I haven't complained, once.
Ok, take that sentence out of context and you would have Roger, certainly, raising his eyebrows. What I mean is, despite everything that happened, both from the dangerous to the incompetent and even stretching to the negligent while we were in Great Ormond Street, I never sat down and wrote a letter full of anger and grief to anyone within the hospital walls that I thought might just listen. I am not, however, under any illusion that I'm a placid wall flower, gentle, unassuming and utterly trampleable on. The reason for biting my tongue all this time is of course simple survival instinct. While you're reliant on people to look after your interests, it's usually prudent to not send a fleet of pigeons to bombard them with all the shit that you've been forced to smilingly scrape off yourself for the duration of your time with them. Another reason is because I'm a big believer in seeing the bigger picture. It's always easy, when you have been hurt or let down by someone, to focus on the incidences that sparked your unhappiness, to only see the person or people through that hurt and to forget the kindness or commitment that has been shown to you before. The longer you let the hurt distort your perception of the truth, the harder it is to remove it and remember the actual person or people for the complete, albeit flawed, person that they are. After all, if we were all judged simply by the sum of our selfish, cowardly or cruel moments, none of us would measure up to very much at all. We all fail other people, it's human, no one is impervious to it, and most importantly, it's how we learn, build character and become better people for it.
But what then if it is an organisation that you feel has wronged you? Does that in itself make the crime less forgivable, or should we allow for the same errors of judgements and flaws, even if we know that it could put our children at risk? For me, the dividing line is whether or not there is a self awareness evident, or at least a hint that the organisation are operating in a culture of self improvement and constant self assessment in order to ensure that they learn from mistakes. If instead you find that, not only do you feel deeply wronged, but you are then faced with a culture of denial, self appreciation and bullying which prevent such issues being addressed, or even listened to. Now that has to incur a different, less tolerant approach surely? But which one do you take? If you would believe the American feel-good films perhaps, with the visual aid of a sharp suit, possibly some shoulder pads and a slight breeze ruffling your hair, you would deliver the best, most rousing and impassioned speech possible. With each fist slam on the highly polished board table you would almost hear the cold hard shells crumbling away from the stern people you faced, while slowly, one by one, each and every one of them realises the error of their ways. You might even manage to save the world from an impending alien invasion while you're at it. However, one must consider the possibility that they won't subscribe to the gushing sentimentality required to pull this approach off though, this is after all Britain, and more than that it's the NHS, and even more than that, it's middle management in the NHS in Britain. If faced with a culture where inviting scrutiny and (god forbid) criticism, for the greater good isn't an approach undertaken unless forced, the only shoulder-padded person they are going to listen to most certainly would be directly linked to their pay packet.
Another approach is to make an almighty fuss, in the style of 'those who shout loudest' school of getting things sorted. This is where lower management are engaged. Coerced by sharply worded emails they are pushed towards the angry parent to make the 'problem' disappear before higher powers turn their gaze on middle management to find out what all the fuss is about. Platitudes, empty assurances and inflexibility is the risk of taking this approach.
What then if a small ripple is accidentally caused in the smooth GOSH exterior that then grows in size as it moves outwards? Sensing the possibility of a tidal wave sweeping in through the chief execs office, what then? This is the situation we found ourselves in, but the conclusion, it appears, that was made was that we were responsible for causing the ripples, and removing the cause in turn might remove the possibility that the disruption would keep spreading until it reached past the self contained management team and out into open waters.
It took some time after we had been caught in the middle of hospital in-fighting over lapses in Dominic's care, which to be honest was little more than playground name calling but it had strayed from behind the (normally tightly drawn) staff curtains into our room, for me to be convinced that the increasingly upsetting and bizarre behaviour we were encountering was not just the product of institutional paranoia on my part. I also realised that perhaps I had been a little naive in thinking that everyone had Dominic's best interests at heart. When a lesser-spotted manager appeared, face buttered with a fixed smile but a redness creeping up her neck and onto her cheeks which suggested the real agenda she was there to achieve, I knew for sure that something was going on. To cut out a lot of guff about Dominic's best interests which impressively she managed to pepper the conversation with but never actually address, the crux of the meeting was to see if they could persuade myself and Dominic to vacate the ward immediately, either to go somewhere else in the hospital, or go home. Dominic was beside himself anyway at this point because of the bizarre behaviour of the staff around us and doesn't cope well at all with change (he eats non food stuff when he's stressed or anxious) which is why all the doctors and nurses had fought so hard to keep him on the surgical ward for 8 months for his own safety as much as anything. So it seemed positively ludicrous to have such a big upheaval when home was imminent and also dangerous to have a different team that didn't know him trying to coordinate something that would have to be as carefully handled as his discharge into the community. And as for going home, we were desperate to, but not a single aspect of his care in the community had been addressed despite me having prompted repeatedly since Christmas. The doctors at this point certainly were thinking home was a few weeks away, with a slow transition being necessary as we became sure that he was stable. Dominic was still having bloods daily and he had just started going without IV fluids, with no one really sure how he would do, but the general opinion of everyone (with the exception of myself of course as I'd researched and devised the plan to get him off IV fluid dependency) was that this plan wasn't gong to work. I left the meeting feeling that despite being the one person to push for ideas to get him home, I had just been made to feel like I was a malingerer, and providing a handover to the community was an unnecessary inconvenience that I had placed upon the hospital.
