The pretence of health care in America, and it’s echo on the NHS #health #nhs #disability

 

A Facebook friend in America has just posted that one of the drugs she takes for her myasthenia, a drug I also have to take, has increased from $14.70 to over $403 per month!

That’s a life saving at best, or life changing at worst, drug that’s being priced out of people’s range so companies can profit and screw the humans who are suffering as a result.

They’re not even pretending to provide health insurance anymore, let alone health care, it’s now just health for profit and if you can’t afford it is bankruptcy, suffering, or death. No civilised country should treat its people like this, but then I suppose that’s a very clear sign of spotting an uncivilised society when money and profit is worth more than peoples’ lives.

Thankfully, for now at least, the UK still has the NHS, where health care is seen as a basic human right, not a privilege, and it’s paid for and supported via taxation (not free as too many journalists mistakenly state) or otherwise, if I had to pay $403 a month for just ONE of my tablets – and then who knows how much for the other nine (including an opiate based one which I’m sure wouldn’t be cheap) – it wouldn’t matter that I earn a more than comfortable living, I couldn’t afford just my monthly medicine. The medicine that keeps me healthy. Keeps me functioning. Keeps me alive.

If I had to pay for my monthly medicines I’d be bankrupt fast, and suffering soon after. Then I’d probably be dead.

And I’m what’s probably best referred to as a high functioning disabled person.

There are people with more medical demands than me. There are people with less money than me. There are people with a combination of both.

So, if the UK ever goes down the route were it allows health care to become a for profit business, where a medicine or a prescription that one month cost £14 pounds suddenly, the next month, cost £400, the same as a mortgage payment, for ONE drug, people will go bankrupt. People will suffer. People will die.

And the scary thing is the fact that this practice in America is not just allowed, but openly tolerated and flouted as one of the world’s best health care systems, should be terrifying because the UK, and it’s Government, is slowly but surely privatising disparate parts of the NHS off; they are opening to tender whole dialysis units and allowing them to be run by private companies; whole hospitals are being built, managed, and run, by private trusts; and bit by bit the NHS as we know it is disappearing as the Government decries the missed targets and long waiting lists, but constantly underfunded and undercuts it, deliberately weakening it while giving more and more to the profit making private sectors.

So while we look on in horror at America when essential medicines increase ten or a hundred fold, and wonder just how the Martin Shreklis of the world could come to be, we have to be careful that we aren’t neglecting to keep an eye on our own back yard, and the slowly disappearing NHS because, one day, it could be us realising we can no longer afford our life changing, our life saving, medicine. But, by then, it’ll be far too late.

 

When #identity is not your own #equalityni #monitoring

All views my own, of course!!!

Through my whole career with Probation in Northern Ireland, from the moment I filled in the application form, I have been honest and upfront about my political and religious leanings and filled in my ‘Monitoring Form’ (where details about my ‘background’ such as gender, sexuality, nationality, ethnicity, disabled status, etc are captured) completely honestly.

Northern Ireland is rather peculiar about the religious aspect in particular, as they try to force you to put Protestant or Catholic, even when you are not, and what you are ‘perceived’ as being depending where you went to school or lived. As I have no religious persuasion at all, and have moved around various countries, and many schools (including, state, catholic run, and public/boarding) I thought that I had passed their idiotic grilling 16 years ago when I pointed out that I was indeed an agnostic, I did indeed have family of both religions, I did indeed go to schools run by both (and neither) religions, and lived in an area which was neither predominantly Catholic nor Protestant and, also, as I had lived extensively outside of Northern Ireland and could be perceived as English, British, or even European in background, I didn’t think there was an issue …in fact I had even been ‘used’ in recruitment panels as ‘other’ when there was an imbalance in religion members on the panel.
 
I’ve also made a conscious effort to advocate for integration in Northern Ireland, putting both my kids to school where religion isn’t the driving factor (like in the majority of segregated schools here) and have discussed/argued extensively with MPs, MLAs, and Ministers on the topic.
 
So imagine my surprise (horror and disgust) to find out today that someone, at sometime, has taken it upon themselves to choose my community background/religion for me as ‘protestant’?! Not only that but when I raised it with HR I was told that it may not be changeable because it is now a matter of public record with the Equality Commission.
 
