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Its scary that this can happen… having a son with Autisum and all our family health problems this is very close to home… please share widely… Dxxx

jaynelinney

The following true tale is the introduction into what will be a series of posts regarding a seeming miscarriage of justice and potential disability discrimination; names have been changed to protect the identities of these involved. The purpose of this post is to help the family concerned achieve real justice; please share as widely as possible.

Alison is a single parent of14 year old Adam, both live with various diagnosed and pending diagnosis health disorders including Fibromyalgia and Elhers Danos; Alison is also Autistic and symptoms suggest Adam is as well.

Due to Adams health, he found it difficult to cope with school from the beginning and despite special educational needs intervention, including one to one lessons he struggled experiencing bullying which resulted in him developing depression. These experiences became worse during Adams transition from junior to senior school, so much so that in 2015, Alison began to home educate…

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J was home but in a lot of pain and discomfort, we reapplied for ESA and J was awarded support group. Not surprisingly as he couldn’t move without someone pulling his leg as it was lifted or moved to the side or lifted down, which meant he couldn’t go anywhere without help. Once upright with crutches he was kind of ok as gravity acted as a pulling motion, I try to explain it to people as; do you remember those little wooden toys kids have, usually an animal of some sort. They worked by pressing a button underneath and as you pressed it the animal would collapse and when you let it go, it would miraculously ping back up to standing, all the seperate bits back together (held by elastic). J’s leg was like that, the tension had to be held to keep the cement spacer in line with his bones if it wasn’t well let’s just say we all became familiar with the sound of J screaming. He would get shooting pains as well that would make him yelp in pain and some times literally jump in his seat. He would get odd sensations of wetness or a sensation of someone touching his leg, and neuropathic pain as well. He almost always got these sharp painful pains just as he was falling asleep…

The first time he had to have the dressing changed was awful, the poor nurses and poor J. It goes against all their training to pull a leg that’s so badly broken and operated on, it took a few attempts before they really grasped pulling his leg, lol no pun intended…  In order to change his dressings the nurse’s had to lift it out of the cast, undo the wrapping, change the dressings, re wrap it and then put it back in the cast, all while pulling on his leg, I think every district nurse for miles came and had a go, they where great though working fast and as painlessly as possible, we can’t fault them we would never have got through those eight weeks with out all the nurses that came and helped, we owe them a grate debt.


Preparing to lift J’s leg out of the cast, all the cotton wool padding is cut so the nurse can lift it out, while me and another nurse prepair to whisk away the old padding and the cast so the nurse can put his leg back down cairfully all the time pulling on his leg. I cropped the photo so none of the gory bits would show, J wouldn’t want you to see those bits.

We got in to quite a good rhythm towards the end opening the cast, cutting the wrapping, lifting his leg out of the cast on to the footstool with his foot hanging off the end so the nurses could check his foot and all his other scars then re wrap the foot and anckle, then the lifting nurse would lift his leg, while we moved the footstool and re position it so J could rest while they wrapped the shin and knee area then one more lift and footstool move so they could wrap his thigh. Then the final lift and pull so me and a nurse could re position the cast and the lifting nurse could gently lower the foot and leg back in to the cast all the time pulling to create traction. By the end of it we would all be sweating, and if we all got it right J had suffered only a little pain. 


You can just see in the back ground the bottom half of the cast that we had to lift J’s leg in and out of to dress it. During the eight weeks J started to get a pressure sore on his heal, so sometimes we had to take the top half of his cast off at night so his leg and foot wasn’t under pressure for a few hours. The nurses tried everything to prevent a pressure sore forming it came close but they managed to keep it at bay.

Getting up and down the stairs was another challenge, I had to walk behind him going up as he was wobbly on his feet, I hate to think what would have happened if he’d fell I doubt I would have been much more than something softish to land on… coming down was safer, on his bottom with me holding his cast laden leg… one step at a time as they say…


(He’s shy) I adapted J’s trousers and made a Velcro fastener on one side so he didn’t have to worry about getting his leg in and out of a trouser leg.

