Catch up part 1

 

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It’s been easy to float along with the treatment, knowing the potential for it to affect me in nasty ways, and to feel relieved that actually it’s not that bad. The effects accrue, though as ever it’s hard to know what is affecting what. Brain? Radiotherapy? Chemotherapy? Steroids? Anti-emetics (currently these are drowse-inducing).  I live in a space where I don’t seem to have access to my thoughts, including the ones I’ve just had. So I forget the thread, lose the point. This happens when I’m talking, thinking, or doing. The best description I can give is that it’s like being in the flow state, what used to be called right-brain. It’s a place where time doesn’t really exist, and where any linear thought is subsumed beneath sets of connections that spark and form into a creative whole; essentially the antithesis of a primary class preparing for a SATs test in writing. But here’s the rub. I can’t achieve my usual flow state when I write. Usually my meanderings begin, spawn creatures and watercourses that gather into pools filled with life, thought fish and larvae and plants. I do suspect sabotage, and of course it has to be Cheshire Cat Hunt; Tory Secretaries of State like to work together to impose their clueless dogma on any of us in danger of forming and expressing an original thought, or comunincating in anything other than doublespeak. So I’ve been trapped In a medieval chastity belt that’s stopped me from blogging. I’m afraid I might have left at least 80% of the blogging market untapped. So competitive tenders please, from Serco, G4S, NSL and Virgin Care. I’m sure they’ll be far more efficient than I.

My sleep is now more unconsciousness, though I do wake in the night sometimes. I haven’t felt good, but I have been able at least at the weekends to do something, to make a short-term plan and have some hope of it happening. I have periods where I feel deeply tired, drugged, blunted and out of phase with my internal and external reality (whatever that is) in the way I might if I yammed 60mg of codeine and drank a pint of cider. I can’t necessarily sleep when this happens though; I just sort of stop, and hang, like a dope head at a party.

I made the Sharrah Stagger three weeks ago; a total of five miles’ walking up the Dart and back, culminating in a swim in the beautiful pool. The event was organised by a visiting friend who finds it very difficult to walk any distance, and it was one of her long-term goals to swim there; two other friends also have mobility and other health problems, so we decided to stagger together. It was a Sunday and  I’d  had two days with no radiotherapy, though I’d taken the Temozolomide as usual. I’m pretty sure I wouldn’t have made it on any other day.

We were accompanied by a few other friends on the opposite end of the fitness scale, who were delighted to join us. I had no real concern about safety because all of us are outdoors people and wild swimmers who take the perceived risk as a part of the point of doing it; we like a thrill, and we like to live on the edge.  Nonetheless I found myself feeling grateful that if anything were to go wrong we had someone able to scamper up the steep sides of the Dart Gorge to get help.

Of course, things didn’t quite go to plan. We made it to Sharrah slowly but uneventfully, with a picnic lunch of carrot hummus, guacamole, pitta bread and gin lemon drizzle cake at Black Rock on the way. I found myself creeping in from our little beach – where, scandalously – someone had left two grilles from so-called ‘disposable’ barbecues. I found myself eventually sitting on a rock with water up to my shoulders. The water was still pretty cold, maybe 10 or 11 degrees, and I was afraid of being unable to breathe properly. It’s that core confidence that’s missing, that certainty that my body can respond, that I can swim like a fish and get myself out of trouble as I have so many times before. I have little faith in my body doing anything beyond failing. The fit and athletic, strong me hasn’t been there for at least 18 months, and since last autumn I’ve lost it completely. I remember meeting Kernow S at Polzeath just before I was diagnosed. I went out about 300 meters in a wavy but not strong sea, and had a real surge of fear as I started to swim back in that I couldn’t make it on the ebb. I did, by taking it slowly and steadily. This time, I felt similarly. But shielded by J I made it up to the cascade and sat on a rock just as I felt I needed to.

