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.

Is it really time to talk?

I was really interested to read Andrew Fifita’s interview this morning  .  For those of you that aren’t Rugby League fans, Andrew Fifita is a huge name at international level, and his admissions about his battle with depression is probably akin to a top premiership footballer saying the same here in the UK.  Rugby League in New South Wales is as big as footy here, with a relentless media machine.

Andrew Fifita’s comments are so honest.  The sentence that hit home with me the hardest is where he says that he ‘felt that there was no joy to life’.  I’ve felt that way at times when the black dog of depression has got me, and to hear someone else say it makes me realise it’s not just me. I’ll never meet Andrew Fifita but to read the exact same feeling from him as I’ve felt 12,000 miles away is powerful.

The power of disclosure.  The power of giving a bit of yourself to help others.  It’s massive.  Stephen Fry, Clarke Carlisle, Alistair Campbell, a baldy dad of three boys from Chorley,  and now Andrew Fifita.  We all want the same thing by talking about depression we have experienced – for it to help others. We’re all blokes, we all know that blokes don’t talk. We all know blokes need to talk. Personally, my motivation is that I don’t want other blokes to realise how they feel as late as I realised.  By the time I’d realised I was experiencing depression I had a) cut myself off from the world and b) thought there was no point in continuing.

So, I, like the other guys, opened up.  It’s genuinely good to do because once you’re comfortable talking about a problem then you start to lose some of the anxiety that comes with bottling it up.  So, I did it. I blogged it.  For me it was time to talk.

When someone first said to me it was ‘brave’ I thought ‘bollocks it’s brave, it’s typing a blog. Brave is not defined by tippy tappying a blog’. I thought there was nothing brave about it because why should it be, I was just putting my tuppence worth into a domain of people who may or may not find it useful.  If one bloke read it and didn’t go as far into that journey of depression as me then to me, it was a total win.  Plus, I couldn’t really have cared less what other folk thought.

What I realise now is that I was probably a bit wet-behind-the-ears and naiive because I had no real consideration of how some people would, from that point hence, judge me as ‘that’s Rick, he’s like that because he’s got mental health problems, he’s got depression’.  It happens.  Any time I get into a situation of challenge with some people or structures it’s a prejudice that comes out, like it’s an label for them to apply to dismiss my view.  Generally it’s people that didn’t know me too well before the last couple of years, who didn’t know that i’ve always been pretty much the same and that I haven’t radically changed because of depression.  Im not intolerant and arsey about injustices ‘because of my depression’.  I’m not like a dog with a bone where it comes to battling for services for Isaac ‘because of my depression, and because i’m angry with the world’.

So, by trying to reduce stigma what can it create….stigma? Is that a reason not to open up and try? No, is it shite. It’s all the more reason to do so. Sometimes I think ‘such and such (person) will always just see me as ‘mad’ because i’ve admitted I suffered depression…how can I change that?’ but then I think – that’s THEIR problem.  I’m not being obstinate there, but it is THEIR problem, because should life ever take the twists that drive them to experience depression they’ll feel they can’t talk.  I genuinely believe that the cause for trying to prevent this is bigger than the reason to build walls and retreat into my own little sometimes depressed shell.

Andrew Fitita isn’t a baldy dad of three from Chorley, he’s a star rugby player.  He’ll go through the rest of his career with people attributing ALL his future behaviour on his admission this week of depression. He maybe doesn’t realise it but he’s in for testing times where it comes to whether he retains his own self belief he did the right thing when people start to do that, but from one bloke who’s experienced depression I KNOW he’s done the right thing. Brave? I suppose by some definition it is, but that’s just a label imposed by people who know what the backlash can feel like.

I can’t smile wide enough.

