Planes (no trains) & automobiles…..*

*also a boat(s) but that doesn’t scan as well!

** & yes I know it’s a film title..

Bonjour mes amours!

It is the end of the 6 weeks school summer holidays (in England) and we have been lucky enough to spend 2 gloriously hot weeks in Southern France, followed by a mammoth drive to Paris, a dabble in EuroDisney and now as I sit and type, we wait expectantly to board the boat back to Blighty…. for an onwards drive back ‘oop north.’

It has been epic; in all senses of the word. I don’t know if the ‘cool’ kids still use the word epic to describe an amazing time or not but it definitely falls under that.

Equally however, as per the Oxford English Dictionary classifications, our hols could be defined as a ‘heroic/grand saga’ requiring much ‘bravery’ and a ‘long and arduous journey;’ yeah definitely all of that…

It would be fair to say that when I first mentioned our 3000 mile (return) travel plans to various medical personnel involved with our enfants horribles , there was some *slightly* nervous tittering. And it wasn’t just me doing it. 😆

Apparently taking all 4 of your offspring aged between 10-19 on such a journey borders on insanity/madness. Especially if they also happen to have some issues….

And I won’t lie, it hasn’t all been champagne (not much of that actually!) and roses.

When Mr DNTW’s informed me he had booked for us to go away way back in March, Minx and I were cooped up in GOSH, awaiting the ‘big plan.’

It seems an age ago now but at the time, we were all in need of some cheering up as it had rapidly become apparent during that stay that we were in for the long haul; that the carefully laid plans thus far had been stomped on, ripped up and had gone awry. The more cynical of us *may* have argued that the plans had never been properly drawn up in the first place but that’s a whole other story…..

So when Mr D made his triumphant announcement about the booked holiday I was rather more concerned by where he had found the magic money tree to pay for said holiday (still looking 😉) or whether he had sold my collection of shoes & handbags on e-bay to pay for it!

Through the lengthy weeks of hospital time, hospital stays and subsequent limbo, having the holiday to focus on became a shining beacon of hope and something to really look forward to.

Despite Minx and G-Man’s combined efforts to throw (surgical) spanners in the works, their procedures came and went. Healings were (are) complicated and I had to stock up on the mobile equivalent of a field hospital which brought its own issues in terms of getting everything delivered in time and space in the car

No room at the inn…the grey trunks are all medical supplies…& there’s a roof box full as well!

I didn’t even really flinch (too) much at the astronomical quotes we got for travel insurance – ranging from cheapest at £1300 to £2600!!! Actually I did; I really did…. until I cried when the most reasonable company called me back after I had phoned to give them more info (like many I suspect our family don’t fit neatly into black and white questions: is …….a wheelchair user? Well yes but not all the of the time? Apparently that’s like being ‘slightly pregnant’ where insurance companies are concerned – you either are or aren’t, no middle ground) and declared that based on the additional details I had provided, Minx was in fact uninsurable!! 🙈 I hadn’t even mentioned the words “undiagnosed” – a veritable death knell where insurance is concerned!

Eventually after much research and consulting of the oracle – ie suggestions from wise friends, we went with our bank (who already provide us with an annual standard cover automatically) and just disclosed the ins and outs of our weirds and wonderful for a slightly less eye-watering cost that covers us world wide… bargain really!

The logistics of accommodating the varying needs of a large, dysfunctional family and ensuring everyone’s needs, sleeping arrangements, well-being, not to mention enjoyment, fun, food and safety could all be achieved (& without the budget of Croesus in the process) were significant but you know #nicerproblems# to have and all that.

Given our ASD’s son’s needs for a safe place to escape when overloaded and also just generally being a teenager, (🤢) we wanted to ensure he had his own room and a space for down time. So the right, affordable accommodation was paramount.

Eldest son H is now working and we weren’t sure if he would still want to come with the ‘rents on holibobs.

Turns out however that in-spite of us lowly oldies cramping his style, an expenses paid trip to sunnier climes, very much met with his approval! Funny that….

