Thursday, 17 September 2015

Schools, roads and automobiles

We need to talk about escorts…

No, not that kind of escort (though I sense this post may get some ‘interesting’ Google traffic).

I’m talking about transport escorts.  SEN transport escorts to be specific. Which means that right now, depending on who you are, you are either saying, ‘Who the what now?’, or, ‘Oh, I love our escort’, or banging your head repeatedly off the table whilst slowly chanting the phone number of the local authority transport team (which are now the only words you are capable of saying after desperately trying to organise transport for the last two weeks.)

You see, it’s the start of the school term after six long weeks of summer <prosecco corks pop across the land>.  And for those of us with children of the more unique variety, that doesn’t just mean dusting off the school bag and frantically scribbling names onto clothing labels: it also means figuring out how on earth they will get there. 

Yes, it's a bear riding a cement mixer. 
No, we don't have a toy bus.
Because children who attend special needs schools often travel long distances to reach them.  In some cases an hour each way.  Which would mean four hours of a parent driving.  A parent who may have a job to hold down, or siblings at completely different schools. Thankfully, when writing policy, some sensible governmenty person recognised that this was not viable and ensured that many special needs children are entitled to transport.

In theory….

And this is where it all gets a bit sticky.  Let me start by saying this post is NOT a criticism of transport escorts.  They are pretty fabulous.  It’s about the process in the background which does little to protect them, is hugely variable across the UK and within which the combined words ‘risk’ and ‘assessment’ are about as likely as ‘Prime Minister’ and ‘Bobby Davro’ (Big Brother aside)………(look, we had limited TV channels for a while…I judge myself more than you judge me).

Now I do accept that my opinion is a little skewed, as I only have our experiences in two boroughs.  But if I was to tell you that in borough 1, my little boy was transported on specialist medical transport marked ‘ambulance’, on his own, with an escort in a paramedics uniform, with no clear assessment process behind that decision; and that in borough 2, they were initially considering putting him on transport with five other children and one escort with no training… can see why the adjective ‘variable’ seems appropriate.  For the record, we are not in favour of either option (and not because I’m just that objectionable and annoying).  Both transport companies are great – the objection is nothing to do with them.  But I don’t think it is appropriate to spend public money putting a child on specialist transport when all that is needed is a 15 min training course, nor do I think it is safe to have a child who needs constant supervision and has 20 neurological attacks per day on a busy bus with other potentially vulnerable children in need of support. 

And at the heart of this problem is one key issue…..accountability.  Because what is happening in most local authorities is a stark avoidance of accountability.  Transport contracts are outsourced.  Which is fair enough, as long as responsibility and accountability aren’t outsourced with them.

Escorts are generally not employed by the local authority.  They are employed, interviewed and supported by whoever has the contract – in some cases a transport company.  And in others a local taxi firm.  These companies are often not given the information they need, or any training.  Responsibility for making escorts aware of the vital information that they need is often handed to parents.  This has been the case for us in both our boroughs.  In our current borough, the transport provider was given no information about our son’s condition whatsoever before taking the contract.  All information has come from us at a later stage.  We have been told by the local authority that escorts ‘cannot’ intervene with basic actions like keeping our son’s head upright to ensure he doesn’t choke in a prolonged paralysis attack.  Nor are they supposed to perform basic CPR should the worst happen.  They have not been given this basic training.  They can just pull over and call and ambulance – on remote roads.  In the middle of nowhere.

And this is where I get a little bit antsy.  Not because I have a ‘special’ child with ‘specialist’ needs.  Not because I’m a foot stamping, unreasonable parent with no understanding of the pressure on local authority budgets.  But because it makes no sense.  Lets’ park the fact my son is medically complex.  Let’s completely forget that he is high risk.  Let’s just focus on one thing……he’s pre school age.  The highest risk age.  The age where there is a current, completely justifiable push for all mainstream nursery staff to be trained in CPR.  A push that is quite rightly about to become law.

Yet, for some unfathomable reason.  Pre-school children, without their parents, on remote roads, with a history of medical emergencies are not protected by any law to ensure that escorts are given this basic training.  And neither are the escorts.  I said at the beginning this is not a criticism of escorts, or the companies who employ them – they deserve this training for their own wellbeing.  The duty of care is not theirs.  It is the local authority who contracts them.

