Op Hunt saboteur: going under

Where’s my pyjama t shirt? Mum’s ironed one pair of spotted pyjamas she wants me to take but, I never iron pyjamas. I don’t like that horrid little girl pink of the t shirt, nor the little girl hearts on the bottoms. What’s that about? Will the t shirt go over my head after the op?

Have I got a sore throat? I feel a bit chesty too, maybe a cold. If I say nothing will it be okay? But of course I’ve been feeling like this since October, that getting a cold ache and tug as I inhale. Nothing new.

Washing my hands I think of bugs on the towel and grab a fresh one. I used the phone, that must be crawling with microscopic life. I go and wipe it.  Infection control training, a necessary annual annoyance at work, does stick. I was always careful at work of course, primarily because you’re routinely making interventions such as intravenous cannulation where you can introduce pathogens straight into the blood stream. There are also many immune compromised people, and it’s easy to start spreading their nasties to others. But it’s only in the past few weeks that this concern has built into my own life now I’m taking steroids which makes me more liable to infection. I grew up outdoors, covered in mud, drinking unpasteurised milk often straight from the cow. I take the view that we all live in balance, including with the microbiomes that live within us. But not today.

Mum keeps asking have you got your…let me get that, don’t do that I’ll do it… my inner crocodile appears. Bun aka Sausage is most upset this morning. She knows.

There in the back of my brain, is the tangible presence of my tumour, the knowledge of the op, the potentials for what Hunt will turn out to be… but whatever that is, it already is. It’s just that I don’t know who this bogeyman is, what he’s  doing to do to me later on, whether he’ll leave a lingering whiff of aftershave or a large spillage and nothing will get rid of the smell.

I want coffee, I want breakfast. At last it’s 10 o clock and we leave. Back onto Fal Ward, same bag, same label, enhanced sense of dread. Will they cancel again? Finally I get the call to change and head up to blue bay. It’s less busy today. I’m trying not to think about the B word. My anaesthetist flies up. He’s L, a pony-tailed hippy doctor, and we have a chat about the anaesthetic and he explains in detail that he will be asking me to wake up and to consciously make the effort to  breathe at the end at which point he’ll remove the tube. I like detail, and feel reassured.

Finally, I get my HCA with a folder, the final sign that it’s going ahead. He runs thought the last minute bits, name check, allergy check, date of birth, signed consent form. No danger of some imposter getting my op today, I’d probably kill.

We start our walk to the theatre waiting room. There I ask them about the cancellations. Many of the people leaving the NHS at the moment are the experienced staff, and staffing is as much a problem as the beds themselves. It’s the same in the ambulance service. Only the young and fresh can keep with the pace and the relentless pressure of under-funding and under-staffing; the whole resourcing issue that is the end result of so-called ‘efficiency savings’, known as ‘cuts’ if like me you can speak plain English.

Mr Fewings my surgeon bursts through the door and hurtles past from the previous op; he’s gowned and wearing a rather up-market embroidered St George’s cross theatre cap.

“Morning young Roper! I’ll be back in a minute to do your op!”

“If you don’t I’ll shoot you.”

“My wife’ll probably do that for you.”

The HCA and I are called and walk to the anaesthetics room for Theatre 6. Lots of kit, my HCA, a theatre sister, D, who likes to swim in the sea, and C the anaesthetics registrar who I discover has had an interesting career path including a spell as a GP. He’s wearing a gown in a particularly fine shade of blue, another good sign.

C is going to start by inserting an intravenous cannula. I don’t even feel it, and then notice it’s a grey, wide bore, into my hand. Any paramedic would be impressed by that. Next, however, comes an arterial line for instant monitoring of my blood pressure during the surgery. This goes into the radial artery in my left wrist. A stab of fear. I don’t mind needles usually. My left hand still isn’t entirely sure where it is, and there’s a period of struggle where I’m failing to hold my arm or hand in the right place before I remember that thanks to Hunt, while I might think it’s in one place, it’s most likely not. So I end up with a board to put my arm on.

