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

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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.

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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.

Dad’s an onion.

3 kids under 9 was never going to be easy, especially with twins.  I was always destined to be one of those dads with a thousand-yard stare due to exhaustion and a triumvirate of small people shouting up at me like hungry birds in a nest, and needing intravenous coffee to support me through the day.

Four years of it, I should have been an old hand at the plate spinning it requires.  I am, by different times of the week a dad, a social worker, a rugby coach, a taxi service.  Oh, and I have peacekeeping and mediation tactics of Kofi Annan, without which there is every chance that Itchy and Scratchy (Jake, 8 and Ethan 4) would succeed in inflicting grievous harm on each other.

Nowhere in my self identity is there a label of ‘carer’. I’m just a dad, and being a dad involves a lot of roles, caring being one but it’s no more a catch all definition than ‘feeder’ (although the line of thought that connects to involving zoos, wild animals and feeding times is perhaps accurate).  But ‘carer’? Well, I used to work in residential care and looking back it was a lot of caring for, but it was paid.  It was a job.  The title of carer makes me think ‘paid employment’.  People paid to care.

As a dad it’s just part of the package.  When Jake was born and I was nappy changing, feeding, bathing him, dressing him, carrying him around and suchlike was I a carer? No, I was a dad doing what a parent should do.  With Isaac we nappy change, feed – through a PEG-, bath, dress him, carry him around.  Why the difference?

Society says babies are cared for in a certain way, and that chronologically, and developmentally they get bigger, walk about, start to talk, acquire skills and bobs-your-uncle-fannies-your-aunt they need less care.  It’s normal.

But with a 4 year old with disabilities, it’s becoming a bit abnormal is societies eyes.  See, Ethan as a twin brother is doing the things people expect, no nappies, starting to dress himself (albeit it looks like he has coated himself in glue and dived into a linen basket) and talking.  My word is he talking. He can breathe through his ears.

So, when does this ‘carer’ tag get applied?  I have, as i’ve said in other blogs, had a rough few months where depression has hit me and left me a bit empty – during which i’ve had a few trips to my GP.  A year or so ago, I went in explaining I was running on automatic, so, so exhausted and lacking a lot of drive or interest in what I used to like doing.  I explained about Isaac and the demands Isaac’s situation (NOT Isaac, he isn’t the cause, it’s the situation not him as a little boy) creates. Simply put, each boy should be 33% of my ‘dadness’ and 33% of my wife’s ‘mumness’ but the sum doesn’t work when one little boy needs more than his 33%, 24 hour 1-2-1 care in effect.  The GP gave me low dose Anti-Depressants, and told me that they may make me better and suggested CBT.  I attended, but when you’re given a list of things that people can find stressful in life like this one and it contains nothing about ‘having a child with complex disabilities’, nothing about providing 24 hour care and nothing about how it may affect his brothers I realised I lacked a bit of trust in the process.

A few weeks ago, I went back with similar feelings.  Increases of medication, and, having read around GP primary care support I asked about carer support either attached to the practice, or locally.  I’d had a bit of a ‘road to damascus’ moment and realised that realising that i’m a  ‘carer’ is now part of who I am.  I realised that the first thought in the heads of my wife and I on any given day is Isaac and his needs, and that we are caring to a level where it’s an issue to be recognised, that it will go on for the rest of our lives, and that I (I can’t speak on behalf of my wife from an emotional health perspective) needed some help. I was told flatly ‘no we don’t have anything’, no carers liaison worker, no nothing. Advised to call social services.  Will I? Probably not.  I’m a social worker ; thresholds for support for a family that ‘copes’ (i.e not accessing current Social Services home care or benefits) I strongly suspect sit above where we’re at nowadays in my local area. That’s not a criticism, it’s a reality of how overstretched services are.

It’s a bit frustrating because I think unfortunately I’ve been seen as a bloke who has had episodes of depression by the GP, and on a surface level that’s correct.  What is frustrating is that, whilst I can’t predict my future mental health, there’s every chance that unless some change is effected then there’s every likelihood that I’ll continue to be a bloke who goes back to the GP every few months with episodes of depression.  That change will need to come from me, I know that, but it’s about the support to help it happen that frustrates.  If my GP had listened a bit harder to my words they may have heard my true voice that whilst I sit there in the consultations room self deprecating about my inability to get any drive going, what i’m perhaps saying is that ‘look i’m a carer, I’m waving a white flag here, help me’.  The situation around lack of support outside the surgery may have been the same but that’s a secondary point; identifying the real issue is the main one.  Someone I’m close to described me as being an onion, lots of layers and whilst I knew what they meant the very fact that the last time i’d heard that analogy was of an overweight, bald ogre in ‘Shrek’ was…….accurate  clearly nothing like me.

Us guys are a nightmare, I know that.  My mates may ask ‘hows Isaac’ when we’re sat taking the p*ss out of each other over a brew and my ‘he’s fine, thanks, pretty stable at the moment and no hospital trips this month so far’ is a veneer.  They know it but I know that what they’re really asking is how I am, but as blokes we don’t necessarily do the ‘I’m sinking’ answer.  We brush off, we cope.  Stiff upper lip.  As one of my old rugby coaches said to us several times over my teens ‘don’t show them you’re hurt, run back in line, or else they’ll know they’ve hurt you and they’ll just run at you all day’.  Show weakness? No.  So what chance has a GP got of me, or an elderly gentleman from a stoic generation who is caring for his wife who has alzheimer’s disease, coming into a room with an oppressive power dynamic and telling someone who is essentially a stranger about what is REALLY going on in our heads?