There was a teenage couple there and the boy took some time to get in wearing his boxers, loudly encouraged by the girl, who was happily swimming in a bikini. We joined in the encouragement and he finally took the plunge. I felt a surge of energy, watching two young people really going for it and having so much fun. So I decided to come down the cascade. Of course I hit a couple of dark rocks (which have a special significance in our swimming group) and naughtily grazed one knee and one calf. I almost did the half dive to go under, but for once chose the sensible option and kept my head above water. In bubbles you sink because they make the water less dense. At the same time, the current pulls you along and so the feeling is like being blown by a gale through a puffy cloud. At Sharrah there’s a sheer rock face and the current pushes you into it, so I bent and kicked as I neared it, managing to partly cross the current and head downstream. I felt warm, buffeted and exhilarated as I got out.

Could I have the germolene? said a voice to my right. I looked over and realised that J had fallen over, and that C was holding a tissue over J’s right shin.  Now being a paramedic I’m more inclined to the germolene approach than the dial 999 one, however, as C lifted the tissues from J’s shin I found myself coming as close to physically leaping into action as I have in months. J had fallen into a rock, and lacerated her shin over the bone (known in the trade as a pre-tibial laceration). Beneath the laceration was clearly a varicose vein. Dark blood welled and  poured. I grabbed a wade of tissues, got the others to raise J’s leg and to press hard on the wound with the tissues. People worry about arterial bleeds, but if you burst a varicose vein you can bleed out. I wasn’t in a position to take J’s blood pressure (if it’s high, the bleed can be spectacular). On one occasion I was called to a woman who’d burst a varicose vein and who had dangerously high BP; we were forced to pin a note to the kitchen door for the patient’s son who was expected imminently, but whose phone was switched off: Please don’t worry, we’re an ambulance crew and we have taken your Mum to hospital. She’s burst a varicose vein, we’ve stopped the bleeding, and she is ok we promise.  I doubt he believed us as he opened the door to a kitchen that looked like the set for a slasher film with blood up the walls, and several football-sized clots wobbling on a blood-smeared floor.

Now as I was travelling light, I’d made a decision not to carry my first aid kit, and so I had no dressings with me. So I got the others to help J to dry off and get dressed, because of course by then she was both emotionally shocked and cold from her swim while I fished in my rucksack for the tissues I’d packed. I had a look at the wound and allowed it to bleed a little to clean it as best I could, then used my wodge of tissues taped down with micropore to maintain the pressure. Fortuitously,  J was wearing knee-length pressure socks which meant we had a simple and effective way of maintaining the pressure evenly over the wound. After a rest and some more picnic, J was sure that she’d make the walk back. I sent her off to Tavistock Minor Injuries Unit to get the wound properly assessed, cleaned and dressed. Rather more exciting than we’d planned, but a lovely boost in several ways. Bun was also delighted to spend the afternoon in the woods and river, back to her old life.

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Nurses and other expenses

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I had a stressful day on Friday that I’d rater forget about, related to extraneous events that I just can’t deal with at the moment.  I’ve posted a happy picture of me and a  friend swimming last May because it makes me smile.

Luckily, or not, I’ve been diverted by the nurse shortage, which is of course due entirely to events outside the government’s control, and for which their policies and short-termist swingeing cuts cannot possibly be held accountable. Oh, and they’ve been saying, ad nauseum in answer to any number of questions in parliament, just how many ‘extra’ nurses (doctors, paramedics) there are since they started running the show.

Top of Hunt’s list of reasons for the NHS’s staffing problems, is the rising bill associated with fed up staff whose pay and terms and conditions have been eroded significantly since 2010. These staff, many of whom had worked for the NHS for decades, suddenly started to up sticks and display their greed and lack of compassion and vocation by working via private agencies instead of the NHS.

Hunt doesn’t like this. I thought that was how the great god Market was supposed to operate, Jeremy? Otherwise, why are you privatising NHS Professionals? This is the public, in-house staffing agency which makes a profit for the taxpayer. Why, you could even develop it, drive those agency costs down with another nice bit of enforced competition (see Health and Social Care Act for how that works, though it is rather expensive at £5billion a year from the NHS budget just for competitive tendering).  I’m beginning to wonder about Hunt’s brain. Surely blind adherence to dogma and an utter disregard for logic precludes such high office? Hunt is certainly having the kind of effects on the NHS that his tumour namesake continues to exert my own life. The things he’s made me do.