Had a tweet last night after speaking at the Salford Maternity Conference saying i’d tackled important issues with great humour. It’s got me thinking…

I’ve never been really, really serious but what I was was crushingly shy as a kid.  In primary school I was one of those kids who hung back on everything, mainly on account of being pretty chubby.  I wasn’t one of the in crowd of footballers or fast runners (the defining benchmark for ALL primary aged boys, certainly in the early 1980’s), but I remember that whilst I was never the class clown I loved laughing at them. Not with them, as that would require empathy and for gods sake I was about 10, but laughing AT them.  I loved the banter between our old teacher Mr Callow and the class clowns, the put downs, the jokes, it had a huge impact on the 10 yr old me.  I was, incidentally, allergic to drawing, still am, but I loved the escapism of writing.

So, nearly 30 years later.  Humour? Well, if that’s meant as I don’t take the shit too seriously then yes, hopefully that’s how it appears.  Reality is though that humour and what is going on for real are two pretty disconnected things really.  The old ‘tears of a clown’ cliche is well, a cliche.  I’m far, far from a clown in the way the cliche gets applied mainly but I do identify with the pure energy and escapism that having a laugh gives.  I sit at lunchtimes at work and have sarcastic, offensive snipey banter with three mates and for a half hour or whatever the pressure and stress of everything else can wait.  The depression i’ve had? Not there.  The stress of Isaac’s school transition? Not there. The horrid dark thoughts about Isaac’s future? Not there.  They’ll have their place, i’ve not managed to totally beat those demons, but when you’re having a laugh then it’s not there.

Same to a point when i’m talking at Uni’s, conferences etc.  The subject matter of talking about Isaac is happy, without a doubt. It brings out a laugh now and again.  That’s brilliant, Isaac’s a happy little chappy.  There’s sometimes bits  of what I talk about that are hard hitting for me, one bit that always, always gets me is recounting leaving the boys and lynsey behind on the day they were born and driving home with them in different parts of the hospital. I can think that thought any given time and it evokes such a vivid memory of the emptiness of that walk back to the car.  My way of dealing with it in talks is just to plough on, hit it. Every time I hit it it should be easier but what must be 80 times later it’s still hard.  Thing is its not as hard if you’ve got people in a lighter mood. Last thing I want is people crying ; I’m a bloke for gods sake I can’t handle emotion….!

‘If you didn’t laugh you’d cry’ – crap cliche or truth? I don’t really know.  What I do know is that by allowing a bit of laughing in a room when covering some bleak aspects it creates a bit more thinking.  If it was just ‘oh my god, how terrible, how sad’ then a) it wouldn’t be the reality, because holding Isaac accountable for any unhappiness around him is a crime and b) people switch off.

What I am aware of, and don’t want to come across as, is that having a bit of a light hearted perspective about talking in front of groups is to lessen the importance of what i’m always trying to get across ; Isaac has had amazing care and the extra 1% that people put in because of their values matters.

Sneak back in….

Its a long, long time since I last put pen to paper, or fingers to keys…

There’s been a lot happened in the world of Isaac, and a lot has happened in my world as ‘dad’. The rest of the tribe that share the house have also been noticeable by their presence, as always..

I’ve been away from blogging for a few reasons.  Predominantly its been because i’ve been trying, with variable success, to recover from the depression that affected me so significantly the latter half of 2014.  Nomatter what you write about depression some people will think you’re melodramatic or attention seeking or just can’t pull yourself together.  If I say that I came very close on a few occasions to being unable to carry on, I’m only saying it to hopefully be brutally honest about how it can affect you and hopefully to maybe just show one other person that there is a way back from even the darkest, scariest moments. However, in January both Lynsey and I made a big pledge to make a new year a new start.  It’s been very hard with setbacks sometimes that cause a bit of a ‘factory reset’ moment where you have to shut down and restart but overall i’m almost there.  One thing that has massively helped is that I invested in a mountain bike at Christmas time and have put some miles through my legs up and down the Leeds-Liverpool canal every week since December ; the clear head space that comes from the lack of oxygen and floaty shapes  in my vision is truly escapism..