And so, in our experience, what often happens is parents and transport companies work together.  They develop a trust and a bond.  There are no guarantees, no legal guidelines, but we work together to reach a point of trust.  A ‘don’t worry, Dave the driver used to be a paramedic’ reassurance.  A little wink to the escort (...that’s just doubled the questionable Google traffic). 

Does it work…for the most part.  Is it right…I’ll let you make your own decision. 

In asking around on this issue I’ve heard lots of different stories from different areas.  Those with escorts trained to perfection by Community Nurses … tales of taxi companies with bald tyres and no child locks showing up to transport a vulnerable, mobile, pre-school child.   It really depends on where you live.

There’s no question that funding is a root issue here.  Local Authority budgets are bending so hard that the impending snap is almost audible.  There are lots of core challenges around accountability, appropriate assessment and consistency.  But there is also one around rhetoric and response.  Stating ‘well many parents choose to transport their children themselves’ is not a viable response to any challenge.  Firstly, that doesn’t really inspire confidence.  And secondly, I can’t.  Me driving alone, monitoring neurological episodes for 45 mins each way is not a preferable option.  Secondly, I work.  I have no plans for that to change.  I’m not going to bang the working carers drum again, but… know (hashtag parliamentary inquiry – nuff said.) 

But all of that aside...this issue is so complex I can only boil down it to one request.  To me, it is very simple.  Transport escorts should be given the basic 15 minute training that they need to save a child’s life.  This should be mandatory if that child is in the high risk pre-school age category.  For their confidence and support, for safety’s sake….it just makes sense.  I’m not saying it resolves everything, I’m not saying that it’s a perfect solution….but knowing that when I put my baby onto a bus, there is someone there with the confidence and knowledge to breathe life back into his lungs on the side of the road is a pretty major reassurance in the context of our lives.

We have waited an hour for an ambulance in an emergency before.  Thankfully it wasn’t a respiratory emergency.  But every day, it gives me immense confidence to know that I do have this training.  I have it, because I had to.

I have it because we weren’t allowed to leave hospital without it - twice.  It was deemed so important, that we were given it twice.   

It took 15 minutes.  15 minutes to learn chest compression depths, learn the vital breath:compression ratio.  To have the tough talk.  The one where you know this training really matters, because no one sugar coats it.  15 minutes to learn how to save a life.

That’s all.

Just 15 minutes. 

Sunday, 17 May 2015

Confessions of the lucky

Eyes off the foot...just sellotape a leaf on.ok..
It’s been a strange old week.  A week which saw an unexpected majority conservative government take power.  A week in which social media has been a flurry of polarised comments.  With the left and the right exchanging blows on the deficit, the budget, the NHS, the cuts.  Oh yeah…the cuts.

I have stayed uncharacteristically quiet watching this debate unfold.   Mostly because it would just be too obvious for me to pipe up…yet again.  You may have noticed that despite my best efforts this blog occasionally tips a teensy bit into the political.  Not in terms of party – irrespective of where my personal views lie, I have very deliberately stayed away from mentioning party.  Because what interests me is policy.  And that’s unsurprising when you consider that families of disabled children are right on the front line of much of that policy.  So we have a tendency to talk about it.  A lot.  Admittedly an annoying amount sometimes (sorry bout that). And what has made it such a strange week is that all of a sudden, everyone else is talking about it too.

For the first time in my life – I am bang on trend.  I’m like gingham prints and clown trousers (yes…that’s a thing.)  I’m feeling like I should be sat in a bar in an obscure part of Hackney…chatting social policy whilst drinking artisan beer.   Except I’m sat at my table in the commuter belt, blogging about social policy whilst removing porridge from my hair.  Next year eh?

But my reason for not automatically crashing into the social media debate is because we are, in many ways, an inaccurate representation.  We are basically, phenomenally lucky.  And that makes it very difficult to speak up as parent to a profoundly disabled child.  Because I have very little right to represent that group.  We are a two income household.  We are moving to a house in a very lovely little village.  It’s no mansion and I am slightly terrified of the impending quotes to wheelchair adapt.  But still.  We are lucky.   So how can I possibly leap into a debate on behalf of a group where four in ten families are under the poverty line?   