The nurse shortage was highlighted by a newspaper report the other day and it’s a key area of concern not least bearing in mind Hunt’s inexplicable decision to stop nursing degree bursaries and replace them with tuition fees and loans. But the whole story is far more shocking than that.

This report raises a host of relevant issues. The Migration Advisory Committee has recommended that nursing should remain on the shortage occupation list allowing non-EU nationals to be recruited from abroad. It also argues that that the Department of Health (DH) and the NHS failed, with no good reason other than the perceived need to save money, to create enough nurse training places.

It’s estimated that 9.4% of nursing places in England are vacant; and there were 17% cuts to nursing training places under the Coalition government which was a “significant contributing factor” to the current shortage.

The NHS training body Health Education England wanted to commission 3,000 nurse training places in 2016/17. But as a result of “funding constraints” it only commissioned 331 – one tenth of what was needed.

The MAC report concludes:

“It is clear to us that the current shortage of nurses is largely of the health, care and independent sectors’ own making. They did not learn the lessons from the late 1990s/early 2000s when a similar shortage (and reliance on foreign nurses) occurred. Almost all of these issues relate to, and are caused by, a desire to save money. But this is a choice, not a fixed fact. The Government could invest more resources if it wanted to.”

Then a quote from a Department of Health spokesperson:

The Department of Health is “delivering on our plan to train more home-grown nurses”.

What? Could anyone in possession of any of the facts, or indeed a functioning brain, say anything more utterly stupid? It’s no wonder everyone was asleep till the budget woke them up.

Unfortunately, yes, they could. I’m not even going to let you guess who said it:

Hunt in the BMJ: “We’re reforming the funding of nurse training in order to make sure we can afford to train more nurses.”

I suppose he’s referring to his aforementioned plan to replace bursaries for nursing training with loans and tuition fees; bursaries that allow many older people with valuable life experiences to train as nurses, at a time of recruitment crisis and shortages. A policy that will not only actively discourage, but will effectively prevent, many of these people who have families and limited financial resources from training as nurses Hunt has also acknowledged that staff planning has been lacking in the NHS for decades. Yes, it has. So at what point since 2012 when you took over as Secretary of State for Health did you consider actually doing something about it Jeremy?   Bravo Mr Hunt indeed.

And behind all of this of course is Mr Hunt’s big push on safety. Safe staffing involves having enough suitably qualified staff, and the Francis and Berwick reports into the Mid-Staffs failures specifically address this concern and recommends NICE  – an independent body – to undertake the review. Jeremy liked this, because it allowed him to batter nurses over the head with their lack of compassion and vocation, and their silly pretensions at understanding how to manage the complexities of modern medicine, surgery and technical equipment when they’d be far happier floating up and down with lamps and starched hats, porting flannels with which to transfer pathogens onto fevered brows. Except that the actual evidence might result in the need to actually produce real qualified staff rather than imaginary ones and having to pay them to boot, darn it.

Enter NHS England, the body set up to run the NHS after the Secretary of State for Health was absolved of that little responsibility by the Health and Social Care Act (2012), the one that officially made the NHS no more. (You might have missed that too.) They decided, before the Nice report was published to take over responsibility for the research themselves. Now you might wonder about vested interests versus independence, you might wonder about standards of evidence. You might wonder at NHS England’s their lamentable budget and plan to save £22billion more in ‘efficiency’ savings despite the parlous state of NHS trusts’ finances. You might have predicted that the DoH would withold the NICE information under Freedom of Information. But nicely, NICE then decided it was in the public interest to release the information later, and you can see their reasoning here.

There are many examples of government tactics to avoid answering difficult questions; they’ve reached a level where debate is not happening because spin is automatic, it’s reported often without question in the right wing tabloids and broadsheets, misused statistics are stated as fact, significant evidence is buried in favour of cherry picking from often discredited research (the NHS Risk Register has still not been released).

