Wrexham Council

Colonel Blink: War Games

 

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This morning I have been to Specsavers in Broughton to pick up two new pairs of glasses. This is important for two reasons:

I usually visit Specsavers in Wrexham for my annual check up. This year I have been forced to make the longer journey to Broughton due to the hassle of  parking my car in Wrexham. When I launched a petition last year to fight the proposed introduction of car parking charges for Blue Badge holders, I argued that the town would suffer as a consequence. I am now totally evading my hometown in favour of a retail park in Flintshire that offers free parking in a well policed, nonthreatening and clean environment.

It is a sad indictment of how far the Conservative/Independent led Council have let the town decline, that I would rather drive to a less convenient location for an essential piece of business. I will continue to do this while the Council is being led by many short sighted and unscrupulous buffoons who care more about lining their own pockets rather than doing what is best for the town.

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I have had to have a new pair of varifocals. I am having a tough time getting used to them. The optician said it could take up to two or even three weeks for my eyes to adjust as there is a lot going on with my new lenses. I have also had new frames and think my new look suits me – at least I hope it does…

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A potential new anthem for fans of Wrexham AFC? #JustSaying

Tired of Waiting… #SaveWILG

I’m too tired to write creatively today, but it is important that I let people know how I am after my blood clot scare.

I had woken on two consecutive  mornings with a badly swollen lower leg.  See pictures below:

I just thought this was a case of my sock being too tight, but after calling a Community Nurse to seek reassurance I was warned that this could in fact be a blood clot. I suddenly started to panic. My main concern was making sure I would be able to attend a crucial meeting for the #SaveWILG Campaign that we have lined up for Tuesday [12th of February].

I was rightly made to phone the Out Of Hours Doctor. I explained the situation and I was told that a doctor would be out to see me during the afternoon. The hours passed and I eventually received a telephone call  at 18.30. The doctor explained  that there was no point in him coming out to see me as he would need me to go to A&E to have a blood test and scan on suspect area. I did not want to go because I knew that this would mean hours of waiting while pointlessly staring into space…

The doctor insisted that I needed to go because if it was a clot it could have travelled to my lung. Suitably scared I spent my Saturday evening playing I Spy in A&E reception. This was good fun for the first couple of hours but as we entered our fifth hour of waiting I had lost the will to live.

I spy with my short sighted little fucking eye, something beginning with…

I had entered the hospital at 19.30 and I was being hoisted into bed at 03.00. The doctor finally examined me at 02.15 and then said there would be a further wait for the results of my latest blood test. I politely told him that I was unable to wait any longer and was going home to bed. I made sure that he had plenty of contact numbers for me and my family and wished him a good night. [TO BE CLEAR, I AM NOT HAVING A GO AT ANY OF THE NHS STAFF THAT WERE ON DUTY. AS ALWAYS THIS DEDICATED TEAM OF PROFESSIONALS WERE EXTREMELY HELPFUL IN THE FACE OF UNRELENTING PRESSURE AND STRETCHED RESOURCES].

After a solid 6 hours sleep, my PA phoned the hospital to try to discover the results of my blood test. She was given short shrift and told that it was highly unlikely that a doctor would promise to give out test results over the telephone. I was looking at a return to A&E as my leg had swollen yet again, as can be seen in the pictures above. After a morning of worry, I decided to phone A&E again myself. This time I spoke to another member of staff who had no problem in telling me that the blood test had come back negative. He reassured me that the test was 99% reliable.

I will still visit my GP in the morning as a matter of urgency. I need to have my circulation assessed and find out what exactly has been causing the swelling if it is not a clot. I will ask for the Occupational Therapist to be alerted to the problem in the hope that they might recommend something to stop this happening again.

This is just another piece of valuable evidence that shows that I cannot cope without 24/7 support in my own home. I know it, you know it, the Welsh Government know it, but Wrexham County Borough Council continue to bury their heads in the sand and deny me my human right to independent living.

I will continue to fight against the scrapping of the Welsh Independent Living Grant by the Welsh Government and carry on my crusade to achieve justice for all disabled people with high care and support needs across Wales.

 

Where Do You Go To My Lovely?