To be honest, I can’t.  I can only speak about our experiences.  I can only tell you what happened to us.  That how we look like on paper doesn’t come close to the truth.  That there is a complex mass of challenges around work, childcare and housing that sit behind that picture. That we are pushing ourselves to be in that very lovely village, because it is one of the few local authorities where there is childcare for disabled children under five. I won’t write about childcare again, I’ve bored everyone to tears on that here and here.  But what I can say is that there was a time when our options seemed very limited indeed.

There was a point where we were stuck.  Wedged right in the middle. Whilst we were lucky to own our home, we could not move ourselves somewhere big enough to wheelchair adapt on one salary, there was no adapted rental option available and the advice from our local authority was to move to council housing.  Only we didn’t really qualify.   We needed to earn more or earn less. And unfortunately, the current system is only designed to push families of disabled children in one direction.  Those families are facing increasingly stark choices.

What changed our situation was pure, simple luck.  A paperwork cock up went in our favour and enabled us to access some degree of childcare.  I won’t wax lyrical on that for fear that someone may want to undo that cock up (I can feel the eye of the town hall swinging towards me like the eye of Mordor as I write that). But it was luck.  Not hard work.  Not winning a logically, legally supported battle for support. 

We aren’t special.  We aren’t clever.  We are just very, very lucky. 

And that matters because of the other thing that has kept me quiet in the last week.  I’m having an increasingly emotional reaction to some of the media coverage.  And I need to get that under control before joining the debate.  It usually comes when I foolishly scroll down on news articles about disabled children.  When brain and index finger have a moment of disconnect.  When I reach the comments section and inevitably, I find them. 'Those' commenters. The ones who are unfailingly vitriolic in tone.  They talk about ‘free houses’, ‘free cars’, ‘free money’ (really?)  They drift into completely unnecessary stereotyping.  

What those commenting fail to accept is that families of profoundly disabled children are, by necessity accessing state services.  That it is not a matter of choice.  It can take a whole team of people just to facilitate some degree of ‘normal’. We walk in a different world.  A world that is often misunderstood even by those within statutory services.  I remember an accusatory nurse, firing questions at me on an open hospital ward about why we had a social worker.  Eyes thinned, face filled with judgement.   He had absolutely no understanding of the disabled children’s team or that they even existed.

And these stereotypes are having a real impact.  A survey from Contact a Family showed that 70% of respondents felt the stigma of claiming disability benefits for their child has increased in the last two years.  There is an 'us' and 'them' rhetoric that has stealthily and steadily crept into public consciousness.  There are some who would call it an act of masterful misdirection.  A PR trick of the highest order.  I'm not sure if it is that deliberate.  But there is no doubt that the families of disabled children have felt the stinging depth of cuts to public services, particularly local authority services. Yet they are perceived by many as somehow privileged.

And the cuts will continue to come.  They will.  And if you think that because we own a house and are a working family they will not impact us, you are very wrong.  We are still, undeniably state dependent.  We are dependent for vital equipment and we are dependent for respite support.  Like so many, we cannot look to the future of our respite provision with confidence.  Local authority budgets for disabled children are not ring-fenced and will no doubt be in the firing line again.  And I feel for the staff on the front line – I really do. Whilst I may have entered into many debates with the local authority, mostly around childcare; there have been so many times where it has felt as if social care and I are merely stood shrugging at each other in mutual defeat.

And I know that the challenges will only get harder with time.  I made a deliberate decision some time ago not to actively engage in debate around adult services.  That may sound blinkered.  Which would be accurate, because it is. But it is also fundamental self-protection.  It is the result of a piece of advice from a far more intelligent and experienced mother than me.  A parent to two disabled children with very different outcomes.  She saw me managing a child with an uncertain medical future, yet panicking about what would happen when he reached adulthood.  She said one line that has shaped my approach for the last year, ‘don’t do that to yourself.’ 

And she was right.  But now I am ready for that approach to change. Because I can’t completely ignore it.  The information is right there, brushing up against me and no matter how hard I close my eyes, it’s impossible not to take a peek.  It is impossible not to become increasingly aware that my foolish belief that we would control our son’s future in adulthood was misplaced.  That when he legally becomes an adult, the forceful hand of the state could come swooping into our little world more than I expected.  That my vulnerable, loving, non verbal, totally dependent child’s future does not lie in my hands.  That the policies taking shape now, may well dictate what the future looks like.