There is nothing more destructive than lies, especially so if they are greased with smiles, platitudes and subversion. In our case the lies, which I've only just scratched the surface of apparently, soured the happy event of us finally checking out of hotel GOSH, and robbed me, and more tragically, Dominic of any trust in people meant to help us. The lies also served a deeper purpose though, they, over the course of many months, transformed Dominic from a child who had gone through so much and continued to smile his way from one incident to another, into one who was overcome with anguish and was more distressed than I have ever seen him. My heart broke a thousand times for him and he sobbed and cried as the people he saw as his friends and who had been an integral part of his life started ignoring him, either because they were told to, or because they didn't want to get wrapped up in it all and incur the wrath of management. Rather than being genuinely happy that he was returning home, the ward seemed to breathe a long sigh of relief when we finally left, as finally the shouty emails might just stop, the problem that caused management to cover their keyboards with spittle as they bashed out a heavy handed email had been removed. I would have thought that energies would be better spent encouraging people to work quickly and efficiently towards ensuring everything is done to enable a child to be discharged safely, but hey, I'm just a parent.
In actual fact we left without so much as a discharge letter. The only reason I had any information at all to present to an unsuspecting emergency doctor about Dominic, should he become unwell, is because a junior doctor on nights took pity on me and did his best to cobble something together using information I'd proved the night before we left. I should have stayed, I should have stood my ground and insisted that Dominic had at least the basics done for him, and caused merry hell should they try and shirk responsibility. They had after all, once again with a fixed smile promised both Roger and I, that they would of course do everything that needed to be done before we left. But, and I hate to admit it and I do hope you will forgive me for being so utterly cowardly when it really counted, I was too scared, too horrified by the levels they would sink to in order to get their own way and too conscious of the rather forced smiles of the nurses trying to sympathise whilst also mentally calculating how long it would take them to remove our belongings should we leave the room for long enough. This last act of intimidation was directly handed down by management. The ever smiling (or was it in fact gritted teeth, it's hard to tell) lady from management had in fact come round the day before we were due to leave under the pretence of saying goodbye to Dominic. While she was on the ward, she didn't utilise her time to prod people into booking outpatients appointments and ensuring handover letters were being written, but instead came to see how much still remained on Dominic's walls and to ask me how long I thought it might take to remove it and pack it all up. I thought it was a bizarre question at the time, but I shuddered when a very kind nurse tipped me off that while I was desperately trying to get something, anything, in writing from the hospital to give emergency doctors some information about how to treat Dominic should he get unwell at home, the nurses had been told by management to remove all my belongings from the room should I leave it. There was never any concern expressed by management as to why no one had sorted Dominic's discharge out, despite having 8 months to do so, and having had me begging and reminding for the last three months as I was so scared of this happening. There was no concern for his safety should he leave the hospital with no feed or medicines until the GPs opened on Monday. No thought given to the community teams expected to take over a child who had perplexed the 'experts' at Great Ormond Street with no information and no guidance. No thought to the small child, so acutely aware of the tension and lies surrounding him that he was reduced to a screaming, kicking, biting mess, intent on hurting himself and smashing his most beloved possessions to pieces, the trust he'd placed in the staff who had occupied nearly a quarter of his life, shattered. They just wanted him gone, whatever the cost to Dominic.
I have never felt so desperate and so outraged. I still can't fathom how anyone can justify their actions, and how the dynamics within the hospital mean that staff who are appalled by what going on, and know the enormous strain and detrimental effect it is causing, feel unable to stand up and say so. Instead they apologetically bow their head and say they have no choice but to do what the managers tell them to. They perhaps gained a week by their intervention. What I lost was any trust that Dominic's best interests were what mattered or that anyone would step up and advocate for my child if needed. I also lost my optimistic little boy. He was a changed child, and I sobbed along with him when I saw the smiling happy go lucky boy reduced to a child who snarled at anyone who came into his room and bit himself when people, who had made themselves important in his life, walked past him pretending he did not exist. I cannot emphasise enough the destructive, dangerous and cancerous consequences such blinded management styles inflict. Both Dominic and I are changed people, and while I do my best to prevent those changes filtering into and infecting our loves at home, there is little I can do except tackle Dominic's mistrust face on and leave the self doubt and frustration to plague me when everyone else sleeps.