I was watching BBC Four late last night in an attempt to tire myself out so I was more likely to sleep through the night.  They were showing a programme entitled  One Hit Wonders.  

One of the artists featured was Peter Sarstedt who was singing Where Do You Go To My Lovely?  I have included a YouTube video of him performing this song below and the full lyric and some information from his Wikipedia page.  In no way am I claiming any association with this artist or his work, but while I was listening to his crooning I stumbled across an idea for the following blog.

It was the chorus that I found particularly inspiring:

But where do you go to my lovely
When you’re alone in your bed?
Tell me the thoughts that surround you
I want to look inside your head, yes I do

Do you really want to know, Pete?

When I am alone in my bed, this is when I feel at my most vulnerable.  I cannot move at all or get up for a midnight snack. If the heating needs turning up, then I am forced to freeze until assistance arrives in the morning. Likewise, if I need to open the window to get some fresh air then this is not an option.

Trapped in a single position all night is not something that anyone should have to endure in 21st Century Wales. Just this morning, my PA pulled back my duvet to discover that my right leg was discoloured and swollen. Something that probably wouldn’t have happened if I had received the overnight assistance that I need to re-position myself. [I have had to call the out of hours doctor to advise me on the swelling that I am suffering. I have contacted the Community Nurses to report the issue and they directed me to the emergency GP service for fear that I may be experiencing blood clots. If only I could move my legs at night – something I can only do with the assistance of overnight support].

In addition, I should be wearing hand splints to keep my hands from curling into a fist, which would then aid my dexterity. I also have a T-bar that I should use underneath my knees whilst sleeping to keep my legs nice and straight. I can’t use this whilst I am alone at night because there is no space between my legs to place my urinal. Are you beginning to feel the same sense of injustice that I feel every night?

Last night was a particularly windy evening. My PA left my window ajar before leaving my property at 23.00. At 06.00 I was awoken by the sound of my blinds clattering together. My window had blown open further and the wind force was reaching gale proportions. I was dithering under my duvet and had to disrupt my father once again to perform the simple task of closing my window for me. Why should a 68-year-old man,with arthritis in both hands, have to expend all his energy in the middle of the night to come to the rescue of his guilt-ridden son?

Should a fire start in one of the other rooms of my bungalow, then I am toast. I would have no means of escape and this could be solved so simply… Instead, Wrexham Council think it is a good idea to lavish £250,000 on renovating our perfectly well equipped bus station.  Subsequently, the thoughts that surround me mainly revolve around my dislike and distrust of a Conservative/Independent led Local Authority and how I can survive under their influence until the next Council elections.

You wanted to know Pete…

Where Do You Go To My Lovely? Lyrics  

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Peter Eardley Sarstedt[1] (10 December 1941 – 8 January 2017), briefly billed early in his career as Peter Lincoln, was a British singer, instrumentalist, and songwriter. He was the brother of musicians Eden Kane and Clive “Robin” Sarstedt.

Although his music was classified as pop, it generally encompassed ballads derived from traditional folk music rather than traditional rock and roll. He was best known for writing and performing the song “Where Do You Go To (My Lovely)?“, which topped the UK Singles Chart in 1969. Set to a “faux European waltz tune”[2] and described as “a romantic novel in song”,[3] it won an Ivor Novello Award. The record remained Sarstedt’s biggest hit, despite his releasing numerous successful albums and singles from the late 1960s onward.

He continued to tour throughout the 1980s, 1990s, and 2000s, mainly in 1960s revival-type shows, until his retirement in 2010 due to ill health.[4]

 

Disability News Service: Last-ditch appeal to new Welsh First Minister over independent living scheme #SaveWILG

A disabled campaigner has sent an 80-page dossier of evidence to the new first minister of Wales in a last-ditch bid to persuade him to abandon plans to close the Welsh government’s independent living grant scheme.

Nathan Lee Davies has written to Mark Drakeford with just two months left until the planned closure of the Welsh Independent Living Grant (WILG), which was itself set up as an interim scheme following the UK government’s decision to close the Independent Living Fund in June 2015.

Davies, who has led the Save WILG Campaign, told Drakeford in an open letter this week that closing WILG would leave disabled people with high support needs “at the mercy of cash-strapped Local Authorities who seem intent on cutting vital support packages across the board with no guarantee that further cuts will not follow”.