One of the nastier methods involved the Prime Minister’s repeated use of his late son Ivan’s disability as a means of blocking debate on the NHS in parliament because this proved his love for the NHS. The Camerons must have been through hell, and nobody can argue that they didn’t do their very best by Ivan. They didn’t hide him, he was clearly deeply loved. Yet their experiences are always mitigated by wealth, by the ability to set up a converted basement at home to care for their son. Cameron used Ivan as emotional blackmail to get out of answering questions about his intentions for the NHS. The Camerons’ is also not an experience made more harrowing still by the bedroom tax and the government fighting a High Court decision arguing the bedroom tax discriminates against disabled people by challenging some of them in the Supreme Court.

The NHS is an now a collpasing omnishambles, to borrow an ill-fated phrase from an ill-fated leader; one created by government policy over the past fifteen or so years that introduced the internal market (those fundamental conflicts of value systems between the human and the financial again) although Labour at least invested money and our NHS ranked highly among health services in 2012. Since then, the coalition and Tory governments under Cameron have destroyed it. They haven’t asked us what we want, they’ve lied, been caught lying, continued to get away with lying to us and to each other. Many of the staff in the NHS have no idea what the Health and Social Care Act did – which is laid the foundations for privatisation while burying the bodies of pitfalls and costs beneath the foundations of their spin flyover. It’s time for the government to take responsibility and do the job we are paying it to do, while telling us exactly what that is.

Finally, I couldn’t resist adding this piece from Conservative Home in full. I’ll let it speak for itself. At least the author is honest.

The Government’s dispute with the doctors’ union continues to escalate, with junior doctors preparing to hold the first full walkout in the history of the NHS.Writing in the Daily Telegraph, James Kirkup gives the recalcitrant medics a warning from history. He warns that the BMA is repeating the mistakes of the National Union of Mineworkers, over-estimating the nation’s dependency on their members.

That Britain’s economy could survive without British coal was unthinkable, right up until it wasn’t. Kirkup argues that technological progress and competing models of provision mean that our monolithic state healthcare provider may soon find itself similarly outflanked.

But whilst that might be true, it is by no means certain that we have reached this point now. For all that Arthur Scargill’s attempt to topple Margaret Thatcher is the stuff of legend, it shouldn’t eclipse the fact that there were plenty of miners’ strikes before that final confrontation and the miners won most of them, enjoying public sympathy as they did so.

Jeremy Hunt could end up being a modern-day Margaret Thatcher, bringing truculent trades unionists to heel and unleashing modernity on one of the UK’s totemic industries. Or he could be Edward Heath.

As Simon Jenkins points out in today’s Daily Mail, public support for the NHS is currently bulletproof. This makes it incredibly hard to reform: in fact, the public health lobby have convinced many politicians that it is easier to reform the public than to make a serious attempt to reform public services.

“Cost to the NHS” is thus one of the main pillars of modern drives against smoking and obesity. But setting aside any liberal qualms we might have about that, it isn’t clear that this represents a viable long-term solution.

Anybody who the state ‘saves’ from a tobacco or food-related death will still die of something, and the NHS will pay for it. If that person is forced to live a long life then they will likely end up costing the NHS far more than they would had they died younger – the increasing ability for medical science to prolong our senescence is by far the greatest structural challenge the service faces.

Treating expenditure on smoking and obesity-related health problems as money that can be straight-up saved, without accounting for the inevitable transfer of the burden to other parts of the health budget, is therefore extremely disingenuous.

Assuming that we can’t force people do be so healthy that we can afford the NHS, we’re then still confronted with the need to reform it.

It may be that needless deaths caused by industrial action lead to a dramatic sea change in popular attitudes, but as it stands we’re a long way from a place where “wholesale reform via head-on confrontation” seems likely to work, even as a last resort.

Rather, Conservatives should have a long-term, strategic vision for healthcare reform which involves the piecemeal adoption of decentralisation, liberalisation and modernisation in doses the public will tolerate.

Obviously there are a huge number of things this could involve, and Party policymakers should canvass widely for proposals. But when it comes to tackling the outdated and overweening influence of militant unions in the NHS, here are two suggestions.

In his article, Kirkup mentions “the George Washington University study that estimates 85 per cent of a typical doctor’s work can be done perfectly well by a “physician’s assistant” with a fraction of the training or wages.”

