Portentous clogs

My new Fitflop clogs arrived today, the replacement for the ones I’ve been wearing most of the time for the past 18 months. They’re lovely, blue linen. There’s a label in the box.

Iggy and I giggle for ages.

 

 

fitfloplabel

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Putting the world to rights

I slept till half four, which is a bit of a miracle. The past couple of days I think have been marked by an undercurrent of anger. Anger at politicians of course, most especially on day one of the Junior Doctors’ Strike and the ESA cut; but anger too in myself at what’s happening to me. We all know the stages of grief, and I’m absolutely sure I’m not progressing through them just yet. But there are elements of disbelief or denial, elements of anger, elements of acceptance, jumbled like all that human detritus on the high water mark. Perhaps this is a precursor of how I’ll feel later on, when I know for sure what I’m dealing with, a little practice run.

After my friend’s shrivelling prayer, another friend has taken up that baton in a slightly different way. H sings in a choir, and she’s directing her singing (last night was Mozart in Latin) in order to shrivel several iconic figures, key among them, Hunt. So if you go to listen to a choir in Devon singing Mozart there might be a few dangerous notes out there.

I went on Facebook in the wee hours yesterday, because I couldn’t get my head straight to write. A messenger came through why aren’t you resting! from my friend G, a paramedic on nights, most likely flopped in a chair, exhausted, at a dispatch point somewhere around Newton Abbot. Funny to think I’m being watched over by people when I’m at home in bed. That time around 4am is the worst for shift workers. If you’re on an ambulance, it’s the time you hope to get a decent job, one that’ll carry you through to the end of the shift, because you know you’re going to get one, but you don’t want it to be at 0630, unless it’s in the town and it’s someone who you can hand to the day crew – that means either a social care job, or a hospital job who is stable and not time-critical.

Based as I was 35 minutes from the district hospital, a finish there at 0700 meant only a 30 minute overrun. On the other hand, if that job was in the wrong direction, you might equally find yourself in Bude and about to transport a patient to Barnstaple at 0600. So that’s 1.15 of bendy roads to the hospital, maybe half an hour to handover (or maybe longer if it’s busy), a quick clean up and sort the kit, and set off on your hour-long cross country journey to base when you’re already an hour over, pulling your hair hard each time your eyes start to lose focus. You aren’t available for jobs then, so the ambulance is effectively out of use. But if there was something major going on you would get a call and of course you’d do the job if you agreed it was immediately life-threatening. Despite what you hear about crews on break refusing to respond to people dying in the street, front line ambulance staff are human beings who will always help if they can.

Behind those headlines, as ever, was the decision to stop paid breaks for ambulance staff. We used in our trust to be called off a break for an A cat (known as Red), high priority call. But as the crews and vehicles became more and more stretched, there were more and more reasons to allocate the job and hit the target response time of 8 minutes because if you don’t meet those targets the trust loses money from government in a couple of devious ways – comparable to that ESA cut being framed as an incentive to work, NHS trusts have been beaten with sticks for years as the pressures on them have increased. So rather than giving them the money to do a good job and asking for some efforts to improve on a number of well-chosen –  measurable – targets, you cut their money and demand savings on top, while also penalising them when they can’t do it.

Many of those Red calls are anything but when you get there in any case; if I tell you I used to leave on average 60-65% of my patients at home that should give you an idea, yet many of those were triaged as Red calls. So crews lost an hour’s pay per 12 hour shift, and gained the right to an uninterrupted break. Crews need breaks. Imagine running through the night with no opportunity to get a cuppa or have a wee, or get some decent food. It’s not only horrible to do, it’s also dangerous. Driving when tired is like driving when over the limit on alcohol. And do you want your paramedic to show up to your MI barely able to think through the fug of exhaustion and the desperate for a pee? I’ve even in extremis had to ask the patient if I can use their loo (and some of those look like something out of Fungus the Bogeyman). So as ever, the human response and willingness to go above and beyond, the goodwill, starts to erode, and the decision to do a job or not when you don’t have to becomes politicised, and underlaid with resentment that your pay has been cut.