Given H works in the travel industry on contract, getting time off/shifts swapped to accommodate a break was like something out of the Krypton Factor and so he couldn’t join us for the entire trip.

I’ve already done my proud mama-bear boasting moment on my personal FB but just in case you missed it and also, well ‘just because’ here’s a little mini pic😊

He thought he could *probably* come in the car with us. He couldn’t…..whether he wanted to or not… I flatly renounced any such suggestions. We genuinely didn’t have the seat space or rather luggage space. The car being a 7 seater was neither here nor there.

In actual fact, I can’t help feeling that he rather got the best end of the deal: no long & ardous 2 full days of driving (& boat) journey to contend with, no smelly cooped up car with fractious siblings (& even more fractured parents); merely a solo 2 hour flight in blissful air con before arriving, unflustered in Nice. Nice in Nice and all that…. 🌝🌞

I’ll spare you the ennui of a day by day, blow by blow account of the DNTW’s vacation extraordinaire (almost as enthralling as looking at other people’s holidays snaps right?! 😉) but suffice to say it wouldn’t have been an “us” holiday without hospital trips… yes that’s right. Trips plural.

Surprisingly, the child I thought most likely to test-drive the French medical system and give my school-girl French a run for its money, behaved herself.

However, I was more than slightly out of my comfort zone when having to liaise with the French emergency and medical services for 2 of the rest of the gang.

It transpires my ’comprehensive’ French knowledge of menus, food stuffs in general, encore du vin (more wine!) and where is the toilet/library phrases memorised from school weren’t terribly helpful or useful. In fact I think the alleged (possibly apocryphal) Hungarian phrase “my postillion has been struck by lightning” (in French) would have been more helpful than what I do know of the French medical terminology.

Nonetheless, I attempted my best “Franglais” and despite murdering the language of lurve, (I never really thought I would fervently wish I had studied French tenses in greater detail but turns out I was wrong) some Gallic shrugging, frantic gesticulating and resorting to google translate as well as stick drawings, I made myself (sort of) understood; enough anyway that the right areas of my children’s’ anatomies/difficulties were attended too on both occasions. I think I probably gave the medics a bit of a giggle at my expense too…. intended to ask if I could sit but actually suggested I was a plate… I blame too much sun, shock & being very tired for that one and anyway, ‘assayez’ and ‘assiete’ are quite similar 🤔

Fortunately it transpires that the words for ‘jejunostomy’ and ‘autism’ in French are essentially much the same, although they sound decidedly more exotic and sexy en francaise. Pathological demand avoidance and sensory processing disorder don’t however seem to translate…. 🤷🏻‍♀️

In any event the care we received from our European brethren was par excellence, albeit if I hadn’t already appreciated our marvellous FREE at the point of use #NHS# as much as I do, I definitely would have done by the time we proceeded to the billing department.

Much like the UK, the French medical system do have a duty of care to provide emergency care irrespective of your ability to pay but they are VERY quick to demand your passport & health document details and even if you possess an EHIC ( https://www.nhs.uk/using-the-nhs/healthcare-abroad/apply-for-a-free-ehic-european-health-insurance-card/) you may find you are presented with a bill immediately.

It does however have to be said that for the care we received – ambulance trip by 3 emergency personnel, urgent care access, paediatric emergency Doctor consult, 4 xrays, resulting antibiotics, wound care and dressings – the resulting €92 bill was very reasonable… and perhaps something that given the dire status of our health system and the amount of “health tourism” that seems prevalent in our country, something that needs further consideration in good ole Blighty.

We didn’t get presented with a bill for our “Second day out with the emergency services” away day when we checked out; maybe it was my presence of mind to thrust the EHIC document straight at them BEFORE actual treatment took place or maybe due to the comprehensive nature of tests that were required, they took pity and felt presenting me with an eye-watering invoice might also necessitate an ECG of my own but I am told we will receive it in the post….. I won’t hold my breath for obvious reasons!!