If that is the case, perhaps one way to increase staff supplies in the service – without resorting tocontroversial over-dependence on foreign nurses – would be some form of ‘Territorial NHS’, or Health Service Reserve, modelled on its military counterpart.

Volunteers would receive pay, training, and legal rights to take time out of their ‘civilian’ life to work for so many weeks of the year in the NHS. This shouldn’t be impossible: the Armed Forces reserves already offer recruits the opportunity to train in a huge range of technical skills.

A larger, flexible pool of ‘physician’s assistants’ would reduce the NHS’s dependence on full-time professionals. This would not only ease immediate wage and staffing pressures, but make it easier for management to respond to future shifts in demand.

Like any nationalised industry, one of the major problems facing the health service is its need to predict future demand without the aid of psychics. The long training current staff require makes it impossible to rapidly adjust to unexpected demand (without importing labour, that is.)

A ready pool of capable staff, which can be topped up relatively quickly, could thus plug gaps as they arise and make it easier to do that with British personnel.

Given public affection for the NHS, and the esteem in which its staff are held, there’s no reason to think that recruitment would be impossible.

The other way the Government could clip the BMA’s wings would be to diminish their capacity for strike action.

One could approach this task in at least two ways. The blunt-force approach would be to declare doctors, at least, to be one of the essential professions – such as the police and the military – whose members are forbidden to strike. If the junior doctors keep up their current antics this may well become politically possible.

But another way would be to step up the decentralisation of the NHS and make hospital trusts legally-distinct employers.

At a stroke, this would bring the public sector into line with the private by making politically-motivated, industry-wide strikes impossible.

This is because, with sympathy strikes and secondary picketing illegal, trades unions can only call strikes over a specific grievance with an individual employer. In the private sector this has led to conciliatory, service-based unions.

But because all public sectors workers are ultimately employed by the Government, they have been spared the effects of this legislation.

Making hospital trusts independent would not only mean the end of the national strike, it would also yield other benefits. By employing staff on private sector terms such essential and sensible reforms as locally variable and performance-based pay, as well as rational, private-sector pensions, would be as irresistible as they have been in the private economy.

Faced with an incentive to innovate and reduce costs, some trusts may even start to innovate with things like the “production-line” surgical hospitals pioneered by Devi Shetty – channelling the savings into other areas.

It would also mean that in the event of a dispute at any trust, the Government would not be on one side of the table, under political pressure and with the easy out of simply paying up from taxation or borrowing.

One day, the BMA will have their 1984. But it would be complacent to assume that this is it, or that bloody-mindedness alone will bring it about. Conservative strategists owe it to themselves, and to the country, to lay the groundwork properly.

 

PS Henry here describes himself as ‘centre-right’.

 

NHS finance whistleblower

This document from a whistleblower NHS foundation trust finance director says more than I can about both the NHS trust deficits and how they are being managed and fudged under duress by the DoH. I don’t profess to understand all of it, but there’s enough here to scare me. Note the there’s no money for public services point too.

Alongside the financial content, I wonder why this man is afraid of being exposed as a whistleblower in Hunt’s NHS?

Here’s the statment on the Plymouth deficit.

 

Severe operational stress

IMG_2771I feel shredded. I was fuelled by anger on Friday, an anger I could not fully express to the equally upset staff at the hospital who are powerless to do anything about the situation we are all in.

I’d become dehydrated and felt dreadful as I’d had nil by mouth since 10pm on the previous evening, and my op was finally cancelled at 1215. I ran straight into the Spotlight interview fuelled by a pint of water and cheese and biscuits that I could barely swallow.

After the interview came a kind of emotional entropy that led to the sucking presence of a black hole. Chaos in my head as I wondered what to do, how I’d get through another weekend. Had I known the op was off before I’d got there, had I not met my new friend and been hit by her dreadful predicament, I’d perhaps have been able to prepare for it, plan some treats. I couldn’t cry even. And still no dreams, a kind of blank.