Anyways, Isaac has continued to recover brilliantly from his broken leg and had the pins removed last week.  Aside from an anaesthetist who whilst assessing Isaac a few minutes after arrival said ‘why the trachy? its unusual to see a trachy in a CP kid’ (reminder given that he’s called Isaac, he’s not a ‘CP kid’ by first definition, he’s a little boy. His disability does NOT define him), the day went great.  Nicky and Abby the two nurses who looked after Isaac in the day case unit recovery ward were so positive, happy, enthusiastic and attentive to Isaac they should be cloned and sent to every paediatric ward!

The current time with Isaac’s care is very stressful ; combining two ‘extra’ things on top of everything else….

1.         House adaptation planning (hopefully almost at the stage of confirming and starting work).  There has been so much to think about, from types of bath, types of bed, how best to mount doors, where the ceiling hoist system will go, where to relocate a boiler, where the window will go, what sort of toilet and hand basin etc etc etbloodycetera. It’s been a few months of feeling like we are trying to coordinate the building of The Shard let alone converting an integral garage but hopefully nearing an end.  For Isaac to have his own room after 4 and a half years of being in a cot bed in our bedroom will be brilliant for him and it matters to me because he’ll have his own space with his identity in it – like his brothers do.

2.   School transition – Isaac and Ethan will start school in September.  I don’t think there’s enough words to explain how stressful this has been and still is.  The fact that the new Education Health Care Plan system is brand new and nobody in a professional capacity seems to know how this system works exactly complicates it immensely.  The grand plan to bring together health and education planning into one place relies on good inter-agency communication and that, as some of you reading will know, is not a given.  Nearly 26 years on from the first publication of ‘Working Together’ there’s still big gaps between how different professionals think about Isaac’s needs.  With in effect 4 months to go there are huge problems to resolve.  Sleepless nights are the norm unfortunately.

Anyhow, that’s about where things are at the moment.  Still doing work in schools and universities through Izzysbusy (www.izzysbusy.org.uk) alongside everything else.  Next major project is around mens mental health, especially for male carers


Time for bed…or not

Patient centred commissioning and Isaac have collided this last couple of weeks and predictably we’re locked into an appeals process and system of bureaucracy that is as truncated as it is irritating.

Essentially, Isaac needs a bed.  Isaac’s bed has to be, to a certain extent, all singing all dancing to cope with his positioning needs and provide comfort and support his hoisting etc as his new room is (planned!) to be completed this summer.  Isaac is still in a cot bed in mine and lynsey’s room – he cannot go in a ‘normal’ bed as it will not raise to support his posture, so it’s a big step that has to be right to get his first ‘proper’ bed.

Isaac’s occupational therapist assessed for a bed, and there was one in the catalogue that is ‘approved’ that was suggested, I’ll call it Bed A.  There’s many things about Bed A that meant that it would not be what Isaac would want, not least that it has a steel frame that looks like a hospital bed and has solid sides to a height of around 3ocm that mean that when Isaac is lying down, he cannot see out of the sides of the bed.  Isaac cannot independently move his head when he is lying down in bed, so looks to the side whilst lay on his back – Bed A cuts his field of vision down meaning he’d only see people when they peer over the sides.

We outlined our concerns, and saw a more appropriate bed, Bed B,  at Kidz Up North (a showcase held each year at Event City for equipment for children with disabilities) with clear sides.  We recognised that it comes in around £1000 more than Bed A but were willing to put the extra money in from our own pocket as it would serve Isaac for many years.

Speaking to Isaac’s OT she said that she would check the position of the Commissioning Support Unit regarding us ‘topping up’ from the cost of Bed A cost to Bed B, as some local areas (even 10 miles away) allow this. One of Isaac’s friends at Rainbow House has exactly this ; the Commissioning Support Unit (CSU) for his area allowed his parents to supplement the cost of the standard bed that the CSU would finance so that they could get a high spec bed.

However, Midlands and Lancashire Commissioning Support Unit have declined the request ; saying that Bed A meets Isaac’s needs and that there are many difficulties regarding service contracts and future ownership of the bed if they did allow our suggestion of ‘contributory funding’.  We had submitted additional information about Isaac’s need to see through clear sides of the bed, his need to have a bed that doesn’t remind him of the 220+ days he has spent in hospital in his four years to date, and that we were advocating what we believed to be his wishes.  We have not yet heard back as to which points specifically they did not accept from these observations.