One bizarre observation I will venture: when sitting in French Doctor/hospital waiting rooms, it transpires it is necessary to greet all those who walk in and out with a chirpy “Bonjour” or smiley “Au revoir!” How mad is that?! They don’t do the politely British thing of ignoring each other at all costs, eyes down-cast, studying the floor and hoping no one in your immediate vicinity is Ebola carrying when they cough & splutter into a hankies. Non! There is a lot of eye contact and even some bisous (kissing) when they (presumably) know each other. Another good reason to have nothing to do with trains in this post – if they greet each other like this at the Doctors, I can’t even imagine what they get up to on locomotives – definitely not the British way!

Thankfully, the vast majority of our holiday was a break away from all things medical (aside from the standard doling out of pills, lotions, potions & generalised care the kids necessitate day to day) and whilst I wouldn’t necessarily go as far as to say it was relaxing, it has been great to enjoy time together, sun, sea, days out, pool days, ice-creams, the odd Kir-Royale 🍸 (or 3) here and there and a last hurrah with the younger 2 at DisneyLand Paris.


Pre Thunder Mountain…. there weren’t quite such good spirits after 🤣

So now we are returning home, no doubt back to an enormous pile of bills (maybe the French hospital one will have beaten us home?!) laundry and lord knows what state the house will be in as the older 2 have been home without us over the last few days…. But we have suntans and smiles and precious memories and that makes it all worthwhile

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The Trigger…..(Pull it)

Recently for reasons that as yet I cannot divulge (I promise there is a blog post coming on this as soon as I am able; apologies for the cloak and dagger tactics. I’m not one of those “u ok hun?” PM/In box me” type people honestly!!) I have recently had to write an explanation of what led me to my break down almost 2 years ago. The account needed to be factual and pragmatic; the irony of trying to keep my feelings out of it when dealing with something so fundamentally, emotionally driven as a suicide attempt was not lost on me.

Although I will (if asked) talk to close friends and family about what led to my attempts and breakdown in mental health honestly and forthrightly, it doesn’t mean there isn’t shame; that there isn’t guilt and that there aren’t things that I (still) hide. There are somethings that are so deeply personal (buried?) that I don’t think I’ve even allowed myself to explore them.

In writing down the what’s, why’s and wherefore’s, its dug up a lot of suppressed memories, pain and feelings of helplessness, at a situation that was not of my own making. That’s not to say that I want to palm what happened off on someone/something else. I accept responsibility for want of a better word for the actions I undertook. However I reached that point where checking out seemed the only option to change what was going on around me.

It occurred to me as I typed the details up that it was triggering a lot of emotions even though I wanted to be concise and almost 3rd person in my approach. And I as thought about that word “trigger,” I realised that summed up my entire experience of a mental health breakdown. Seems obvious I suppose. I don’t know – I can only speak from my personal situation.

Suicidality  springs from a myriad of wide and varied causes;  I am no expert. For some it may be a single one-off event that causes the person to experience a sudden mental health breakdown (personal/financial/status loss spring to mind) for others something that happened in their past (abuse, specific traumatic one off/repetitive  event) which cannot be overcome.

For me, it came about insidiously, through a relentlessly relentless piling on of pressures and this too is of course acknowledged as a common cause. I guess for me the idiom “at the end of my rope” has more connotations than just being at the end of one’s patience. Apparently the original source of this expression relates to tethering an animal to prevent it moving and wondering off beyond a certain distance.  Personally, (in a somewhat grimly, ironic humour) I thought it meant at the end of the hanging noose knot….

My first suicidal ideation was triggered by the repeated use of the word COPE. An innocuous little word that is used to describe so many situations. As a parent carer of children with special needs, it’s not uncommon for others to utter “I don’t know how you cope!” This is something that I know many of my fellow parent carers  or carers in general will be nodding along with.

