#notanurse_but

We (royal use of ‘we’, I mean you because i’m already doing my bit) need to make a noise about Wellchild’s Parent led campaign #notanurse_but.

I won’t give a stack of ‘this is why’ reasons.  However, I’ll tell you about my families week this week in terms of providing medical care to Isaac.  For anyone who hasn’t endured read  my blog before, Isaac is my 5 yr old superhero son who has quadriplegic cerebral palsy, a tracheostomy and a gastrostomy.

So far this week since Sunday we (another royal use, but it’s me, Lynsey my wife and his absolutely brill key worker at school) have

  • Made up 14 neocate elemental feeds.  14 times measuring 350ml of water, putting Neocate powder in, adding fibre powder and shaking.  And shaking.  And shaking a bit more.  Honestly, if Tom Cruise had seen how I can shake a protein shake shaker at 6.15 in the morning he would have played his role in Cocktail totally differently.
  • Measured 1ml of glycopyrronium bromide into a 1ml syringe 14 times
  • Measured 2.5ml of gaviscon into a 5ml syringe 5ml syringe 14 times
  • Measured 6ml of trihexyphenidyl into a 10ml syringe 11 times.
  • Measured 7.5ml of baclofen into a 10ml syringe 11 times.
  • Drawn up 60ml of water into a 60ml syringe 30 times
  • Suctioned Isaac’s trachy in the region of about 30 times
  • Changed the water in the internal balloon part of Isaac’s Mic-Key button once cos it was leaking (plumbers warranty has expired)
  • Changed Isaac’s tracheostomy tube once.
  • Changed Isaac about 25 times
  • Ordered more baclofen from GP.
  • Submitted an order for syringes, bottle stoppers and syringe caps to community medical equipment coordinator.
  • Taken Isaac to Alder Hey for a sleep deprived EEG (he had to lose 8 hours sleep over previous 2 days poor little fella)
  • Taken Isaac to Chorley Hospital for Ophthalmology appointment.
  • Taken Isaac to school 4 times (courtesy of ‘gran taxi’, from my fab mother in law who has to get to our house for 7.30 mon-fri as both Lynsey and I have to be out for work).

Also we’ve got Isaac’s twin brother and his ten yr old big brother.  Their feeding regime is far less complicated and usually just involves negotiating that chocolate is not an alternative to protein and then just putting something in the oven that they may eat / may spend an hour staring at / may smother in tomato ketchup so it only tastes of ketchup / may try and hide so they can convince us it’s time for dessert.

So, as i’ve said previously, having 3 boys under 11 was always going to make our home something like a mixture of a David Attenborough documentary about marmoset monkeys and the scenes of devastation seen in War of the Worlds (I don’t have a Tom Cruise fixation by the way its just the first film that came to mind, Mr Freud). As parents, we never expected an easy gig.  For Isaac’s twin bro and big bro, they were born into this chaos and have had to learn to swim in it, which they do brilliantly.  They also know what every syringe size looks like so they can get them for us (just prepping them for summer jobs at Argos as they get older) and big bro can do enteral feeds – he requested to learn.

Why tell you all this, well because #notanurse_but is why.  The campaign is about opening the closed doors to the outside world to show what medical care etc families are providing ‘in house’ that they get little support with.  There’s thousands of families doing pretty much what we do with their own ‘Isaac’s’ and more.  We do it for love (crickey that sounds contrived)….well we do it because we can’t not do it.  In the same way when your child toddles through to your bedroom at 3am and says that they’re having a bad dream you maybe don’t put them back in bed and settle them thinking ‘I’m doing this for love’.  You maybe think ‘if I do this they’ll shut up and I can go back to bed’.  You maybe think ‘well i’m responsible, it’s my role’ or more likely you don’t even think ANYTHING at all, you just do it.  You love them, you do what comes with it.  It’s just the same with Isaac.

When Isaac was 8 weeks old he had an emergency tracheostomy.  The nurses said ‘you’ll need trachy training’ like it was harder than Quantum Mechanics and produced a portfolio for each of us that we had to work through.  That was our welcome to the world of being the nurse.  I’m not complaining, we just did it.  Did it, realised it’s a lot more simple than Quantum Mechanics and carried on doing it.  Day in, day out, year in, year out.  Just a ‘something that we do’.  Similarly, 5 months on from that and it was Mic-Key button training.

What I want for my family is not sympathy.  A useless emotion that won’t make an ounce of difference.  What we want is empathy ; just an understanding of what goes on.  Once there’s that empathy then when I say to a friend ‘i’ve had a terrible morning’ before work then they know what sort of things that may entail for me and my family.  In the same way that if they say they’ve had a terrible morning I’ve some understanding of what that may be for them.  From that understanding I can try and help, and vice versa.

Isaac is at the middle of a right old tangle of professionals, and I reckon if I did a straw poll then not many would be able to score more than 5 out of 15 on the list I put at the start of this blog as to what we have done this week.  That’s why #notanurse_but is needed too – to highlight to the people that SHOULD know that they don’t really know.  Not that they don’t care, they just work with resilient families who don’t open the curtains to the amount of things they’re doing.  So through the campaign, we may be able to increase that awareness, increase the empathy and insight that professionals have.

I’ve said before in these blogs that campaigns come and go ; some get easily forgotten or just ask for money, or time.  #notanurse_but is none of those campaigns. We’re asking parents like me to think about their situation, their needs and what support would help – and to go on the #notanurse_but webpage to perhaps share their story.  Everyone else who isn’t in that position, all we’re asking for is a bit of head space…just think about people you know in our position.  You don’t need to show up with cakes (well, go on then…), you just need to think about it next time you’re meeting a family like mine so you have some understanding of the ‘behind closed doors’ life of that family and what it means to them, and perhaps how you can ease that pressure through talking about it.#n

Consent, and the assumed yes.