Now, perspective time, I can hear the cries of ‘they should be grateful he gets a bed provided’ and ‘there’s no money in the NHS so it’s how it is’ and probably worse from some folk. Isaac’s care so far has amounted to very close to, if not exceeding a million pounds, a figure I have calculated from conversations with commissioners, and to seem flippant about public funds is as galling to me as it is to everyone.  I will spend the rest of my life thankful, and proud, that we owe Isaac’s life to the NHS.  I love the NHS and would protect it against anything including reckless spending ; Isaac could not have hoped for better care.  So, please understand I am not arguing about ‘NHS being rubbish not providing exactly what he wants’.  What I am arguing however is that Isaac’s voice was not heard.  Our voice, willing to put ourselves £1000 out of pocket was not heard.  The basis of decision making in a CSU is not, no matter what is said, patient centred based on this experience.

Perhaps we should consider ourselves bloody lucky that Bed A was offered? It is after all being offered at a cost of over £1200 to the NHS.  But it is not what Isaac would want.  In the same way if I ask Jake which trainers he wants when we’re out shopping, he will have a view.  Why should a child with disabilities be offered one option, a take-it-or-leave it? Why should the fact that Isaac can’t see out from the one being offered be irrelevant? You see, Isaac’s voice is easy to silence.  If you talk about his physical needs, his medical needs, his care needs then it’s possible you’ll never get round to talking about the things that make him happy or not.  You can design your dialogue that way if you’re a CSU, or you can accidentally let it happen in a non-discriminatory-but-not-anti-discriminatory way. However, if you’d started the dialogue with a list of what makes Isaac happy and content, I guess the first bed would have been taken out the process early on.

Also, like all parents, you choose and pay for items for your children according to your finances, and what you think meets their needs.  I remember the trips to Mama’s and Papa’s before Jake was born looking at cots and equipment and choosing what we thought was best.  Nobody told us ‘you can’t have that’.  It was our money, our choice, our child.

We are offering to pay the difference between Bed A and Bed B.  It has no higher cost to the NHS, whatsoever.  To then be told no by a CSU, we control what you can and can’t have, creates a real sense that Isaac’s wishes are marginalised.  The CSU knows best, apparently.

The issues of servicing and future ownership cannot be insurmountable ; CSU’s for adjacent boroughs allow contributory funding so there must be a work-around.

So, what’s the outcome.  Well, predictably it is the start of what will no doubt be a protracted process of correspondence that loses focus on the very core of the issue ; Isaac wants a bed and whilst he would say thanks very much for your offer to the CSU he’d prefer the bed that mummy and daddy are willing to put extra money towards.

Sorry if I may sound a bit ‘ranty’, it’s not meant that way, i’m just bitterly opposed to anyone imposing a choice on Isaac. I’m sorry if that offends any CSU staff who may read but really, on behalf of Isaac, this is a bigger problem than those sensitivities.

The silent boy with loads to say.


Isaac has NEVER made a sound.  As in we’ve never heard a cry, a noise, anything.  We’ve never heard his attempts at words like his twin brother does (apparently Ethan’s friend at nursery had an ‘inflection’ in his ear).

Isaac was very ill when he was born and was on a ventilator, CPAP or BIPAP for 9 weeks until he had a tracheostomy due to vocal cord palsy and tracheomalacia.

So, Isaac has always been silent. More than anyone apart from my family, I want to hear Isaac speak.

My wish to hear Isaac speak is understandable, but what concerns me is what not having a voice can mean to him in the future.  Not only is Isaac faced with not being able to verbalise, but the extent of his cerebral palsy is such that he can’t sign either.  He is starting to use a switch activated ‘Big Mac’ but it offers one pre-recorded phrase or word.  It can’t verbalise his feelings.  In effect my little guy is trapped inside his body, whilst fully understanding of all things around him (he has no significant learning disability).