He said that local authorities “seem to be treating disabled people as a burden”.

Davies points out in the letter that Drakeford had promised – during his successful campaign to lead the Welsh Labour party last year – that if an independent evaluation of the WILG closure showed the new system “not working as well as the old one” then he would be “prepared to reverse it”.

WILG was set up by the Welsh government – with UK government funding – as a short-term measure to support former ILF recipients when the fund was closed in June 2015.

But the Welsh government is now closing WILG and transferring the funding to local councils, and by April the 22 local authorities will be solely responsible for meeting the support needs of all former ILF-recipients in Wales.

Davies said the “deep dive review” of cases in which WILG recipients were having their support cut was “full of errors” and had failed to consult the disabled people who will be affected.

He pointed to his own experience at the hands of his local authority, Wrexham council, which he said had treated him “abysmally”.

Davies, who has a life-limiting condition, said that the process to reassess his support needs, due to end in September 2018, had still not been completed and was having “a negative impact” on both his physical and mental health.

He described how his social worker had laughed when he suggested he needed 24-hour support and told him that no-one in the borough received that level of support.

He said that the lack of overnight support in his current social care package meant he had to stop drinking at 8pm at night and get ready for bed at 10pm, and often had to call his 68-year-old father to assist him in the night, even though he lives a 10-minute drive away and has arthritis in both hands.

The dossier, which has already been shared with the deputy health and social services minister Julie Morgan, includes a description of a day in his life, from last January, showing the poor level of support he already receives – even before the closure of WILG – and the pain and indignity this exposes him to, as well as the lack of choice and control in his life.

Davies says: “It is 2018 and I am still being treated like a second class citizen.

“I have a progressive condition of the nervous system which is accelerating at quite a rate, yet I still have the same amount of inadequate care and support hours that I did in 2010 when I first began independent living.”

He updated this by posting a new blog yesterday, showing that little had changed in the last year.

In the dossier, he warns the Welsh Labour party: “I do not want to spend the last days of my life completely unnecessarily fighting against the party I have defended and campaigned for across many years.

“But I will if I have to. Please don’t make me.”

The dossier also includes a letter from a director of Disability Wales, Trevor Palmer, in which he says the planned WILG closure has “created serious disruptions” to his life, with local authority “incompetence and lack of understanding” that has led to his support package being “substantially” reduced.

A Welsh government spokesperson said: “We believe that disabled people’s ability to live independently should not be compromised by any changes to the way in which support is arranged for those people who previously received payments from the WILG.

“The first minister has just received Mr Davies’ open letter regarding the WILG and will carefully consider the detailed points it makes.

“He has asked the deputy minister for health and social services to consider what further action may be necessary to ensure disabled people in receipt of the WILG are not adversely affected by this change.

“The deputy minister has provided Mr Davies and the National Assembly’s petitions committee with details of the deep dive review.

“She also met Mr Davies at his home to hear his concerns and discuss the issues raised in his dossier.”

He said the deep dive review had seen the 22 Welsh local authorities audit all cases where they intended to cut the WILG element of people’s support.

This found planned reductions in about 157 cases, and increases in support in a similar number, out of 1,174 people.

He claimed that the cuts had taken place because “some people had developed a need for healthcare rather than social care while some, due to their support being provided in a different way or being of a different type, had a reduced need for care overall”.

He accepted that two questionnaires, commissioned from the All Wales Forum of Parents and Carers of People with Learning Disabilities, had had a low response rate, but he said that responses to it “have been positive about the way assessments have been undertaken and the outcomes people have received”.

Charlotte Walton, Wrexham council’s head of adult social care, said: “We cannot comment on any individual’s care and support needs.

“However we do not accept the allegations being made.

“We have carried out all of the WILG reviews in a person centred and inclusive manner and working with the individual recipients of the fund [has]enabled them to achieve positive outcomes from the reviews.”

Davies said he would now push for a meeting with the first minister.

He said: “I am not going anywhere and will continue to fight this until justice is served.”