Isaac has gone through a lot, all of it with the consent and agreement by us as parents.

If memory serves me right, the first ‘consent form’ we signed was when his ENT surgeon came out of theatre and asked if we would consent to him undertaking a tracheostomy when he was 8 weeks old. Isaac had needed emergency resuscitation 3 times before this, including about an hour prior to this. Of course we consented, it was consent to safeguard his life.

Moving from then there’s been a flurry of consent forms for surgery (around 15 at least) including ones that have consented to him having all his food through a PEG feed for the last 5 years, consenting to him having botox injected in just about every painful place you could put botox, and consent to him having his saliva glands clipped (the thought of which makes me wince, let alone how it must be for him). We’ve consented to an infinitesimal number of medication changes – some of which have brought horrible side effects -, to dye being injected into him for brain scans, to him having to have a ph monitor placed into his oesophagus for a 24 hour period, to him having an elemental diet which in effect means that food has no meaning to him.

We’ve consented to an endless train of devices and equipment, standing frames, head rests, arm rests, foot plates, head ‘pods’, neck braces, AFO’s for his feet, splints for his arms, thumb braces and a ‘sleep system’ which holds his posture with his legs apart as he sleeps.

All we can do IS consent. In doing so we hope that the people asking for that consent know more than we do, and knowing that despite the discomfort and pain it may cause Isaac in the short term it will give positive outcomes medium term.

It is fine to be a mum or dad and do your parental duty to do things that are ‘for their own good’ for your kids we all expect that as parents. We expect there to be occasions , even with a child who has not got any disability, occasions where they have to go through some discomfort and pain – vaccinations, dental procedures etc – and that whilst it’s bloody horrible to be the parent trying to comfort the recently vaccinated 1 yr old it’s par for the course. It will always sit there in your mind as a ‘not particularly happy’ memory of when you knowingly did something ‘for their own good’ that they really didn’t want to happen.

With Isaac we have done this DOZENS of times. Consent, agree, bow down to ‘better informed’ people.

On the dozens of occasions where we have had to do something ‘to’ Isaac, or allow someone else to do something to him, we have always had to think in the bigger picture terms. We carry a lot of responsibility – a of a lot of either convincing of ourselves that ‘long term he wont mind’ or a hell of a lot of ‘we’ll put aside the fact he’s going to be unhappy, for long term positives’. The guilt that creates, over years, on me is weighty.

When he was little, a lot of the procedures, surgeries were life saving or life extending. They were not so much us having to make assessments of whether it would provide a ‘better quality of life’ for him. I am no more qualified to assert what Isaac’s quality of life now, or in the future, is or may be than anyone reading this is so I struggle with the concept. Isaac knows his quality of life, but as he’s been silent since birth and is only now just starting to unlock the padlocks on his communication that cerebral palsy has placed upon him, it’s only over the coming years that we’ll know what the little voice inside is saying.

So, yesterday Isaac went for his latest wrist splints. The process around them being molded, fitted etc has taken a long time but that’s another tale. Anyhow, he’s got these splints. They’re huge.

Isaac AFOss

 

They’re cumbersome and for a little boy whose arm movement is already very impaired, they must feel like blocks of concrete. ‘He should wear them 8 hours out of every 24 hrs to prevent (further) contractures of his wrists and hands’ we’re told.  So that would be overnight then, as he won’t be able to wear them at school as it will massively impact on how he can play or interact with his Big Mack switch. Wearing them overnight will be uncomfortable – imagine it yourself- and, in effect because he’s in a narrow cot bed will prevent him moving his arms.

So, I think what i’m coming to is the point where you start to think “is it worth it?”.  Is the medium  / long term benefit worth the obvious discomfort and annoyance that these wrist splints will possibly bring.  And I use the word possibly with purpose.  Because much as there is a medical model and rationale for having them ; i.e. it will stop contractures, the end point for Isaac HAS to be that he can then use his wrists and arms purposefully, or at least more purposefully than he would if he’d never worn the splints.  Can that be guaranteed, when the reason Isaac has the development of contractures is his neuromuscular disability – no.  Can we sit here in 5 years time and say ‘oh well he’s worn the splints 8 hours per day for 5 years and he’s in a better position now than it he hadn’t worn them’ – no doubt we will and his OT and physio will because THATS WHAT WE ALL WANT TO THINK.  What does Isaac want and think? Nobody knows.

I’m sorry because I think this blog is a borne of frustration to a point and you might think i’m ranting a bit, but where it’s coming from within me is that I need to be at peace with why we put Isaac through things. The older he gets, the more the list of ‘things’ grows. Splints, mouldings, standing frames, injections.

The ‘be a good parent’ shaming if you kick back and say no to professionals is the result of them feeling that you’re challenging them by saying no.  For 4 years we’ve been being asked by one of Isaac’s team of professionals to have a manual handling assessment for when we lift and carry Isaac.  I’ve tried saying ‘no point, there’s nothing we can do except lift and handle Isaac as we currently do’ or ‘you know what, no thanks, we’re good as we are’ but no, there is a checklist somewhere with ‘do a moving and handling assessment’ on it and woe betide the professional that doesn’t get it done when it comes to audit time.  It perhaps says something like the family ‘won’t engage’ with assessment in their case notes, or if it gives a full explanation (i.e. print off this blog!) then i’d be amazed.  Not engaging with an offer of support…….why would any sane person do such a thing……?

Its not that we don’t want support, we just want that little modicum of control of when we get it and to get asked if it’s right for us, for Isaac.  If we as parents struggle to get our consent recorded without it being a ‘non-engagement with services’ then how can a silent little boy, vulnerable to everyone, be expected to. Consent, I thought I knew what it meant, but now the more I think about it the muddier the water is, especially when i’m giving it for someone else.