Having had another email ignored asking for help as I try and sort out yet another problem caused by our ungracious discharge, I wonder if any twangs of guilt or self doubt ever dare to creep into the minds of the very same people who said that they would, of course, be there to provide support once Dominic left, and that they would, of course, sort out the long list of unfinished discharge documentation when we left without it. Perhaps everyone is simply basking in the relief that management is finally soothed, too busy rubbing their hands together with glee at the thought of finally regaining our bed to listen to the desperate unreturned answer phone messages and emails saying that Dominic is unwell and no one in the community can help, so please, please can we have the outpatient's appointment that was meant to be booked for 4 weeks after discharge. I wonder if someone somewhere believes they are doing us a favour by making sure that no one replies, as really are are too reliant on Great Ormond Street and we really must learn that they are not a tertiary care centre, that we have to learn to be more independent and to trust the local community team to do their jobs. With a child like Dominic, that pretty much means that you just do it yourself. So I dutifully check the blood and urine results, and, when necessary, dash off another unanswered email to point out the worryingly results from the past few weeks. I found out that in fact my emails don't actually get sucked into some vacuous space where not even dust can exist when one such email elicited a phone call a few days later…
"Is that Dominic's mum?"
"Ah, excellent, it's Great Ormond Street Hospital here. We've noticed Dominic's urine sodium results are very low this week"
"Really? That's remarkably clever considering he hasn't even given a sample yet"
"Oh, really? Um…"
"Could you be referring to the results of the past three weeks?…
… his levels have been low for three weeks in a row…"
"Ah yes, of course. What were they again…?"
You get the point.
Oh, but don't I just sound like the embittered parent. Trust me, I don't spend all my time moaning about my relationship with Great Ormond Street, despite perhaps suggesting otherwise in this blog. Being the dissatisfied complainer is a role that I do not cherish, and if the stakes weren't so high, you perhaps would not even hear a peep from me about the subject. But this isn't only happening to me, I am merely the buffer, the filter, the quality control, however you might define it, between the hospital and my precious and vulnerable child who is directly affected by it. I want to draw my proverbial line, to be able to throw myself into a furious battle with the house with a Herculean effort to cull, clean and organise (or mark my territory as Roger would have everyone believe) Instead I'm split down the middle between being mother and advocate, between hospital and home. Simply trying get to grips with the lives that I've been cut out of for such a long time is overwhelming, but to have to drag myself out of bed each morning ready for battle means that my mind always feels elsewhere, mentally planning the next step and assessing risks and possibilities. It's emotionally exhausting and the feeling of defeat each night does little to bring any comfort. Allowing my energy and focus to be preoccupied with being angry is not something that I can, or want to sustain though. The people around me deserve better than the mother, friend, partner that the whole process of being with Dominic for the past 8 months and then the nightmare of the last few months and discharge has left me as. I recognise that it's important to keep your disappointment and sense of injustice in proportion so it doesn't become the only thing that you see when you look in the mirror, and that is where a lot of lateral thinking, late nights working, and maintaining a good relationship with those who are at the heart of the problem can help. Remembering that we are all flawed and are not the sum of our lesser moments means that you might just see opportunity where bitterness may have masked it. I am, at the end of the day, not angry with the staff at Great Ormond Street, each and everyone has done far more good for our family than harm over the years that we have known them. On returning to the hospital, as a visitor this time, this was never more evident than the warmth of our greeting when we returned to the ward. Removed from the ties of management omnipotence these are, after all, people who we have shared almost a year of our lives with. It is the management machine that continues to horrifying me, of what boundaries, if any, are put in place when their focus falls on a child, or a bed, to stop that machine if it over zealously starts chewing up what is in the child's best interests to achieve its purpose.
So how do I draw the much needed line in the sand but still also ensure Dominic gets the input we need from the hospital? Patience, realism, kindness, optimism and a tiny dash of telling the truth I think. Certainly a file exists on my computer where the first paragraph of a letter addressed to the chief executive resides. After all I always did look silly in shoulder pads and I have a very annoying habit of bursting into tears when I'm frustrated which means the Hollywood blockbuster approach would never work for me. My approach is to just sit down and write what I know. And maybe, if enough other people did the same, then a new model of machine might just emerge that will see management taking on a more open, self-evaluative approach, which can only benefit the staff, parents and children at the heart of it all. Maybe, just maybe.