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

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/

 

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.

On names and their orders.

disabilityLucy Webster (@Lucy_Webster_) is a politics and international relations graduate from Warwick University. She was named Student Columnist of the Year by the Guardian in 2014 and is now a freelance journalist, writing on social and political issues including disability and foreign affairs; recently she wrote a really interesting article for The Guardian (UK newspaper) on her thoughts about being a trailblazer in life ‘simply’ because she is a disabled woman and how, sometimes, she would like to be seen first not as her wheelchair but as just the person.

This is something that I can very much relate to.

Being disabled, by the very definition, obviously does mean being different in some way or manner but that in itself doesn’t HAVE to be the defining thing about the disabled person …or, to swap that last part around (as I prefer to put it) about the person who is disabled. See that difference may be slight, or simple, grammatically speaking, or just for you, the reader, but for me (because I can only speak – or write – for myself here) as someone who actually is disabled it is actually massive.

You see (or maybe you don’t, but that’s ok because that it what I am trying to help you with here) is that sometimes it can be hard putting a positive face on when you are ill, or hurting, or struggling (or all three) or facing the obstacles that living with a disability can hurl your way. The very last thing that you want – on top of everything else that you deal with on an ongoing, daily basis – is for the world to look at you and see you as your disability first and foremost or, even worse, only. You know, last time I looked in the mirror at least, I don’t have a neon sign above my head with an arrow pointing down at me with the words CONGENITAL MYASTHENIA in bold text, or SPINA BIFIDA decals on my jackets, I don’t even have a blue wheelchair tattooed on me so that I get to park anywhere I choose if I forget my blue badge (though that ‘could’ be handy I suppose 😉 ). In fact in polite company most people ask for my name before asking me for my medical background …even the many doctors, nurses, physiotherapists, and occasional witch-doctors (you never know they might just work 😉 ) still get my name before getting down with the faulty genetics you know.

It’s something that I still struggle with myself; I realise the importance of equality and especially diversity in everyday life but especially my own little corner of geekdom which is genre fiction, comics, and gaming where women, people of colour, non-straight, and disabled people are underrepresented so when I am asked if I would be interested in being considered for an anthology, or another piece of work, you would think that I would be really up for it wouldn’t you. You’d think …

…but there’s a part of me that is still really coming to terms with the fact if I am being asked to these things because I am a disabled writer who is pretty good, or a pretty good writer who also just happens to be disabled. I have to admit that worries me, perhaps more than it should.

My constant companion: #pain

FB_IMG_1460231050954As some of you know I’ve had what my neurologist thinks is a hemipleguc migraine since August last year; that means pain, every day, for nearly nine months. First two or three months it was bad enough (as in full on nuclear level migraine mode) to keep me mostly bed ridden then calmed down to somewhere between nasty and ‘just’ annoying headache level, all the time (unless I was asleep). Last five days it’s kicked up a gear or two again and been pretty severe, verging on migraine level pain again. Couple of times I’ve even had to resort to the ‘rescue meds’ the neurologist gave me for emergencies (a cocktail of drugs) which helped a little but didn’t fix things 100% …last night I slept, Luke a coma, for about 19 hours, after taking the rescue meds again and thankfully now the pain is back down to just a severe headache which means I can sort of function again. The weird thing is that I realised that my life has become one of compromise, or of acceptance of pain as a constant companion now, just as long as that companion is courteous in how intrusive it is in my life.

Surgery from a worried parent’s perspective.

Next week Mackenzie, my 8 year old child, has to go into The Royal Belfast Hospital for Sick Children for some exploratory surgery. Thanks to my weird neuromuscular genetic condition it looks like he may have inherited some issues with his muscles which have caused some problems with his own strength and stamina as well as other ‘things’ so, thanks to some pretty great doctors (neurologist, gastro consultant, geneticist, physiotherapist, and pediatrician) and us parents working together, and being proactive about things, he’s scheduled to have a colonoscopy, some scoping and a biopsy to see if things be diagnosed early rather than late.

Now one of the issues I have is a pretty extreme allergy/reaction to anesthetic so surgery is always a problem for me which means that it could be a problem for him too. The surgical team are being really great and while the procedure is normally a day one in Mackenzie’s case they are planning for at least two days, possibly three, depending on how things go (I never come out of anesthetic quickly or easily, for example, and have to go to either ICU or HDU for some help and support afterwards to be brought round so they are planning on this as a precaution with Mackenzie too). So the plan is that Mackenzie goes in the day before the procedure so that a lot of pre-op stuff can be done and the anesthetist can speak to us and make sure that plans are in place and be prepared; next day the surgery will happen and then Mackenzie will go to recovery and probably be transferred to either the regular children’s ward for observation or ICU/HDU for a little extra support for 24 hours.

…normally it is me in hospital, having things done, and it isn’t so worrying; in fact it happens so often I’m pretty blasé about it now. When it is one of the little ones, however, it is so MUCH more terrifying.

Rare Disease Day 2016 – My Story

logo-rare-disease-day

Myasthenia is a medical term for muscle weakness.
Myasthenia Gravis is an autoimmune condition while Congenital Myasthenia is a genetic one. Both of them cause issues with muscle strength, fatigue, breathing, etc.
 
I’m ‘lucky’ enough to have the latter one, as well as congenital myopathy and spina bifida occulta; the genetic gift without the superpowers.
 
It looks pretty likely that Mackenzie, my 8 year old, has it too; Nathaniel, my 6 year old, is probably a carrier; both of them (and me) have to wear wrists bands identifying them as having ‘Malignant Hyperthermia’ which is a disease that causes a fast rise in body temperature and severe muscle contractions when someone with the disease gets general anesthesia. It can be fatal; it killed me when I first had surgery but I was lucky enough to have some pretty brilliant doctors who brought me back.
 
Myasthenia issues are extremely variable. Some people are extremely affected all the time while others, like me, are mildly affected most of the time. Symptoms can be exacerbated with exercise, tiredness, stress, illness, etc. Some days I can be exhausted, and can be in bed for about 18 hours, feeling like a collection of limp noodles rather than a person and others I’ll be fine with rest and pacing.
 
Myasthenia is a frustrating disease because it is so variable and so rare that a lot of doctors and medical practitioners know little (or nothing at all) about it.
 
Reason for posting this: Google Myasthenia, or Rag Doll illness. Check out the amazing MyAware charity – default myawarehttp://www.myaware.org/ – . Find out more about it and, if you like, help raise awareness or even donate some funds. As some little shop says ‘every little helps’.
 
Rare Disease Day 2016 is 29 February which just so happens to be my birthday (yeah, I am doubly rare – go me 😉 ) use the hashtag on her on on twitter to help spread awareness of not just Myashtenia but of rare diseases and Rare Disease Day in General ‪#‎rduk‬
 
http://www.rarediseaseday.org/