 

 

 

Running scared from the black dog

‘There’s always someone worse off’, yes there is.  ‘Give yourself a kick up the arse’, yes done that.  ‘You’ve nothing to be depressed about’ – if only it worked like that.

What i’ve found is that depression is an illness that doesn’t pick its times of effect by following a well considered thought process.  If it did, then it wouldn’t exist.  What it does do is land as an empty, hollow, worthless feeling sitting in your heart and mind when you least want it. Like you’d ever want it…but you know what I mean.

I’ve spent 3 years always trying to keep my bum out of the jaws of the black dog of depression as it chases after me. When it bites it spreads a cloud of desperation.  Utter loss of self worth and desperate feelings that, some mornings, you wake with a dread of facing another day.

Depression scares me.  I’m more scared of depression than I am of spiders, and that’s going some.  At times over the last couple of weeks i’ve felt, for no reason I can exactly pin down (i.e. there’s no one single cause) that I am worthless to the extent that the world would be better without me.  That’s when the dog bites.  The running away from it is tiring, a constant effort and motivated as much by fear as it is by a love of my family, kids, job and the times when i’m not being bitten.

I wish it was as simple as ‘i’m depressed, and here’s the reason’.  If it was then, well, all that well meaning CBT bollocks I know so well would equip me to replace the automatic thought with a controlled one and, abracadabra there’d be no empty, horrible feeling.  I do know it’s a combination of things that weigh me down, slowing my escape from the black dog.  Carrying bags and bags and bags – a bag called Isaac’s house adaptations, a bag called Isaac’s – at times bobbins – SEND system support, a bag called work, it goes on.  I’m not egotistical enough to think that we don’t ALL carry loads of bags.  But I suppose the fact that the black dog of depression has bitten me hard before makes me push and push and push and not admit when it’s all getting too much.

There’s nothing good about depression.  It’s beyond crap and life affecting.  I’m lucky that the last couple of weeks a couple of friends have reached out and allowed me to unload some of the crap from the bags – even if it just meant unloading it and then picking it up again, the relief from the temporary change of putting it aside was massive.

Weirdly, having been fed resilience theory (and facilitating training it!), I know what emotional intelligence and self talk are.  Can I apply them to myself? If I could then I wouldn’t have spent time feeling utterly empty over the last fortnight.

One thing that I do understand about depression is that if you’ve never experienced it’s brilliant sense of timing and crushing debilitation then you’ll believe the media.  ‘Blue  Monday’ was last Monday ; the day when the whole country was apparently at most risk of feeling blue….does the media say  ‘it’s blue Monday and here’s a few things you can do to help other people who may be feeling horrible today if you’re feeling ok’? No, it’s almost a ‘if they’re feeling down today then it’s only because it’s after Christmas and January’.  Unhelpful to the extent of making people who feel terrible with depression shut down further.

Anyhow, my bum is back out of the black dog’s jaws at the moment, and i’m running (well, as best I can with a torn knee cartilage which will at least grant me an hours sleep under general anaesthetic in the next month or so).  I’m terrified of it biting, but hopefully I can build enough distance between me and the jaws I’ll ride the setbacks easier.

Positively swimming…

How ok is it to moan? I was told last week that I’m ‘so positive despite everything’. Great, I hope that’s how it appears, because for 5 years I’ve been trying hard to not look like I’m beaten down. I laugh, joke, keep busy and keep going.

The point is, positivity is not a given. If anything, positivity is bloody hard work faced with the day in, day out crap that goes with being unable to solve the problems that Isaac faces.

Sometimes, like today, it feels bleak. To be told last Friday by his GP that one of his drugs (trihexyphenadyl in solution) is no longer commercially available, when he has about 4 days supply left causes me and Lynsey’s hearts to sink. Why? Because it’ll be up to us to start making calls to outreach nurses, paeds, neurology (so far) to try and get an answer to ‘so what next’? The GP says they can only get it special order ie made up to order rather than in a pre produced commercial format and they’re clearly reluctant to do that. Why? I couldn’t possibly say.

So, Lynsey has spent today chasing ANYONE for an answer. All the time the clock is ticking. If it’s a special order item it will take 24 hours to order in, at least. But there’s no connection between GP giving a ‘no can do’ and the neurologist who originally prescribed it. It’s left to us to solve. For Isaac.

Ok there’s a lot of stuff I think fall into our ‘mum and dad’ jobs us immersing ourselves into medicines planning between acute trust, GP and CCG and expenditure on special order items is’nt really in our skill sets. Let me stick to making paper aeroplanes and Lynsey to decorating the xmas tree with the help of a rather over excited 5 yr old and 10 yr old.

So, it’s that old communication chestnut again at play. I don’t mind that it’s not flawless – I’ve spent 3 years talking to lots of people who have had to sit and listen to me rabbit on about how to get it better in a 6Cs’y way and how, when communication goes well, it’s produced some outstanding results for Isaac. I know it’ll never be perfect when there’s so many people involved in the network around Isaac. But, without using expletives it’s difficult to convey how annoying it is when it totally falls over like it has on this one little medicine issue and we, as mum and dad, are left to sort it out. It shouldn’t happen, surely?

You might think ‘come on Rick, it’s only a prescription’ but it’s a bit like when Michael Douglas gets told he’s missed the breakfast menu by three minutes in Falling Down ; it’s another little straw breaking and you never know which one will cause you to spiral. I mean spiral as in thinking ‘what is the point of trying’. It’s a grind. We’ve had dozens of these types of things, from having to argue to get a sun canopy / rain cover for Isaacs specialist buggy, to arguing for him to get an SLT feeding provision when he had his PEG fitted and there was no follow up service commissioned, to having to argue about Isaac’s EHCP provision. Everything is an argument.

