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….

 

 

 

 

 

 

 

 

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How do you sleep at night… part 2 😡😡

I’m a bit less ranty today but no less passionate so let’s get this done and written before I lose my impetus… never mind the will to live. 

I like to think I’m currently  channeling my inner Taylor Swift and her pals in the Bad Blood music video: 

(*above image may be subject to copy-right) 

But in reality I should be so lucky. I’ve spent far too much of the day with my youngest son on a hospital ward, wallowing, sat on my butt, scrolling social media and eating chocolate. Less Swift, more sloth;  I can feel the helplessness wanting to swallow me up; shut me down again. 

(sorry sloths everywhere who are probably outraged at the comparison) 

I’ve been extremely touched how many people have commented/got in touch or shared my previous post. Thank you. 

I wish what I had written didn’t resonate with so many but I am also grateful for the support and the sense of solidarity. 

I recognise the issues facing my family are far from unique. Judging by support groups I belong to, friends, social media and so forth, this utterly deplorable battle for services to provide and protect those most in need, those who don’t have a voice of their own, those with the least ability and energy to fight are being waged up and down the county. 

Whilst the difficulties faced may be slightly different, they all share a common denominator: the vulnerable, those in crisis, those society should be protecting and empowering. 

Forgive my Whitney Houston moment but our children ARE the future and if we don’t invest in them and secure the best possible pathway, what hope is there for society moving forward? 

I also know the elderly, infirm, mentally unwell and so on deserve their cause being championed in the same way. 

I recognise on a deeper level my attitude is simplistic and that something policy-wise, fiscally, has to give or change dramatically going forward. 

How do we achieve this? I don’t know; I never professed to have the answers as to what this should look like in terms of the bigger picture. 

All I do know is a seismic shift is necessary, society is screaming out for it. How we approach this, how we can achieve it is for somebody/ies far more qualified than I. (Otherwise I probably should be standing for government….🤔) 

The demands of a large, aging population who are living longer, the epidemic of obesity, drugs/alcohol/cigarettes, the advances in medical science meaning those who once would have met their maker because of cancers, heart disease, prematurity of birth and the terrifying increase in the so far unstoppable dementia are well documented. There can be no escaping the fact that expectations and demands for provision will increase year on year. 

All the while the funding for front line services is being reduced or in some cases done away with all together. Departments asked to find millions in cost savings, balance the books and yet still pull it out of the bag, somehow. 

Morale is at an all time low as evidenced by the mass exodus of Doctors, nurses, emergency services and so forth. 

I’m not naive. I know the country is on its knees financially and floundering in uncertain times: Brexit, the future of the NHS and government but the refusal to engage, instead throwing up wall after wall, challenge after challenge means there’s less money in the pot to provide even the most basic of services. 

Is it just me and people like me that can see the irony in money being spent on disputing and denying care instead of the care itself? 

We are informed of cuts to services/benefits/ grants every time we switch on the tv, open a news paper.  The effects of austerity on all aspects of social care, health and education (and of course the ripple effect on our police force, armed forces and such like) have been hiding in plain sight for many, many years

Why is it that the major political parties seem far more invested in scoring points at each other’s expense and plotting a coup to oust their leaders than implementing change and securing services for the greater good? 

I want to believe the bean counters genuinely care, that there is an appetite for change but they have become so blinded in covering their backs, their departments and their funds, (actually the tax payers funds) they have forgotten their original purpose. The other alternative: that they enjoy the power trip, playing god and causing abject misery has to be some dystopian fantasy…. doesn’t it?…

I do know that continuing with this ostrich style approach, riding rough-shod over those of us trying to cope day in, day out and strangling us in a bureaucratic nightmare, (presumably in the hope that parents/Carers will give up) ISN’T helping. 

If as much effort and emphasis was put into providing and fulfilling services, identifying and enabling children, parents and the wider family before they reached crisis point a great deal more would be achieved. 

I can’t help thinking that in fact the overall financial outlay would ultimately be a lot less, nevermind the impact and fallout on the family which ultimately add to the spiralling costs. 

How much do local authorities spend on retaining expensive legal council, defending cases and when challenged by parents on the attack, concede a case with moments to spare? The costs in such situations are not merely financial.