We settled in to a routine J’s leg started to heal and his pain levels reduced.

and then…

 he fractured his right wrist in a bad fall, it wasn’t the first or last but it was the worst… 


now J had one ordinary crutch and one gutter crutch to walk with, and a wrist in a blue cast from his fingers to his elbow.

Sometimes I think if someone wrote this as a novel everyone would think how far fetched it was…

Slowly and for J very painfully the eight weeks passed as summer turned to autum, another autum missed by J, his favourite season, we finally reached the magic eight weeks and it was October 2016 and time for the second op, replacing all the prosthetic metal work and seeing if they had managed to kill the bug…

J once again left for oxford and we waved him goodbye yet again… 

Despite J’s worries the second op went well with less complications, this time we all went up to visit. J loved seeing our son and having company in the first few days after his op… not long after we came home they got him up and about starting physio, and with in two weeks he was home, original bug free and on anti fungles for a possible secondary infection, but one much easyier to get rid of… J started physio, and discovered his left, still non bendy leg was now two and a bit inches shorter than the other hence all the falling over, he’s since had special shoes made which make it easier for him to stay upright, till he takes them off and forgets his legs are difrent lengths… take your laughs where you can get them folks… 

Id like to say at this point a deeply grateful thank you to J parents for taking me and our son to see J so much over this awful time it really helped me and L and I know it helped J to have us close by for at least some of the time, I know it must have cost a lot, and not just in energy… 

J passed his first year of the PGCE and when talking to his teachers and apologising for the quality of his final essay, his teacher said when you have a teacher who can teach students with such profound support needs, as well as you do, we don’t worry about the quality of an essay… how lovely was that….

I passed my TDL as well and I had started back to work on reduced hrs for obvious reasons…regardless of my caring responsibilitys I had learnt a valuable lesson about the limitations I sometimes forget that ME and Fibro place on me and how pushing those limitations can be bloody stupid… I’m still trying to recover, I’m not really managing that yet, consiquently, I have not extended my hours even now.. I learnt my lesson I have limited capacity for a reason and I’m still paying the piper for last year… 

Our son has been diagnosed with high functioning autism to add to the sensory processing disorder, he calls it asparagus syndrome I like his sense of humour. It’s nothing we didn’t expect and he’s still just L at the end of the day… with all his joys and challenges… 

Fast forward to July 2017 lots has happened this year, J completed his commission a bitter sweet experience, and he’s going back to college to complete the second year of the PGCE. It’s going to be difficult for him but he wants to get it done because…


(J’s commission, Sorry about the iffy photo)

 J’s having counselling for a possible amputation, as well as meeting up to chat with people that have had the op…

 J’s new prosthetics won’t last ten years probably, maybe a good five or eight maybe, he’s 46, the older he is the harder it will be for him to adjust to a prosthetic limb.  I don’t think he wants to lose any more years to the non bendy leg. It’s is most likely J will have an above knee amputation after he finishes college in 2019… the Long Road continues… 

Oh and I have been diagnosed with AF, Atrial fibrillation… 😊 I have a heart condition… YAY…

I think now you can see why it’s taken me so long to put this all down.

And just because they can the DWP have just told J that his ESA will stop in September as he will no longer qualify under the 365day rule… again…

And worryingly J has been complaining that his leg hurts… I’m hoping with every breath that it’s a healing pain…

and I’m still really really tired…

Live long and prosper my people…

Dxxx

June 2016 and J has been told he needs further surgery in fact two major operations with an 8 week gap between them. This is the surgery that was cancelled in 2015 because it was to risky… The surgeons would remove all the prosthetic metal work from Jons leg, three inches of prosthetic bone below the knee, the entire knee and thirteen centre meters of prosthetic bone above the knee, plus all the anchoring titanium rods that reach from his hip to his ankle almost.. It was infected with a smart bug that could hide from the antibiotics and learn to adapt to them so it all had to go, then they would place a sergical antibiotic cement spacer in the gap and also move one of his calf muscles from behind his leg and flip it over to cross over the top of his knee, the hope was that this would improve his ability to bend his knee and improve his mobility.