The arterial line presents some problems because I have a small and oddly-angled radial artery. C uses more local anaesthetic each time, but I’m fretting about it, feeling afraid of the next stab although it’s perfectly bearable. More displacement fears, something to latch onto in a physical sense. After a chat with L, C tries again using ultrasound. I begin to get that faint feeling, the sicky ugh. I can hear them discussing it, it looks to be in but isn’t. I ask for a couple of minutes to get over it, which they give me. D talks more about the sea to distract me. At this point I discover that L likes to swim under the full moon at Crazywell Pool, one of my favorite wild swimming spots on the moor. I’ve got the right gang in here; but I’m still really fretful. I hate it.

L takes over the arterial line as he explains to C about the planes of the artery. I think back to all those intravenous cannulations (into the vein which is far less complicated than this) where you miss, and start to lose confidence. I had one period as a new paramedic where I felt I’d never get one in again. Then whop, in goes a difficult one, and your confidence returns. You start to feel them in three dimensions. Noddy stuff by comparison of course.

We’ve now been almost half an hour; it’s 1 o clock. I’ve enjoyed chatting with the team as they distracted and tried to relax me. It’s a new experience for me to feel so anxious about things like needles, the minor transient ache-pains that I know I have to go through. It’s just today I don’t want to. I don’t want to be here, but I know I must.

And then the atmosphere turns as L switches into professional mode to get me anaesthetised. The padded mask, quite claustrophobic and I can’t feel the oxygen coming through. that horrid curry-sauce scent that reminds me of Scottish vomit (x pints o’ Heavy, chips and curry sauce being the most usual stomach contents encountered in the pool hall I used to work in as a student). Why do masks smell like that? I take deep breaths, in and out, in and out, oxygenating ready for inubation.

The hiss of gas, the curry still, D’s face, L looking at me, his green cap has a dangly back for the ponytail and bobs wobbles as he talks; the motion is like the dippers bowing and bobbing underwater in the Tavy. The plastic insert in the ceiling pulls me, concentric circles in white. There you go Lynne…

IMG_2708

 

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Negative positivity

I’ve been thinking about positivity a lot recently. It feels good to have positive vibes heading my way from all directions. Yet positivity is also a kind of scourge of our age.

The expectation of a positive outlook can exert a huge pressure onto a person like me, who is in a situation where life is literally subject to the whims of fate. Positivity given is always meant well in my experience, but how often it has the opposite effect. I tend to be positive, to take positive – if not crusading – actions. But sometimes I want to scream, or lie on the floor and give up. That starts to feel like a failing when you’re being held up as a paragon or an amazing person for getting on with it in whatever way presents itself. If that involves three months of crying constantly, then I don’t have a problem with that. It might even be a positive act.

I know I’m lucky; lucky to be able to write and to have found a wonderful writers’ group in Stirling where I attended the university as a mature student in the 1990s. The writers at the local, council-supported group were instrumental in the development of my style and interests. One of my favourite quotes on how to be a writer is from the late, great Maya Angelou whose writing I first encountered via the group:

“Some critics will write ‘Maya Angelou is a natural writer’ – which is right after being a natural heart surgeon.”

It’s being able to write, and being able to adapt to the brain swelling-related deficits in that area, that’s enabled me to keep going with my head pretty intact through the trauma of the past few weeks. It’s also given me a purpose where the various elements of my fairly random life path have melded into this blog.

One aspect of dealing with the big C word is the power that word holds; I described it as a Jihadi snuff movie in an earlier post. Having already had breast cancer in 2010/11, this isn’t a new experience. There are plenty of other illnesses that are equally or more life-threatening, yet they don’t carry the punch; If there’s a disease of the age, cancer is to us as TB was to the Victorians. However, considering a brain tumour is quite another thing. It’s affecting me in a way that breast cancer never did (I didn’t even know that was there), because it’s messing literally with my mind and also my body. I feel ill.

When I was on the speedily efficient pathway towards neurosurgery at the start, I had a momentum. That came to a juddering halt two weeks ago when the meteor of the bed crisis walloped into my path, cracking the earth beneath my feet and setting up a series of tremors and reverberations that continue to circle. Circling is not what I need, I need a positive pathway towards discovering the nature of Hunt and then a treatment plan. So to be hit by the arrows of mindless positivity really does grate at the moment. As does being told how well I look. It’s the steroids. I neither feel, nor am I well.