That was why in our trust we would officially not be called for a job when on break, because it puts pressure on the crews and you are not available. The fact that my job involves caring for people doesn’t allow you to emotionally blackmail me or take the micky. However, if you work in an area like I did you would hope that the despatcher would radio you for something clearly dreadful and where you can save a life. We’d often start early, show up to find a shattered crew and a nasty job comes in – we’d jump on board and run. So thinking of junior doctors, that’s the environment that’s being created. Treat the kinds of people who do our jobs with respect and compassion, and they’ll do anything for their patients, without fussing too much about pay rises or breaks, as long as they feel their pay is fair. Once you start demanding, and playing games, and eroding their pay and terms and conditions of service you lose that.

The classic there was Jeremy Hunt’s handling of the 1%, independently-reviewed pay award for NHS professionals in 2014/15. By then we had lost around 20% of our pay since 2010 with the freeze and the changes to unsocial hours and the absence of inflation-based pay rises. Paramedics work under incredible pressure and with the kind of responsibility that most people can’t even imagine, doing increasingly complex interventions and often with no top cover. The buck stops with you. Southwestern Ambulance Service is massively proactive because it has to be – it covers a vast rural area dotted with big cities and towns, and so we did much more than many urban trusts in order to avoid taking everyone to hospital because if we didn’t the system would collapse. It’s been phenomenally successful, yet the cuts to social care have meant that it no longer works because the resources aren’t there for us to access. But still the trust is blamed and penalised for not having a vehicle to meet the Red call in Okehampton, because it’s conveying an elderly frail person to Exeter because there are no beds in the community hospital.

For paramedics, as the responsibility increased, costs were being cut. We used to work with Emergency Care Technicians, who have a range of skills, knowledge and – crucially – experience. A good one would think, advise, notice omissions or changes to the patient’s condition, supply the kit or the drug you were just thinking about ready to go as you thought it, cannulate for you while you sorted the airway, that kind of thing. Bear in mind you might be managing your patient while standing on a fireman’s back with your top half leaning into the car that’s upside down, pouring petrol, in a tree; or wedged next to the bath leaning over your collapsed patient who’s stuck between the toilet and the door covered in diarrhoea trying to get an airway. It ain’t like being in the ED. Techs have mostly been replaced by ECAs for less pay (far too little for what they are expected to do and see and deal with while working health-destroying shifts) who are drivers trained to assist paramedics. They can’t work unsupervised. Many of them do an excellent job, but it’s not enough. Yet paramedics are still Band 5 and working a band or two above that.

Jeremy Hunt attacked our pay through refusing the 1% to those who are still on annual increments, working their way up the pay band over 7 years or so.  He called it getting  ‘money for nothing’.  When you qualify as a Band 5 paramedic you start at the bottom of that band. However, the pay grade for a paramedic, carefully assessed in every detail to compare all those different NHS roles which was the purpose of Agenda for Change, is the rate paid at the top of the band. Because experience is so vital, it takes 7 years to work your way up band and earn the approved pay rate for a paramedic. Would you be surprised if I told you a newly-qualified paramedic earns just over £10 per hour? At the moment (but look out), you also get unsocial hours payments. I worked I think 67% unsocial hours and was on the maximum 25% (that’s set in stone according to your station rota). At the top of the band, you’d take home maybe £32,000 per year on a 25% unsocial rota. At the bottom, far from that. So what Hunt did, was to spin the increment system as some kind of undeserved freebie and cut the pay of paramedics and nurses to a level below that for which they are fairly paid for what they do. That’s the background to so-called pay disputes, framed as those greedy public sector workers coining it in off the state. Sickness too was running at well over 7% by then, which is a sign that your workforce is at breaking point. You need huge emotional and physical resilience to work in these jobs, and if that breaks you do become ill, and you get injured. Feeling undervalued is the key to that. It’s not about money, that’s not the prime motivator. So when you’re being lectured on compassion and vocation by someone who’d sell his granny to Darth Vader the effect is cataclysmic. It’s not fair in any way, and comparisons to supermarket workers are really beyond the pale. Everyone should get a fair rate of pay for what they do, public or private sector. The people we should be cross with are the ones at the top, not the badly-paid and unfairly treated workers elsewhere.