J applied for extra time to complete his course work, and applied to take a year out to have his ops and recover. He was still trying to attend class when he could but he was on lots of pain killers by this point and he was unable to walk with out crutches, this makes teaching hard and tireing even without the pain and med side effects. His leg had started to weep out of the red patch above his knee, his body’s way of reliving the pressure.

By this time I was finishing off my last two assignments, working way more than I should have been, thinking roll on summer. I desperately need to rest, looking after our son and also doing all I could to help J, whilst trying to prep for hospital surgery mode… I knew J was going to be pretty incapacitated during that 8 weeks and he was going to be home with me, I needed to prepair…

J’s admission date came and I bundled him off with his dad and as much college stuff as he could carry, we where going to have Skype sessions to get his final essay in  after his op… but things never run smoothly… J’s op was postponed for a week while they ran tests and a plastic surgeon became free to do the muscle moving part of the op. A gift really, J and I used this time to do most of his work, him writing me checking it and me finding his evidence among the reams of paperwork at home.

J had his op and came out of surgery, the surgeons had removed all his metal work, moved his muscle, and cleaned and filled the little red patch which turned out to be a sinus, a hole that ran right through to the centre of his knee where the infection was and worked like a siphon, basically sucking the muck out of his knee bringing it to the surface, like a straw. Ugh… He woke up groggy and in pain but ok, later that evening I got a call from his surgeon telling me he was having breathing difficulties and they where transferring him by ambulance to another hospital for a scan they suspected he had a blood clot on the lung, they said he wasn’t doing well and that they would keep me informed… well I didn’t get any sleep that night, calling everywhere I could trying to find him, eventually I found the right department in the right hospital and they said J was resting that his scans where clear and he was doing better… J’s version of events are very different and a lot scarier… the events of that night have left him scared, I think he’s developing some form of hospital ptsd… J was transferred back to the Nuffield a few days later…

J’s Mum and Dad had arranged to take me and our son up to oxford to see J the weekend after his op, however just before we left J called to say they might be letting him come home. We decided to leave our son with grandma and just me and J’s dad left to visit J in oxford just in case we had to bring him home… we arrived in Jons room on my birthday, best present ever 😊, and ten minuets later a whole crowd of Dr came in and told Jon he couldn’t leave till the following week because he had to have a pick line put in as the smart bug he had would respond better to introvenus antibiotics and that would give them more options later on, it made sense to all of us but I think that’s the closest I’ve seen J come to open rebellion, he really wanted to come home. 

 J’s leg had been completely encased in fibreglass, he had a full leg cast on but there where major complications, firstly he couldn’t move his leg without it being pulled, it needed to be held in traction while it was moved or he would be in agony, and I needed to learn how to hold it… gulp… the process of getting that cast made was a horror story of J in screaming agony while they lifted his leg to have the casting material wrapped around his leg. He was also going to have to have the dressings on his leg changed twice a week, his leg had scars reaching from his anckle to the top of his thigh, and the entire leg all the way to his toes was wrapped in cotton wool bandages to cushion the leg inside the fibreglass case. Changing the dressings on this leg that couldn’t be lifted with out someone pulling on his leg, that would be the same leg that was incased in fibreglass… terns out it had a lid, that came off but that in no way made it easy to do… was going to be a challenge, he would also need his antibiotics everyday so nurses where arrange to come to the house every day. 


