This was supposed to be a missive coming from “back where it all began”, i.e. a room in the JR hospital, with me tapping out a blog post on my iPad from the bedside of my darling girl. See this post from 2011 as an example.
AJ was supposed to be in the JR all of last week for an observation. This was great news as she had not been down to have this until next February. Boris has fixed the NHS, huzzah! (spoiler alert: he hasn’t!)
The idea was that she was going to be locked into a room equipped with CCTV with electrodes on her head to try to work out what the correlation is between her seizures and what is going on her head at the time. We’ve tried doing this out home a couple of times and both times it was rather inconclusive – it relies on us hitting a button just when she is having a seizure and having my GoPro camera trained on her at all times. Both times she has either not had a seizure for the duration of the exercise or we have missed them when she does. So this was supposed to be the big one – full 24-hour observation for five days – this time she was not going to escape. We had got Helen up to help spend time in the hospital, I had taken time off work and we had worked out transport arrangements – no mean feat when you two cars have severe limitations – mine is an electric that doesn’t quite make it to Oxford and back on one charge and Fo’s van… that sometimes starts – but probably not if it has been sitting in a hospital car park for a week.
But come Monday morning… ummm… no room. Call later… no room, maybe try tomorrow… no room. Well maybe you would like to consider conducting the observation at home… would that be the same observation that we have tried twice already and has failed twice already? Should I be charging my GoPro?
The long and the short of it is that it looks like this will now go back to its February slot – Boris has not fixed the NHS, boo!
But as luck would have it in terms of writing the emotive “back where it all began” post, Ava-Jane had another appointment. This time she was going to be in the JR to have her nose feed tube replaced by a PEG that goes straight into her stomach. I have always been a bit conflicted about this operation – having a tap straight into your tum feels a bit permanent but given that she has had a nose tube for about six months now, and she chokes nearly every time she eats, it’s time I face the fact that this is a permanent situation. And, of course, she will look cuter for the blog post pics without her tube and dressing on her cheek.
So more reorganisation of life – days off booked, vehicle juggle planned: Fo, AJ and I go into Oxford together, in her van, leaving at 5 a.m. Otto goes to cousins for night – they will drop him at drama next day. The op happens, I remain in hospital – Fo goes home with van. I stay the night with AJ and bang out the blog post. Fo then sells AJ’s electric chair, picks up Otto, comes to the JR. I go to visit my podcast hero in a different hospital in Oxford, while Otto and AJ hang (there is no one better for her morale than her brother). I then return to JR and go home with Otto in the van. I have then got to get myself to Heathrow to go to Madrid the next day but that is a tangent too far – only thing to add is that I need a charge point parking space!***
Simples! God, I am sorry for having quoted a meerkat and no, not “Simples” at all. None of it happened, well, I hope that the trip to Madrid will still go ahead, but hell who knows what the future holds?****
It was another cancellation – no beds. In fact, they haven’t been able to have patients in for routine admissions for six weeks. It’s like there is some complete disconnect between what the medical staff are doing and the actual administration of the hospital. It’s like someone removed a whole layer of bureaucracy without really thinking it through. Or that something has happened to cause foreign nurses to leave the NHS. Just to pluck a stat out of thin air – 304 EU staff have left Oxford University Hospitals since 2016.
BOOM! am I going to go there? Yes, of course I am going to go there, after all, we are in mid-election frenzy, are we not?!
The Election… oh joy, oh rapture!
Now I am not going to blame the current Prime Minister directly that my daughter did not get a bed in a hospital but what I will say is that his continuing in that position gives me the collywobbles about the health service. After nine years of Conservative government, the NHS is on its knees but we are expected to believe that five more years of Conservative government is what it needs. I think I might come on to trusting Johnson’s word below but we already know that his pledge to build “40 new hospitals” whiffs. It turns out that this is actually six new hospitals and then something called seed funds for the remaining 34. Could anything sound less built than a “seed fund”? We are about to plant a load of saplings and apparently you should only expect a third of them to survive and seeds are just wannabe saplings.*****
I really do not think we have a particularly awful bunch of politicians right now as a lot of people seem to think but I do believe that we have some astoundingly bad potential Prime Ministers and as Jo Swinson is very keen to include herself in that bracket, I include her.
