WCBC

The Final Furlong #SaveWILG

I am up to my neck in negotiations with my local authority over emergency payments for my depleted Direct Payments account. It has taken a beating over the past six months, as I have been using it to fund the 24/7 support that I so desperately need. I had saved quite a sum to be used in such a situation – it was always going to happen, due to the fact that I live with a progressive disability and had not been fully reassessed since 2010.

I am pleased to report that, having met with the Head of Adult Social Care, WCBC have agreed to make the relevant payments to ensure that I can continue to receive the support I need, at least until the end of my forthcoming WILG reassessment.

There is one thing that I would like to make clear to WCBC and all local authorities. One of the meetings I recently had with WCBC, through up the question of where the additional funds that I am now in desperate need of, would come from? I was shocked and disappointed that WCBC and a number of other local authorities, do not seem to grasp the fact that the #SaveWILG campaign that I led, resulted in the Welsh Government agreeing to fund any extra costs incurred. This was clearly outlined in a written statement on the future of WILG payments, made by the Deputy Minister for Health and Social Services, Julie Morgan on the 18th of July:

I would remind Members that the cost of these independent care assessments, and any additional support for people that might be identified from them, will be met by the Welsh Government. This is so that there can be no question of changes being made to people’s care and support as a cost cutting measure. The under-pinning principle of my approach is to ensure that outcomes reached are consistent with supporting people’s agreed well-being outcomes.

It is important that all local authorities realise that Ministers have agreed to fund any increased care costs that may arise from the outcome of an independent assessment.

Even though the #SaveWILG campaign has been extremely critical of local authorities in Wales over the past four years when dealing with WILG recipients, we have actually assisted cash-strapped councils by reducing the amount they are expected to pay to support disabled people with high support needs across Wales.

WILG recipients and their supporters need to remember this fact, and hammer it home when confronted by adult social care professionals who do not keep up with the news, or realise just what an impact the #SaveWILG campaign has had. The Welsh Government has actually done something pretty special and deserve all the credit in the world. They have listened to our fears, read the evidence we collected and acted decisively. Sadly, there is little room for any positive news in the media at the moment, as we are all obsessed with the actions of a Conservative Muppet and the mess he is making of the BREXIT debacle.

All we need to do now, is remind all local authorities of the changes that have been introduced…

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Mile End #SaveWILG

I must begin by apologising for not updating my followers for a few weeks. I have been in battle – mode against my local authority who seem determined not to increase my package of social care, unless I undertake a health assessment that everyone can clearly see I don’t need. This has caused several sleepless nights, panic attacks, depression and exhaustion. I simply want to enjoy what is left of my life, but I am not being allowed to by the Council who preside over the town in which I was born, and have lived most of my life.

I have to be careful what I say, as there is plenty going on behind the scenes. I do not want to upset any of the staff who are employed by Wrexham CBC, and are merely following orders from above.

As I write, I am full of anxiety and have never felt so alone, even though I am surrounded by an army of supporters who are always on hand to steer me in the right direction. Unfortunately, these supporters cannot be with me around the clock and I am forced to spend frustrating hours on my own. I am full of energy and ideas, but this is agony as I need social support to communicate, wash, dress, eat, drink and do everything that most people take for granted.

There are a few ideas that I have come up with that I will be sharing over the next week or two, when the time is right. Those who know me, will be confident in the knowledge that I won’t be manipulated or threatened by anyone. For the time being, I just wanted to let everyone know that I am definitely still in the game and attempting to secure justice for myself and other disabled people with high support needs in Wales.

Incompetence #SaveWILG

Even though events in February suggested that we had been successful in our attempts to #SaveWILG, I am still struggling to live a comfortable, independent life.

The problem is that Wrexham County Borough Council are simply incompetent, and failing in their duty of care towards me. This has recently been highlighted by the fact that I have run out of money in my Direct Payments/WILG account.

This is hardly surprising as I have been forced to use the funding I receive for 86.5 hours of support per week on 24/7 support instead. This is due to the fact that I live with a progressive, genetic disease of the nervous system. I have always known that this condition will deteriorate, and it should come as no surprise to anyone that I am need of extra support. This is not something that I am choosing, rather something that I categorically need.