J’s leg encased in a fiberglass cast…

We spent the next few days finalising his essay between drs visits and him sleeping. He was still in significant pain…

Me and his dad came home all six hours on the Sunday and had a rough plan to go back up on the Thursday the following week to visit again and hopefully bring him home… this gave me three or four days to get the last bits and bobs of J’s assignment together, fancy folder that sort of thing… But… on the Monday I was sitting at the computer printing out some paperwork that needed to be handed in with the essay when the phone goes and it’s J’s dad, J had just phoned he was being discharged onWednesday afternoon could we get back in time to pick him up.. what! I still had to get his essay handed in across county, not to mention sorting our son out… needless to say it all got sorted involving lots of panicking, mad driving around Cornwall dillivering essays and children to aunties and colleges, thankfully in the right order then we headed off back to oxford… phew… six hours for me to rest before the hospital I’m so glad I can’t drive J’s dads car… so very thankful for J’s mum and dad… as well as my own family.

We got to the hospital the next day and after many hours of waiting and packing and waiting more…

They finally let us go….

Getting J home sitting sideways in the back of his dads car was horrid, he felt every bump, every time his dad had to brake, and then we discovered… he had no pain meds in his hospital bag…

We tried to contact out of hours for help but they couldn’t help till we got back to Cornwall, J wanted us to press on home so we counted the miles all the way, we stopped once in Cornwall to phone out of hours again they said they would call us back but to keep driving home… they called ten minuets after we got home hours later, by which time I had found some pain relief in the cupboard and we decided to talk to our GP the next day… Grrr

We were home and the eight weeks where just beginning.

To be continued… Dxxx

Hi folks, well that time out really was a time out… lol  The last part of our story was in Jan 2015 and it’s now July 2017, and what a long road we have been on…

At the end of the last our story post, J’s surgery had been cancelled, the Drs decided to stop his antibiotics and  he’d decided to get on with his life and despite several setbacks he was on the first of many tiny steps towards a new direction for work an career.

During this period we managed to get a referral to the Autistic Spectrum Disorder team for our son for an assesment, we where on the waiting list, but it was going to take approximately 18months before we could see them… oh the joy… 

Strangely and by seeming coincidence, the course J needed to do, in preparation for the PGCE and working as a teacher the PTTLS course, was going to cost £600 and seemed to be beyond us, when J’s dad happens to mention that a local group he had heard of (he spent most of his working life as a youth worker) was doing a PTTLS like course and that he would enquire aboout it… a couple of days later he contacted us with the info and said ring up, I think it’s free… Wow what a score, J phoned and booked on the course, it was a six week crash course and it was free… woohoo… and that wasn’t the strange bit, the course was being held in the business park literally over the road from us or behind the houses over the road from us, a very short ten minute walk from our front door, how awesome was that…   lol… 

J through himself in to the course battling some significant anxiety, he had been away from the work/education environment for a long time, but despite this he completed the course with flying colours… very proud 😊

At this point J started volenteering for the college and started accompanying me to work as my teaching assistant learning about how we do all the paperwork involved in teaching and the hands on teaching process. Experiencing the ins and outs of teaching people with mental health and disability issues. All in preparation for college in September  2015…yes he was offered a place on the PGCE part time, I became a fan of this moving forward thing, so much so I applied to do the TDL level 5 myself, (Teaching Disabled Learners) as well as taking on more hours… (in retrospect not the most sensible idea..)

Summer hols some time to prepair for all the stuff we had signed up to do yikes… and a chance to go camping for a long weekend… hello Beth… lol… worst weather ever, 50 mile an hour winds and torrential rain… but we survived and had a great time. Even though it nearly killed us both, note to self theres nothing wrong with clean sheets and room service… 

September came and J started his course, he was alocated a mentor and placement, teaching horticulture to students with learning difficulties and some PMLD students. These where students with profound and muliple learning disabilitys, the problems J students had ranged from Autism and Down’s syndrome, to students that couldn’t walk, talk, read or write. He also continued to work in my class teaching students with depression and anxiety as well as some other mental health problems such as schizophrenia, bipolar disorder, borderline personality disorder, multiple personality disorder and autism. So quite a selection of different learners and different experiences.