Picture: Nathan Lee Davies with Labour leader Jeremy Corbyn

Time for a Laugh: Wrexham Adult Social Care Commissioning Strategy 2018-23

I have just found the following information on the WCBC website. It talks about how the Social Care Department has been “working hard” on a new commissioning strategy for those in need of care and support services.

It goes on to state that there has been a “great deal of engagement with staff, partners, providers and importantly the people who use our services and their carers“. This is the first I’ve heard of this and none of the 8 members of staff that I employ have heard about it either.

A cynical person might think that this is because WCBC do not want to hear the truth and are just working on a strategy that will protect their budget by creating flimsy justifications for acknowledges the considerable financial pressures faced by the Department.
Lucky I’m not a cynic…

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The following material was taken from the WCBC website. 

Why are we doing this?: 

Over the last year, the Adult Social Care Department have been working hard to develop its Commissioning Strategy, which sets out our vision for care and support services for the next five years. The Strategy has been the result of a great deal of engagement with staff, partners, providers, and importantly the people who use our services and their carers; which I hope many of you will have had the opportunity to be involved with.

The enclosed strategy is the product of these conversations. It reflects our understanding of what the people who use our services have told us they want. However, it acknowledges the considerable financial pressures faced by the Department.

The changes and service developments outlines in this Commissioning Strategy are some of the things that will help us to deliver the savings we are required to make.

What do we want to know?: 

We would be grateful for your feedback on the Strategy, and whether you feel it adequately reflects what our priorities for service development should be over the next five years.

Enclosed alongside the Strategy is a short questionnaire, which I would be grateful if you could spare the time to answer and return to the email address below

 socialservicescustomerfeedback@wrexham.gov.uk 

Start date 15 October 2018
End date 15 November 2018

 

Mind Games

My mind is cluttered up at the moment as the need to Save WILG increases and my disability continues to progress. Throughout all this I am surrounded by some amazing friends and comrades who really keep me going, yet still I remain intrinsically lonely.

This is not meant to be a self centred, depressing blog. I am just stating my feelings on a sleepy Sunday morning. Hopefully others will be able to relate to my story and it is in this spirit that I am writing.

After enjoying an evening watching the superb Joe Solo at The Sun Inn, Llangollen. This award-winning musician, writer, poet, activist, broadcaster and washing machine engineer hails from Scarborough. His musical odyssey began in 1987 fronting a bash-em-out band at school, and has seen him play seven countries either as lynchpin of pop-punk upstarts Lithium Joe or hammering out his unique brand of Folk, Punk and Blues in his own right.

He put on a wonderful sincere show that obviously came straight from the heart and he managed to spread his passion for politics throughout the packed pub.  As he was performing I couldn’t help but wish I had remembered to bring a #SaveWILG postcard for him to pose with. I had to compromise and took a photo of Joe and I after the gig so that I could show that he was a supporter of the campaign.

Then I saw the photo…

At the beginning of the evening I chose to wear my new New York City t-shirt in homage to John Lennon. Unfortunately, I do not resemble the former Beatle in any way whatsoever so could only be disappointed with a photograph of a chunky bloke slouching in a wheelchair with a recognisable t-shirt hiding his flab. I was disappointed with the picture. Joe looked great and we captured the busy pub behind us, but the shot was ruined by me. I guess this is what happens when you are a perfectionist trapped in a imperfect body.

john_600x

I think the problem is not that I am especially overweight. I recently got weighed and was pleased to find that I was only 13st. This is about average for someone of my age and height. The main issue that I have is my posture in my wheelchair as due to Friedreichs Ataxia my hips tend to roll forward causing me to slouch down to a uncomfortable position. My spine is of no use at all as I am suffering from Scoliosis which means my spine has a sideways curve.

I guess this is one of the hard things of living with Friedreichs Ataxia – it is constantly changing due to its progressive nature and I am always having to come to terms with accepting changes to my body. At a time when I am fighting the Welsh Government, Wrexham Council and Wrexham AFC this is particularly hard to cope with.

However, I am a fighter and I will continue to fight while trying to learn to ignore media perceptions of what is beautiful and accepting that I should really love myself.

I really should spend longer writing this blog, but I just do not have the time to explore my feelings in a deeper way. Tomorrow afternoon I have a meeting with Wrexham Council that I need to prepare for plus countless emails I need to write without any comfort eating…

The fight continues.