…i was told that perhaps someone decided I was ‘perceived’ to come from that background after all and they should have notified me. Well screw that. I don’t actually give a damn on either front. No-one has the right to decide that for me in the first place, it is MY choice what – if any – religion or background I have and, NO-ONE notified me about anything or I would have put a stop to it back then.
 
As for not being able to change it …WATCH ME!!!
 
If someone had decided my gender or sexuality for me, or decided not to accept my choice, do you think that we’d be having this conversation now? No, I don’t think so! So why should my religion/background be any different?
 
Also, for whatever reason – despite my disability being announced and known about in a business/corporate setting since 2001 (and me falling afoul of HR/sickness policies since then to date thanks to my disabilities) in the HR monitoring details I am not listed as being a disabled member of staff either.
 
So, looks like monitoring and correct capturing of information matters …but only when it matters to them!!!
 
/rant

REBELLION UNVEILS CREATIVE TEAM BEHIND ROY OF THE ROVERS REBOOT

 

Phenomenal UK talent from the worlds of comics and children’s fiction sign on for the return of a football icon. 

Rebellion Publishing is proud to reveal its latest set of signings:  the creative team for the highly anticipated 2018 reboot of Roy of the Rovers. 

Internationally acclaimed comics writer Rob Williams (Amazing Spider-Man, Adventures of Superman) and artist Ben Willsher (2000 AD, Doctor Who Magazine) are the team behind the brand-new Roy of the Rovers graphic novels, beginning with Roy of the Rovers: Kick-Off, to be released 6 September 2018.  Best-selling children’s author Tom Palmer (Football Academy, Foul Play) takes the lead on Roy of the Rovers: Scouted, Rebellion’s first foray into middle grade fiction, to be released 4 October 2018.

Also on the Roy of the Rovers team sheet is graphic novel editor Keith Richardson, and Rob Power, who will be editing the middle grade fiction alongside his role as Roy of the Rovers Brand Manager.  

•  Rebellion to launch a brand new, rebooted Roy of the Rovers in 2018.

•  Leading British comic talent Rob Williams and Ben Willsher are the creative team behind new Roy of the Rovers graphic novels.

•  Best-selling British children’s author Tom Palmer to write Roy of the Rovers middle grade fiction. 

•  Publishing plan includes three 56 page hardback graphic novels per football season, launching in September 2018, January 2019 and April 2019.

•  Middle grade illustrated fiction titles to be released alongside the graphic novels, launching in October 2018 and following on in February 2019 and May 2019. 

For more information please contact Roy of the Rovers brand manager rob.power@rebellion.co.uk. 

Rebellion CEO Jason Kingsley OBE commented: “Roy of the Rovers is an enormously exciting project for us, and we’ve been working hard to ensure that we respect the legacy of this iconic British character. We’ve assembled an incredibly strong team to bring Roy Race back for the 21st century, and I look forward to following Roy’s journey through the always exciting world of modern football.”  

Rebellion Head of Publishing Ben Smith commented: “We’re delighted to have such a high calibre of creative talent on board for our reboot of Roy of the Rovers. Rob, Ben and Tom’s stories are bursting with all the excitement, drama and football fervour of the classic Roy of the Rovers comics, while giving us a thoroughly modern take on the character.  We can’t wait for a new generation of fans to read them.” 

Rob Williams commented: “I read and loved Roy of the Rovers as a boy – I even had the old Gola Melchester Rovers kit – and I have very fond memories of the Roy annuals arriving on Christmas Day with wonderful David Sque art on their covers. Roy’s a British football icon. Even now, a ‘rocket’-like goal is a Roy of the Rovers moment. So I’m delighted to be part of the passionate team bringing Roy’s adventures to a new era of football fan.” 

Tom Palmer commented: “Millions of girls and boys dream about being their favourite football player and being scouted and playing for their favourite team. I had that dream. Sadly it didn’t come true for me. But, being scouted and succeeding in my trial to write Roy of the Rovers fiction is a dream that has come true. There is no other fictional footballer I would rather be and write. And I intend to write these books with the same passion and commitment Roy shows when he pulls on the red and yellow of Melchester Rovers.” 

Ben Willsher commented: “Roy of the Rovers was a big part of my childhood. The annuals stacked up in my bookshelf, and the comics burst out of my cupboards. Growing up I dreamed of helping Roy score goals and lead Melchester to the top…. I finally get to do that- result!”