There’s a need for better early identification of carers, I am talking from a male perspective and it’s an acute need I think.  All health care professionals and social care professionals, and society as a whole (ok, that’s utopia but go with me on this) need to reach in to grab the tightly folded arms of blokes bottling up the stress and strain that caring presents.  My thoughts on how to do it are a different blog for another day, but like a lot of solutions there’s no smoke and mirrors – it’s just about starting to think from another perspective, trying, and talking.

I’ve not half rambled on, so much so that my skinny cappuccino is a memory.  Now, the admission of having had a skinny cappuccino would have gone really well with that old rugby coach of mine…

Diluting the solution to Isaac’s needs?

A few weeks ago I tweeted about the position Isaac found himself in regarding his prescribed omeprazole in solution.  This is what happened:

We had a letter (not a discussion) from our GP saying that they had been talking to their ‘pharmaceutical advisor’ who had said that Isaac’s Omeprazole in solution is an expensive item and that he could be moved onto dispersible tablets instead. Isaac had been on omeprazole since he was around a year old ; his reflux is bad for a period after most feeds – he is having an investigation under anaesthetic next week – and at no point had cost been an issue.  As a PEG fed child it was initially prescribed in solution and this has always been so  for 3 years.  300ml bottle ordered every 2.5 weeks or so. Isaac has never suffered any side effects and it eases the acid levels and does its job.  We did, at one point due to a problem with production at the special order pharmacy the dispensing pharmacy uses, end up with tablet form for a few days about a year ago.  Frankly, no matter how you grind it (I even purchased a pill grinder) and how long you leave it in water, it will not fully dissolve.  It was leaving residue at the connection between PEG and enteral feeding tube and blocked the fine bore element of the drug port on the tube. When Isaac’s mum Lynsey emailed the GP with concern about this he replied ‘it’s fine’.  We emailed again with a stronger worded concern and he said he would speak to the pharma advisor about it, which he did and the outcome was that they wanted to get a Gastro consultant’s view.  This took 2 weeks (during which time Isaac was issued another prescription, but for a smaller volume) and came back that giving omeprazole in solution is always preferable because of the frequency of blocked feed tubes.  In the meantime I had spoken with a nurse who works on a Paediatric MAU ward who said that she has seen a few tubes blocked by medication each year over the last 10 years or so and that she saw it as ‘par for the course’.

So, problem solved (a solution found?!) and life would be back to normal for Isaac without omeprazole-gate rumbling on.  Not quite the final chapter in the story however.

Last week Lynsey took Isaac’s prescription to Tesco pharmacy.  At this point, as i’ve already been complimentary in other blogs about the helpful staff at Tesco Chorley pharmacy I should point out that I’m not on a club card based commission plan with them – if only! The pharmacist was a new pharmacist who had never dispensed Isaac’s omeprazole previously and he spotted an issue.  The pharmacist asked if we knew why Isaac was on such a low strength solution ; 20mg in 20ml, and that surely it would make more sense for Isaac to have less volume and have 20mg in 5ml.  The obvious benefits being Isaac having less fluid – always a bonus with his reflux problems – and also that the prescription would last a LOT longer each time it was ordered.  The pharmacist asked if we would speak to the GP to ask about this issue, so an email was sent and the new strength ordered.  Problem solved.

However, theres some things for reflection I think :

1.       What was the true reason for the initial decision to change Isaacs prescription to tablet form?  Is the pharmaceutical advisor for the GP there to achieve good partnership care as a triumvirate with the patient or are they there to maximise efficiency and save money? I’m not cynical by nature, nor am I in any way averse to protecting the NHS from incurring unnecessary costs.  Isaac’s care to date must be well into the hundreds of thousands of pounds, Isaac owes his life to the NHS.  I do however get cynical when Isaac isn’t considered in decision making, and we receive a letter with an outcome presented as a fait-accompli.  Did the process start with ‘these are Isaac’s needs, lets work forwards to possible solutions’ or did it start with the output of ‘look at the cost of this child’s medication, lets work backwards’? Both are starting points but each will set you on a path to either a needs let or a resource led outcome.  The pharmacist’s first words were about Isaac having to tolerate less volume, it shows where his thought process starts.

2.   Who should spot opportunities for improvement?  For 3 years the repeat prescription email was going through every 3 weeks, dozens of opportunities for SOMEONE to think ‘hmm, I wonder?’ but it takes a pragmatic pharmacist who hadn’t had any dealings with Isaac previously to start a change.  I don’t attribute blame to a GP necessarily but systemically there appears something upside down there.

3.  As usual the best outcomes don’t come ‘naturally’ and without the need to advocate for Isaac.  We need to turn this ship around so that other people involved in Isaac’s care are some of his biggest advocates ; as a family we know zero about pharmacology or drugs.  We only knew something may be duff with the original plan because of experience.  If we’d accepted the outcome and Isaac had unfortunately proceeded  to have a blocked PEG (which he may, or may not have eventually had, who knows) and he’d had to attend hospital then who would have ever learnt anything? Would anyone reflect on decisions made earlier in his care or would it be seen as something that just happens? There needs to be a joined up process to learn from.

Anyways, sorry if it’s been a bit of an epic ‘blow by blow’ story, only sharing it because I hope some good practice can come out of it.  Right, i’m off to buy some lunch (at Morrisons, just so I can’t be accused of bias!).