Proving that Isaac needs things, in a way that makes you feel like you’re audacious to ask. Giving Isaac a voice in decisions where people are happy to do ‘to’ and not ‘with’. Never a month goes by without something. 18 months up to this point to get house adaptations underway so Isaac can have a bedroom and move out of our bedroom for the first time in 5 years. Honestly, I could write a book of the problems, challenges and arguments but you’d be bored and I’d just be banging my head on the table.

So…positivity, yeah, I try. To be negative all the time would feed the black dog of depression that lies within me, and that I’m terrified of coming out. I need to keep my chin(s) up. But please, please don’t think I’m some kind of weird anomaly – there’s hundreds, thousands of parents of children with complex needs who are having to do this day in day out just to function. It’s not so much choice, as necessity.

Sometimes I sit here and think ‘b*llocks to it’ but then, well, tomorrow’s another day. It’ll bring with it a load more crap but nothing compared to what we, collectively as a family (and I mean that, me, lynsey and all three boys) have not already conquered previously.

As Dory in Finding Nemo sang ‘just keep swimming, just keep swimming…..’

 

 

 

The biggest game of hide and seek in the UK

 

Carers – we can be like ninja’s ; ruthlessly efficient where it comes to tasks relating to our cared for, committed despite enduring testing and difficult circumstances and pretty much undetectable.  There, the similarity between me and a ninja ends – if you’ve met me you’ll know I can’t do anything undetected, bit too big.

But what I’m getting at is that we don’t have a jester suit saying ‘carer’, we don’t have a t-shirt even, not even a hanky with it on, nothing.  Even if someone handed me a t-shirt with ‘carer’ on the front would I wear it? Probably not, I can’t wear that for the day job so it’s no use to me, it’d show ‘i’m vulnerable’. Good luck spotting me then.

Do I need to be spotted as being a carer?  If you ask me, I’d probably have  said not around 5 years ago.  I would’ve said no thanks, I can handle it all myself thanks.

5 years ago tonight I would have been bedside at Royal Preston Hospital, as we had been for over 90 nights by that stage at Royal Manchester Children’s Hospital and Preston with a very poorly newborn Isaac.  He was about 4 weeks post tracheostomy at that stage.  I’d have had no idea what the following years held.  So I would have been a carer in the making, a future carer hiding in plain view, but not even thinking about me (or us, as in me and my wife) as it was, rightly, all about Isaac. I would have told anyone who may have suggested we need support to get lost.  Which, even if they had opened that conversation once, would have counted as a ‘would not engage’ in someones records.

Time went on, and as I’ve written on here before, I went under.  I was still hiding but by this stage I was hiding under a pile of caring.  I came into contact with my GP several times, but the connection between caring responsibilities and being depression was never something that the GP connected. Did I need to be spotted? Yes, at that stage I did.  Had someone said ‘you really need to realise that being in your position is bound to string you out’ I would have probably agreed.  I remained hidden.

So, where do services expect to find these elusive carers? There’s a lot of talk about early identification and prevention, I totally agree but in order to identify a carer you need the awareness to underpin the sharpness of your vision.  It’s the ‘you don’t know what you don’t know’ situation.  A hundred carers could be missed by just one pair of eyes in a key professional who knows that there ‘a strategy on carer identification’ but doesn’t know how to spot the glimpses of ‘carer’ coming through the camouflage of someone who has other presenting problems.

Ok you can build assessment tools to raise that acuity but i’ve yet to find, or use, a checklist that can replace some well grounded understanding and professional empathy around an issue.  So let’s not over simplify the issue by saying it’s possible to systemically solve – you may garner minds but you’ll not engage hearts or fire a passion to make things better, to spot the little things that will lead to engagement, to draw out the hidden ninja carers.

 

 

 

 

 

 

#Imnotanurse_but

The #imnotanurse_but hashtag today caught my attention, brilliant work by WellChild  to launch a campaign highlighting the medical care delivered by parents, siblings and families at home.

Now, confession time.  I’m not a nurse. But, my god can I fake it.  For 5 years my family has all been nurses for Isaac.

If I sit back and reflect on quite how much pharmaceutical knowledge i’ve developed over the years of us having Isaac I could possibly just decide to break bad and become Bryan Cranston.  In terms of medical knowledge I reckon I could blag more than most of the actors on Casualty. How have I learnt it….

Well, when Isaac spent the first three months of his life in NICU we were immediately introduced to the world of medical devices.  The little guy spent all his time looking like a badly organised shelf in Maplin, such was the array of electrical cabling he was linked to :

 

IMG_0037

It was a sudden immersion for us ; SATs monitors, NG feeds, doing ‘cares’, learning to pronounce ranitidine and domperidone, learning about CPAP, BIPAP, and more.  Much more.

Then, at 9 weeks old Isaac had a tracheostomy as an emergency procedure due to having vocal cord palsy (a symptom of what we now know of him having quadriplegic CP).  A trachy. A tube.  A ‘how-the-f-do-we-look-after-one-of-those’ trachy.  A ‘get-ready-for-the-world-of-suction-catheters’ trachy.

As i’ve said elsewhere on here, I remember a nurse telling us that we had to ‘do trachy’ training.  Like trachy training was going to be like this :

Thankfully, it wasn’t.  Because even though we’re not nurses, we learned it quick because our little guy couldn’t come home until we did.

Picture this.  It was about the 20th December 2010.  It was snowy.  We lived at the bottom of a steep hill.  We were housebound.  As Arcade Fire sang, it was a case of ‘No Cars Go’.  Isaac, along with his twinny Ethan were laying side by side on a floor mat.  Isaac, still NG fed, had his tube taped across his cheek.

Ethan flapped his arms about, as is a 3 month old’s want and with ninja precision managed to get his finger behind Isaac’s NG tube and before we could leap into action it was out, on the mat at the side of them.