 

 

Rob Williams is a writer, mainly of comic books. He is currently writing Suicide Squad for DC Comics, where his previous credits include Martian Manhunter, Batman 66, Sensation Comics, Adventures of Superman, Legends of The Dark Knight, and Madame X. He has also written Doctor Who: The Eleventh Doctor for Titan Comics, and Amazing Spider-Man, Wolverine, Captain America and The Falcon, and Revolutionary War for Marvel. His Rebellion credits include Judge Dredd, The Ten-Seconders, and The Grievous Journey of Ichabod Azrael for 2000 AD. Rob supports Arsenal. In 5-a-side he is, sadly, more Nigel Winterburn than Thierry Henry.
For more information, visit www.robwilliamscomics.co.uk

 

 

 

Tom Palmer is the author of 40 books for children about sport and history. His books include the Football Academy and Foul Play series, published by Puffin, as well as Over the Line, a fictional account of the World War One Footballers’ Battalion. Tom is a regular speaker in schools and works closely with organisations like the National Literacy Trust and the British Council to promote reading for pleasure.
His website is www.tompalmer.co.uk

 

 

 

Ben Willsher is a British comics illustrator, whose credits include Judge Dredd, Durham Red, Strontium Dog, Tharg’s Future Shocks and Sinister Dexter for 2000 AD, alongside extensive cover work for both 2000 AD and the Judge Dredd Megazine. Ben has also illustrated several stories for various Doctor Who annuals, and his work has been regularly featured in the Doctor Who Magazine.
For more information, visit www.benwillsher.co.uk

 

 

 

 

 

Rebellion is an internationally renowned video games developer/publisher and leading publisher of comics and fiction, based in Oxford, UK. Founded in 1992 by Chris and Jason Kingsley, Rebellion’s titles include the bestselling Sniper Elite series, the wildly popular Nazi Zombie Trilogy, and PlayStation VR title Battlezone. The company is home to legendary UK comic 2000 AD and is the proud custodian of Judge Dredd, and recently acquired an extensive archive of Fleetway comics from Egmont UK, in a deal that included titles such as Roy of the Rovers, Misty, Charley’s War and many, many more. The publishing division is also home to award-winning science fiction imprints Solaris and Abaddon, and is proud to publish some of the finest talents in genre fiction.

 

Roy of the Rovers is the stuff of legend. Charting the career of charismatic Melchester Rovers striker Roy Race, Roy of the Rovers first appeared as a strip in Tiger in 1954, proving an instant smash with football-mad boys. Graduating to its own comic in 1976, Roy of the Rovers was where a generation of British football fans went for drama and glory, and ran for over 800 issues. Extolling the virtues of fair play, teamwork and great goals, Roy of the Rovers is the definitive football comic, and is set to return in 2018.

 

 

Reading of ‘Rain’ at Flash Fiction Armagh (blog post with media file)

On Thursday 22nd March I was invited, along with a selection of other Irish authors, to read at the inaugural Flash Fiction Armagh event held in the Mulberry Bistro in Armagh City.  The venue was beautiful, situated opposite on of the city’s two picturesque cathedrals – hey, why have one cathedral when you can have two, right! 🙂 – and there was a very lively and appreciative and receptive crowd in attendance.

The event was very ably organised by Byddi Lee, who coordinates a writer’s group in Armagh City, and herself grew up in Armagh and moved to Belfast to study at Queen’s University. She has since lived in South Africa, Canada, California and Paris before returning to live in her hometown, Armagh relatively recently. She has published flash fiction, short stories and, in 2014, her novel, March to November. She is currently working on a trilogy that starts in Armagh in the near future, where the elderly have suddenly begun to get younger with devastating consequences. Byddi also blogs about life, both at home and abroad called, “We didn’t come here for the grass. www.byddilee.com.