I struggled to pay my staff their well-deserved wages earlier this month. This was due to a £2,200 bill from HMRC, which was unexpected and was a bombshell to my financial affairs that I could not recover from. WCBC agreed to pay an emergency payment, but this did not arrive in my account until eight days later. In the meantime, I had to borrow money from family members to ensure that my staff were paid on time. I do not like having to borrow money, but I had no option. This was both embarrassing and stressful.

I have since been told that senior  management have refused to sanction any further emergency payments, which is obviously very stressful for my staff and myself. I am supposed to be having an independent reassessment soon. This cannot come quickly enough, and is really a matter of urgency as I do not have any confidence that WCBC will resolve this issue.

I informed WCBC back in October/November 2018 that my condition had deteriorated to such an extent that I would need 24/7 support. This was met with scoffing and I was told that no one in Wrexham receives such a care package. This is why I have not been in contact with anyone from WCBC who have failed to provide me with the support that I need to live independently. It is clear that WCBC have failed in their duty of care to myself, and in all probability, many others.

I feel that WCBC have put me under physical and mental stress by denying me the freedom to live the life that I choose. If I did not need support 24/7 I would not ask for it.

I think it likely that the threatened refusal to make a second emergency payment breaks the law. The Code for Part 4 does not limit emergency payments to a single occasion: Para 158 states very plainly that local authorities must be prepared to make emergency payments when they are needed. Welsh Government civil servants have alluded to this in emails when I have been warned that I  “need to watch closely and alert the council if this situation looks like it is to occur again.” I read this to mean that I need for support is paramount and that if it looks like I will run out of funds again I should ask the authority who must ensure that I do not run out of money.

While this reassessment  process takes its time, I wonder what are they going to do to provide the basic level of care needed with regard to the next payment day (September 2nd)? WHO exactly refused the emergency payment and on what grounds? What do they think the consequence of that must be?

I have done everything in my power to show that I am not misusing Direct Payments. I am transparent in everything that I do. Pity the same can’t be said of senior management at WCBC, who are merely proving that local authorities cannot be trusted to provide social care, as #SaveWILG campaigners have been highlighting for four years.

I believe my situation will be sorted out by independent social workers, as I have little confidence in WCBC. I will keep readers up to date with this diabolical situation in the hope that it will provide guidelines to other WILG recipients.

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Direct Payments Guide Issued by Social Care Wales

Many thanks to Rosemary Burslem for drawing my attention to the following guide to Direct Payments, which has been published by Social Care Wales. It can be read in full by clicking here. 

This is a very illuminating guide, which clearly shows that Direct Payments can be used for other things as well as support from personal assistants.

“Myth 3 Direct payments are only for employing PAs

The great thing about direct payments is the opportunity to be creative. Employing a PA is one of many options to meet an individual’s personal well-being outcomes. For example, direct payments can be used to buy equipment, pay for activities to reduce loneliness, isolation or to develop confidence or gym membership or transport to access community facilities.”

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The Dewis website- see: https://www.dewis.wales/using-direct-payments says:

“Social activities

You can spend your money on social activities, evening classes and even holidays if they are in your care plan. Direct payments can also help if you want to do paid work or a training course.

Equipment and minor home adaptations

If you need special equipment or minor home adaptations an amount to cover these things might be included in your direct payments.

Special equipment might include computers, mobility aids, safety devices, transfer aids and assistive technology.”

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It is clear that Direct Payments are intended to improve choice, control and independence for people. This is further evidence of the appalling practices of Wrexham County Borough Council (WCBC), who have done everything in their power to discourage DP recipients from spending their money on things that they are clearly entitled to. I believe that WCBC view that DP’s can only be used to pay for support is not in line with the ethos of the law on Direct Payments. When drawing up Care Plans with people who have chosen to have DPs Social Workers and clients should be allowed to be creative in how this funding is spent, as in the examples above.

Those of us who do receive Direct Payments throughout Wales should read the article provided by Social Care Wales, and remember that we are in control of the money we receive and as long as it is spent responsibly and appropriately, then there is little that Local Authorities can object to.