Time stood still. The outreach nurse was coming next week to teach us about NG tubes, how to use the litmus strips, how to reinsert a tube.  It was feed time too.

The ‘just come back to Preston if you need us at all’ from the nurses as we took Isaac home a week earlier was now not just a memory but an impossibility.

So, google made me a nurse.  I googled ‘how to put an NG tube in’ and followed the instructions.  I’d not got rubber gloves, but I had litmus strips.  It was like something off Macgyver

Richard-Dean-Anderson-as-MacGyver

And, I did it.  Not that i’m a hero.  I’m not a nurse but. I’m a dad.  It needed doing.  I didn’t follow NICE guidelines but what I realised, even at that 1 week home stage is that a lot of the ‘nurse stuff’ that Lynsey and I have to do isn’t as per guidelines.  We do our best.

Suctioning? Yeah, trained with ‘put your gloves on’ put the catheter down once, back up then replace it with another catheter’. Course we do.  At 3am on the n’th time that night we grab our gloves, we go through 3 catheters to suction one bit of spluttery saliva and we then wash our hands before going back to bed.  Course we do. I’m not a nurse.

We measure out glycopyrronium, trihexaphenadyl, baclofen, gaviscon and omeprazole 4 times a day into enteral syringes. My 10 yr old and Isaac’s twin aren’t nurses but they can grab ‘two sixties, two tens, a five and a one’ (syringes) from a drawer in 10 seconds.  They know where ‘noses’ are kept, and can identify from how Isaac’s trachy sounds when he needs suction. We put hyoscine patches on, change Mic_key buttons, put AFO’s on, change trachys and do the plumbing of the syringe line like engineering experts.  But we’re not, we’re a family, we’re not nurses.

The thing is, the #imnotanurse_but campaign is brilliant at capturing the ‘you just get on with it’ bit of being a parent of a child with complex needs.  It’s not called #imnotanursesoIgiveup. Because you don’t.  Not because you can’t (a common misconception that parents like us see an ‘Isaac’ as a burden), but because you don’t want to give up.  You learn because the things you’re doing are often the things that bind the little amount of time you may have one on one with your child.

Life goes on.  We both have to work full time. Isaac’s brothers have to go to school.  Not being a nurse is a brilliant way of filling the in-between times, it would be great if just occasionally people got an insight and i’m glad there’s a campaign to highlight it.  Not for sympathy, but a bit of empathy, sometimes.

 

 

 

How complicated is it – inter trust communication…

Multi agency synchronisation.  Partnership working.  Working together.  Just three phrases that sit as the foundations for just about every aspirational policy position, project and service design throughout my career in the public sector.  Now we’re talking about integrated services. Riffs on a theme – that theme being ‘everybody row in the same direction’.  That’s row as in boats, not row as in what we do when we’re not rowing in the same direction.

I’m a long time into working in the health and social care field, and the fact that  the ‘working together’ agenda keeps being altered and tweaked can make it feel like collectively we are playing the role of Sisyphus, but that instead of a boulder we’re pushing blancmange.  Every time we make progress the problem of communication systems between agencies, the problem morphs into a different shape.  Sort out the I.T systems, it’ll then be information sharing problems.  Sort out the info sharing problems and it’ll be thresholds for services being different, and so on.  But, and it’s a big but, should we get jaded? Partnership working should be seen as a constantly evolving, iterative learning experience where there aren’t ‘failures’ but genuine opportunities to improve. Or as a learning blancmange…or something.

Isaac’s healthcare transcends 5 trusts, a CCG and around 14 professionals, minimum.  Each of these 5 trusts will have a nuanced idea of what ‘perfect communication’ looks like within it’s trust.  Ideally the directorates, teams, and services in each trust are like a well oiled machine ; clinical and non-clinical services chugging along in perfect synchronicity. Ideally.  And I’m sure it happens like that….how could it not…?!

Right, so 5 trusts with perfect internal comms that means, for example, that when Isaac goes to the acute trust (trust 1) outpatients department for orthopaedics review on his hips then the Ortho knows exactly what his blood results were from when he was in A+E the week before. That’s if there’s good comms in one of the 5.  Achievable? Occasionally in our experience.

Lets go from one to two trusts…or a trust and the GP…then when Isaac attends Ortho outpatients at the acute trust they’ll know not just the blood results but also what antibiotics the GP has given him for the chest infection that is affecting him to the extent he’s breathless and giving you dirty looks when you’re examining him.  Achievable? Seems to depend on timescales but not something out of the realm of possibilities.

Once we get to three trusts and beyond we’re approaching a level of integration and comms that is beyond imagination.  For Isaac to go to the acute trust for his orthopaedic outpatient appointment, them know about his chest infection, know about his antibiotics, know about the orthotic splints that he wears several hours a day but we’ve taken off him for the ortho appointment (orthotics trust number 2), know about the problems with balancing the dosages of trihexaphenadyl and baclofen that affect his muscle tone (neurology, trust number 3) , know about the positional problems that OT, Physio and wheelchair services are helping with (trusts  2 and 4) and know how his positioning affects his breathing (ENT, trust 5) is just ridiculously ambitious.  So that’s what Isaac is up against.  Five trusts, each knowing 20% of his healthcare needs, maybe 30% if we as parents fill gaps in info during consultations and pass on what’s happened elsewhere.

So for Isaac full service integration and partnership sounds really grand but lets just sort the small stuff first.  Hopefully the Vanguard sites will highlight this sort of problem and create clearer communication systems, but first, I hope they get an understanding of what it is really like for Isaac. Some empathy about the unnecessary appointment clashes because of lack of alignment of appointment bookings, hours spent in a car seat going to visit different clinics all across the North West, weeks of delays when trust 1,2,3, 4 or 5 need to refer something to each other and then agree who is doing what.  It’s a mess.  Why get the empathy in place first? Because when designing systems it would help to see it through the person’s eyes who you’re doing it for (NB not doing it ‘to’).