I’d half watched Lucy Hawking talking about her children’s book on breakfast TV in the bay at Fal; a boy asks Stephen Hawking: What will happen to me if I fall into a black hole? You’ll be turned into spaghetti! Stephen replies. That thought continues to echo over the weekend. I feel like spaghetti.

Yesterday (Saturday) I woke as usual at 3am, and read through Facebook. I couldn’t access my writing brain at all. I could barely stand in the morning; a weird internal tremble, a fine quavering drizzled from the point on my neck which marks the base of Hunt’s physiological and psychological presence. I laid down and managed to doze for a while after breakfast. I’m playing music, and have latched on to Adele’s new album, and an old Anthony and the Johnsons’, both of which connect emotionally and seem to calm me, but without blasting through my feigned equilibrium.

Plum and her daughter and I walked slowly on the moors to Wistman’s Wood in the spring sunshine in the afternoon, before retiring to the Two Bridges for a cream tea. It was lovely to see them, and to be outdoors, to chat with a ten-year old. I had a couple of wobbles but stayed upright, all through the slightly blurred vision that lends a kind of 1980s US soap flashback atmosphere where Bobby Ewing emerges from the shower having been apparently dead for the last two series…

Today (Sunday) Bun and I went to Plymouth’s Barbican and the Hoe with a couple of paramedic friends and had a lovely lunch and a big catch up. Of course the topic turned to the bed situation at Derriford.

Our district hospitals, in common with their cancelled surgical patients, are all under severe operational stress. It’s a constant, especially over winter where illness is more prevalent both in the community, and in the staff.

One point became clear today as we discussed it. When a crisis hits, the hospital trust implements a system of alerts that trigger certain actions to alleviate the immediate problem. But that’s not what’s happening, because the problem cannot be alleviated by the measures available. Bottom line – high alert states are not sustainable as a matter of routine, because once implemented there is simply nothing more you can do to further relieve the pressure.

This state of affairs has been continuing for weeks and months at a time, on an annual basis. The trusts are almost all in financial deficit and missing targets  and it’s worsening rapidly. So they are losing money with hundreds of operations cancelled, and with no way of addressing the fundamental causes of the crisis which, while varied and complex, come down in the end to not enough money in the NHS and not enough beds, and swingeing cuts to social care which compounds the situation.

(When the government says social care is down to councils to fund, they fund the councils and have cut their budgets by 35% since 2010.  When they talk of billions in bail outs for councils, they are talking Tory councils only. In any case bail outs are too little, too late).

This document from the Royal Devon and Exeter Hosptial (RDE) shows exactly what kinds of pressures are placed onto the services – and the staff – and explains in detail exactly how the pressures arise and how little can be done to sustain this level of crisis management – because that’s what this is – crisis management, resulting in the failure of the core functions of the hospital and its inability to meet such vital patient services as cancer waiting times, another of Jeremy Hunt’s alleged concerns. And the money they do have for surgery and so on is going down the drain.

It’s worth noting here that RDE is smaller than Derriford which is also the major trauma centre. If anyone can point me to Derriford’s equivalent document I’d be most grateful.

One common excuse for such crises are high numbers of elderly living longer. So where, in an area where people come to retire into the vast new housing developments, the Macarthy and Stone type buildings, are the commensurate extra resources? Without some joined up thinking and long term planning, we are sunk. Our hospitals have been struggling for years with this race to build while we allow the whole system to lurch from crisis to crisis. When I worked in Torbay just a few years ago, it was routine to find five or six ambulance trolleys with patients queueing up in the ED corridor, waiting for cubicles to become free. That hospital was already overwhelmingly too small for the burgeoning population 15 years ago.  At that time 65% of the Torbay population was over the age of 65. Many of those have no support network because they’ve left it behind for a dream. I met one woman, in her late 60s, whose husband had become ill shortly after their long-planned move to the seaside. I’d been sent on the car to assess, and as we waited for an ambulance to take him to hospital she told me their story. He was dying, and had been for the year the’d lived in their lovely home. She’d been stuck, unable to join the clubs she’d meant to join; she missed her friends from home and her family desperately, but hadn’t expected this to happen. She told me she’d decided to knock on her neighbour’s door, try to find a friend close by where she could pop in for a cuppa now and again. The neighbour opened the door: ” We don’t socialise” she said, and slammed it in her face.