And that is frightening.  It is catch your breath, hold on tight and push down the acrid rising panic kind of scary.  I’m not looking too hard quite yet. Because I might not like what I see.  But I can’t ignore it for ever.  And with two recent tragedies involving young adults sat right on my doorstep, I’d be a poor excuse for a parent and a human being to ignore the well-developed, heartbreaking and ever evolving campaigns being led by their families.

And this should matter to all of us.  Because at some point we will all be state dependent.  Whilst I want to believe that my later years will consist of sneaking gin into the old people’s home and organising late night zimmer-raves when the staff least expect it (I’ll see you there).  I imagine the reality will be a little more grim. 

Because here’s the thing.  This sucks.  All ways round.

And I genuinely don’t mean that as a political statement aimed at either side.  I don’t believe that even the most extreme media stereotype of the right would claim that cuts to public services are an inherently good thing (from their corner office whilst eating a roast goose). Similarly, I don’t believe that the extreme media stereotype of the left would claim that national debt is an inherently good thing (whilst chaining themselves to a railing and petting a rescued goose).  And whilst we all know that those stereotypes are in no way reality, media coverage and social media often show a degree of polarisation. One or the other.  When in fact we all have one thing in common….the extent to which the whole picture generally sucks, not matter which side you are on.

Whilst I love political debate, at some point we have to stop being so polarised and come together. Because the reality of austerity means that this is not going to be a golden era for public services.  And that won’t just be hard for a few of us, but many of us.

So at some point we are all just going to have to metaphorically hug it out.  Whilst I hope the conversation continues, I really do, I know in reality, the current level of interest from the mainstream will most likely wane and fade.  But no matter where our individual politics lie, we can all translate these conversations to positive action. 

For me, it will be more involvement with small voluntary groups (many of which are seeing their statutory funding levels decrease).  It will also be an effort to get to know the parents of disabled children in our area when we move.  Because sometimes, it’s the little things that matter when you are pushed to the brink.  Just doing normal people things like going to a coffee or going to the pub. 

Because we all need that.  And as time goes on and services change and evolve, some of us will need it more than others.  Sometimes I can offer support.  And I pledge that wherever I can, I will.  But alongside that, I accept that, sometimes, the frustration will rise, the fear will set in and I will be the one who needs it. 

So if you're offering…mines an artisan beer (clown trousers optional).

Wednesday, 22 April 2015

White wine and patchwork

This is a hard post to write.  A really difficult one.  A bite your lip; dig your nails in your palm toughie. 

And I don’t mean that emotionally.  I mean it really blinkin literally. 

Because I’m stuck.  Really stuck.
This Friday (24th April) is Undiagnosed Children’s Day.   The day that undiagnosed families, stand up, step forward and flood social media with that all important messaging.  And I’m completely out of ideas.
If I’m honest, when I wrote about Undiagnosed Children’s Day on year’s one and two, I didn’t really think we would still be undiagnosed by now.  I thought there MUST have been some kind of answers.  At least one little oddity on a test that gave us a direction.  So when I wrote, I put myself completely out there.  Full on reality.  I hit you with some scary looking no make-up selfies.  And now there’s not much left to show or reveal (alright I probably left a teensy hint of mascara on there, but it all gets a bit mirror crackingly hard to look at otherwise).

So this time around, how can I put it across differently?  How can I explain how important this day is?  How chronically underrepresented families of undiagnosed children are and why awareness and funding are crucial.  I’ve been desperately trying to come up with something (whilst flicking back and forwards to look at funny memes and cartoons on Facebook).  And I’m getting nowhere.  I’ve considered an insightful drawing, but I have no artistic insight…or talent for that matter.  I’ve considered a timely politically relevant pre-election post, but unravelling the party health pledges just made my head hurt. I’ve even considered a haiku (look, I didn’t say they were good ideas).  But I’m still stuck.

So I’ve started to think about what ties us all together.  The themes that recur. For many, it’s the devastating uncertainty of no prognosis.  For others, not being able to accurately treat unfathomable symptoms.  In some cases, not knowing if future siblings will be affected cuts deeper than can ever be explained. 