Hunt the tumour made himself known as the steroids reduced the surrounding swelling which had caused me so many problems over the past months.  I felt Hunt initally as a pliable, generalised right-sided entity, but now he has assumed a more weighty form. He’s curdled and crusted into a hard-edged, dark presence like a bakelite light switch. His carapace still wobbles at the back of my neck, but I can feel him exerting pressure and the focus of my headache is there. Worse I can feel him growing. Little prickles, an outwards force from the centre. All in my head? Yes. But whichever way you interpret that, it’s not positive.

I’ve had to continue ask people to back away from messaging me, because I can’t connect with them at the moment.  While they’re all asking me not to reply, I feel bad not doing so. The utter desolation from Friday’s cancelled surgery meant that each kind thought and positive message made me feel more like Saint Sebastian, under barrage from ironic arrows as everyone tried to tell me it’d be alright. It won’t. So much love and support is what’s keeping me going, of course, but I can’t always engage with it because this is my world, and as Kari keeps telling me, it’s bloody hard, and it’s going to get harder. I like that. I need to know the worst too. I need to deal with that.

Addenda

Yesterday my cousin Sarah and heavily-pregnant goddaughter Kayleigh visited. We talked for hours about our childhood, and about Kayleigh’s baby and plans for the future. We also talked about some of the darker aspects of life. I’d call that a positive experience overall, with some balance.

My GP also called to see how I am, having seen the BBC Spotlight interview. My white cell count is slightly raised from the bloods he took last week, and so he wants to do another blood test this week in case I’m brewing an infection. Hopefully though it’s just the effects of the steroids. He has emailed Sarah Wollaston MP, who was a Devon GP and whom he knows, on my behalf. The NHS is still there for me.

I didn’t hear from the hospital which is beyond disappointing, and I got no reply to my calls, leaving a message on Tony’s answerphone in the end. After Friday, I think they owe me a call even if it’s to say, as I suspect, that this week’s not looking good either. My friend from Friday, however, texted and has had her new date confirmed, which cheered me no end. She also advised me to contact my Macmillan nurse to chase up what’s going on; Ellie had come to see me as I waited for surgery on Friday, but didn’t know it had been cancelled. I’d forgotten about Macmillan in the rush, because I wanted to get the surgery out of the way and it had been full steam ahead. I can also have some complimentary therapies there. So my plan today is to access some of that holistic support offered by Macmillan.

 

The theatre of cancelled ops

The little boy wants to know whether he can go to school yet; his Mum is waiting for her op too. She is clearly unwell and is distracting the boy, smiling at him. I’m sat, gowned up and pressure-socked, fresh from my meeting with the anaesthetist in which we have talked in great detail about how he will manage the vomiting I get post-surgery, and pain relief because I’m allergic to morphine. I feel reassured, and I tell him so. I am hopefully to be in the anaesthetic room for 0830 and the theatre for 9, although there might be a short delay as we wait for a bed.

Ah, the B word.

The time begins to slip by. Patients trickle into the blue bay (ready to go), and a couple of go off for their surgery. Gaggles of green-gowned theatre staff pass in the corridor, carrying notes. Interesting that it’s called theatre; I guess it’s because those surgeons of old used to perform operations in front of an audience. This is also a kind of immersive theatre, those little tableaux, separate yet in it together, wondering what the other is in for. There’s doubtless a dramatic template in our heads. My old ambulance boss, Dougie, once asked a doctor in the ED what was the most difficult part of his job; Holby bloody City was the reply.

So, we talk to our relatives or friends, half watch the BBC news, keep half an eye on each other. From time to time a surgeon or anaesthetist leads another patient off to make their pre-op notes. Nurses and HCAs, smiling and chatty, pop in and out and talk to people, bring pre-op medications. I’ve already had my paracetamol. I’m not worried, just glad to be on the way to knowing what’s what, tempered by the knowledge that in the near future I will know and there will no longer be room for that little miracle I’ve been carefully holding in a little pot in my head with lid screwed firmly down.

The little boy and his Dad say goodbye to the woman just down the row; the man clutches the top of her arm and squeezes for a couple of seconds, pulls her towards his chest. She smiles. The little boy, red school jumper (he loves the badge) and big winter coat, holding hands with Dad and walking away. I tell her how lovely the boy is, and we strike up a conversation. I have to ask her permission to talk about it here, so for now it remains between us.