The line-up for the first Flash Fiction Armagh event was selected after their work was submitted for consideration and can be seen below:

Jay Faulker, ‘Rain’
Catherine Carson, ‘Spectrum’
Réaltán Ní Leannáin, ‘Dílis’
Damien Mallon, ‘Reading The Trees’
Pamela Brown, ‘Mansfield House’
Réamonn Ó Ciaráin, ‘The Boy Corps of Eamhain Mhacha’
Trish Bennett, ‘Power of a Peeler’
Karen Mooney, ‘A Fond Farewell’
Seán Ó Farraigh, ‘Neamhchiontach go dtí go gcruthaítear a mhalairt’
Christopher Moore, ‘The Dark Hedges’
Malachi Kelly, ‘Scoring in the Seventies’

It was a really, really strong mix of genres and styles including darker fiction, mythology, poetic literature, etc; while I suppose us writers shouldn’t have our favourites – maybe it’s like choosing between our children – for me (even though it was extremely hard as their wasn’t a single weak story in the whole night) I had two stand-out pieces: Karen Mooney’s’ A Fond Farewell’ was a very personal story about the passing of her father but it was told in such a way that it was about the loss of everyone’s loved ones but it never got saccharine or even maudlin, it was celebratory as well as loving.  Catherine Carson’s ‘Spectrum’, for me, though was the stand-out story of the night; it told the tale of a moment in time – probably no more than minutes, at most – in the day in the life of a mother and her growing up too fast/too soon/too hard son with autism, but it also told the tale within a tale of that same son when he was still a small child when he looked at her, and really saw her, and how quickly that moment passed. It was a tale of love and struggles, and constant tiredness and never giving up. I adored it. I adored Catherine’s writing. I cannot wait to read more of her work!

One of my sons, Mackenzie, was with me – and persuaded me to let him stay out waaaaaay after his bedtime – and when asked what his favourite part of the night was, or his favourite story was, he just looked at me, wide-eyed, and said three words: “All of it!” Fair to say he enjoyed himself …though you’d think that there’d have been at least some nepotism in there and he might have said ‘Rain’, ey?! 🙂

For me it was only one of a double handful (certainly less than 10) times I’ve done a public reading – more if you include times I’ve spoken about medical matters I suppose but I don’t count them  as, unfortunately, they may be science but their definitely not fiction 🙂 – and only the second that I’ve been filmed.  I normally don’t even like photos let alone videos but, this time, I just rolled with it (a very dear friend of mine, whose advice I constantly listen to and always ‘try’ to follow …even if I don’t always manage to ‘do’ it … called Mercedes is amazing in front of the microphone and screen and when I interviewed her on the radio I recall she said just ‘be yourself’, and is always just that, she just rolls with things, no matter how hectic – and our lives are ALWYAS hectic 🙂 ) so I’m taking her advice, again, and posting the video of me, my actual face, my actual voice, reading my actual words.

So one more random weird thing: at the reading I read my piece, ‘Rain’, which is about a fireman who is in the middle of a search and rescue operation for two boys lost in a flood; it’s not the happiest of pieces, and told in first person, from the perspective of the dejected, tired, and very cold fireman who is losing hope very fast. I was told, afterwards, that people enjoyed the story and I read well but – and I’m SO glad I didn’t know this in advance! – there was an actual fireman in the audience and he told me he loved it and I’d really captured the feelings and atmosphere well but … someone that could have been the protagonist was there, listening to me talk about him.  Yeah, no pressure!!!~

Anyway, here is my reading:

 

 

International Wheelchair Day

1st March is International Wheelchair Day.

Mackenzie, my son, unlike some other wheelchair users, doesn’t have to use his full-time; due to his muscle condition and hypermobility, he can fatigue extremely quickly and recover slowly so the chair is there to ensure that he either 1/ has the energy to do the things that he wants to do by allowing him to rest in between and not waste energy needlessly or 2/ have a safe refuge to be when he’s exhausted and unable to go on when he’s in pain or too fatigued to continue.

He loves his chair because, to him, it’s not medical equipment it’s his slice of freedom and normality that allows him to do things which, otherwise, he may not be able to do.

Other people just need to see wheelchairs, and wheelchair users, as a normal part of everyday life and give them more acceptance and accessibility so that an even more positive impact can be made.