Another near rant, all things I feel I need to say today. I have so many stories to tell, yet I’m running out of time. Hopefully this time tomorrow I’ll be at Derriford Hospital, preparing myself for the very best that the NHS and its amazing staff can do for me. That’s why I need to contextualise today again, perhaps. Because our NHS is being Darth Vadered and I need you to know what’s at stake.

 

 

 

Blurred

The blurred vision that hit me yesterday evening really did hit me. I tried to be calm, to contextualise it, but the realisation that such a thing could happen led to a kind of bleakness, especially because I couldn’t get on google and research it.

After dinner, I washed my face, and noticed I have eyebags that are protruding over 1cm, which started me thinking more about the steroids as a cause. By 9 I’d worked out how to see enough to read, and as I posted in a PS, blurred vision is on the list of side effects for dexamethasone – as is, rarely, breathlessness which has worsened recently as I said.

I can’t go with the cataracts, since it’s so soon and it developed in a flash, in both eyes (although I suppose it might have started in one, and the other compensated, till that went too).

I might suspect Hunt if it were in one eye, perhaps, but he’s in the wrong place for that unless generalised swelling were responsible. Over the past couple of weeks, though, the signs and symptoms associated with that swelling have improved steadily to the point where I know the steroids are working, so that doesn’t fit. So I feel calmer this morning, but the magnitude of the whole is encroaching on me by degrees and leaps as the dragging wait for surgery continues.

Back to that brain thing again, so many possible consequences for so many areas of my life, so that I’m back to bargaining (with whom? I don’t know) between preferable, tolerable and no way. I have a bloody good chance at least initially of recovering, but of course there are risks, and then there’s the whole cancer thing, and the effects of the treatment which can be permanent.

On a positive note, I’ve experimented with the ondansetron and it’s marvellous. I take 4mg about 15 minutes before breakfast and steroids, then again before lunch, and before dinner. If I take them twice a day as suggested, lunch is hard particularly because the second steroid dose is at one, and I most certainly need ondansetron for that. I forgot the dinner ondansetron last eve, what with everything else, and felt suddenly and dramatically nauseous at 9 till I popped the last pill of the day.

The saga of the Ms issue returned on Saturday; the final forms from the DWP arrived, following that tussle with the DWP advisor over the legality of a woman wishing to be addressed as ‘Ms’.  Under ‘title’, it says ‘Miss’. I’ve crossed it out, over-emphatically, in black biro and replaced it with and inch-high ‘MS‘. Take that DWP advisor! And I trust it won’t result in a delay to my benefits. I’m in no mood to compromise.

A final comment from my Mum, Jenny:

“Now don’t forget to take notes on all this, I’d say you’re sub-standard mentally and you’ll forget.”

Sick

One of the more subtle symptoms of my brain tumour is a vague, intermittent nausea. It’s one of those feelings I’ve been able to ignore perhaps because it’s not that troubling, and I’m used to GI symptoms.

The nausea worsened with steroids which are pretty irritating to the gut and my GP Dr H prescribed domperidone to help alleviate it a couple of days after the diagnosis. That helped, and enabled me to eat more which in turn made me feel better, certainly later in the day once the steroid doses were done.

But in the past two or three days the nausea has worsened considerably, from a slight annoyance to something more; for most of the day I’ve grown an acid gremlin that sits in the pit of my stomach and threatens to shoot. It’s not reflux, and eating doesn’t help. This afternoon I thought I might actually vomit if I laid down.

The duty GP at my surgery is Dr E, a man I know and like very much, partly because I’ve seen him a few times in recent months with my various troubles during which he has been excellent; he also works for the out of hours GP service locally. On the occasions when I’ve called him regarding a patient – one of which was especially complex and and involved an extremely upsetting mental health crisis where as ever we had no access to specialist resources – he has been unfailing in his willingness and ability to sort the most intractable situations.