The woman’s surgeon appears, asks her to come with him. She returns with a nurse who is visibly upset; her all-day surgery has been cancelled because there is no critical care bed. She knew when she saw the surgeon’s face. Her surgery should have taken place now, within a strict time-frame after the end of some other treatment. Now it will be another two weeks at least.

A nurse comes to tell me, at 1100, that there is a bed meeting just starting.  Someone will come and talk to me when the meeting is over. It’s been a slow, Hunt-like dawning, the signs and symptoms accruing into the jolt of knowledge that my operation is in jeopardy despite having been first on the list in theatre 4.

At 1215 a bed manager appears. We go to one of the consultation rooms.

“Good news or bad news?” I ask.

“Bad news, I’m sorry”. He shakes his head.

He is clearly wondering whether I’m going to be angry. I’m floating, having known this was coming, and a lump of something clunks in my chest. We sit, and I ask the bed manager where the problems are.

He is open, apologetic, a kind man.

There is a flood of medical admissions at Derriford, which does not have the spare bed capacity to manage. Social care of course is in crisis also and we are stuck. There are two emergency neurosurgery admissions including a trauma, which of course get the theatre slots based on their clinical need. This isn’t about patient choice, or a truly 24/7 NHS, this is about saving lives. There are a couple of more urgent cases than mine which have gone into another theatre; again, cases whose need is of a higher priority. Mine, and presumably some others in similar need, have been dropped.

“I could let you sit here all day and hope, but in the end there will most likely still be no bed.”

I should receive a phone call on Monday to tell me if there’s any chance of surgery next week; but that again depends on clinical need and the bed situation. I thank the bed manager and tell him that I don’t blame the hospital at all for this. I really don’t. There is one proviso, however – I’m going to blog about my decision to go to the BBC with what happened later, and Derriford hospital really must at some point come out publicly and explain the situation to all of us. How are we to know the real causes of this crisis when everyone is apologising and not telling it like it is?

As with all these issues, the picture is complex and nuanced. Yet here we are, with these poor staff buffering the ire of upset patients as they tell us that we can’t have our expensive surgery and that the surgical teams who want nothing more than to do a fantastic job and who’ve prepared and planned and explained, are now as angry, stressed and upset as we are. We had talked, the woman and I, about trusting our surgeons. I’d made the point that they’re all obsessives, immersed in their art and in their science, in their patients, in the planning and the discussions and the human fears. These aren’t people who are motivated by money.

What has this relentless financial framing of everything done? All the grand political speeches about efficiency and management and patient choice, and unaffordable costs to the taxpayer. We are told endlessly of the legendary effects of competition, enforced tendering (enshrined in the NHS by the Health and Social Care Act 2012), the driving down of costs. You can’t make a silk purse from a sow’s ear.

It’s resulted in a simplistic, self-perpetuating notion of efficiency and target cultures, a hogwash of corporate branding and a grand FUBAR of squandered surgery, buckets of cash effectively chucked down the drain. The waste of today is obscene.

It’s left people in dire need floating away on a tide of political spin and lies, blaming each other while the offshore hedge funds that are often behind ‘investment’ in our public services channel all our money away in order to fulfill their purpose in life – to make a profit, preferably without the annoyance of having to pay any tax. How is that good for patient care? Why this profiteering model and not one of social enterprise? Look to our tangled political culture of donations the vested interests for your answer.

The nurses offer me tea, a sandwich, biscuits. They say that the day case ward over the way is now a proper ward with 12 beds, in an attempt to up the capacity. But they’re operating on the edge, with no leeway, no resilience in the system. They think the hospital should cancel the routine cases for a couple of days, let it all breathe. They are upset, empathising. I go off on a rant. They tell me I’m allowed.

Meanwhile, in parliament, Caroline Lucas had sponsored the NHS Reinstatement Bill, developed over the past couple of years by Professor Allyson Pollock.  With a cross-party group of MPs in support (but no official backing from Labour – why not?), it was being filibustered by Tory MPs. Smug at their cleverness, waffling about deporting foreigners. They don’t like the bill, so they talk it out, all part of parliamentary process in which we cannot interfere; it’s a tradition, a religion even.

This link explains that we now no longer have an NHS. And we don’t. The bill was our chance to get it back.