Carers are often seen as saintly like figure. A cross between Florence Nightingale and Mary Poppins perhaps? Truth is, very few of us chose this life. The role chose us by circumstance or default.  I know there are some utterly inspiring carers out there who did actually choose to foster or adopt children with special needs (and thank goodness for them) to prevent little lives being institutionalised without families of their own.

There are also those courageous individuals who when embarking on their journey of parenthood were given horrifying, frightening, diagnosis for their unborn child and yet chose to bring life into the world knowing they were doing so against the odds; that they  would do their utmost to love and cherish their child, no matter what. Other parents have had to face a child being diagnosed with cancer, degenerative or congenital conditions out of the blue or as a result of an accident or injury.

Of course later in life more and more of us are facing the hideous reality of dementia in family members. Those with grandparents and harder still, their own parents or siblings who they see deteriorating in their day-to-day abilities; losing their independence and all too often a decline in mood, personality and recognition of their own nearest and dearest. Very cruel.

Whichever way it comes to be, caring for someone isn’t something you get a medal for. There isn’t a huge amount of reward  – certainly not monetarily. If you can show that you provide care for someone receiving  specific incapacity benefits for over 35 hours per week and you earn under £123p/w (as of April 2019) from other sources of income, you can enjoy the princely sum of £66.15p/w (also April 2019) for the ‘privilege’ of being a carer. Even based on 35 hours per week(and the majority of carers I know ‘work’ substantially longer hours than that; 24/7 for many)  that equates to just £1.89 per hour. Wow. Best not get me started on that. A ranty blog post for another day no doubt.

Anyway I digress. The point I’m taking a long time to get to is many carers ‘cope’ because there really isn’t any other alternative. And those of you who say you couldn’t? Well you would. If you had to. At least for a period of time.

There are (too) many days I feel like sitting in a corner and rocking. Many days I wonder how I’m going to make it through the endless medications, physiotherapy, appointments, hospital visits and dealing with the practicalities and physicalities of caring for children with extra needs. Don’t get me started on the relentless laundry pile that never seems to go down, the food shopping and meal preparation that are just part and parcel of every day life in a busy family and I know I’m far from alone.

But the point is I do – cope – I mean, generally speaking. It isn’t a life I chose but equally my children didn’t ask to come into the world with neurological,  medical and/or physical difficulties either. So I get up, I keep going, usually with a grin (maybe a grimace) and somehow it all vaguely fits together, we get to the end of each day with perhaps only a modicum of sanity and no clean school shirts for the next day (Febreeze anyone?!) because it’s the only way we carers know how too.

There isn’t any one else out there to pick up the slack. Unless you are in the fortunate (and probably) unlikely position to be independently wealthy, the majority of carers get on with their role because they have to keep on keeping on. No one else is going to be there to pick up the pieces (or socks) if they don’t. No white knight (or even vaguely grimy one) will rush in where others fear to tred.

So back to that pesky trigger of mine. What’s more frightening than ever is it’s not just carers that struggle to COPE. Unless you have been hiding under a rock, you can’t have failed to notice the inadequacies in the health and social care system caused by austerity, lack of (meaningful) investment, candidates and poor morale. The system itself has reached breaking point.

The working conditions are sending droves of medical professionals overseas where they will have a better work-life balance and better remuneration. Fewer than ever medical students want to take on the role of General Practice and more GP’s than ever are planning to retire early. Figures released in July 2018 showed 1 in every 6 GP positions were unfilled leaving almost every surgery across England at least one Doctor short.

Mental health services have also suffered hugely and in real terms, whilst there were expansive (and expensive!) promises given that funding would increase broadly in this area (£2 billion was pledged by Phillip Hammond in October 2018) in reality the fall in in-patient beds has led to those in crisis being sent hundreds of miles from home, away from their nearest and dearest which can, at least in my experience, only create more hardship. The inability to access timely, regional in-patient care is not just inadequate but dangerous. The focus on out-patient/community based care is of course welcome but it is not a replacement for those battling psychosis, severe depression, eating disorders and such like, especially when either the beds aren’t in familiar environments or worse still, available at all.