That all said, there are several professionals involved in Isaac’s care who know, realise and empathise with the mess it can be in and they act as the gel and glue between the disjointed pieces.  Phone calls, emails, exchanges of info all done by people who know what they can improve for Isaac rather than systemic responses.  Isaac’s physio at trust 2 who contacts trust 3 and speaks with the physio at trust 3 about Isaac’s muscle tone and relays info before we take him for clinic appointment – because if all you examined was Isaac’s muscle tone after sitting in a car for an hour you’d be totally misled, and so on.  The outreach nurses at trust 4 who have spoken to trust 3 neuro nurses and contact Isaac’s GP by phone to explain medication regime changes rather than waiting for the letter to go from trust 3 to GP.  I know it won’t come as news to anyone that people make communication systems, systems don’t make people communicate.

So, in the end, working together for Isaac takes an individual AND collective commitment.  Let’s continue to strive for systems that make people communicate – it’s the long fight, but in the interim lets make it people led, at every level.

When does caring become Caring?

Sounds like a riddle, I apologise for that but there is a difference.

The thing is, there is an difference to me between caring and Caring. And it’s not just hitting the shift key before ‘c’. Its about the whole label of being a carer, or Carer.

You see, to my three boys they reckon i’m an idiot  just dad.  I’m not a carer, or indeed a Carer. I’m just him who makes breakfast, him who takes us to nursery or school, him who intervenes when we’re fighting, him who does the stuff dads do.  To my wife, Lynsey i’m no more a carer in her eyes than she is in mine. I’m a dad, a husband. Not even a carer with a little ‘c’.

Then there’s times when I realise i’m actually a carer, little ‘c’.

  • When my head is like a filing cabinet that has fallen over and i’m balancing organising the whole circus of professionals that surround Isaac, remembering to make his meds up, battling to get the resources that he needs (note ; not the resources he ‘wants’ – this is a crucial thing about us parents with children with disabilities, its about battling for needs not wants), working Mon – Fri on the ‘day job’, getting Jake to rugby and football and so on.  There’s the occasional moment where you sit there and think ‘ this isn’t ‘dad-dom’ this is ‘carer-dom’ because without Isaac having disabilities I’d only be carrying about half as much in my head at any given time.  Thats me being a carer, small ‘c’.
  • When my chin goes down and I convince myself that the world is a dark place with threats in every alley and that there’s a fight for every threat real or imagined.  That’s not the true me, thats the effect of the depression that the massive overload of everything else has caused me to experience sometimes.  How do I know that? Because I never felt that until 5 yrs ago.  That’s the effect of caring, small ‘c’.

So caring is basically a synonym for my life, as much as being a dad or husband is.  I know no other life – I don’t long for a ‘B.C’ (before caring) life because that would be to in some way wish to paint Isaac out.

With a big ‘C’ Caring is a whole lot different.  When people talk about ‘Carers’ it can be almost like if you put a lot of little ‘c’ carers together they become ‘Carers’.  We’re a homogenous group when we come together in some people’s eyes. We’re thankfully decades on from people talking about ‘the disabled’ as a group but sometimes when you look at the media there is presentation that ‘Carers’ are this same sort of subgroup.

Without doubt if you put a group of Carer’s together then I’d guess there’s some baseline similarities :

  • Exhaustion – physical, emotional, mental, whichever.  I don’t honestly think that any carer wakes each day 100% refreshed and with every aspect of their resilience recharged ready for another day.
  • Difficult experiences with agencies involved with the person they care for – I say ‘difficult’ because profanity wouldn’t be diplomatic.
  • Commitment – you can’t be a half baked carer.  You are or you are not.  ‘I’m a bit of a carer for my son’ – you’ll never hear that. The carers with a little c are the people who give everything.  ‘Effort is between you and you’ as Ray Lewis said and the effort required to give what you need for the person you care for is something nobody else aside from that person will see or care less about.

But that’s just my view.  I’ve sat in rooms full of carers at Carers events and aside from those baselines i’ve guessed at there’s not much else defines us.

Parent carers, sibling carers, husbands caring for wives or vice versa, young carers- all those sub group labels contain tens of thousands of stories and real people.  Go further and it may be carers dealing with dementia, a relative or partner’s mental health, a child caring for a parent who can’t face the world without a drink.   For policy makers and media I understand you need to rationalise the chaos of our carer lives and you want to categorise, file, organise.  The one plea I have is realise that when you say Carers you realise that there’s millions of individual stories in there, people who most of the time don’t realise they are even carers with a little ‘c’ because it’s their life.  Use grouping carefully and usefully to effect change for carers, as much as for Carers.

Im a carer who’s job made me get over any anxiety of talking in front of groups and with a passion to help other carers (blokes especially) realise that it’s ok to talk about being a carer. I’ve spent a lot of time this last few months being a Carer Champion (or other such titles depending on where i’ve spoken) and it worries me that when I tell my families story that people think I am a Carer not a carer. I talk because I want to cause people to think about other carers.  I want male carers to be reassured that the sky doesn’t fall in if you admit you’re struggling and you need help.

This week there’s going to be clips of my dulcet Boltonian accent going out on Radio 2 at different points as part of Carers Week.  My main hope is simple ; that one bloke who is a carer (not ‘Male Carers’ – too big a label….) may hear it and get help before he goes under like I did with depression.  One person. One little ‘c’ carer.  If us Carers can all benefit by proxy then beltin’ as we say up here nr Wigan, but really, one person at a time is fine with me.