So a challenge: venture from your grand Gothic theatre and sit here on our lowly stage, you puffed up parliamentary performers, makers of pig noises, and farters in the general direction of democracy. Join us, in the blue bay on Fal Ward, and watch the fear flitting across faces, listen to the conversations, the little jokes, the stories. Then account to me, and to my new friend, for what you are doing to our NHS and our democracy. We are angry. Come and sit with us. Come and look us in the eyes.

Incidentally I have yet to receive a response from Geoffrey Cox QC MP. I’m going to ask to see him in person. I’m going to look him in the eye and hold him accountable.

 

 

The dog formerly known as Bun

IMG_2701“Bun Bun! Come!”

I attempt a whistle, and for the first time in weeks manage to make a fairly piercing sound (thanks again roids). You’d never know, however, since Bun continues to hoover up rabbit poo on the far side of the field and betrays no sign of having heard me whatsoever. I try again.

Oblivious.

I pull the bag of sausage slices from my coat, and shout:

“Sausage!”

Bun comes bouldering towards me, 300m at full sprint, a polar bear after a seal. She skids to a halt and sits, head and ears perked and tail straight back, so I can drop the sausage into her mouth.

Honey Bun came to me aged 3 1/2 as the victim of a family breakup, loved but largely untrained and with little in the way of socialisation with other dogs. She’s now 9, and is well-behaved, loving and generally gorgeous, funny, tolerant of other dogs, but with a sniff and food obsession and high intelligence commensurate with her labrador and standard poodle ancestry. She sometimes needs a firm hand, as in this case, where usually I would go to her and make her come to me, then run through a few commands just to remind her who’s boss (?). She is trained through constantly reinforcing wanted behaviours, and then tailing off the treats so that the dog is never quite sure whether she will get one but thinks it’s worth a punt.

I have mentioned our worries about her during the period since December where she was clearly upset by the changes in atmosphere and the moving of things from one house to another, and over which I now know I was unwell. The result of this is that she’s been fed more treats and generally overindulged.  Yes she’s spoiled (another memory is coming to stay here for a night and telling Mum I didn’t need clean bedding to which she replied: “But that’s Honey’s bedding”; Mum had been making up the bed in the spare room for her with her own duvet, cover and blanket, each time she stayed which was often then, when I was working shifts).

When we discuss dinner, Mum will say “Honey and I are having liver”, or “I’ll get a pheasant out of the freezer for Honey”.  That’s partly  because we love our dogs, and partly because my farmers’ daughter mother considers dogs who live in veggie homes to be nutritionally and emotionally deprived. Yet Bun is still expected to behave and knows her boundaries.

M and M arrive and Bun is in the garden. M calls her to say hello.

“Bun!”

She blanks M completely. I tell M about the sausage call.

“Sausage!” she says.

Bun screams into the kitchen, cornering like Guy Martin, and sits by the fridge.

So, as an unintended consequence of my illness, the dog formerly known as Bun now answers only to Sausage.

I imagine similar stories relating to kids.

Beds and blurring

I’d tried to rationalise the blurred vision, and was still unsure about what to do by the morning yesterday. An optometrist I know had contacted me to say she’s never heard of cataracts developing that rapidly, and to get my visual field checked by an optician as the tumour could be affecting that so I felt quite reassured.

I decided on the GP, partly from knowing that Derriford would be in full Monday morning chaos sorting mode, and partly because while I want them to know I’ve developed this new symptom, it felt more appropriate to get the other possibilities checked out locally. Also, the only thing that would stop it if it is Hunt-related, is removal of the tumour which they are doing their utmost to arrange in the fallout from £4.5billion of cuts to social care to the acute setting.

I was given a duty doctor appointment for 1130, where I saw another excellent doctor I know mostly in a professional capacity from his work for Devon Docs. He worked through my concerns starting with the breathlessness and checked my chest (clear as I thought) and general obs. My eyes looked good, and I was able to see at the peripheries.

We talked about the situation, and I explained that I’m half thinking these symptoms are in my head in more ways than one, as I continue to circle with the two top choices between a primary brain tumour and mets.

He ran over the very many side effects of dexamethasone, and mine are there. So the doc’s conclusion is that side-effects are top of the list, but that we’ll exclude a few other causes so he takes some bloods to check for various other problems including anaemia which is another cause of breathlessness.