Whilst I cannot go into the ins and outs of our case in detail at the moment (until we receive the decision of the SEND tribunal I don’t want to prejudice any outcome) I can relate some of the damage and the wider implications the delays have caused us so far: 

  • Inability for autistic child to access mainstream education since March 2016 resulting in high levels of anxiety, depression leading to self harm and suicidal idealisations necessitating multiple in patient/out-patient hospital stays
  • Provision of interim specialised education package with 1:1 staff ratio/on occasion 2:1 to provide up to 2 hours study per day (where possible round child’s anxiety) 
  • Child unable to access GCSE subjects/make option choices
  • Involvement of multiple agencies on numerous occasions – police, accident & emergency, CAMHS, children’s social care, Young Carers, autism out reach, fostering team and foster carers
  • Local authority (LA) assessment and review officers to prepare EHCP, take information to specialist information panel on multiple occasions, liaise between relevant parties, issue consultation paperwork to potential schools 
  • Assessment of child by educational psychologist for local authority 
  • School transport (single occupant) with escort to ensure autistic child safely taken to and from school
  • Maternal mental health crisis triggered, medical intervention required,  inpatient psychiatric care for 3 months, multiple medications and therapies
  • Community care package to support maternal mental health, crisis team management, out of hours services 
  • Care package from disabled children’s team to provide direct payments in support of care for medically complex child thus enabling sole breadwinner to continue to work 
  • Emotional support to other children in the family necessitating pastoral support, teachers from 2 separate schools reporting back on children’s well-being and attending looked after children’s (LAC) team  meetings, approximately every 6 weeks
  • All children in family requiring support and intervention by CAMHS  to address trauma and ongoing psychological fall-out
  • Family engaging professional legal team and independent educational psychologist to prepare case for tribunal
  • LA engaging in-house legal advice and support
  • LA acquiring professional legal counsel to present at tribunal
  • Convening of independent tribunal and panel member(s) in official court to hear evidence from family and LA surrounding case 

How much does all of this add up to? This is not an exhaustive list and no doubt  there are things I have unintentionally missed/forgotten but I think it is a fair representation. It’s pretty depressing reading isn’t it?  

Has what I’ve detailed shocked you? We are just one family in a cast of thousands, dare I even say millions. 

Unless you or a loved one need to avail yourself of services, you assume it happens to others; not to people like us. 

We are now the others. 

How do you sleep at night?… part 1…

Heads up, a warning: I am enraged. White hot, scalding anger that is making me vitriolic and bitter. 

I know it’s doing me no good and I should channel some inner zen but there’s no yin in my yang and frankly I need something else to focus on; some kind of drive to power forward instead of zoning out passively. Time to create a stink. 

I don’t as a rule swear very much. Mainly because I have spent and continue to spend a great deal of time round small folk, be they my own or other people’s and the fact that mummy has a potty mouth is not the kind of accolade I want to be renowned for.  It doesn’t mean I don’t think in creative Anglo-Saxon oaths but I try to restrain myself from actually launching into a tirade that would make a sailor blush. 

Over the years, it’s been quite amusing to find substitute words for the things that have nearly slipped out & turn them into something socially acceptable before the offspring absorbed it as their latest word du jour. 

Try to teach them please/thank you/hello/goodbye in polite company, you would think I was attempting to teach them the full works of William Shakespeare… in Flemish. Yet one *almost* expletive of a wangdoodling, cowbunkerling f-bomb amd such like and they have absorbed it by osmosis. 🙄

Tonight however. I make an exception. I am angry. So fucking angry. The fact that fucking just autocorrected to ducking as I typed it, has incensed me further still. 😡😡

I feel sweary. I feel ranty and shouty and full of words my Dad would get cross with me for using (even though he taught me most of them) I’m even tempted to use the ‘c’ one (& I don’t meant Christmas) – sharp intake of breath.

But I can’t have a good shout, unleash a stream of invective because yet again we are in-patient on Hotel NHS and there are a lot of very small people around whose parents would quite understandably be distinctly unimpressed.

So I’ll do my ranting, raving and effing and jeffing here on my blog; after all I did start my musings some years back in an effort to make sense of it all. Life that is. It’s been cathartic to brain fart away.  Download and dump the crap (d’ya see what I did there?!) 

Half the time I start a blog post with some vague notion of what I want to write about but no idea what will spout forth. I usually feel better by the end. I’d love to be all coy and twee and say I don’t care if people read it or not but actually that would be a lie. I do care. I suppose I need some validation. 

Tonight however I REALLY need you to read it, share it, spread the word. Because I’m sick of the powers that be getting away with it. Letting down vulnerable children. Leaving families in crisis, drowning in despair and fracturing already fraught and taut relationships. 