A Pebblelife story – carers week countdown

It’s a week until Carers Week 2015….so over the coming days i’ll be sitting back thinking a bit and wittering on about carer life in all the aspects I know it in. As one of my heroes Ferris Bueller said of life  ‘Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it’. And don’t tell me Ferris Bueller wasn’t a real person because to me and my friends growing up he was a legend.

Anyhow, I’ll start this week by telling you a tale of three little Pebbles.  Little Pebble With A Big Splash, Twinnie Pebble and 4 Year old Ex-Pebble.

Little Pebble With A Big Splash landed with a plop in a pool nearly 5 years ago on a Friday afternoon, and about 20 seconds later Twinnie Pebble plopped in too.  Before that Friday afternoon there was only 1 other person in the pool, a 4 Yr Old Ex Pebble (a veteran of the Pebble stage) who was happily playing around.

When the Little Pebble W.A.B.S landed it was a pebble nobody was ready for.  He really was an amazing little pebble, beautiful, shiny and spectacular inside but not everyone could see it straight away – only people that wanted to look past the broken edges on the Little Pebble with a Big Splash.

Little Pebble W.A.B.S  spent 3 months in hospital being shined up, having operations, looking beautiful but with people saying he wasn’t the pebble they expected because he had something called Cerebral Palsy. Doctors said a lot of hard to hear things about Little Pebble W.A.B.S, they didn’t know that he was a determined little pebble, a lot bigger inside than he was on the outside.

The big splash that Little Pebble with a Big Splash caused meant that when Twinnie Pebble plopped in about 20 seconds later he got washed to the side of the pool a bit- he had landed in wavy water. Twinnie Pebble was just as tough as Little Pebble with a Big Splash – but he didn’t have something  called Cerebral Palsy.  Twinnie Pebble showed the world from Day one that he meant business, he was all kinds of tough.

Meanwhile there was the 4 yr old Ex Pebble in the pool.  He’d been a pebble – he knew how being a pebble worked ; people came and looked at your shininess, you smiled, they smiled, you looked cute and they were easily impressed, you got toys and everything was brilliant, being an only pebble. He’d mastered being a pebble so well he was on the cusp of being a stone – he started school the day before Little Pebble with a Big Splash and Twinnie Pebble landed.  On that Friday afternoon he’d been playing in the pool and suddenly a wave hit him and sunk him – he had to splutter and scramble to the side of the pool and get his breath back.  Ex Pebble wondered what the heck was going on.

So, Little Pebble with a Big Splash continued to get shinier in hospital, proving to people that there was a lot more behind the broken edges and that his sheen would come through given a bit more time.  Twinnie Pebble continued to do the pebble routine he learnt from the Ex Pebble ; look cute, get bigger and you’ll be a stone in no time.  Over the first 2 or 3 years Twinnie Pebble didn’t really notice that he was different at all from the Little Pebble with the Big Splash – he just saw him as his twin pebble. There was nothing going to change that, because pebbles that land on the same day know things that nobody else knows about each other it’s #pebblelife, a bit like #thuglife but for pebbles.

The 4 yr old ex Pebble played along, he spat the water out after getting to the side and carried on playing about in the water that now always seemed to be ebbing and flowing in waves.  He kept swimming (yes, a swimming pebble, they do exist) but it was hard work. Sometimes the current just meant that no matter what he did he couldn’t go forward, other times he could ride the ripple for a bit.  He even tried going back to being a little pebble sometimes but it just wasn’t the same.

This ebbing, flowing and rippling went on for 4 more years for Twinnie Pebble and the Ex Pebble.  Sometimes when they ripples went their way it was great ; they could play together with the Little Pebble with the Big Splash, they could go on holiday and they knew that mummy and daddy pebble were happy and it was a brilliant #pebblelife. There were weird bits of their pebble life that weren’t the same as everyone elses but it never bothered them.  Twinnie Pebble was learning to do all the things that little pebbles do , running, playing, talking and he started to realise that Little Pebble W.A.B.S couldn’t do that.  Twinnie Pebble used to say to mummy and daddy pebble that Little Pebble with a Big Splash was just not learning those things as quick as him because he was a baby – when actually Little Pebble with the Big Splash was 20 seconds older.  Ex Pebble got a lot of sudden changes of plan ; mummy pebble may say one day that daddy pebble would pick him up at school but then at home time Gran Pebble would be there not daddy pebble because daddy pebble had had to go to the hospital to meet mummy and the Little Pebble with a Big splash.  Ex Pebble didn’t understand it but it didn’t bother him, it must be normal, everyone must have a Little Pebble with A Big splash at home right? That must be how #pebblelife works?

Both Twinnie Pebble and Ex Pebble also had the days where swimming made no difference ; when there wasn’t time to talk to mummy or daddy because of Little Pebble W.A.B.S’s appointments or meetings.  When lots of people were coming in to see Little Pebble W.A.B.S they just got used to having to behave and stay out of the room ; sharing mum or dad with these strangers.  Having to keep things to themselves when they could see mum or dad were upset or bothered by things going on with Little Pebble with a Big Splash.  Ex Pebble hearing off other people about what they were doing that he couldn’t do because of the reality of everyone looking after Little Pebble W.A.B.S.  Twinnie Pebble heading off to a nursery different than Little Pebble W.A.B.S.

I don’t know how the story ends for Little Pebble with a Big Splash, for Twinnie Pebble or Ex Pebble.  There’s a lifetime in front of all three.  What all three pebbles need is for people to have some insight about what it was or is like for them being the pebbles in this story.  It’s not about ‘special treatment’ it is just that by having an awareness of the way that having the brilliant Little Pebble with a Big Splash as a brother, Twinnie and Ex Pebble will always be in the ripples of the splash for good or for bad.  The ripples can’t be stopped, but hopefully there will be more times of riding them than swimming against them.

