When Good News Friday appears on a Monday, you know the good has been peppered with, or more like drowned by, a whole heap of crap. Last week was a humdinger, stinking piles of the rotten stuff rained down on us.
You see last week involved much crying on the phone to strangers (I am not a crier and I found this excruciatingly embarrassing – I am cringing as I type), shaking with stress after these phone calls and generally feeling like I was going to break. If you follow me on Twitter, you’ll know what I’m on about and if you replied to one of my tweets – which several of you amazing lovelies did – then all I can say is thank you for putting me back together again.
But actually all the bad turned to good in the end. Because the lesson of last week was that breaking down or cracking up or basically showing that I am not a totally together automaton who will take everything on the chin does not make you weak. It can make people take notice. It can make things happen. It stinks that life is like this. But it’s true.
So, here’s the bad that turned to good.
1) On Thursday I decided to phone the hospital where Boo had his diagnostic tests three months ago to ask if there was any news on when we might expect results. They are so busy that it is taking them up to 12 weeks to do the tests that other hospitals are turning around in 5 weeks. I understand they are under-resourced. I wasn’t angry, just ground down and looking for information.
Oddly, unlike my own hospital, someone phoned me back within 30 minutes. But what she said really shocked me. Not all of the results were back, but the lumbar puncture, 3/4 of the genetic tests and MRI results were sent to our hospital 7 weeks ago. 7 weeks ago. The person I spoke to was horrified we hadn’t been told.
So I phoned my hospital to be told that the consultant’s secretary wasn’t in until late the following week and results aren’t given on the phone, so a message would be left for the secretary to book us an appointment to get the results in the next month. I burst into tears and ask if I could speak to the consultant in question. I was told he wasn’t in but he wouldn’t talk to me on the phone anyway.
The words poured out of me like a torrent. I started by saying that I knew this wasn’t her fault, but I really needed her help. Couldn’t she see that it was immoral to withhold information about my son from me. I asked if she could understand how hard it was to be waiting every day for the post to come to find out if your son only has quadriplegic cerebral palsy (best case scenario) or a genetic or metabolic disorder that could kill him. How knowledge was power and withholding it was an abuse of power. I then asked if one of Boo’s other two consultants, who I knew would have been copied into the report, would phone me. She said she felt sorry for me and she would try to get someone to speak to me.
I don’t want people to feel sorry for me. I want systems to work. For people to do their job.
An hour later another of Boo’s consultants rang. She said she couldn’t locate Boo’s file (this happens at least twice a month) so couldn’t say if the results had been lost in the post or not (the only explanation in her mind for why we hadn’t been told about the results before now). She had asked the hospital to fax them.
And, so far so good. Yes, there’s brain damage but nothing we didn’t already know about or isn’t consistent with the illness he contracted just after his premature birth. No seizure activity. All genetic tests so far and LP normal. Of course, the ones that are outstanding could still threaten something bad, but only the very rare things are left now and that is unlikely.
This is good news. I still don’t know why we weren’t told. Whether the report was lost in the post (we have been told this about two separate matters before – one an internal post issue) or whether we just weren’t informed, I don’t know. But I’m glad I chased this up. I’m glad we know what we know.
But this meant I already felt bruised and battered going into the ring for a second time last week…
2) OT. By rights, Boo should have been under OT for about 8 months now. He has been top of the ‘urgent’ OT waiting list (urgent because he is at high risk of scoliosis and because his Dad and I are starting to get back injuries) for 3 months. Here we have a Social Services OT for equipment for home and one at the hospital who does equipment for on the go, nursery, school etc. The two are apparently arguing the toss about who should help Boo in these different ‘settings’ because he is under 2. But I have managed to source a seat for home myself (no idea if it is therapeutically the best thing for Boo but it’s better than what we had before). Nursery urgently need something too. Let me be clear, if this isn’t sorted we have been told Boo will have irreversible spinal problems.
All of the consultant’s and the physio’s attempts to contact the hospital OT in the last 3 months have been ignored. The 6 phone calls I have made in the last 3 months have been ignored. So at the physio’s urging I emailed and wrote a hard copy letter to the Customer Services Manager at our local healthcare provider to complain officially. The next day I got an email (although this seems merely to have been a coincidence) from the Senior Paediatric OT saying she would call me with an update the next day. The next day the phone rang and I was told she had no idea when anyone could see Boo as there wasn’t a single appointment for months and I should write a letter to complain.
I pointed out I already had complained and I broke down. Through my sobs I pointed out the prognosis we’d been given if Boo didn’t have the right equipment. I pointed out I would go out and buy anything he needed myself if I had to, but I needed their professional advice to get the right thing. As I felt my heart beating out of my chest, I said, without thinking about it much and calmly, that if Boo did develop spinal problems as a result of all this, I would be seeking legal advice. She said she’d make a note of that. She asked me to pass on the complaint I’d sent. It contained a litany of complaints about her. I felt nervous, but knew the contents were 100 per cent truthful so said I would.
I put the phone down and felt like I was going to collapse. You see it wasn’t just one phone call that made me feel upset and angry. We are talking about nearly 18 months of cock-ups and battles. 18 months of people not following protocols and jeopardizing Boo’s health (some of which have already had long term implications); of losing reports, files and other important information; of being put on the wrong (non-urgent) waiting lists; of being jumped in the queue by people who we are told ‘make more of a fuss with far less reason to’; of not having people communicate with you.
I phoned The Grumposaur. He was upset too and said, ‘Tell them I’m a journalist’ (he is, by the way, a freelance, for several magazines and a couple of well-known national newspapers). ‘I don’t know what good it will do’, he said, ‘but tell them. We’ll go to the papers’.
And within an hour I was told that the Senior OT and her line manager had had a chat and that there was an appointment free on Monday afternoon.
We had gone from months for the next available appointment to the next working day in a matter of minutes. In fact, I had a choice of appointments. I should have asked how this was possible. But I was all out of fight. I should have said, if I’d said my partner was a journalist 3 months ago, would Boo be properly supported already? I should have asked what about all the other parents of disabled children who don’t work for the press?
I am ashamed that I didn’t, even if I am so pleased for Boo.
But I am not giving up. Partly because we have so many other battles still to fight, like the one for advice on home equipment that I am about to pursue when I finish this blog post. Being Boo’s advocate has become a part-time job lately, but it is my job to do it and even though I am frankly exhausted and struggling with my other job and my daughter and just getting to the end of each day sometimes, I will keep going.
This is a promise, Boo. But I promise also that I am not going to be content with being pleased for ourselves when things do finally work out. Every disabled child deserves an advocate and systemic failures need to be flagged and people given an opportunity to deal with them.
I am still thinking about how best to pursue this (although I hope and expect this blog to be a part of whatever I do) and I need to think about how much energy I can devote to this at the moment when things are especially difficult. But if I can help other children and parents who are going through their own particular nightmare with local services then I will. I have never been more motivated to do anything in my life.
Watch this space.