Dr E had called me within 20 minutes, at 4.45 on a Friday, which was the point where I realised the domperidone was no longer working and that I have another weekend to get through. We discussed the options. His solution is to hit it with the big guns, because as he says, the point is to alleviate the symptoms for this period until I undergo surgery. So, within an hour my brother Dave has collected Ondansetron from the pharmacy.

It’s the first truly effective, multi-purpose anti-emetic that paramedics here were authorised to administer, and I have used it in a number of situations to great effect. I’m to take it prophylactically – with the aim of preventing nausea rather than treating it – starting with 4mg twice a day, with the option to double either or both doses.

Another  big up for our NHS.

Mirror, mirror

IMG_2694The pillow’s kind of in the way, but I doze off for half an hour. My face feels squashed somehow. I wake to find I’m prodding some padding beneath my cheekbones, and have ditched the pillow. In the mirror is a harvest moon, where once was my face.

Ten years younger, lines plumped out.  People pay a fortune to look like this. I peer into the speckled glass.

Mirror mirror on the wall, whose is the fairest face of all?

I prod and note the bulges beneath my eyes and the pads filling what was once the gap between cheekbones and jaw. Ah, the jaw. There’s a chin there, but on either side hang rococo swags. A further, more generous arc of whatever this is curves and wobbles like an oedematous granny in a hammock slung between the angles of my jaw.

The whole is coloured in a spectacularly healthy-looking windburn shade of the type sported by mountaineers striding over crags. No fading Victorian maid for me then, no romantic drape of wan helplessness across a velvet chaise longue (Mum actually has one of these which I had been planning to put to good use later on).

J and A arrive; “Don’t you look well!”

Bloody steroids.

We head off for a walk down the Walkham, me wobbling slightly but feeling quite good, were it not for the nausea that keeps returning today and the Hunt headache. I wonder whether it’s related to biscuit consumption, which has, in the past couple of days, been high. I decide to avoid sugar for a bit, it’s certainly not a good idea to OD on it with steroids. But it’s so comforting.

Bun fossicks in the woodland and swims with J & A in a gorgeous, green-tinged river pool. This one features a chalybeate spring, where iron colours the otherwise palest blue-grey rocks a dramatic rusty red. I examine the spring, and the tumorous galls on a sapling rooted next to it, feeling a connection. I’d love to leap into those lush bubbles, but the chill of winter river temperatures (perhaps between 5 and 7 degrees) is hard to counter when you can’t forge through in a strong and warming way. Plus, I’d most likely have emerged looking like Adam Walker.

IMG_2704

Buck passing

“I understand you have a problem with Derriford Hospital?”

The call is from Geoffrey Cox MP’s office. I’d though I’d been pretty clear yesterday that I have no problem whatsoever with Derriford Hospital, but this of course is the mindset of our political class. Where does the buck stop?

“No, I have no problem whatsoever with Derriford Hospital, nor with anyone else in the NHS. I have been treated amazingly from the first visit to my GP till now. I have a problem with government cuts to social care which is the prime reason that Derriford is being forced to cancel urgent neurosurgery.”

“So what would you like Mr Cox to do?”

I explain again, far more succinctly that I did yesterday, that I’d like to know Mr Cox’s thoughts on the situation with the social care crisis. I’d like to know what the government is doing to solve this crisis.

I would like to know who in government will take responsibility for the situation with the NHS and social care.

I would Mr Cox to ask Jeremy Hunt to take responsibility for the current state of the NHS, and to identify the issues and address the funding gap and the bed shortage. This is his job. I would like him to manage the situation without blaming anyone else, whether that’s trusts, or junior doctors, or nurses.

“I realise this is a political point, but it’s a key political point. My personal situation is the direct result of the failures in government health and social care policies since 2010.”

I tell the aide that I’m not doing this to queue jump, to kick up a stink about my own situation. I’m doing it for all of us waiting for urgent neurosurgery this week, and next.

I can expect a letter, the woman says.