3 weeks ago today we took our local authority (LA) to a special educational needs tribunal in an effort to secure an appropriate, residential school placement for our high-functioning autistic son.

This was a culmination of 18 months of fighting and battling and relentlessly dealing with the stalling, the hoop jumping bureaucratic, bean-counting process. 

Our 14 year old who should have chosen his GCSE options last school year and commenced this September term on the pathway forward to achieve his future potential has been entirely let down and cast aside by THE SYSTEM.

Would it shock and surprise you to learn he’s received less than 2 hours education per day since March 2016? I know it does me. 

I also know if we personally elected he only attend school for this woefully inadequate amount of time, over such a long period, we would have been threatened with fines and imprisonment by the education department. But this situation is not of our making so apparently that makes it legal, ok, just tickety-boo and we can all smile sweetly, nod and wave because they are trying THEIR BEST. Except they are not. 

The powers that be are far more concerned with covering their departments backside, zealously guarding their pot of funds so they don’t actually have to put it towards what’s in the best interests of the child. 

 I hasten to add this is NOT the fault of his current school who have done everything and then some to support him and us as a family in providing him with a suitable education whilst time ticks on relentlessly. But they don’t have the resources or specialist autism knowledge to support the style of learning and can’t provide the low-sensory low-stimulating environment he needs to facilitate his learning.

Even so his mainstream school have strived to do all they can; he has 1:1, sometimes even 2:1 sessions in an area well away from the hustle and bustle of the main school. They have come up with creative and thoughtful ways to stimulate him;  to forge a kinesthetic approach that captures his imagination where they can. But it’s not working. 

On that at least the LA are in agreement on. But that’s pretty much where it ends. 

I knew I should have smelled a stinking, great dirty rat when the  placement panel convened in October last year and agreed that our son did indeed require a specialised educational establishment. 

Not for us the refusal to assess for an education health care plan (EHCP), not for us the refusal to grant such a plan and not for us the dispute over main stream or specialist placement. So I should have known. It had all come to us far too easily.

Having had the benefit and heartbreak of reading other parents accounts of the lengths they have had to go to even just to get their  LA to agree to assess, I knew we had been extremely, for want of a better word, ‘lucky’ 

But really that’s where our luck ran out. It’s much harder than you think to find appropriate, specialist education. There are a myriad of schools out there meeting complex and varied needs but how do you narrow it down?

In actuality your LA are supposed to help you with this too. They paid lip service to it so I ended up resorting to google and a pick and mix approach, narrowed down by area of expertise and geographical location. 

I’ll spare you the laborious ins and outs of the very lengthy and exhausting process. Suffice to say, after panel sat in January 2017, they decided they didn’t have enough information on our case to make a decision. Sigh.

In February 2017, although all the information from the 3 schools we had received provisional offers of placement from (we had approached more than 12 by this point who couldn’t meet our son’s needs) the panel asked to consult with yet another 3 schools. Of course if they had read the case notes properly they would have seen that 2 out of the 3 had already been approached by us and felt unable to offer a place. The remaining school was full and wasn’t suitable for reasons I’m not at liberty to go into. It would be an understatement to say I was fuming.

The assessment and review officer (ARO) acting for the LA tried her best and wanted to expedite matters instead of making us wait till the March sitting. She was new and fed duff information from people higher up the food chain who left her carrying the can after dangling false promises.

The people with THE POWER don’t like taking your phone calls. They are it seems unable to respond to email, even when you have their direct email address. Their phones must also be unable to make out going calls as they never call back and mysteriously all voicemails go awol. Or something. 

Apparently they can reply to your local MP if he/she gets in touch after you have involved them and made them aware of your dissatisfaction  but only with vague promises that matters are in hand and will be dealt with. A word to the wise: don’t hold your breath. 

So March 2017: to our dismay,  panel named a wholly inappropriate day-placement school some hour or so away from our home which they expected our son to travel to and fro on a twice daily basis.  

Having previously viewed this particular school, I had submitted a lengthy explanation highlighting why the establishment, the cohort of students, the academic remit (or lack thereof) and lack of opportunity to promote our son’s social/emotional development in a holistic over-arching approach to his education were not just incompatible but potentially very damaging and in the worst case scenario likely to exacerbate his anxiety, self harm tendencies, suicidal idealisations and more extreme behavioural difficulties. These concerns were also backed up by his psychiatrist and psychologist from CAMHS (child adolescent mental health) in 2 separate letters. 