Locally Harrogate Hospital plan to close the adult mental health in-patient unit at some as yet unspecified date in the future (rumoured to be later this year) and I for one will mourn this loss. Whilst I hope never to need in-patient services again, I made and have retained a very special  friendship with a fellow MH warrior. We often share some  deeply inappropriate, darkly humourous moments that unless you have experienced a mental health crisis, just wouldn’t be appreciated by  nearest and dearest.

I am forever changed by my own break down experience both in good and bad ways. I have learned my tolerances are much lower than before so whilst I’m in an *ok* place much of the time, it doesn’t take much to alter that kilter and send me spiralling to darker places. But I have also learned I am stronger than I thought it was ever possible to be, that I can ‘cope’ with most of what life throws at me and that will do… for now

Same but different….rare as Unicorn 💩???

Rare disease G&A Photo 2018This year 28th February 2018 is the worldwide celebration of Rare Disease Day. 

The very first ever Rare Disease Day was held in 2008 –  a leap year so the perfect occasion for the initial 18 countries that signed up to celebrate.

Every year since, countries across the world have united to raise awareness of all things rare in terms of disease.

Last year 94 countries highlighted their commitment and support to raising rare awareness which is a pretty fantastic achievement.  In fact that’s an increase in ‘productivity’  of 422.2222% for want of a better way of describing it!!! (I had to ask my eldest son taking A-level maths to work that out so if the stats are not right, don’t blame me!!)  So it isn’t surprising that highlighting all things rare is close to the hearts and minds of those who live with a rare disease or have family members affected by a rare disease.

What does ‘rare’ mean to you? I googled the word rare in the Oxford English Dictionary and the top definition that came up as an adjective was this-  “RARE:  – of an event, situation, or condition not occurring very often. ‘a rare genetic disorder’,”

After that it went on to talk about rare steaks, uncommon birds and such like. Interesting I thought however that the very first sentence used to define ‘rare’ was in the context of genetic disorders!

Actually I think the use of the word ‘rare’ in the context of rare diseases is a bit of a misnomer. Why? Because at any given point 1 in 17 of us will be affected by a rare disease! Surprised? Think about this number in terms of the day to day and see how it relates to your experiences.

If you used public transport today (probably a bad example since much of the country seems to be under snow!) was it crowded? More than 17 of you on board? Probably. Bought a coffee in one of the many high street chains? Hopefully not 17 of you in the queue at any one time but probably more on the premises tucking into a hot drink or waiting anxiously for their turn.

17 is lucky in some countries, unlucky in Italy. 17 is the number of muscles it takes to form a smile, 17 syllables in a haiku poem. 17 is the least random number in a study conducted by MIT asking people to choose a number between 1 and 20. So again, not that rare.

A rare disease/condition in Europe is classified as affecting 1 in 2000; in the US fewer than 1 in 200,000. 80% of rare diseases are genetic in origin whilst others are as a result of infections (bacterial or viral) allergies, environmental factors, degenerative or  known as proliferative eg cancers.

Of those diagnosed with a rare disorder a staggering 75% will be children.  In fact, many of these children are a whole new breed of rare. So rare that their medical/physical and or cognitive difficulties don’t actually have a name!

Presently we know that there are approximately 6000 children born each year in the UK  alone who have an UNDIAGNOSED condition. Of those, only 50% undergoing genetic testing on the NHS will ever get a diagnosis. And this is something very close to my heart because 2 of my children are undiagnosed.

Whilst we can indeed be enormously thankful that medical science is evolving and improving so rapidly –  approximately 5 new rare diseases per week are described in medical literature  – organisations like https://www.raredisease.org.uk provide essential support and a voice for those affected by a rare condition.