J coped really well, surprising everyone including himself at how quickly he settled in to teaching, seeming to find teaching even the most challenging students with professionalism and compassion as natural to him as painting has been for years, did I ever mention J’s an artist? He even took on a commission to do a painting of a friends home, this moving on thing was really out of control… (the run away train when down the track and she blew….) lol…

We both settled in to student and teachers lives spending most of every day doing paperwork…I’m not kidding!

January 16 came and I was asked to take over a ceramics class, yay teaching my specialism what more could I ask and the extra money was a god send as we where struggling because of the 365day rule… in February J started to complain his leg hurt, just aching and we put I down to working to much, a week or two later he went to the GP as his pain was getting quite bad, the GP said nope nothing wrong just rest more and take some pain relief, luckily it was almost Easter so we didn’t think much of it.

Just before Easter I was asked to cover another class because the teacher was off ill, I had been doing some cover work over the last few months just the odd extra class here and there so I was used to dropping in to a class, this was a horticulture and art class and was a whole day, now I was beginning to realise that wanting to do something and actually doing it where very far from the same thing… but money needs sometimes over rule our better judgement. I was doing well on my TDL, working as much as I dare and trying to make up for the lack of income that was by no means J’s fault.

Easter came and J’s leg wasn’t improving if anything it was worse, the same GP still insisted nothing was going on, no infection he said just rest… this was the same GP that had missed J’s infection before so we where not convinced and started to watch J’s symptoms more closely…

The Easter holls finished and we both started the final push J was working towards the end of his first year and I was working towards my final essay and resuch project as well as working. By this time it was mid may and J suddenly had a pain attack when I wasn’t home. When he couldn’t reach me he got our son to phone grandad and he called an ambulance, Jon was in agony easily as bad as some of his early pain back in 2012-13 when he had the bone infection. With his history the paramedics decided to take him in and he spent an over night stay in our local hospital in lots of pain. They sent him home the next day, they couldn’t find anything wrong.

J tried to carry on going in to class and doing his resurch project on comunicating with PMLD students that couldn’t speak or write, a fascinating and frutefull piece of work that shows promise for improving communication between staff and students.

Finally after nearly 18 months of waiting our son had his assessment for Autism but it would be some time before we would get the results.

A couple of weeks later J was rushed in to hospital again in agony, this time he was there for ten days while they tried to get his pain under control. This time they told him you have an infection but we can’t find it, we can’t pinpoint where it is but we know you have it. By this time J had a small red patch on his leg just above his knee, things where not looking good. The Drs finally discharged him because he had an appointment to see his specialist in oxford the following week. That appointment got cancelled and J muddled through another couple of weeks of college.

He finally got to see his specialist at the beginning of June and as we suspected they confirmed his bone infection was back with avengance and they had no choice now they would have to operate and do the op they had cancelled in 2015.

To be continued… Dxxx

Debunking the lies in the Torys letters… Dxxx

The SKWAWKBOX

may i'm lying.pngLetters landing on doormats this week sent by Theresa May to unwary voters shows signs of Tory desperation – and an shameless lie.

The letter, snappily titled ‘Making Brexit a success is central to our national interest‘, carries an image of Mrs May that can hardly be called engaging (shown above, although we added the text) – unlike ‘rock star‘ Jeremy Corbyn – and some extremely awkward language, as well as that lie. Here it is.

May lie leaflet p1May lie leaflet p2.pngThe leaflet claims that everyone will pay more tax under Labour, when Labour’s manifesto contains a firm promise that no one earning under £80,000 will pay more in tax or national insurance, meaning that 95%of the people of this country will pay nothing extra.

This is the same lie that the CCHQ has been promoting as ‘fake news’ on social media:

con fake news taxesWe expect the Tories to mislead and misrepresent. But outright…

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Very Moving… please read… Dxx

Pride's Purge

A paramedic has written a moving description on Facebook (see below) of the difficulties he has to face every day in his job, and how he is paid a pittance of just £12.35 an hour to do it.