It will hardly comes as a surprise that the school the LA had selected was the cheapest option. 

I was swiftly reminded that the LA only have a duty to provide an education for my child and if they can prove that is enough, it doesn’t matter what we know to be in his best interest, what has already proved dividends in students with a similar make up, what’s in the best interest of society over the long term in aiding him to achieve his potential, thus ensuring he contributes economically, socially and attains independence; to negate relying on the state for benefits, or support services. The school we have found and the costs associated with it are ‘incompatible with the public purse’ and therefore they can refuse to provide it. 

They accepted the school we had found is superior in every way; they accepted it could meet need and that  like on like it would (based on past performance of students very like our son) offer him the best opportunity and chance of success going forward. Indeed The Judge at tribunal was very clear on all these points.

Yet the LA refused to concede. They have played dirty; suggested we have stalled the case by refusing to ask for an earlier tribunal date – although fully aware that the independent educational psychologist we had asked for input from couldn’t assess until the end of June. Paradoxically, once the extremely enlightening report had been shared with the LA and we suggested moving up court proceedings, they couldn’t accede to our request. 

Although the statutory dates for submission of evidence were clearly set out in writing and which both parties agree to abide by, the LA suddenly found a pressing need for their own educational psychologist to assess our son, although they hadn’t deemed it necessary since the previous visit a year ago. Funnily enough they then asked for the revised report be admitted into late evidence.  

Surprisingly they also suddenly discovered a letter that had been ‘misplaced’ from our son’s psychiatrist (and which we had never been party to even though we have always been copied into all other correspondence to date) which were counter to 2 previous letters she had written supporting the need for a residential specialist school and expressing her grave concerns to him being placed in an environment such as that outlined in the LA’s chosen school. How very curious indeed that all this information had only just come to light…..

To be continued…. 

Shiny happy people….

I’ve noticed a theme in many of my blog posts – the titles often spring to mind based around music. 

Although I’m not quite sharing the lyrical prose, more precisely the sentiment behind Shakespear’s line: “if music be the food of love, play on!” I think it’s apt that music evokes so many thoughts, memories, emotions (good & bad) nostalgia for the past, excitement for the future (nothing better than THE song of the summer fueling the count down to an epic, sun-drenched, sun tan lotion coconut wafting, possibly cocktail inspiring yearning). 

For those of you who are mere whipper snappers, Shiny Happy People was brought to us by R.E.M. (Have a google, promise it’s worth it) Apparently released in 1991 (now I feel REALLY old) the video even now brings back memories & the halcyon days of having learned to drive, gaining the first tastes of freedom as my parents allowed me to stay out at parties providing they knew where it was, if there was a responsible adult there etc) & the realision that I was on the cusp of adulthood, (although A-levels were less fun)  In my present frame of mind how over-rated THAT adult bit turned out to be…. but it would be wrong to be all doom & gloom & as a rule of thumb, I think those who know me fairly well would have, up until this recent blip (understatement extraordinaire) have considered me generally an optimistic, enthusiastic, life embracing & vibrant (not necessarily alcohol induced on the last part – stop rolling your eyes at me! 🙄) person.

Since I entered the hospital (spa) i’ve many time been asked about the Lisa of old by staff and inmates. What was I like before I crumbled? What did I do with time & to describe my qualities good and bad.

I think the person I used to be tried her best, be that whipping up cakes, volunteering for various jobs/school activities/charity work, getting Minx’s request for 10 different shades of nail polish on each set of hands/feet PERFECT, trying to interject exactly the right amount of enthusiasm & salient nodding to G-man’s newly created mind craft world number attempt 24598645 and basically, feeding/clothing & generally keeping on top of things as  best I could on the home/medications/therapies & ENDLESS meetings and appointments front. Any day we made it through with minimal maiming/moaning and a modicum of decorum, applied equally to kids, spouse or the fur babies was a day to be if not exactly celebrated, vaunted as a win won.

Most of all, I’d like to think I was a friend to many. One that could be confided in, counted upon; secret keeper, confidant, being around through the highs & the lows – proffering the cake & prosecco as needed.

I hope I have been a decent enough mother/wife/daughter/sister/auntie etc & been there for those in need be that family or friend.