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After watching Joe Solo, my own creativity was sparked into life again and when I got home I wrote the following Tanka while lying in bed.

Sepia stained youth

 Running free through fields of gold

Stranded in the past

As your whole body erodes

Revealed in digital form

 

 

If It Doesn’t Challenge You, It Won’t Change You

It has been a busy old week that has included hospital visit to the cardiologist and physiotherapist, as well as stressful meetings with the Wrexham Supporters Trust board and illuminating emails from Welsh Labour bureaucrats  that clearly show that the Welsh Government have something to hide over the WILG debacle.

HEALTH 

It has been a mixed week health wise. Depending on where you stand, my visit to the cardiologist revealed good/bad news that my heart is in good working order and I don’t have to return to the cardiologist for another twelve months.

I have also been to see the physiotherapist who raised concerns about my posture in my wheelchair. This echoed concerns raised by the wheelchair assessment team who I visited a few weeks ago. While I was with the physiotherapist she showed me, on a skeleton, the extent of my scoliosis. It was upsetting to watch her bend the spine of the skeleton in to a disfigured position. I guess this is life with ataxia – constantly trying to come to terms with a disability that is forever stressing.

MEETING WITH WREXHAM SUPPORTERS TRUST 

On Wednesday night I was at a meeting with some familiar faces who I have mingled with for over thirty years, as a Wrexham AFC supporter. However, the majority of people at this meeting between the board of Wrexham Supporters Trust and the Disabled Supporters Association Committee did not seem to show any understanding of consideration to the plight of disabled supporters in general.

This is neither the time, nor place to go into a deep discussion of everything that was said at the meeting – I will save that for another day, but it should be noted that I was hugely disgruntled by the attitudes shown by a so-called ‘community club’.

SUSPICIOUS MINDS

I will be writing a separate blog dedicated to the highly suspicious actions of the Welsh Government in the latest communication as the battle to #SaveWILG continues and intensifies.

I am being put under an intense amount of pressure as my body deteriorates and being forced to fight for the right of disabled people against the Welsh Government, Wrexham Council and Wrexham AFC. Luckily I have been fighting all of my life and I have the strength and stamina to carry on standing up for what is right thanks to my amazing circle of friends and comrades…

TOM ALLEN 

36634891_10155554936421846_1430258593860419584_On Thursday evening [26/7/2018] I went to watch the supremely funny Tom Allen in action at William Aston Hall at Glyndwr University.

I have watched this comedian performing before, when he starred alongside Suzi Ruffell at the Catrin Finch Centre, which is also part of Glyndwr University.

When I heard that Allen was performing at the Catrin Finch Centre again, I quickly snapped up tickets. This was some time last year I think. Earlier this year I received a phone call saying that due to the high demand for tickets, the show would be moved to the larger William Aston Hall. I was disappointed by this as the Catrin Finch Centre is a more intimate venue, where comedians do not need to rely on the use of a microphone. This is good for me and my hearing, which struggles to fully grasp what is being said when a voice is projected through a microphone.

Last night proved that this is indeed the case. I was frustrated beyond belief as Allen energetically pranced around the stage in front of me, and came out with classic quips judging by the roars of laughter around me. Alas, I could not decipher any of the jokes and could only pick up on certain words such as ‘party rings’, ‘ham sandwiches’ and   ‘Phil Spencer’.

Subsequently, I decided to leave at the interval. This was no judgement on Tom Allen, but just another frustrating sign that my progressive condition is accelerating and stopping me from doing things that I enjoy. What I really needed was subtitles and this got me thinking. Last week, I attended a Disability Wales conference on Direct Payments in Newtown, Mid Wales. Disability Wales had organised for  Palyntype support to be available.

This is basically a machine for typing in shorthand, now often used in transcribing speech to text for deaf people.This transcription was projected on to a large screen so those that are hard of hearing can follow everything that is being said. I found this to be extremely useful and beneficial, and would have appreciated it last night. If I ever #SaveWILG this is something that I would like to campaign for being used in may more locations across the country, as we strive to make events accessible to all.

I am hoping for a quieter weekend…