But with the metaphorical gun to my head, forced to make a choice between Johnson and Corbyn, I would have to choose Corbyn. He is a bit thick and and a bit useless and is surrounded by some pretty awful people but compared to Johnson, I think he would be a less worse option.
He is not a Marxist******, he is certainly not a Stalinist; he’s a Socialist. What he is proposing is closer to Sweden than Venezuela. Plenty of reasonable countries have had Socialist governments, Spain right now, though maybe not in a few weeks, France during much of the 80s under Mitterrand. In fact Spain’s great flourishing of the 1980s was under a Socialist government. It is not that frightening. If you are very, very, very rich, you might under up just being just very, very rich.
I have been doing a bit of gentle trolling of friends and family on Facebook – I do seem to have quite a lot of Tory supporting friends and family on Facebook, so I get plenty of opportunities for this. So where I see a list of all the bad things Labour did during its ten years in power, I might might add a list of the terrible things Johnson has done in a few weeks. Or if there is a Labour MP excoriating the Labour leadership, I might pop up a pic or two of Conservative Grandees saying they do not recognise their own party in its current state. And when one friend had a post questioning whether there was anything less patriotic than not singing the National Anthem during a memorial service, I answered that maybe lying to the Queen was less patriotic than not singing about her. All good fun!
You might not like it, but at least Corbyn and McDonnell have got a plan. And it’s a plan based on a fairly long-sighted vision. And as I say, it is a plan that you might disagree with but at least there is something to disagree on.
Johnson’s one election promise is to “Get Brexit Done”. The Conservatives will tack on some focus-grouped pledges – people are worried about the NHS, let’s promise to build some hospitals, see above. We were once the party of Law and Order, so let’s promise to train more police constables, we should at least try to get numbers back to somewhere near where they were before we cut them all – it’s 20,000 new constables to replace the 21,000 that have been cut since 2010.
And beyond that they are just dealing in the grubbiest, dishonest politicking. They went around saying they had costed Labour’s spending at over a trillion pounds – a trillion just sounds made up for starters. It was all rubbish and they haven’t even costed their own spending. During the leader’s debate, they mocked up a Twitter account called Fact Check UK and created a bogus website called Labour Manifesto.
And of course, the grubbiest lie of them all is that they will get Brexit done. Even if everything goes swimmingly, we will have years of negotiating trade deals with the EU, who we already have a trade deal with, and years of negotiating trade deals with countries that we already have trade deals with because we are members of the EU. Leaving the EU will not “Get Brexit Done”, and Johnson knows it.
It’s this dishonesty at his core that makes me think he is unfit to be Prime Minister. For democracy to work, the electorate needs to have a vague sense that they can believe what they are being told. Corbyn and McDonnell will struggle to get half of what they promise done – all sorts of things will conspire against them but at least we know what they want to do. When the only discernible motivation behind Boris Johnson’s political career is the desire to be Prime Minister, it becomes very hard to know what he wants to do now that he is PM.
This blog post really is not going anywhere, sorry! I had grand plans to post a stream of evidence of the mendacity of Boris Johnson but I think we have reached the same stage that has been reached in the US with Donald Trump. Proving he is a liar does not detract from his popularity. They operate on a different level than other politicians or maybe more terrifyingly, than previous politicians.
So I think that I will just post a series of random links below that I have collected up if anyone wants to look into them further and I will get back to writing about Ava-Jane.
As is probably obvious from the disjointedness of this post, I have been going at it over a number of days, with a trip to Spain midway and there have been some AJ events to update on. She and I manned the Lucky Dip stall at her school’s Xmas Fayre. We made for quite a good double act and pulled in quite a lot of punters.
Apologies for the sad attempt to disguise the kid who is in the pic and I hadn’t asked for permission to post online.