And if it’s not the role of government to plan for this, to have a long-term strategy, then what is their role? Blaming the crisis on the elderly?

The NHS needs money, now. It needs beds and staff. Instead it has a Secretary of State in Jeremy Hunt who has busied himself with the white elephant of a completely uncosted, routine 24/7 NHS  while he attacks and alientates the front line staff. Meanwhile the NHS truly 24/7 system, the one that picked me up, diagnosed and planned my urgent treatment so efficiently and compassionately, is unable to carry out its plan for me. It has the resources, for which it is paying; the expert staff and the theatres. Yet these cannot be used for the want of beds. The entire system, based on clinical priorities, has collapsed in a catastrophic haemorrhage of money and lives. My tumour continues to grow.

Hunt is cutting nursing bursaries when we have too few nurses. He is discouraging the mature nursing students with life experience and most likely preventing many of them from entering the profession because they won’t be able to afford it. Doctors are leaving in droves as he tries to force unsafe practices on them while the hospitals collapse.

Hospital trusts have to say this too. Look at the apologies and excuses. It’s not their fault. But for goodness’ sake tell it like it is for once, stop covering for this government which is letting us all down.

I am under severe operational stress. I’m on Black Alert.  I woke at 2am, and I’m still here writing at 0622. What if I don’t hear today? What if it’s another week like the last two? I was warned.

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.

 

 

 

Help and Operation Hunt Saboteur

One of the most important pieces of advice I was given just two days after diagnosis came from my Macmillan supporter, who suggested I should ask for and accept practical help. It’s grown in a way I never envisaged, through my IT guru – who comes with a leg-shaving guru – to lifts for dog walks, to people dealing with admin concerns that I can’t get my head around.

These acts of friendship and kindness, together with visits and messages and calls and thoughtful gifts, have done more than anything to keep me going through a hideous time of fear and general shite, worsened by feeling fairly horrid most of the time. Little things to look forward to allow me to make it through to the evening, then the night. I also have a swimmy patchwork blanket under construction which I think will be visible from space (more on that another time).

Money, however, was has been an overarching concern. One friend has already helped me more than I can say with a loan, topped up without asking the other day. Then I had a call from Plum saying that various people had contacted her about helping me out in a practical way by donating money to a fund. I felt I’d begged especially because I’ve blogged about it, and refused. Plum being a formidable opponent in a debate on almost any topic (Burgh Island Hotel too expensive? You’re doing me a favour, been wanting to go for 20 years and never had an excuse), talked me round to her way of thinking, which is that people want to give me money and it makes them feel better too; it’s something I’ve done myself, and till recently when I could no longer afford it, I’ve always given a monthly sum to several charities. I know that makes me feel good, and feel that where I can’t do much personally about a situation there’s someone out there who can and they need that money. Then there’s the thought that maybe you could do something, but by handing the money over you don’t need to bother, it calms your conscience. There’s also something about accepting financial help from people you know, (and in this case some people you don’t) based on an illness with all that potential for emotional blackmail, that I find extremely problematic. My decision to blog, warts and all, felt like a part of that impetus.

Eventually, Plum made the point that if I didn’t agree to the fund, cheques were going to start arriving through the post so I might as well give in, let people help me, and make all of us feel better. I capitulated, with the stipulation that if everything by some miracle turns out to be okay, I will return what I can and give the rest to Macmillan.The fund was set up, and it produced an overwhelming response of donations and lovely messages that I could barely deal with. I couldn’t answer the phone to Plum because I couldn’t speak. Not everyone has money to spare, and I worry about them feeling pressure, and I’m sure some people have gone without on my behalf. But the relief of knowing I can cover the bills and not worry about cashflow for a considerable time is impossible to exaggerate, even for me… So thank you for removing that deep worry, and thank you for the big and little acts of friendship which play a vital role in my ability to swim on through the tons of nasty plastic in the sea.