I was a 35 year old stone (or 35 stone some may say…) by the time Little Pebble with a Big Splash and Twinnie Pebble plopped in.  I’d lived in the #pebblelife pool for a long time and yes there was ripples and waves but there were long, happy, mill pond periods where nothing much happened.  I could poddle about just being a pebble then a little stone and so on.  Yet I find the ripples and waves hard at times.  For a 4 yr old (now 9) and a twinnie pebble to handle it makes them officially heroes because they haven’t known much different and have always been riding waves. We try so hard to maintain normal #pebblelife but well, what’s that anyway? Football, rugby, Doc McStuffins on the TV for Twinnie, iCarly and Bella and the Bulldogs for Ex Pebble and we keep the wheel on. I’m beyond proud of them, I just wish occasionally the world saw their little pebbly legs paddling like hell to ride the waves and threw them a ‘float’ sometimes to help them for a while.

Big Cook, Little Cook.

Recently my 9 yr old Jake has developed a keen interest in helping out in the kitchen and has shown a burgeoning passion for cookery.  When I say a ‘passion for cookery’ I actually mean he has a passion specifically for chopping things but he’s getting very into it. I’m very aware that one dads use of the phrase ‘keen interest’ is another dads use of the phrase ‘he’s a precocious little bugger’ but lets give his enthusiasm the benefit of the doubt even if he does get under my feet more than my socks do. It got me thinking about how Jake got to this point of interest, and a spin down memory lane going back to the early 1980’s to mid 1990’s in Bolton…

My gran lived through two world wars, she was born in October 1914 after her dad had gone away to war and she only met him when she was four on his return from being a wheelwright in the Lancashire Artillery.  Any suggestion that my great-great grandad on hearing that my great grandad had put my great grandma in the ‘family way’ outside of wedlock and sent him off to be shot at by Germans whilst earning a living is broadly denied in the family even if entirely true.

Gran worked in the mills from being about 13, married my grandad a railway stores man, was widowed in her 50’s and until a couple of years before she passed away aged 93 she would still cook meat and three veg at least 3 times a week for herself and fish at least twice.  I never saw a ready-meal at my grans and all my memories of visiting her in her warden controlled flat when I was a child are of her always having a pan of something cooking.  Sometime she would cook ‘finny haddock’ and on those occasions the flat would smell like Billingsgate Fish Market for a period of days, perhaps weeks.

Gran would make pot boiled brisket (always on white baps, thick with butter and with home made pickled onion), beef stew with pot herbs, grilled melted cheese with an egg broken onto the top, potato hash with a suet crust and all sorts of other traditional lancashire home cooking.  Egg custard, pancakes, pies, jam suet sponge and more.  Gran didn’t see cooking as a hobby or something to do to relax as I do, it was just what you did.  One of Britain’s first ASDA supermarkets, ASDA in Astley Bridge, Bolton only opened when she was in her 50’s and was met with derision.  Today I can pick from 4 supermarkets within a 2 mile radius of my house and get excited when they stock a new kind of melon.  Grans generation had nothing but home cooking to survive on.

As a child I knew that Gran would only ever shop at either Marks and Spencer’s or Bolton Market for her food, and Greenhalgh’s for cakes. In her later years when my mum or I were shopping for her we realised that this wasn’t just gran shopping, this was M&S gran shopping.  My mum was pulled up for buying broccoli that was ‘too green’ and I was reminded by Gran when she was about 85 that if I was buying fish for her it should ‘look like it’s alive’ (hard when it was gutted and lying on ice).

Gran was a good cook, a good role model in many ways not least culinary.

So, how with half of Gran’s genes my mum turned out so bereft of culinary skill or interest would confound any geneticist or parenting expert.  My uncle once said to me that my mum could burn water.  Honestly, her cooking ability is the sort of thing that blues singers could make a career out of singing about.  They’d never run out of material so long as she kept feeding them.

You may read this and think ‘how can he be so cruel about his own mum’ but whilst my mum’s lack of culinary virtues is acute she has never suffered from delusions of grandeur. My mum just isn’t that interested in cooking. The school report wouldn’t be one of those sad ones where you see an ‘A’ for effort but a ‘D’ for attainment.  Cooking for me and her when I was growing up was undoubtedly a pain on top of working full time and stretching a single parent budget.  Ahhh, my mind and taste buds reminisce for my mum’s cooking; pork chops that I would still be chewing now 30 odd years later had I not just swallowed chunks whole, liver that could stop bullets, broth with barley giving it the consistency of emulsion paint. Growing up with just my mum’s cooking I probably ingested enough carbon that if I ever have a gall-stone it will actually be a diamond.

I don’t know what my dad is / was like as a cook seen as he buggered off when I was tiny – for all I know he may be an executive chef but I doubt it.  I doubt that many people who left school in the 60s and took a job as a coffin maker harboured dreams of Michelin stars.  Perhaps I’m wrong and he sits there in his retirement now making macaroons, champagne foams, clafoutis and artisan breads…I dunno but I really, really doubt it.

Anyhow, by some weird proof-that-parenting-has-bugger-all-to-do-with-it process I love cooking.  I love trying to make things and improving bit by bit until i’m happy with it.  Curries, breads, roasts, anything really.  No pretence or masterchef ambitions I just like it, a few hours in the kitchen is a bit of an oasis from the 100mph life outside the kitchen.  At least it was, until the offspring decided to taken an interest…now it’s ‘can I chop’, ‘can I stir that’, ‘I’ll do that’ from the 9 yr old sous chef.  My only ambition is to get him to adulthood with the same number of fingers he was born with, suffice to say his knife skills are a bit suspect as yet.

I keep thinking that the interest Jake shows will pass but no sign of it yet. His great gran would be proud, his gran absolutely effing astounded.