We are living in times where person centred care is central.  The passion to achieve true patient efficacy is a swelling tide.  I’m apparently an ‘activated patient’ and or a ‘patient leader’ (I prefer ‘gobby dad’) and it’s amazing what people like me can contribute to and invest in systems that mean so much to us because we have a real life emotional connection to seeing the care in action. On twitter every day I see leadership for principles of consultation, the capturing of views, achieving joint leadership.  It genuinely does make me excited to know that as I sit here motivated by ensuring that the lifetime of care that Isaac faces is as good as it can be, there are thousands of HCP’s motivated to meet that challenge.

But, and it’s a bit of a big but, how can Isaac contribute apart than through his gobby dad? He’s only 4 but he’s now of an age where his eyes will tell you exactly what he thinks. Isaac has had over 200 days as an in-patient in 3 hospitals, treated by what will literally be hundreds of nurses and doctors, and has had at least 11 trips to theatre for GA’s and surgeries.  For a 4 yr old he’s got a wealth of experience about the NHS, what’s brilliant, what’s a bit ropey and what matters.  I talk about the things that I know have made differences to him, but there could be dozens more in that little boy that I can’t yet tap into.

So, the next challenge I think is how do we hear that little voice.  There’s ongoing efforts by SLT’s around basis eye pointing and recently he’s had a test of an eye-gaze smart box that could revolutionise his life but this will all unfold in time.  For the moment I just hope that my little boy without a voice, and the thousands like him, are heard in conversations about care despite their audible silence.  Part of hearing them is using the people who communicate the most with the child to help the processes,  but the far, FAR more important part, for me, is the desire of the person wanting to hear the ‘voice’.  It’s easy to ignore someone who doesn’t speak, it doesn’t mean they have nothing to say though.

Interviews, stigma and Time to Talk.

‘Tell us what your strengths and weaknesses are’ – an interview question i’ve asked and i’ve answered in many forms over the last 15 years or so. A nice ‘settler’ question i’ve always thought when i’m asking it.  Far nicer to let someone talk about themselves for a few minutes than sit them down in question one with what someone I know used to refer to as a ‘laxative’ question about some complex safeguarding issue.

I hate the ‘strengths’ thing because the more you answer it the more rehearsed you are.  I start with my Gold Merit Swimming Award – I can inflate my pyjamas into a float, save a family of bricks from drowning and swim underwater for 20m to avoid jetsam and flotsam (I remember than from the syllabus, and not understanding aged 11 what flotsam and jetsam are – not a common occurrence in a school pool in Bolton).  I progress through my GSCE Grade D in Religious Education  – a protest against being forced to do it in Catholic secondary school, zero coursework submitted- then move through to my visit to Downing St where I inadvertently called Lord Falconer ‘pal’ in the toilets.  I end with a selection of highlights of where, having talked myself into nearly being battered by violent teenagers I’ve worked with, i’ve managed to talk myself out of it and preserved my good looks.  We can ALL do the strengths question, its a fluffy one.

The weaknesses, you get to the point where you have ‘safe’ weaknesses to admit. People say things like ‘I sometimes have a tendency to be distracted by the dynamic things that happen and lose focus on the longer term work’ and other such crap.  It’s a facade.  A safe one, you just always give a weakness that could be a strength too (…ooh he gets distracted but only by fire fighting and we need fire fighters).  Or ‘I struggle to maintain work life balance’ or stuff like that.

Anyhow, recently I had a painful experience where, through admitting my own weaknesses, they were collected, formed into a tight ball and thrown back at me. I won’t go into it hugely, it’s best left alone on the cliched term of ‘rising above it’. Not that ‘rising above it’ changes the future for others.

However, what it showed was the continuing huge stigmatisation of any mental health issue.  Yes, I’ve had a few weeks in the late summer where depression put me on my arse and reminded me that i’m not as much of an Iron Man as I would have hoped.  For me it’s a neutral issue ; I understand it on the basis that I have, over 4 years or more, been running out of ways to manage the sadness and pressure that having a child with a life long, life limiting disability can have and i’d lost sight to some extent of life beyond that sadness.  I did however talk about it. Well, write about it – blogs and facebook (i’m no longer on there, mainly to do with this) I perhaps naively thought that by being open then I was opening the doors to talking.  I never thought of the stigmatisation you open yourself up to.