The Dreams In Which I’m Dying…

The following blog includes songs by Gary Jules (Mad World) and John Farnham (You’re the Voice). I am not claiming any artistic influence on these songs at all.

I was watching Murder Made Me Famous on the Really Channel at some godforsaken hour last week as I tried to keep my eyes open and delay the uncomfortable hours that were sure to follow.

This particular episode concerned the crimes of Reverend Jim Jones –  an American religious cult leader who, along with his inner circle, initiated a mass suicide and mass murder in JonestownGuyana.

It really is a fascinating tragedy and I encourage everyone to read more about the Peoples Temple as only by learning lessons from the past can we hope to build a brighter future for everyone…

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Things have changed a lot in the past forty years, but I still fear that mass murderers such as Reverend Jim Jones exist, albeit in different forms.

It has been a long weekend full of three draining panic attacks. The lack of support and information from Local Authorities in relation to Welsh Independent Living Grant recipients is really affecting both my mental and physical well-being. Two of the panic attacks were brought on by madly rushing to use the loo as the urge to relieve myself comes on all of a sudden. My body is unable to react quickly enough, so accidents do happen.

I also suffered an attack before going to bed on Friday night, as I can almost predict the hours of discomfort, pain and panic that lie ahead during lonely nights without support. I am a born fighter – and I do not have any plans to slow down – but the pressures being put upon me are becoming increasingly difficult to cope with,  as my progressive disability continues to eat away at my nervous system.

I require 24/7 support NOW if I am to continue living independently and contribute to my local community. This is not something that I want for selfish reasons, but simply something that I NEED.

I found the following article to be very illuminating and it is certainly something that I can relate to. It was written by Mike Sivier from Vox Political and can be read by following this link.

It seems that poor and vulnerable people are still being controlled and manipulated today, in a way that Reverend Jim Jones would be proud of.

Don’t get me wrong, I am proud that the Welsh Government have listened to #SaveWILG campaigners and are now acting accordingly. I have received encouraging emails from ministers and civil servants who are working on implementing a new policy to protect independent living for WILG recipients.

It is not the current Welsh Government that I have a problem with, but the previous neo-liberal regime, whose mistakes I am now paying the price for. Local Authorities also deserve to shoulder some of the blame for refusing to provide adequate support for those that need it, purely for selfish financial reasons.

I hope I am able to go on for many years, but if I were to pass away tomorrow I would guess that someone at some level would say that “lessons need to be learnt”. I am still breathing, so why can’t the relevant action be taken now to improve my quality of life? I understand and am happy that the Welsh Government are doing all they can to push through implementation as quickly as they can, but in the meantime I am going to use the extra money in my Direct Payments account to fund the extra support that I need.

I have since found out that I will be unable to offer a PA anything more than the minimum wage to stay with me overnight due to ludicrous pay rates set by Wrexham County Borough Council. I should be able to pay staff working through the night, the same as I pay a member of the staff throughout the day. How can WCBC justify paying different rates for day and night? It appears as if my next fight for justice has been earmarked.

The book that I am itching to write, along with the work of art that I have conjured in my head will just have to be put on hold again…

All I know is that I am not going to sit in silence or live with fear any longer as I believe  justice is on my side. I can see all the inadequacies of the current chaotic system of social care from my position on the moral high ground and I will continue to keep raising my voice until disabled people, in particular, are able to live on a level playing field with the rest of society.

 

No Fun #SaveWILG

I would like to dedicate the following song to everyone at WCBC and the Welsh Government.

I am really struggling at the moment due to inadequate hours of care and support and not being able to use my direct payments in the way they are intended, thanks to an inept local authority that are failing in their duty of care. I wouldn’t mind, but I have been warning everyone that such a situation would arise if the responsibility for social care was given entirely to local authorities.

Nights like the ones described in this blog are definitely no fun for me and I struggle to believe that I am having to live the way I do in a supposedly civilised Western country at the beginning of the 21st Century.

I will continue to do everything I can to make sure that disabled people with high care  and support needs do not have to put up with such inept treatment in the future…

Please note that I am not claiming any association with this song or the songwriters. No Fun was originally a song by The Stooges and information about them – and the Sex Pistols – can be found at the foot of this blog. All of this information has been copied from Wikipedia.