Rare Disease Day 2018 – Meet Enzo

Enzo is the youngest star of this year’s Rare Disease Day video and has just turned 5. (Like me) He also lives with Congenital Myasthenic Syndrome, a neuromuscular disease, which affects the strength of his muscles. Congenital Myasthenic Syndromes affect the way the motor nerve controls the movement of the muscles which act. As a consequence Enzo’s eyelids remain half closed (Ptosis) and Cindy, his mother, says that she is often told that he looks tired and that he needs rest by people in the street (that’s something that I am very familiar with too – that or that I look drunk, which is odd as I don’t drink!!!). Because of how the rare disease affects his muscles, Enzo fatigues easily and so uses a wheelchair most of the time, though he loves to walk for short distances where possible.

Enzo was diagnosed with his rare disease 5 months after he was born and spent much time in hospital where he was misdiagnosed or even told that he was not ill at all. (Again something very similar to what my parents went through for many years too, despite the many symptoms and issues, because the doctors weren’t aware of the condition they didn’t believe it existed!) At one point Cindy was even told that she was ‘crazy’ but, knowing that something was not right, she persisted and, after moving hospital, managed to find Enzo’s diagnosis within 3 days. The struggle to be diagnosed is something common to rare disease patients due to the lack of knowledge of the symptoms and consequences compared to more common diseases. (It took 16 years for my first diagnosis and this only came from a ‘complication’ with anaesthetic – malignant hyperthermia where I technically died in the operating theatre – which led them to realise that YES there was an actual issue with my muscles, which led to a batter of tests during a 6 month stint in hospital, including muscle biopsies, and an eventual diagnosis of congenital myopathy before, many years late, congenital myasthenia.)

However after Enzo was diagnosed with Congenital Myasthenic Syndrome, the next challenge was finding people to help with the care aspect. Finding a physio for Enzo was difficult with his specific rare disease, again due to the lack of knowledge. Cindy had to put her job to one side as she looked to find the best form of daily care for Enzo, whilst also considering the needs of his older sister, and keeping up with the paperwork needed to ensure Enzo kept all of his rights to care. Day to day he has to take medicine at fixed times and twice a week has physio sessions to improve his muscle strength. Due to the scoliosis caused by Congenital Myasthenic Syndrome he has sessions to improve his lung strength.

Despite all this Enzo remains a boy who can’t stop smiling! One of his main interests is the world of cinema and music and so he was very excited to appear in the campaign video. He has met many celebrities including Kendji Girac, Helene Segara, Claudio Capeo and Mimie Mathy. That said he still hasn’t met his favourite celebrity of all, Spiderman, though to Cindy he is her own superhero.

(Enzo, like all kids with CMS – and I have met many of them, including one of my own – is definitely a hero!)

https://www.rarediseaseday.org/videos

#ShowYourRare

Main text comes from Rare Disease Day and text in brackets is my own.

Rare Disease Day 2018

On 28 February 2018, the eleventh edition of Rare Disease Day will see thousands of people from all over the world come together to advocate for more research on rare diseases. Over the last few decades, funds dedicated to rare disease research have increased. But it can’t stop there.

There is so much to be said in the fight to increase rare disease research that the theme for Rare Disease Day 2018 is research, continuing on from Rare Disease Day 2017!  Rare Disease Day 2018 offers participants the opportunity to be part of a global call on policy makers, researchers, companies and healthcare professionals to increasingly and more effectively involve patients in rare disease research.

Rare disease patients and families, patient organisations, politicians, carers, medical professionals, researchers and industry will come together to raise awareness of rare diseases through thousands of events all over the world.

https://www.rarediseaseday.org/

 

2018 British Martial Arts Awards Nomination

I’ve just found out that I’ve been nominated for a 2018 British Martial Arts Award!

To say that I am amazed and humbled doesn’t quite begin to explain how I’m feeling but it’s an exceptionally special honour as I approach the 30th anniversary of starting my journey in martial arts this coming April.

Big thanks to Anthony Sean Pillage, Sarah and everyone at Warrior’s Assemble for this, as well as the rest of my instructor team at Imperial Dragon Kung Fu who – literally – are world class: Richard Dawson, Lyndon Irwin, Steve Quinn, Jonny Graham and, of course, to all the students throughout the years  because without them I wouldn’t be much of an Instructor now would I? 🙂

Burning Willow Press Announces ‘CROSSROADS IN THE DARK III’ For Ehlers-Danlos Syndrome Charity

Burning Willow Press (BWP) created the Crossroads in the Dark horror anthologies as a showcase for its authors.