I’m not generally naive  –  my profession makes me constantly probe, reflect and re-question myself and others.  I genuinely did not realise that once you say you’re affected by a mental health issue like depression then you lift some people out of their frames of reference. Result – people start making some very weird assumptions about your state of mind and think that they can decide what’s best for you next.

By comparison, 3 years ago I had a multi-ligament knee reconstruction. 10 weeks in a hinged brace. Not once did anyone say anyone in my circle of friends and acquaintances offer an opinion on how I should best recover.

But when it’s a mental illness it’s like everyone has an opinion on how that illness works. Depressed? Then in a lot of peoples views you’ll be about to throw yourself under a train every day, clearly.  You’ll be best left alone until you’ve ‘come out of this illness’ or snap out of it.

All sorts of useless views come forth based on little other than the face that those not affected by mental illness think that they have a ‘sound mind’.  If only that was the case.

In blokes ‘groups’ this is worse than probably all others.  Blokes who haven’t had an episodes of mental illness think they are ‘Ten men’ as the saying goes – nothing will get to them so only the weak succumb. Well those blokes I have to admit I really, strongly dislike.  I was one of them.  I had no warning how my sub conscious wouldn’t bear up to the pressure. The problem for those blokes is that if life takes a twist where sh*t happens and they can’t cope they will feel that they can’t wave a white flag or ask for help and this is the sort of cycle that kills blokes.

I am pretty gobby ; I’ll speak my mind and one bad experience of ignorance won’t change that because I genuinely feel that if ONE other guy feels a bit empowered to ask for support when they need it then it’s all worthwhile. What should be the position though is that all blokes should feel they can talk about mental health without fear of other people jumping to conclusions – in affect stigmatising and stereotyping.  I support every effort that the Time to Change campaign is making to get there to be openness about mental health, there is a huge amount to do but lives will depend on reaching a tipping point where ignorance is swamped by awareness.

The 6C’s (again) – Compassion

Its been almost a year since I put my ramblings on a blog for the first time.  What motivated me that is what motivates me now ;  there’s things about what matters to Isaac that don’t show up on audits, dashboards, commissioning reports or anywhere other than to Isaac and us as his mum and dad.  Some nurses, Drs, Physios, Pharmacists and others have done some amazing things for Isaac and the family and not even realised they’ve done them, and walked away.  The blogs hopefully put across what is important to Isaac.

The 6C’s was my first blog project ; to show how Isaac had lived the 6C’s up to that point.  Compassion was my starting point and almost a year on I think I’ll focus on it again.

It’s going to be a trip down Compassion Lane to the times when Isaac experienced compassionate care. Those sepia soaked days when compassionate care was easy for HCP’s to deliver because there was time, resources, support, great management, amazing leadership and everything in the stars aligned to allow those golden moments of practice. Those defining moments of compassion that I remember, that Isaac remembers and that will affect his whole life.

Thing is, those sepia soaked days didn’t ever exist. The reality is, that on the occasions when Isaac has experienced professionals giving him what I as a dad define as compassionate care, they were under the same pump that they probably always are. There’s never a good time for giving that bit extra.

I’ll share an example. Sadly, about 3 weeks ago, Isaac broke his femur during his physiotherapy stretches with Lynsey (mum). Same exercises, same routine, same pressure, same place. Sorry, I feel like I need to add that sentence because I can sense the reaching for safeguarding referrals and the queue of Social Workers at the front door (nothing worse, blah blah – if you dont know already i’ve been one all my adult life). Anyhow, the poor little guy’s leg broke and an ambulance was needed to get him to hospital. There was a bit of a wait for one – understandable, it wasn’t life threatening – and eventually an ambulance arrived. If you’re familiar with the geography you’ll know that a crew coming from Burscough to Chorley is not exactly local but such was the pressures on the service that was what had happened.