But one keeps coming up.  It pops up in the statistics, in the blog posts, in the articles.  In many ways it’s a direct consequence of the unknown.  It affects the parents of the medically complex, fearfully sat beside hospital beds alone. Walking shell shocked down sterile corridors. It impacts the parents of children with unknown developmental conditions; so often misunderstood and unfairly judged as having children who ‘misbehave’.  It affects those sat somewhere in the middle, struggling to find a way to explain the inexplicable.  It affects all of us who have battled for support, not ticking boxes or fitting into the system that is meant to support us.  All who have stuttered over the whats and the whys, even around other parents of disabled children.  All who have inexplicably had to take a breath or hold back the tears as we meet a new baby or watch a child overtake our own.  Never out of jealousy and never out of sadness, just because every now and then a little gut punch hits and a little voice whispers, ‘you are different now.’

Isolation is a running theme and it affects parent carers immensely, even when a child has a diagnosis. 65% of families with disabled children report feeling isolated frequently or all of the time. (Contact a Family). Without a diagnosis, it can make it even harder for families to feel that they have somewhere to ‘fit’. 

And it is rarely the fault of those around us.  Friends can’t fix society.  Or statutory systems.  Or the fact that the woman on the bus last Wednesday tutted and rolled her eyes.   In our case, many people close to us have been immensely supportive and there are no words that can thank them enough.

But truth be told, it’s hard to be undiagnosed and not become isolated in one way or another.  And I’m not afraid to admit that sometimes it’s self-isolation.  It’s hard to know how to move forwards when there is no clear route. 

Only here’s a problem.  I’m sat here writing about isolation and it’s a bit hard to justify.  Finding our place in this new world, navigating this complex landscape has so often been easier than it could have been.  The isolation has been minimised so many times.  And that is because of direct support from SWAN UK and the people we have met.   I’m sat here procrastinating by looking at Facebook and l’m looking at a list of people I would never have known otherwise. 

Because without SWAN UK, there is so much I would never have done.
I would never have sat in a field drinking wine with funny, interesting people two years in a row.  I would never have jumped on a train to Bristol just to have dinner with a group of inspiring women (with wine, I admit – that recurs).  I would never have danced the Hokey Cokey with a 1980s television presenter (I would just like to clarify, that was at a children’s event and was not the result of wine).  I would never have seen a recognisable face in the loud and intimidating landscape of the children’s ward.  I would never have sat in the local pub in our tiny village and been able to talk to another parent who totally understood.  I would never have watched Little J flourish around other children who are all so different, yet just like him at a children’s theme park.  I would never have laughed at social media innuendo on a particularly bad day.  I would never have learned how to patchwork from a mum with actual sewing skills when I decided I wanted a ‘project’ (FYI – I have no skills).  I would never have had so many people to chat to at a disability equipment show, that I missed half the stalls.  I would never have broken down the walls around us by telling people about our experiences so openly.  I would never have kept up the fight to end the isolation caused by being pushed out of the workplace by statutory systems.  I would never have been able to think ‘this is going to be ok’ when things looked so undeniably bad.  Never have had the reassurance of those who have been there and come out the other side.  I would never have had a name for my boy’s unknown condition.  But we do.  He is a swan. 

...So I guess it’s not that isolating after all. 

But it could be so very different.  Because SWAN UK has no long term funding.  Their main grant comes to an end in April 2016.  1 in 25 children are born with a genetic condition and around 50% are likely to be undiagnosed.  SWAN UK provides the only dedicated support in the UK for families with undiagnosed children.  Families who often have absolutely nowhere else to turn.

And that support is vital.  Bringing thousands of people in the same situation together is important.  Having representation for us as a group is important.  Whilst I would love to believe that ‘what about the undiagnosed?’ regularly pops up on health and social care agendas; without a recognised and respected organisation advocating for us, I doubt it does or will.  

Breaking the isolation is vital.  Because whilst not everyone will share opinions or interests, whether you are passionate about green tea and yoga, or partial to white wine and patchwork; when there are enough people there, you will find someone to talk to.  And much like patchwork, the thread that binds makes the distinct pieces flow, no matter how different they may be.
And for us, that is why Undiagnosed Children’s Day matters.

Because with the right support, you will find people to talk to.  You will find people who understand.   You will do things that you would never have done otherwise.  And most of all you will find it a little easier to answer that voice when it whispers ‘you are different.’  Because we all are.