For those of us still in unknown murky waters, studies such as  DDD – Deciphering Developmental Disorder  https://www.ddduk.org  or the 100,000 genomes project /https://www.genomicsengland.co.uk/the-100000-genomes-project/  offer families like mine the best chance of getting an answer as to why our children experience various difficulties and potentially the best way to manage their conditions, obtain treatment or assistance and potentially connect with families in a similar situation.

Families such as mine with children who are undiagnosed and/or ultra rare can often feel alone. SWAN UK http://www.undiagnosed.org.uk provide the only dedicated support network for families of undiagnosed children and young adults affected by a genetic condition. Hand on heart I can say that the support I have received by being a member (and now a volunteer parent rep) has been a veritable life-line.

Although my youngest 2 children have a myriad of medical terms/symptoms and diagnoses, to date we have no unifying “umbrella” that explains why they are affected. Their medical notes are vast. Between them they have confounded some of the brightest and most well respected specialists across the country. If I had a £ for every time I had heard the words ‘rare’ ‘atypical’  ‘uncommon’, ‘complex (the list could go on for a while, you get my gist) I would be a very rich woman.

If a part of the human body or a specific organ is supposed to work a particular way, you can pretty much guarantee with my kids that it won’t. If unusual presentations or the extraordinary were olympic sports, my kids would be gold medalists. Several times over.

So over the years, being able to talk to those who understand what we are going through, who have felt left out, different or isolated has been incredibly important and helpful.

If one in 17 of us will be affected by a rare disease in some way, IT COULD BE YOU

Please click on some of the links above to find out more and if you can, please consider fundraising or donating: https://www.raredisease.org.uk/donate/      https://www.undiagnosed.org.uk/donate/

 

 

 

 

Dear Mr President…&… you too Mr Hunt

I don’t suppose either of you will ever read this because if I may borrow a phrase from the pop group Journey: “I’m just a small town girl”… and thereby vastly unimportant in the stratosphere’s you preside in.

Strictly speaking President T, I guess you would classify my proclamation as ‘fake news’ since being the wrong side of 40, I’m playing a little fast and loose with the use of the word ‘girl’ but I digress.

So what’s the point of this post if you won’t ever get to read it or even be aware of it on the most peripheral of levels? Honestly, I don’t know but what I do know is if I sit back, say nothing and just let the world continue turning without speaking my mind, then I’m just as complicit and negligent as so many of those who DO hold positions of authority and have the real power to effect change – notably the policy makers and advisers to you important people. Call me naive but surely even they have to report back on the dissension of the people, even though it’s not necessarily what you want to hear?

I’m equally sure the voice of the collective masses can’t have escaped your notice when we annoyingly clamour so loudly. In fact I know you are at least partially aware given some of your recent tweets but more on that later.

What did you do on Saturday night Messrs Trump and Hunt? I don’t see either of you as being of the Netflix and chill persuasion and I assume there are only so many important dinners, galas, schmoozing and events that you have to attend. Surely even you get the occasional Saturday nights to hang out?

If the (un)popular press are to be believed, at least one of you is partial to a Maccie D’s so perhaps you put your stretchy waste band joggers/onesie one and indulged in fries and made friends with Ben & Jerry’s… In any event, I bet you didn’t do this: That’s what my Saturday night looked like – preparing medications and feed for a 24 hour period for 2 medically complex children.

Please know I don’t post these pictures for the sympathy vote; it’s not a pity party for one but as I see it, a picture (or 3) paints a thousand words and sometimes replaces the needs for words entirely. Sorry though, you don’t get that lucky just yet. I’m not done with the rhetoric.

You see as I hummed my away around the kitchen opening and sorting various medical supplies, Dua Lipa on loud, (music concentrates the mind!) I had a mini, well actually fairly major epiphany.

I have said it before and I’ll say it again: I’m so incredibly grateful to our amazing NHS that all these items my children need, depend upon to LIVE are “free.”

I am lucky, for want of a better word, that my children can presently receive urgent care and treatment as well as day-to-day management of their various issues as and when they need it; that I don’t have to choose between putting food on the table or trying to scrape together the funds to pay for specialist equipment, feeds, even consultations with healthcare professionals. But how long will that be the case?