BWP Vice President, Edd Sowder, describes the series:

“Typically, Crossroads in the Dark anthologies are themed and this one is no different. Exploring monsters, real or imagined, typical, or on the news, was a concept dreamed up by our staff. The authors involved enjoy the process and it shows in the way they write their stories. This is a primarily horror related subject matter, so faint of heart please do not read it.”

For the 2017 anthology, the company principals approached the staff and authors and announced that they were going to produce the third book of short stories for a charitable donation to Ehlers-Danlos Syndrome (EDS) research.

A former member of the BWP creative team suffers from EDS, and the disease process has left her unable to continue working.

Burning Willow’s authors reacted almost immediately and began submitting stories for inclusion in the compilation.

“What this means is that we are involved. We want our friend to feel 100 percent again. She has been supporting us since we started our business and when was unable to work, our hearts were left with a hole in them. So, we dedicated the book to her and the proceeds to research in her name,” Mr. Sowder related.

About Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome is an often misdiagnosed disease that affects connective tissues. Symptoms may include loose joints, stretchy skin, and abnormal scar formation. These can be noticed at birth or in early childhood. Complications may include; aortic dissection, joint-dislocations, scoliosis, chronic pain, or early osteoarthritis.

For more information about EDS symptoms and diagnosis, visit https://www.ehlers-danlos.com/what-is-eds/.

About Burning Willow Press

Founded in 2014, Burning Willow Press has been a much sought-after independent publishing company to work with for many authors of fantasy, horror, and science fiction, accepting blended genres as well. BWP has placed or been nominated for multiple awards in different indie circuits for cover art, best author lists, editors and publisher since its inception. Burning Willow Press distinguishes itself from other small publishers by maximizing engagement with their authors, as is exemplified by the Crossroads in the Dark III project.

Book Blast – Temple of Ghosts by J. H. Moncrieff – Win $100 Amazon gift card!

To celebrate the release of my new supernatural suspense book, Temple of Ghoststhe third book in the GhostWriters series, I want to give you a $100 Amazon gift card.

Because of the delay in its releaseTemple of Ghosts has no reviews. So, here’s the deal: the first fifty people to read the book and review it will be entered into a draw for the gift card. The raffle will run until there are fifty reviews for the book on Amazon, so please share this post and tell your reader friends.

*Once you’ve left a review, leave a comment here:- http://www.jhmoncrieff.com/win-100-amazon-gift-card/ – letting me know your Amazon handle so I can make sure you’re entered into the draw.*

While of course I’d prefer you purchase the book to review it–writers gotta eat, you know–it’s not required. You can send me a pm at jh (at) jhmoncrieff (dot) com, telling me about the scariest thing that ever happened to you in five-hundred words or less, and I’ll send you the ebook to review for free.

One in fifty is pretty good odds! Here’s more about the book:

In the shadow of the jackal…

Medium Kate Carlsson has returned from Poveglia with Jackson, but there’s no time for domestic bliss. Something strange is happening in her sleepy Vermont town—water turns to blood, frogs fall from the sky, and an unlikely stowaway lurks in her kitchen. Even worse, Kate’s friend Eden, a noted Egyptologist, has gone missing.

Darkness surrounds Kate’s protégé, twelve-year-old Lily Walkins, and Lily’s uncle, a soldier who died in Egypt while working on a top-secret government project. Kate suspects the soldier’s untimely death holds the key to the disasters befalling Nightridge.

To solve the mystery and save Lily, Kate and Jackson journey to an ancient temple where the line between god and monster is blurred. With the help of an enigmatic Egyptian psychic, they must face their greatest foe yet.

***

To write Temple of Ghosts, I traveled to Egypt in January, and I drew on a lot of my experiences there when writing the third Kate and Jackson adventure. While this book picks up where The Girl Who Talks to Ghosts left off, there is no need to read the other books in the series first.

Temple of Ghosts is available through Amazon, Barnes & Noble, Kobo, iBooks, Overdrive, Playster, Tolino, 24symbols, and Chapters.

***

Raised in the far north, amid Jack London’s world of dog sleds and endless winters, J.H. Moncrieff has been obsessed with psychological suspense, mysteries, and true crime for as long as she can remember. She’s endlessly fascinated by what makes people tick and has visited many of the world’s most haunted places.