Instantly on arrival the paramedic introduced herself to Isaac, and touched his hand to let her know she was talking to him. A tiny touch, but faced with a little boy with obvious disabilities a lot of people still unfortunately talk to us parents first. She then took control, slowed things right down, seeing that we were all not so much panicking but very anxious. Doing her job in other words some may say. What wasn’t part of the job though was the constant reassurance to a little boy who can’t talk back and the checking out with him if it was ok to move him even though there wont be a verbal answer. That for me IS compassion ; making Isaac feel better when he was in a lot of discomfort. It’s not about giving drugs, taking his history or form filling, it’s about actually caring about how he experiences that process.

North West Ambulance Service is probably full of people who do exactly what that ambulance crew did, and if I walked into one of their staff meetings and said ‘listen to what this crew did, it was so compassionate’ their colleagues would say ‘we ALL do that’. The point is, in 4 years so far we had never – thankfully – had to call an ambulance for Isaac and that crew on the day were in a position to create a legacy, or ruin one. That crew themselves have no idea the impact they had. They possibly think ‘we did a professional job’ – they certainly did but the bits that made the difference were the bits that are not in the job description.

Their day was probably not shaping up to to be amazingly good ; covering a long way from their base, lunch break delayed, a struggle to find our address and then a complex little boy to take to hospital. Their morale may have been low, their tiredness levels high, their pay levels too low, part of a stretched service. But they put delivering kind and thorough care at the front of everything else.

Now, as Ethan my other twin four year old says ‘but why?’(well, he actually says it at least 10 times with total disregard to your previous 9 answers but you get the idea)’. Why on earth do they do the whole ‘compassion’ thing in the face of everything else?

Is it because of their personal values? Without a doubt. Being a paramedic or ambulance technician is a job suited most to people who care about other people, he says stating the obvious. There has to be some alignment in the value base of the person.  But just because you believe in something doesn’t make you do it. I truly believe that I would be better off starting to jog regularly and eat healthier, but there’s a dissonance between heart and mind.

Is it because of team values or organisational values? For Isaac there needs to be a culture that EXPECTS what happened with him to be the ‘norm’. Isaac needs there to be leadership that notices it, values it and rewards it.

When people say that the 6C’s or the focus on compassionate care is a moot point because it is what they were always doing then as a dad of a little fella with a life long disability I’m over the moon. It means then that the building to get it even better will be easier, the foundation is there. Isaac needs people who will continue to strive to deliver compassionate care in every interaction, not teams or individuals who think they’ve nailed it already. That benchmarking tool you did back in 2014 will probably be pretty dusty when Isaac’s 21 years old and needs someone like that paramedic to take control of his care in a kind, empathic, positive way. Compassionate care being shifted front and centre in strategy, commissioning and practice is the only way that as a dad I can feel confident that Isaac’s future care will continue to be as high quality as it has been.

How to lose friends and influence people.

Facebook is a constantly running, ticker tape of stuff that varies in use.  A friend told me months ago that it’s a ‘necessary evil’ in the modern world because of the connectivity it allows and the effortless way it keeps you ‘in touch’ with others.

About 6 weeks ago I binned it after about 7 years of using it pretty much daily.  I had decided that it was not for me.  I was struggling with depression and kind of reckoned that when the bile rises when I see someone presenting a fake angle of themselves on FB that I could do without the negativity.  I’m not so much blaming others, its an odd concept though how people communicate on FB.

You get the ‘boast posts’ with people saying what they’ve bought.  Now, really, what went before FB on this front? Did people put their most recent expensive jeans / shoes / coats in their front window with a clipboard on the outside of the glass with instructions to others to add a tick if they ‘like’ it? Or is it about materialism…the ‘I am considerably richer than yaw’ mentality? I really just don’t get this sort of post ; may as well say ‘i’m insecure but obviously my latest expensive shoes show i’m a success’.  Weird as a lemonade sandwich.  If my own kids ever decide to post something they’ve just bought in a gauche ‘look at meeeee’ post I promise, they’ll be moving out.