Never was I more aware of how precious such services are as when I had a conversation with one of Minx’s community nurses last week. One of her pesky stoma’s that was surgically resected in December last year (yet more free care) has unfortunately prolapsed again.

This is problematic for numerous reasons: pain, bleeding and the fact that the prolapse occurring even as a first incidence had the medical bods scratching their heads, let alone for a second time. In fact in all the years our community nurse has been in practice and with her vast case load, she’s never had this happen to even one of her patients 🙄

I suppose it’s just another part of Minx’s foibles uniqueness but it’s really time-consuming and causing her distress to have to change dressings (& clothes at times) and clean up several times a day.

Although we have reassured her this is in no way her fault and clothes can be washed, it’s not ideal. As she gets older and more body aware, she is cognisant of the fact this is not something her contemporaries face and her worry and distress increases. We take great pains to build her self-esteem and celebrate how well she is doing but it’s a fine balancing act not to minimise her day-to-day difficulties and yet promote her ‘ordinariness’ – something key to her in wanting to be the same as everyone else. So we need to manage this the best we can.

Our trusty nurse assessed how we should proceed for now before our next trip to Great Ormond Street and set about contacting our GP to get prescriptions for various lotions and potions, dressings and even support garments. Again free.

I assured her I had a stash of dressings at home from past dabblings in stoma management and reeled off a list of supplies that would make a Casualty (TV show) prop-dresser weep.

It’s always advisable to have supplies in hand. Despite our best endeavours to keep both her stomas clean and infection free, by virtue of the fact that it’s a non sterile opening into (& out) of the body and that the body sees it as a foreign object, it’s likely that infections or skin/tissue difficulties will tear their ugly heads at some point in time, especially post-operatively.

Only for one tiny moment did I hear the tiny but sharp intake of breath she gave. And if I hadn’t questioned the community nurse on it further, I’m pretty sure she wouldn’t have said a word.

Her almost imperceptible gasp related to the dressings. These babies on the left to be precise:

You see we have a stash of the foam pad dressings on the left which are used predominantly when a wound/stoma site is infected or particularly (watch out for technical word) “manky.”

These rather innocuous looking, individually sealed dressings are impregnated with an anti-microbial property which helps speed healing, prevent colonisation of bacteria and generally fend off/clear all sorts of overall nasties.

Because I pushed, the community nurse explained they come with a price tag of £2.50 … per dressing… and we have 2 boxes of them, approx 20 per box if I recall correctly. And guess what? I got those “free” from our pharmacy too. Prescribed “free” via our GP.

The dressings on the right of the picture do a similar job at the cost of 9p per dressing so it was more than understandable and acceptable to me when the nurse asked if I would mind utilising those in the first instance.

She stressed that if acceptable progress wasn’t made quickly we should have no qualms switching to the other kind and if I hadn’t questioned her, I’m pretty darn sure she wouldn’t have said anything else on the subject. At no point was I made to feel any kind of guilt or justification for utilising such extensive and expensive resources.

I’m sure those far more worldly than I will point out how in reality none of the aforementioned items or services are “free” and yes, yes I’m well aware that as tax payers, we pay in towards a system that (partially) funds all this but for all intents and purposes, at the point of service delivery, my children can utilise what they need with out exception, without paying and are thriving as a result. Again how much longer will we have this assurity?

Quite frankly Big D, I don’t profess to fully understand all the ins and outs of your heath-care system in the US. But I know enough to be afraid and I dread to think what would happen to my children and for that matter, to my entire family if we lived in the US. I’m pretty sure that at least some of the family would be uninsurable.

What I do know from my friends across the pond are their concerns over yout 2 tier system that favours the wealthy and knee caps the poor; the eye watering medical costs, deductibles, exclusions and/or restrictions on cover that penalises an aging population or those who are medically and physically complex. The demand to know even before treatment can commence as to who provides your medical insurance and what level of cover you have scares the living daylights out of me!