No Fun Lyrics – Preformed by the Sex Pistols

Right here we go now
A sociology lecture
With a bit of psychology
A bit of neurology
A bit of fuck-ology
No fun

Right no fun
My babe no fun
No fun
My babe no fun
Fun to be alone
Alone and by myself
Fun to be alone
In love with nobody else

No fun
My babe no fun
No fun
My babe no fun
Fun to be alone
Walking by myself
Fun to be alone
In love with no friends of mine

Maybe going out
Or maybe stay at home
Maybe call somebody on the telephone
So c’mon my baby c’mon
So c’mon
I’m alone
Having no fun by myself
This is no fun with nobody else
I’m all alone
By myself
I’ll be alone
Nobody else
It’s no fun
It;s no fun all alone
All alone no fun
All alone
No fun
I’m alone
I’m alive
I’m alone
And i’m waiting to have my fun
I’m waiting ain’t got no one
I’m all alone
This is no fun
No fun
All alone
I’m alive
No fun
I’m alive
I’m alone

No fun
No fun
No fun
My babe no fun
Fun to be alone
Walking by myself
Fun to be alone
In love with nobody else

Maybe go out
Maybe stay at home
Maybe call somebody on the telephone
So c’mon
I’m all alone
So c’mon
Oh come and play
I’m alone I’m alone
With nobody else
I’m alone I’m alone

All by myself
And I want some fun with somebody else
My baby’s alone on the lavatory
My baby won’t come play with me
I’m alone
All alone
I’m looking at the telephone
I’m alone
All alone
I got nobody else
I want my fun
I’m gonna make my own fun
All alone
I’m alive
It’s no fun
I’m alive
No fun
It’s no fun
No fun

It’s no fun

No fun
It’s no fun
It’s not funny
I’m by myself
I’m alive

The Stooges, also known as Iggy and the Stooges, were an American rock band formed in Ann ArborMichigan in 1967 by singer Iggy Pop, guitarist Ron Asheton, drummer Scott Asheton, and bassist Dave Alexander. Playing a raw, primitive style of rock and roll, the band sold few records in their original incarnation and gained a reputation for their confrontational performances, which often involved acts of self-mutilation by Iggy Pop.[6]After releasing two albums—The Stooges (1969) and Fun House (1970)—the group disbanded briefly, and reformed with a different lineup to release Raw Power (1973) before breaking up again in 1974. The band reunited in 2003 until dissolving in 2016 following the deaths of Scott Asheton and saxophonist Steve Mackay. Ron Asheton participated in the reunion until his death in 2009.The Stooges are widely regarded as a seminal proto-punk act.[6][7][8] The band was inducted into the Rock and Roll Hall of Fame in 2010.[9] In 2004, Rolling Stone ranked them 78th on their list of the 100 greatest artists of all time.

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The Sex Pistols were an English punk rock band that formed in London in 1975. They were responsible for initiating the punk movement in the United Kingdom and inspiring many later punk and alternative rock musicians. Although their initial career lasted just two and a half years and produced only four singles and one studio album, Never Mind the Bollocks, Here’s the Sex Pistols, they are regarded as one of the most influential acts in the history of popular music.[1][2]

The Sex Pistols originally comprised vocalist Johnny Rotten (John Lydon), guitarist Steve Jones, drummer Paul Cook, and bassist Glen Matlock. Matlock was replaced by Sid Vicious in early 1977. Under the management of impresario Malcolm McLaren, the band provoked controversies that both captivated and appalled Britain. Their concerts repeatedly faced difficulties with organizers and authorities, and public appearances often ended in mayhem. Through an obscenity-laced television interview in December 1976 and their May 1977 single “God Save the Queen“, attacking Britons’ social conformity and deference to the Crown, they precipitated one of the more significant pop culture-based moral panics.