This is because the Tory government has over the last 7 years capped paramedics’ and other public workers’ pay rises at 1%.

The cabinet ministers who made that decision, however, have seen their own pay rise over the last 7 years to the point they are making approximately £117.92 an hour*, on top of which they can also claim expenses, subsidies and other perks.

A perfect example of Theresa May’s warped Britain today.

Brian Mear:

I joined the Ambulance Service in 1986.
For over 28 years I worked doing “Front Line” work. That’s Emergency work. Covering 999 calls. For the last 6 years of my service I worked alone predominantly on nights…

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Do you know anyone who has received this survey? Dxxx

The SKWAWKBOX

As anticipated, last week’s article on the supposed ‘survey’ that appears to be a device to obtain voters’ data and persuade them to apply for a postal vote via the Tory party has flushed out another example. This one is being used at the other end of the country from the first, in Cornwall, but with striking similarities that suggest that we may be seeing the ‘tip of the iceberg’ of a widespread new Tory tactic as a variation on the already widely-used theme that aims to control the postal vote application process.

Voters in Truro Tregolls are receiving a ‘survey’ leaflet from their local Conservative party:

cornwall1cornwall2.jpgAgain, the leaflet invites respondents to indicate that they want a postal vote – and provide a Freepost address to encourage people to apply via the Tory office rather than direct to the ERO (Electoral Registration Officer) as electoral rules require:

tregolls freepost.pngAnd again, the…

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Thought on chronic pain and fatigue and the social model… Excellent points all… Dxxx

Tony Baldwinson

Some years ago there was a strong debate around whether the social model of disability was flawed because it saw all discrimination as created by society and, it was claimed, had no answer for disabled people who had personal experience of chronic pain and fatigue. There is a link to the initial discussion below.

What is it that society must do, it was asked, to remove the barrier of chronic pain and fatigue and thereby enable such disabled people’s full participation in society? Society could do nothing here to help, was the suggested answer.

In that debate, part of the alternative answer was that the social model is just that, a model, it is not the reality itself. As Vic Finkelstein said many years ago, a model of a house will vary depending on the context, such as being in Africa or the Arctic, but they are still both models…

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Xplan a brilliant idea for giving our children a way out of difficult situations… Dxxx

Bert Fulks

Friends, as most of you know, I get to spend an hour each week with a group of young people going through addiction recovery.  Yes.  Young people.  I’m talking teenagers who are locked away for at least six months as they learn to overcome their addictions.  I’m always humbled and honored to get this time with these beautiful young souls that have been so incredibly assaulted by a world they have yet to understand.  This also comes with the bittersweet knowledge that these kids still have a fighting chance while several of my friends have already had to bury their own children.

Recently I asked these kids a simple question:  “How many of you have found yourself in situations where things started happening that you weren’t comfortable with, but you stuck around, mainly because you felt like you didn’t have a way out?”

They all raised their hands.

Every single…

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How easy it is when you live in poverty to fall off the edge in to destitution… helped by government policy and banks policy. How insane is it to charge people who have no money extra money for being penniless… makes me so mad… we have forgotern how to see the people effected anymore… Dxxx

I'm a JSA Claimant

Food bank use is at record high says the headlines. Trussell Trust released figures recently that show that 1,109,309 three day parcels were handed out. The primary reasons are shown below.

primary-referral-causes-768x384

For nearly 3 years now I’ve been tweeting about food banks and the efforts made by local communities to support them. For almost 3 years I have shown examples of families who have needed them, some with dramatic stories that normally involve the DWP or another Government department not doing their job or being overly officious. For all that time I have tried not to become one of their statistics but now it has reached a point where I feel I have no choice.

Mine is not a headline grabbing story. Rather it is one of slowly getting into more debt, by a few pounds here and there each week. Since I went off JSA I have struggled to…

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