The Affordable Care Act ‘- Obamacare’ – certainly rung the changes and whilst far from perfect, seems to have provided a more level playing field for all walks of life. That you seem hell-bent on repealing it come hell or high water is almost certainly a retrograde step that disincentives healthy individuals from paying into the system, thereby ensuring rising costs for those most in need of protection.

The furore and uproar from us Brits in response to your recent declarations regarding our much-loved NHS may have come as something of a surprise to you. You caused ructions when you dared to criticise our beloved universal health care system and you crossed that uniquely British line that allows us to be both hyper critical and yet extremely proud of British institutions all at the same time.

I think you neglected to bear in mind the fundamental point of the NHS when you tweeted about our front line medical personnel and equally incensed members of the public who recently marched in protest with the “Fix it Now” campaign –  the sheer and utter outrage at the lack of funding for services.

The NHS was created out of the ideal that good healthcare should be available to all, regardless of wealth. When launched by Aneurin Bevan on July 5 1948 its three core principles were:

• that it meet the needs of everyone

• that it be free at the point of delivery

• that it be based on clinical need, not ability to pay

Of course it is only right that those core guiding principle are still held true and dear.

That at present our health system is in crisis is not in dispute. The year on year lack of real term funding, the austerity measures, closures, cuts and the insidious but increasingly louder suggestions of privatisation lurking in the wings are of grave concern to anyone with a modicum of sense and compassion.

Whilst you Mr Hunt publicly denounced The Donald’s tweets and are “proud of the country that invented universal health coverage” regardless of bank balance, I think it’s fair to say those on the front lines and those of us trying to read behind them are all sceptical that you intend to maintain such partisan beliefs when it comes to delivering what the NHS really needs.

I guess it’s even harder to believe you will abide by its guiding principles given that you apparently co-authored a policy book back in 2005 called Direct Democracy: An Agenda For A New Model Party.

It is only fair to point out that I suppose this was part of a collection of writings by a group of Tory MP’s and the book was presented as a whole; chapters are not marked with individual authors; nonetheless it stated:

We should fund patients, either through the tax system or by way of universal insurance, to purchase health care from the provider of their choice”

Whilst this ‘gem’ was amongst many varied ideas, the policy pamphlet called for the NHS to be replaced by an insurance market style system and even went so far as to outline how this could be achieved, stating that the private sector should be brought in:

Our ambition should be to break down the barriers between private and public provision, in effect denationalising the provision of health care in Britain.”

So you will forgive myself and my contemporaries if we are more than a tad sceptical of your motivations and your purported promises to main the core principles that the NHS was built on.

It was widely reported in early January that Chris Hopson  (chief executive of NHS Providers,  the go between between health trusts and the Department of Health) wrote to you calling for extra investment on a long-term basis to address the “fragility of the wider NHS”.

Mr Hopson’s  three-page letter requested a commitment to increase the NHS budget to £153bn by 2022/23 – the sum that the Office for Budget Responsibility said is needed, given the projected increased demand for services.

His letter went on to state “The NHS is no longer able to deliver the constitutional standards to which it is committed. We need to be realistic about what we can provide on the funding available.”

You agreed that funding has to be increased….but how this will be achieved still remains a closely guarded secret. Whilst researching facts for this blog piece, I found scores of references, much hyperbole and conjecture but no real concrete plans. Everything seems to be up in the air and awaiting clarification. Smoke and mirrors. Maybe even our own British take on “fake news?”

Certainly a lot of your past ‘promises’ on how services have improved, how more positions have been created with a larger workforce in place don’t stand up to scrutiny when you dig a little deeper.

Perhaps unsurprisingly but extremely scary, when typing your name into google Mr Hunt, plus the words NHS, the most popular ‘hit’ that came up was privatisation….

Considering your much waited plans are going to be the biggest and most encompassing strategy for the NHS since the early 2000’s, I won’t be alone waiting with baited breath…and fear….