matter, I would too! I eventually made my mind up and decided not to try for a Parliament place this year. It was more important for Coo and I to have our respite break and continue with our plans.

I had a wonderful time at the Carers Parliament last year! I spoke out, shared a little of Coo and I's journey so far and pushed for changes I felt were important for all Carers!
So...
Good luck and a big 'go get 'em' to the Carers from all over Scotland who are making their way up to Edinburgh on Tuesday.
Have a great day and have a brilliant Carers Parliament!
(((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

Timeout, Anti-Bedroom Tax and the U.N. reporter...

Hi guys I've been on a wee overnight away with Coo!

I always like to make sure Coo and I do something together when I come back from my Respite break so with Joseph, being on in Glasgow at the Kings last week, just what to do was an easy choice this time around!

It was brilliant!
Great fun and a great show too - Coo and I had a blast!
We had some luck too, we usually sit in the circle part of the theatre but it was closed that evening and we got a free upgrade...Result! lol

When we came back, I discovered I'd been invited to speak to the United Nations Reporteur currently here in the U.K. assessing the effects and issues surrounding the hated 'Bedroom Tax' legislation. - of course I agreed!

I am both saddened and angered in equal measure around the issues and damage this piece of legislation has brought into the homes of the most vulnerable people in our society. So many people affected in what is already a so delicately balanced, precarious and difficult situation at best.
It truly is, only an uncaring government that could and would inflict this type of damaging policy on it's own people.

My report and case study has now been submitted to the United Nation Reporter and I only hope in some small way, it helps speed the demise of this abhorrent  policy and the sooner the better!

If you're asked to speak out, please take a deep breath and just tell them how it really is!
It's only by working together we can make a difference!
(((hugs)))
Maz x

NHS, Review, Support & Action...

Hi guys, I've been busy!
Things have moved on apace with our NHS and Hip Dysplasia issues and thank goodness for that!

We (Looby & I), had a meeting yesterday with NHS people from both Community Nursing & Pre 5 Childrens Services and Midwifery, to discuss the issues raised at the NHS annual review.

We raised our concern and said we really felt, there was a lack of information surrounding Hip Dysplasia (DDH) in general - just what do you need to look for?
We discussed how this could be addressed and improved and I'm pleased to say, actions were discussed and agreed surrounding further training for staff, additional awareness raising and general public information sheets & posters.

Best of all, they agreed to supplement the information given to new parents to include a wee section on Hip Dysplasia symptoms and what to look for as we had suggested. We thought the most helpful information would be, letting people know to check the wee fatty folds are symmetrical on the baby's thighs. It's a clear visual marker the hips are displaced and could need attention and it's so easy to see.

Sadly, we only found this out, while searching for support after Jessica had been diagnosed at aged18 months! We quickly realised to our horror, we had noticed this with baby Jessie as early as the first four weeks after her birth and thought she was just a 'wee chubby baby'- we just didn't know it was a problem!

With the additional training for staff and the proper info on the signs to look for given to new parents, hopefully we'll start to catch these wee people quickly and really avoid the need for painful, invasive and expensive surgeries and...if this happens, I will be a happy Maz...in fact, we'll all be happy!

(((hugs)))
Maz x

Disappointed.com...come on NHS!

Hi guys, I'm on the case again!
Remember when I posted recently about raising an issue at our NHS annual review? It was regarding the lack of information from NHS on Hip Dysplasia.

Well...I'm disappointed.com!
The NHS people have not bothered to contact me or update on this issue so...I decided to give them a wee reminder in the hope they will move quicker and in the right direction!

First I contacted Public Health Minister Michael Matheson, (he hosted the review!), just to let him know, I had not yet had any further contact with NHS. Then I emailed the only Health board contact I had and asked for some help tracking down just whom should I be talking with - I'm nothing if not resourceful!

I hope they are taking this issue seriously as with four in every thousand babies born with Hip Dysplasia that's a lot of wee people with hip problems that need checked and if they're like baby Jessie and missed at the start, parents need to know the symptoms and just what to look for!

It would be nice to hear from them soon, one thing's for sure...
I'm not giving up - it's just too important!



Remember just like their logo says the NHS belongs to us all!
If you come across something you're not happy with, particularly if by intervening you can save someone else from pain, take a deep breath and...challenge, challenge, challenge!
Keep strong,
(((hugs)))
Maz x

NHS Review, Hip Dysplasia and Carers...

Hi guys, I've been busy again!
This time I went with some of my wee Carer Group to visit our NHS annual review and had a chance to ask questions and raise some points!

Well, not being the shy type and still adjusting to the very late diagnosis of baby Jessica's Hip Dysplasia and also the fact Minister for Public Health Michael Matheson, the Chief Executive and Chairman of Ayrshire and Arran NHS were all there, meant I decided to raise the issue.
I kinda had no choice really, it's important and if the information is not getting to families  who need it something is wrong!

I explained, four babies in every thousand are born with Hip Dysplasia, it's nobody's fault, it just happens but the quicker it's found and treated the better for these babies. I also explained, once Jessica was diagnosed, we went over all the health information the NHS gives to new parents and could not find any information there either! I asked them to take forward this point and include even just a paragragh on Hip Dysplasia symptoms, just what to look for would be good!

It's so important! If this condition is found early, there is seldom the need for surgery at all! The baby wears a brace or harness for a few weeks and in most cases it fixes on it's own but if it's missed, these wee ones need extensive and expensive surgeries, physio and rehab to try and rectify things as has happend with baby Jessie.

I'm pleased NHS Ayrshire and Arran are going to follow this up and I'm so glad I had the chance to speak to those who can address this issue properly and quickly too!

The other point I manged to raise was this one...

We had a crisis and needed emergency admissions seven years ago. Things did not work well and as a Carer and disabled person with complex difficulties we were not listened to at all. Coo's massive seizure activity could not be contained in a ward situation and as his care needs were so complex, it just didn't work and we were left feeling so very unsupported and alone! Last year, we needed another admission and we were both listened to and supported to enable, what turned out to be a positive and supported experience this time around! The changes we found then were heart warming and I wanted to share this positive experience and hope things continue improving too!

All-in-all the NHS review of our area had a lot of positives to share, there are things that need work but it was a positive meeting and I came away with a good feeling about how things are going!

If you get the chance to raise your points and question those who can change things, remember...deep breath and just go for it!
(((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

Carers, support, friendship and review...

Hi guys, that's Carers Week all over for another year!

So just how did it all go?
Well, I've been busy that's for sure! I skipped some of the fun things as I just didn't have enough respite but I did do the important stuff, the kinda things that hopefully will continue to make a real difference...

• Monday - Carer information & support meeting.
• Tuesday - Protecting vulnerable adults forum.
• Wednesday - The Carers reception at Edinburgh Castle with Cabinet Secretary Alex Neil MSP and Carers Scotland.
• Friday - Anti-Bedroom Tax demonstation - this is adversely disproportionately affecting disabled people and their Carers.

It was tight and took some planning but I sure did manage to pack a lot in didn't I! lol

I've spoken out about Carer issues, raised awareness and hopefully given some people who are in a position to help, food for thought!


I truly believe it's only by working together, we can effectively achieve changes for all Carers!
I'm tired but happy and it's been a good week so...jobs a good 'un! lol
I hope you've found support and had a good Carers week where you are too!
(((hugs)))
Maz x