Today we had one of her parent’s meetings on steroids. Where with Otto, we are lucky to have five minutes with a couple of his key teachers; with Ava-Jane it’s a mass meeting. This one was especially crucial as it she is transitioning to secondary school. We want her to go to a school that’s near to us, in Milton Keynes, which happens to be outside the county of Buckinghamshire. This throws up a host of administrative hoo-has. It has been incredibly beneficial that her school and her main hospital are right next to each other as she spends about the same time in each (I exaggerate for effect), so it’s handy to be able to shuttle between the two. But the nearest special needs school that we also think would be a good fit for AJ is just over the county lines and like some 1930s bootleggers, we are are going to take out lives in our own hands and run the gauntlet.
What this does mean is that we have to have AJ’s Education, Health and Care Plan straight. AJ has been lucky enough to be at an amazing school with one of the great people of this world, Caroline, as her teacher. She has had various lengthy documents written about what her needs are that are invariably way off target but as she has been surrounded by people who know her and and have her best interests at heart, these documents have not been that important, but now that she is going to be sent off on the next stage of her life, she needs the paperwork to be in order. And that what this meeting was all about.
We brought some muscle with us in the shape of a mate from our Down’s Syndrome association who has become a professional advocate for families with special needs and she knows her shit. We had a two hour meeting banging out the exact meaning of statements along the lines of “she doesn’t like to focus on an activity for more than ten minutes” (= she needs a member of staff on hand who is able to rotate activities on a ten minute cycle). I am an editor of books for learning the English language but even I was surprised at the importance of getting the language exactly right.
There were ten people at the meeting and we had to accept apologies for the absence of at least a couple more. AJ has such a spectrum of needs that she gets a fairly full spectrum of needs’ carers – occupational, speech and physio therapists, a social worker, visual impairment and the two people who know her best, Caroline, her teacher and Dawn, the nurse: two incredible people. I think they are both finding it quite hard with AJ’s seizures. It really does seem to pain Caroline how they set AJ back when they were making such good progress together. And obviously Dawn is just left to pick up the pieces when AJ is in a bad way. I did feel immensely proud when Dawn gave me me a “well done” for inserting a feeding tube this weekend after AJ had yanked it out.
And the upshot of the meeting was that we needed another meeting.
No one really wants to talk about the fraudulence and manipulation of the Vote Leave campaign during the Brexit Referendum for a number of reasons. It is nigh on impossible to prove. It looks like sour grapes. And most importantly no one ever thinks they have been manipulated.
But these things are true: The man who is our current PM and looks set to be for the next five years, led a campaign that paid a lot of money, more money than it was illegally permitted to do, to a company, Cambridge Analytica, that is known to have manipulated elections.
It is worth having a listen to this interview with Chris Wylie, the whistleblower who worked for Cambridge Analytica if you want to get an understanding how this company works.
Reports not coming out
Back in more innocent times, even the whiff of a sexual affair or the hint of collusion with the Russians would have been enough to bring down a politician. Heck, the Profumo Affair, which had both, nearly brought down a whole government and sunk John Profumo himself for good. Johnson has got both! There is a police report about possible misconduct in a public office concerning his relationship with an American entrepreneur and there is a parliamentary report about Russian interference in UK politics. But fortunately for Johnson neither will be published until after the election. Phew!!
What interest could the voting public possibly have in knowing whether the Prime Minister is, in the words of Richard Nixon, “a crook”.
Get Brexit done, my arse
Selling the NHS – what the US is demanding from a US/UK trade deal
**footnote: these two are linked. The more Johnson decides that he has to “get Brexit done” the more he will have to drop his trousers when it comes to negotiating a trade deal with the US.
General Johnson Dishonesty
The lies, falsehoods and misrepresentations of Boris Johnson and his government.
Pic of my niece Molly
She really has nothing to do with Brexit or Johnson, she’s just great.
***I did get a special parking place with charging but the bastards didn’t charge my car!
****Well, weirdly, I do now know what the future holds… it held a some sort of norovirus/gastroenteritis and spent a lot of my time in Madrid puking…
*****His promise of 50,000 new nurses also pongs
******I wrote this a couple of weeks ago but this is exactly how someone I enjoyed a lovely luncheon with this Sunday described Corbyn.