I recall the old Lisa being terribly nervous but honoured to stand up & speak to a roomful of strangers at the Rare disease conference https://definitelynotthewaltons.com/2016/01/15/put-on-your-red-shoes/ and   https://definitelynotthewaltons.com/2016/01/20/d-day-red-shoes-part-2/to a room full of geneticists, high powered medical bods & patients & families about my family experience of raising an undiagnosed child.  

I attended workshops, coffee mornings, presentations & felt confidant enough in a subject that I was passionate about to make my voice be heard and counted. 

But that Lisa isn’t me, at least not now & doesn’t feel like it ever will be again. (Don’t you just love a pessimist?! 😳) 

Group workshops and therapy have tried to convince me she’s still somewhere there, buried under some rubble, a bit dusty, rumpled & crumpled but nothing that a quick febreeze and a dollop of self belief won’t sort out; however at this very moment, the disconnected, discombobulated partial person I am seems far removed from the one of old.

So that leads me on to my next party piece favourite, with a slight play on words; “if you’re happy and you know it…. take your meds.” Meds are my friend right now. I *may* have alluded to this once or twice (ahem) in the last 2 blog posts and I am quite certain there will be many readers out there shuddering at my cavalier attitude to essentially keeping the pharmaceutical industry in filthy lucre. But a valuable lesson I have learned in these darker days is that whatever gets you through is whatever you must do.  

The Doctors and nursing staff keep a careful and watchful eye on what you take as stated by the consultant and what is written up for PRN (as needed) and if you start getting a bit trigger happy on the prn front, they are not going to dish them out like smarties and are very keen that you try distraction therapies, chatting things over with your designated care-coordinator or even something as simple as a hot drink, walk in the gardens before willingly handing over the gooood drugs.

It is fair to say they leave you a little floaty, present but not quite there, comprehending of your surroundings & those of your fellow inmates but all the edges are softened, flattened & much less likely to leave me blubbering pathetically and hoping I’ve rammed enough tissues in my pockets before having to resort to wiping my nose surreptitiously on my sleeve (eewww). 

Today has necessitated plenty of tissues, prn & if I could pull it off pop star sun glasses worn at ALL times inside and out plus multiple avoidance, floor gazing & a pretense I’ve gone slightly deaf. 

Unbelievably, my 28 day (spa) hospital stay is coming to an end this Wednesday and despite feeling far from ready, able or even slightly like I can cope, the health insurance have not agreed to continue paying for care. 

Apparently after 28 days, I’ve had my lot & should be back to my usual, sparkly self. (Must make a note of that, can be my new daily personal mantra) 

My consultant did her level best to persuade them I am far from ready, she argued for day patient therapy & that was met with a resounding no. They even tried to secure me on-going therapy as an out patient since this should be covered under a separate claim area but apparently “the computer says no.” 

Since costs in a facility like this are in excess of £3000 per week, we are not in a position to stump up the moola for a continuing stay. 

Apparently the kids still need all their vital organs & my liver/kidneys will be more likely preserved in a prosecco/formalyhyde combo – pre admission obvs… haven’t touched a drop in here & even for the few days prior to admission – in fact still not entirely convinced that my significant jitter/tremor commented on during early sessions wasn’t down to prosecco withdrawal symptoms…. NB – entirely joking; despite my reputation as the lush of FB, I’m generally a one glass a night type girl and for clarification purposes, I mean a small, glass not one that can fit an entire bottle!! So purely on a practical front I can’t ebay anything off…

So what now? Well the consultant has asked for the crisis team from the NHS local team to review me urgently tomorrow & try & find me a bed in the local NHS hospital. 

The thought of having to go through this all again with new staff, therapists, teams etc is exhausting beyond belief & I’d be lying if I said I wasn’t terrified. But my bigger fear is that there won’t be local bed space & I will be shipped off to Scarborough or such like; being this is more than an hour away from the family home & the logistics of trying to retain & build up some kind of relationship with my kids, puppy, not to mention hubby, this is untenable as an option to me. So I will be left with the only option to return to the family home. 

Do I feel ready? Hell no. Do I feel I can “cope?” Not even slightly. Do I still have as my end game the “plan” that put me in here in the first place as my intention? Without a shadow of a doubt. So back to the selfish, weak, feeble, ridiculousness  & all the other things I loath about myself it is then…

Meanwhile tonight I will cuddle G/man’s teddy that he gave me for support that bit harder & hope the combo of anti anxiety/depression & sleep meds I took will kick in asap….