If you would like to donate to SWAN UK, you can, by texting SWAN11 £[amount] to 70070 or via their Virgin Money Giving page.

Monday, 16 March 2015

Frogs. (and the challenges of integrated care....but mostly frogs.)

You can tell the onset of spring in our house.  It’s usually marked by a yelp, an expletive and the clatter of a falling wheelie bin.

You see, we have frogs in our garden.  Lots of them. 

Stealth frogs, specifically.  They like to mark their return to our garden by waiting until dark before scuttling out in front of me right when I don’t expect it.  Hiding under the bins is a froggie favourite.  And given that I usually remember the bins need to go out in the last moments of fleeting daylight, my screams of horror are a little annual tradition (I come from London – if something near a bin scuttles, assume rat.   Always assume rat and move at speed.)

The reason we are bombarded by frogs is because every year, they return to the place of their birth ready to….well….erm….get their frog on.  Our garden is like the local frog dating service.  Only they are currently missing the required candlelit restaurant in which to make their first acquaintance (I know may be  overplaying the romance level, but this comparison has a pretty weak grip on cute and whimsical.  They are frogs and the love each other. Just go with that and don't think about it too much. They have little frog valentines cards.  It's lovely.)

The reasons they are lacking Chez Frog? Well, for the sake of safety, we had to remove the pond.

I know.  I know.  It’s bad.  In our defence, we didn’t have a lot of choice, as it was unsafe, completely stagnant and when the frogs moved out, the mosquito lavae moved in.  it’s also only a short hop to a nearby pond.  But I still feel hugely responsible for our froggie friends when they pop by.  So, rather than tearfully singing ‘Circle of Life’ when the local cats come to visit; I am on a frog defence mission.  They’ve got rocks to hide under, plants to scuttle behind and every mow of the lawn now involves a complex frog check procedure.  So far ‘operation Kermit’ is going pretty well, with survival rates well exceeding the pond days (I wasn’t brave enough to take on a heron).

But with each scream of abject terror and sigh of relief that it is not a rat, I know that we are now heading into spring.  Which means the days will get lighter, me and Little J will actually be able to go for walks at the end of the day (because we have no street lights here….see…and you thought I was being pathetic about the frog thing…imagine things scuttling everywhere in PITCH black.  You’re welcome for that nightmare.)  And so, we will have not only have a whole load more stuff to do as the days lengthen and outdoor therapeutic activities become an option, but we will have far more capability to do it.

And that’s actually quite motivating.   And I need some motivation.  If you are someone who reads this blog (and given my recent silence that is likely to be nobody), you will have noticed a bit of a gap since my last post.  The reason?  Well, I don’t really know to be honest.  I think I went into hibernation, frog style.  I just simply didn’t have anything left to say.   Which in itself, is rather worrying.  Because there is plenty to say.  There is plenty to talk about.  I just slightly lost the will.  Lost the interest.  And lost my way a bit.  I unintentionally engaged less with groups. I was constantly busy, but not really achieving much.  I liked to think this was a reflection of some kind of acceptance.  I had less battles to fight, less need for support.   Actually, it was something far less positive.  I had given up. 

I had started to give up fighting for support from statutory  sources, because we had fought for so long.  I had reached the horrible realisation that there are chronic issues within the system that cannot and will not be fixed by parent voices if no one is willing to listen.  And for Little J, I had also given up hope of that miracle improvement, that ‘developmental leap’ that everyone talks about.  It just wasn’t going to happen for us.  

To understand why, I probably have to give you some context.  You see, I am a terrible blogger.  I like commenting on wider issues, but I rarely reveal personal details and when I do, I hide behind anonymity. I tend to hint, or allude to, rather than just saying what is going on.  I neglect to mention key information that frames the entire point of the post. And last year, I neglected to mention a big one.

It started in Christmas 2013.  Little J began to have a new type of ‘episode’.  His entire body would become still.  Sometimes he could move his eyes, other times they would flicker.  There was only one thought in our mind – seizures.