There’s the ‘banter’ posts.  Now this I miss.  For naturally sarcastic people it’s like a firing range – just aim and fire off a comment that pokes fun at something or someone and it’s good for a giggle.

There’s the ‘i’m at x’ posts, checking in from wherever.  I’ve seen check ins from shops, gyms, America, Australia and everywhere in-between.  I’ve checked in from landmarks, from coffee shops and trains.  Odd isn’t it though….in the past we used to send postcards when we’d been somewhere interesting but now…now the arrival of the postcard is usurped by you thumb scrolling past the fact that i’m in somewhere dead interesting.

There’s the ‘feeling’ thing on FB.  The ‘little bob is feeling…upset’.  Then the next person says ‘oh are you ok’ and little bob doesn’t reply. Repeat x 10 on your timeline most weeks.  Before FB did we walk into the pub with a sign in our hands saying ‘i’m feeling excited to be out with (tagged friend) and (tagged friend)’ before checking in at the Cock and Bull before we even got a drink?

There’s the ‘Little Bob has invited you to play jelly swap’ or some such crap.  On receiving a message like this there should be an option to click that euthanises Little Bob instantly. If life gets so bad that I wait for an invite to play a game on a computer then i’ll be joining him.

There’s pictures.  My god are there pictures.  ‘Jane has just posted 47 pictures of her night in the pub’.  AND YOU CLICK ON IT.  And it’s Jane. In the pub.  And her friends who you don’t know. In the pub.  I love to see a pic, or 2 or maybe 3 of people I know but I can only imagine the horror that 47 pics of me would inflict.

So, FB and me are divorced.  You’d think bearing in mind my views that it’d be a happy separation? Not especially.

I used to post a fair bit on FB about my kids, about news, about how I was feeling sometimes but no more.  In the 6 weeks i’ve been off i’ve found out I face redundancy, I’ve questioned whether life is worth living aside from my immediate family and i’ve come close to throwing it all in.  Would the support on FB have helped? Probably not cos people say things like ‘chin up’ and ‘it’ll work out’ and ‘thinking of you’ and it’s all wallpaper to the reality that life’s pretty shitty at times.  Had you spoken to them in person they would say more than ‘thinking of you’ wouldn’t they but how FB makes us communicate is that we can feel like we’ve done something positive by a click or a vacuous statement.  I’ve heard people say ‘I click ‘like’ on their posts because I feel I have to’ and it’s that sort of thing.  I have found myself saying ‘hope all is well’ when someone has just posted that they’ve got an elderly relative in hospital who will probably die imminently.  ‘Hope all is well’??? It’s like the most non committal comment that makes me feel i’ve connected by writing it, and feel better.  What does the recipient really feel? Hopefully a bit supported but it’s nothing really is it.  If I cared i’d call, or text or do something that shows a little more empathy.  FB is not for compassion.

In 6 weeks there’s some mates who I thought i’d keep in touch with through old fashioned means like text or email or phone, but we haven’t.  It’s selfish to say that the isolation that comes from depression means that you need people to reach out but it’s unfortunately true.  At times I can’t be arsed with people who I probably should be arsed with ; friends but people I think a lot of but who fall under the fog of the negativity of the depression sometimes.  Some people have made so little effort that it shows that the FB link up was less than superficial to them – and with those people I know i’ve made the right decision moving off line.   It really redefines friendships – FB takes away that ‘who makes the first move to stay in touch’ thing but once you’re off it then it all lies on me.  And the thing with depression sometimes is that I think others don’t care so why would I bother to contact them.

The other thing you miss out on is ‘news’.  Announcements, alerts, opportunities, and so on – FB is a conduit for a lot of ‘stuff’ in your networks and you miss out, simple as.  Can I live with that? Well what you don’t know, you don’t know…

I really don’t know whether I’ll ever return to FB.  I miss some of the positives ; I have mates in Australia and America that I will lose contact with and family members who i’ll never hear from for years probably but on balance at the moment it’s not a good place for me to spend time….I hope they understand.