In January 1978, at the end of a turbulent tour of the United States, Rotten left the band and announced its break-up. Over the next several months, the three other band members recorded songs for McLaren’s film version of the Sex Pistols’ story, The Great Rock ‘n’ Roll Swindle. Vicious died of a heroin overdosein February 1979, following his arrest for the alleged murder of his girlfriend. In 1996, Rotten, Jones, Cook and Matlock reunited for the Filthy Lucre Tour; through 2008, they staged further reunion shows and tours. On 24 February 2006, the Sex Pistols—the four original members plus Vicious—were inducted into the Rock and Roll Hall of Fame, but they refused to attend the ceremony, calling the museum “a piss stain”.[3]

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Nightmare on Finney Close

When I told my Social Worker that I was in need of 24/7 care in my own home, she actually laughed at the prospect of anyone in my local authority receiving such a level of care and support. Read the following paragraphs and you might discover why I NEED round the clock assistance to function as part of my community.

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22.00: I was struggling to stay awake as I finished off my latest email to the Welsh Government, something that I knew in my heart of hearts would probably be ignored again. The #SaveWILG campaign has come so far and achieved a great deal, but still those in control refuse to listen and take note to Welsh citizens. The fight continues, but it would have to wait until the morning because I could hardly keep my eyes open…

22.45: Comfortably in bed, I watched the news on television and caught up with the latest chapter in the Brexit escapade. I am pretty confident that I could do a better job than the majority of politicians braying in the House of Commons. The success I have made out of the #SaveWILG campaign proves this, although as always I get by with a little help from my friends…

00.00: I am watching Porridge on Yesterday yet again, as I am too scared to go to sleep as I know I will probably wake up again in an uncomfortable position. This has happened far too frequently over the last 6 months and I have had to call my dad to straighten my legs, re position me in bed and rescue the duvet which often falls to the floor as I wriggle and fight to get comfortable. Hopefully, if Fletcher and company can keep me awake a little longer, I will be out for the count until the crack of dawn.

02.50: I’ve been asleep since about 00.30 but being awaken by massive cramp in my knees as my legs have bent during sleep. It is most painful and I just want to fully straighten my legs, but I can’t. After much effort, I managed to free my legs from my groin area and get them into a 45 degree angle which is as much as I can muster. In doing so I have managed to slide down the bed and my pillow has fallen on the floor. I shut my eyes determined to sleep some more as I can’t call my dad again…

04.36: I wake up again. My legs are in agony. I check the time on my mobile and hope it is 06.00 or 07.00 so that I don’t have to wait too long for my staff to come in at 09.00. I look at mobile and am shocked to see that it is only 04.40. There is nothing I can do, but call my dad. This is far from ideal as he has arthritis in both hands and is in agony whenever he is having to assist me but those at WCBC do not care about my dignity or the dignity of my carers. It is freezing outside and my dad finds his way to my house – a five minute drive away – in perilous conditions. It takes him about 20 minutes to reach my house where he proceeds to straighten my legs, re position me in the bed and give me some paracetamol, which I swallow with water. I hope this medication will send me to sleep and I hope I wont be woken until my PA arrives in the morning.

07.00: Not again. I’m awake this time because my bladder is full. I reach for the light switch but my dad has moved it and forgotten to replace it – something that can be forgiven at 5 in the morning. It is still pitch black, but I really need to use my urinal. The trouble is I can’t see at all. I manage to sit up and grab hold of the urinal, but it is a real struggle to get it in the right position. I am too far gone to be able to calm myself down and resist the inevitable… another two hours until assistance arrives means lying helpless in damp and demoralising conditions. On the plus side, the Welsh Government are soon to be washing their hands of their responsibilities and local authorities across Wales can screw disabled people for all they can by providing them with inadequate care and support whilst squirrelling away funds meant for the most vulnerable in society.

I am OK now after my PA came to the rescue, but one thing is for sure – this sort of situation can’t go on for much longer. WCBC MUST face up to the evidence that I have gathered from my GP, Neurologist, Urologist, District Nurses, Physiotherapist and Occupational Therapist that I need constant support in my own home for my physical and mental well-being. This shouldn’t be such a battle and that is why we need to retain and improve the Welsh Independent Living Grant as not all people who receive WILG can stand up for their rights in the way that I can.

I just want my home to become a comfortable place for me to exist. At the moment, I think I would be better off being banged up in HMP Slade and sharing a cell with Fletcher and Godber…

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