And they were escalating by the day.  By January last year he was having 20 a day.  Then it was 50.  Then they would cluster.  By April he was  often  ‘in’ an episode more than he was out.   Then he began loosing skills.  First he couldn’t bear weight on his legs any more, then his arms were less co-ordinated, then he couldn’t chew properly, then he was struggling to sit.  There were serious concerns about his safety and risks of aspiration into his lungs. Discussions were had around long term tube feeding.  Ambulance rides became common place. Things looked bad.  If you know about genetic conditions and outcomes, then you know that developmental regression is the symptom you don’t want to see.

Only here was the strange part.  All of the testing for seizure activity came back negative. Hundreds of these ‘attacks’, which could last for up to an hour, or cluster back to back for hours on end were caught on EEG.  It showed nothing.  You may be thinking ‘fantastic’.  I mean, seizures are bad, so that’s good right?  Well, kind of.  Because these ‘attacks’ were clearly bad. They were putting him at risk.  They were taking away his abilities and they were putting him into high levels of distress.  There were some days when our beautiful boy was either in an attack, or sobbing in our arms.  Understanding what they were was our hope that they could be treated.  You cannot accurately treat a symptom without a name. 

We were powerless. Utterly powerless.

And beyond that, we were powerless to take control of our own lives.  We were trapped in housing that could not be adapted for wheelchair use, but financially prevented from moving.  We were, at the worst point, completely unsupported.  At this time, we had Little J in a mainstream nursery with a 1:1 for 10 hours whilst I worked and we had 2 hours a week of support from a carer through social care.  You may think (and many professionals would be with you on this), that I would have wanted to instantly pull him out of nursery, give up work and keep him at home.  But you would be wrong.  Because those hours were his safest hours. 

They were safest because there was more than one person there.  I cannot physically take care of Little J and get everything he needs, whilst never leaving the room. Yes, there may have been ambulances called to nursery, but at least there was always someone monitoring when it was time to call one and to let me know the minute there was a problem so that I could be there. So what happened next?  Well, unsurprising, he was quickly ousted from nursery.  The official reason was ‘breaching insurance’, but I don’t think the enthusiasm of the children on regularly seeing the big cars with flashing blue lights was matched by the parents.  Then his needs were deemed ‘too high’ for a carer and the carer provided through social care was removed.  Social care suggested it may be time for them to step back a little, as his needs were clearly healthcare needs and they re-referred us to healthcare.  Only there was a wait for that assessment and at that point, community level healthcare had little to do with us.  Our community doctor didn’t see what nursing could actually do.  Without knowing what the ‘attacks’ were, there was no rescue medication to administer and he had no tubes or wires in order for them to actively ‘nurse’. 

Yep, at our moment of highest need, living in a small village, with me and Little J alone during the day and no one nearby to help; we were left with no statutory services whatsoever.  

We were powerless.  Again.  Repeated requests for a social worker were denied.  Emergency requests made by paramedics were ignored.  Everyone kept staring at me perplexed as I banged on about housing and employment, not understanding that without those key things in place, no matter where we were headed, we could not provide the basics for our son.  We were powerless. 

Then finally, support came from an unexpected source following a conversation with a doctor.  It was the phrase I was dreading.  It’s the opening line you don't want from a Consultant.

‘Do you want to have this conversation over the phone?’

Oh. Right. That’s never good. I answered with the only answer I had.

‘I have no choice.’

Because I didn’t.  I could not safely drive my son the 20 minutes to the hospital and there was no public transport option.  I could not keep one eye on a major motorway and one on his airways.  I could not risk ending up on the hard shoulder with an unresponsive two year old in my arms. I was powerless to even control how I received information.

And it was a conversation that was hard.  In fairness to the doctor, it was framed well and fully explained.  It was about who could actually viably help us.  Who could step in and be a presence with a declining child and no answers.  It ended with a referral to the children’s hospice service.

If I said I took it well, I would be lying.  Which was fairly stupid on my part.  I have been around enough medically complex families to not stereotype the role of hospice support. But the word still holds connotations that are inescapable.

In fact, it was the turning point.  With the excellent support of the hospice nurse, we began to feel more confident.  And everything else began to fall into place.   Our assessment for Continuing Care came around and we finally qualified, meaning support from nurses over school holidays. And most amazingly….Little J started to improve.  A shot in the dark medication change paid off.  Our neurologist did it, again.  With no diagnosis and no clarification on what she was treating (paralysis attacks are the working theory), she managed to halt a potentially catastrophic downturn and get our little boy back.  We were once again reminded how incredibly lucky we are.  Things may not always run smoothly in the hospital system, but without the NHS and the input of a top professional, I don’t even want to think where we would be. The attacks are not completely gone.  He has around ten a day, but they are short lived and do not frighten or distress him.  And importantly, the regression is over.  He has almost regained all the skills that he lost and in recent weeks has even stunned us with some new ones.