I ask him about the blurring and  its specific cause. He’s not sure, but suspects that it has to do with changes to the pressure in the eyes, which are filled with jelly-like substances called the vitreous humour and the aqueous humour. Seeing the shifts in fluid in my body, it’s easy to translate into small changes within the eye that begin to distort the vision so that made total sense.

The bad news there of course is that I need the steroids. All medications have unwanted side-effects and risks. They are given on the basis that the benefits in a specific situation outweigh those negatives. In my case there’s no question in my mind that being a bit bleary-eyed is preferable to the problems I was having over the past few weeks and even months. So I am going to have to deal with the blurriness, potentially for a prolonged period. Already it varies, but I’ve only had a few hours of being unable to read completely. Otherwise it’s like the period an hour or so after you’ve applied viscous ointment to an eye and there’s a thin film over the lens. It’s only really noticeable if I try to watch tv which I haven’t been doing much of in any case, though I did desperately want to watch Raised by Wolves. I have Radio 4 podcasts, a cd book from my friend L, and my music. M has set up my laptop to read text (while other M shaved my legs, though I probably won’t notice the hair now).

I called Tony my nurse late afternoon and left a message, but it’s feeling pretty bleak in terms of bed prospects. While the neurosurgery department have been wonderful in so many ways, I do have this one criticism about information. I understand absolutely the situation they are in, the frustrations, and no doubt the many other people who are in the same boat, or who have had their less urgent surgeries cancelled due to events beyond the control of the department. Magnify the way I’m feeling by all those people, and it’s a whole lot of stress. Might it be possible to provide some kind of regular update for those of us strung up and swinging in the winds of this bed crisis? Perhaps a daily phone call, or a message board on line, or an email, even giving a simple message of we still don’t know? That would make a huge difference to me.

One other momentous event happened yesterday, which was an overwhelming day all round. More on that later. Now I’m off to give Sausage her breakfast.

 

Bed blockers?

I wanted to say more about bed blocking because it is the tabloid headline phrase, the shorthand used to conjure images of elderly people waiting for places in nursing homes.  But it’s a lazy stereotype, and it’s one of the means whereby the concept of value in public services can be so easily reduced to one of finance and ‘efficiency’, and the so-called ‘difficult choices’ in cutting funding to the point where they collapse.

There are many reasons why someone might be in a bed which is needed for someone else. By definition it is almost always the case that such a person is also not having their needs met in an acute setting, because so many of those needs are pastoral rather than treatment-based. Their best interests might be to take them home with support; to take them to residential or nursing care; to begin specialist rehabilitation; to access specialist care and treatment centre for those with a particular acquired condition; or perhaps a hospice or other end of life care. None of those decisions will be straightforward, all will involve a multi-disciplinary team of professionals to assess and coordinate what’s in the best interests of the individual.

These are not decisions to be rushed. Where it’s clear cut, there should be the provision in the social care system to action the decision of course, and that’s largely missing. The halfway houses (community hospital wards being one vital resource that’s been decimated) are at best overstretched. In the meantime, a purgatory exists between the two systems of acute medical services with the potential for a level of recovery, and the decision to move to palliative care.

Imagine the complexity, the medical ethics, the emotions, the fading hope. I want to say that today, because I fear I’m guilty of a lack of sensitivity towards the many human beings, families and friends in that position. I’ve chosen freely to publicise my own thoughts and worries and to highlight the wider political implications, to have a mission. But how easy it is to casually trample yet another diverse and vulnerable group of individuals into the mud of a tabloid headline. These individuals are equally deserving of proper, well-resourced and funded care, and very often they are not getting it. They are also deserving of the time they need to negotiate the inherent web of emotion and conflict.

Action

On 11 March there will be an attempt led by Caroline Lucas MP, with support from a cross-party group of MPs to introduce the NHS Reinstatement Bill.

I’ve given the link to 38Degrees‘ page which has a further link for your MP’s contact details. There is also a link explaining what the bill aims to do.

If you’d like to do something proactive, might I ask you to contact your MP and ask her or him to support the bill?

You might also ask questions about cancelled operations in your area, and about cuts to social care and community and general hospital beds.

My MP has yet to respond to my points, perhaps because he is too busy earning his £460,000 annual salary as a barrister. But maybe yours will.