Poverty is on my mind in other ways, not least because I know I have people who can help me, while, many in my situation have neither the resources nor the emotional support. I read some fascinating research on the effects of a severe scarcity of a resource, whether that’s food or money, on decision making. I won’t go into detail here now, but do read the linked article. It’s the reason I bought a bottle of wine on the day in December when I’d just lost a whole load of online marking and any hope of paying the bills. And it’s the reason for giant tvs, pay day loans and fags when you’re out of work. Note too that there’s a government group studying this – so why the hell is the government ignoring their own research?

Yesterday they forced through a cut of £30 per week to a particular form of Employment Support Allowance (ESA) that will affect disabled people directly. Apparently this cut will ‘incentivise’ disabled people to find work. The impact assessment has not been carried out, and the Lords were going to insist is was before reconsidering the legislation. The government used their financial veto to overrule the Lords. My own MP Geoffrey Cox, and Jeremy Hunt, were among those MPs who voted this through, as was Dr Sarah Wollaston, a Tory MP whom I had met in a professional capacity a couple of times in her work as a GP, and for whom I had a great deal of respect.

So, with no evidence whatsoever, the lifeline of financial support for a highly vulnerable group of people has been removed. I can tell you categorically that this nasty, ideologically based (I can’t help but see arbeit macht frei over the gates of Nazi concentration camps) persecution of members of our society will cost all of us in the end; it will cost the welfare of the individuals involved, and it will cost the ambulance service and often the police who go in to pick up the pieces, and the social services already in crisis because of six years of cuts, and the other NHS hospital services and GPs who are trying to manage the complex health conditions that arise, time and time again, because of poverty.

Poor people need help and support because poverty is the cause of their problems. Disabilty causes poverty – try getting a living wage job when you’re disabled (yes, I know there are exceptions, just as there are a few people in parliament who aren’t men). Poverty is not a sign of some inherent personal failure, some genetic or welfare state-induced predisposition to workshyness and fecklessness. Poverty is the cause of it. And to refuse to even assess the impact of such a cut is quite simply criminal.

My friends are wonderful and I truly believe that most people would behave decently if they were in a personal interaction with the focus of their hatred and disgust. Thank heavens I don’t have to rely on the government to support me.

Our regulars as paramedics are the people who suffer from long-term, chronic illnesses, and whose longevity is reduced accordingly by poverty. Some of them are chancers, but why are chancers who are wealthy accepted while those who are poor are not? You survive how you can.

I also received yesterday a letter from DWP, who have at least stopped referring to my need for a Fit Note, and who now want a long work-related assessment filling out to check whether or not I might be able to work at all. Now I have trouble writing at the moment. I can’t control a pen all that well. I don’t know what treatment I’m going to have, nor how it will affect me, till I’ve had the surgery so I can’t tell DWP what they want to know by next week, or my benefit might not be paid.

One more stress, while the government assumes I’m faking till I prove otherwise.

Clearly it’s a travesty that I’m asking taxpayers to support me in my time of need. And some of the taxes I’ve paid over the years have gone to clean MPs’ moats and redesign their duck houses, and pay their 11% payrise last year, and the 1% this year. The welfare state is insurance, insurance against the crappy hands that life deals some of us. Its value is not financial, its value is as a service that doesn’t hound people like me, or add to our already stratospheric levels of stress. If you don’t need it ever (and research shows that most of us get back more than we pay in to the NHS over a lifetime), then brilliant. You don’t expect to get your car insurance back if you’re lucky enough not to crash.

Do I happen to know all the nice, caring people? Are others really that horrible in real life, that they could look someone in the eye and believe that this person deserves to be persecuted and live in penury because a load of super-rich bankers got even more greedy and stole all our money? How have they managed to blame it on those of us who have the bad luck to have hit the bottom?

I wanted to write about a couple of families I knew but with Operation Hunt Saboteur imminent (Friday) I’ve had other commitments to deal with today. So this post is rather ranty, and less personal that I’d wished. I hope you can forgive that. It’s a day of random emotions and no little relief, but also one of anger at what’s being done to our NHS. It’s day one of the junior doctors’ strike. I’m with you, junior doctors.

 

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.”