The crisis is over.  In fact it was over months ago.  So why did I give up.  Why go so quiet?  Perhaps as a chance to absorb it.  Acknowledge the change.  Take in the fact that our team of a few is now a team of many.

But also, it was an underlying frustration and a confusion over how to voice it.  Because on the one hand, I am so grateful to that team.  So pleased they are here.  But on the other hand, I am frustrated that it took crisis point to get there.  That all the predictions we made right from the start about Little J’s wider health, social and educational needs have come true.  We knew from day one he needed a specialist school setting – it took crisis point to get him there.  We warned that things could downturn suddenly without a diagnosis and that the way we were being assessed for nursing support was not fit for purpose – it took crisis point to get it.  We have been fighting to move house for over two years, recognising that without some childcare, I cannot work at all and we cannot move, trapping us in unadapted housing – it took crisis point to get it.  And in fact, crisis point highlighted it even more.  You see, agency nurses are not allowed to lift Little J.  At a mere 13kg, they have to hoist him and cannot take him upstairs.  Only….we don’t have hoists.  Because we are unadapted and mobile hoists do not work in the space.  For six months we were embroiled in what we lovingly called ‘hoistgate’.  I won’t bore you with details, but it’s been utterly ridiculous and a perfect representation of why holistic support from day one matters.

And holistic support does matter.  Multi agency support matters.  Because it all ties together.  Health and social care have to work in tandem. It should be seemless, rather than ping ponging families between the two.  And I don’t mean sitting in on a few of each other’s meetings and declaring it ‘collaboration’.  Support has to be integrated and it has to be forward looking.  Health care professionals need to understand the social care system, because it has a fundamental effect upon the patients that they work with every day.  Social care professionals need to recognise that chronic ‘health care needs’ will always constitute some degree of social need. There needs to be an understanding that work, housing and education are not secondary, it is all integral to the life of the patient and their family.  Because no matter what the medical condition or how serious the outlook, even at the worst of times; a person is LIVING WITH a chronic condition. 

Its a close call on who's the biggest mystery..
In our case, things are now looking very positive.  Little J is very stable and doctors are talking about the future with more smiles and less concern.  Our work and housing situation is finally reaching resolution.  We are all set to move to an adaptable property and only now do I realise how much pressure that need to move was placing on us.  Very soon, we will be in a position where our lives will be patched back together on all fronts (she says….right as we are about to move both NHS area and local authority…we’ll just brush past that part).  And no, we still don’t know what Little Js future holds.  And yes, he is profoundly disabled.  But, with the right support in place and the ability to help ourselves, we are no longer powerless.  Despite all of the medical challenges, our lives are very happy. Genuinely happy. That is why holistic support matters.

So, this spring I am taking some tips from the frogs (coming out of hibernation – not hanging out round wheelie bins). I am emerging from my hibernation as we head into a new phase, a new time, where I hope we can continue to enjoy all of the wonderful things about our funny, loving and amazing little boy; whilst maintaining control over our own lives and our own destiny.  I am de-hibernating (word?  Yeah, I reckon so).  And I’m doing so because sitting quietly and enjoying our own personal outcome isn’t really an option.  Because whilst I may have lost faith in how much parent voices are heard, if we all hibernate, positive change will never happen. If we don’t feed back and share our stories, service provision cannot adapt and recognise fundamental gaps.  If we don’t tell people, gently, constructively, where we have been let down, budgets will almost certainly continue to be squeezed even tighter in these areas (yeah, there’s nothing people love more than unsolicited feedback.  I’m super popular.)  We may not be policy makers or political commenters, or even be party to all the information that has led us to where we are.  But parent stories have to matter, because they are the only way to fully understand the impact of statutory services.  And that has to mean something to somebody.  Because whilst I may jump when one frog scuttles, more than one and you'll really see me move.

Because despite the challenges, I still fundamentally believe that together, we are powerful.