Thank you.

 

 

 

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.

 

Still no beds

I’ve still not heard about my op, and so I call Tony my neuro oncology nurse. He says it’s impossible to say when the surgery will be, as Derriford hospital has had to cancel 90% of its neurosurgery ops this week. I will hear as soon as there’s news, he promises, but it might well be next week now.

Bed-blocking is a key issue, and this is bound with 6 years’ of cuts to social care budgets and the concomitant increased pressures on district general hospitals who have to take up the slack. If there is no care there, and the community hospital beds have been cut repeatedly, managing frail elderly people becomes increasingly a case of shoving them into ‘spare’ beds which exist for acute conditions, surgery and so on. To have 90% of the neurosurgery in a top district center cancelled in a week is pretty devastating.

For my type of diagnosis, NICE guidelines state that I should be referred within two weeks of the diagnosis; this was easily exceeded and I saw my first neurosurgeon within 3 days, specifically because he did not want to leave me hanging around over the weekend without having discussed the plan. He (Mr Titus Berei) then called me personally on the Tuesday morning to tell me he’d spoken to Mr Fewings who is now my consultant. Mr Fewings saw me three days after that. So, nothing but excellence and compassion there. Ditto for the referral from my GP, which was done at 5pm on the evening of my request for an urgent appointment, and the full neurological assessment had been undertaken including all the scans and bloods by 5.30 the following afternoon in the AMU at Derriford.

Now, the guidelines state they have 31 days in which to start treatment, the first part of which is excision of my tumour. Until such time as this can take place, I have no histology, no certainty about what I’m dealing with, and no treatment plan. Imagine hanging there, swinging on gibbet hill, waiting for your neck to snap. Derriford hospital neurosurgery department was ready to smash that target too, were it not for circumstances outside their control, circumstances caused entirely by austerity, government mismanagement of the NHS over the past 6 years and swingeing cuts to social care.

That, bearing in mind my mental state, resulted in a surge of anger. Anger that the real story is not out there. Rage that this government continues to lie and spin and hide evidence and divert the blame onto Trusts for financial mismanagement, stopping bursaries for nurse training, attacking junior doctors over some ridiculous meaningless mandate for a ‘truly 24/7 NHS’ that was predicated on the willful misrepresentation of a report claiming 16% more deaths for those admitted at weekends which even the report’s author countered.

Meanwhile, notice how Jeremy Hunt and Cameron et al take no responsibility, ever, for their briefs. They are paid public servants, yet they are not accountable for their mismanagement of the NHS and other public services, it’s always Labour, or Trusts, or feckless poor people, or doctors, or nurses, or people expecting to be paid fairly for what they do. The (un-mandated read my lips no top down reorganisation of the NHS) Health and Social Care Act 2012 actually removed the responsibility of the Secretary of State for Health to provide free health care for the population. Are you angry? You should be.

Having spoken to Plum this morning, I had posited the idea of contacting my (Tory) MP, and she encouraged that idea strongly. So I dialled Mr Geoffrey Cox QC MP’s surgery in Tavistock and launched into a frighteningly coherent rant through lips which are today especially rubbery, and which I feared would simply degenerate into the tears I have yet to shed (because if I start to cry, I suspect I might not be able to stop).

I have asked several key questions, and made some very specific points about accountability, transparency of government, ideological actions and ignorance of, misrepresentation of or burying of evidence.

I have asked what is going be done to fund social care so that this type of nightmare no longer occurs. And I won’t take the £600k bail outs currently being handed out to Tory-run councils only as an answer to that.

I have asked why we have among the lowest beds per head in Europe.

I have asked how exactly government policy is aiming to deal with the current crisis and who in government is going to take responsibility for it.

I have asked for absolutely no spin or bullshit, nor devolving of blame; I have asked my elected parliamentary representative for straight, open answers on the situation as he sees it and the actions that his government is going to take to address them.

I have pointed out the stupidity of the 24/7 NHS in situations such as this. I didn’t mention the shambolic and pathetic attempts by the Dept of Health advisor the other day to explain in corporate business speak to a committee of MPs exactly how they had failed to cost any of the 24/7 NHS, nor to account for whether or not the £10 billion so-called bail out of the NHS included this money.

I did point out that junior doctors have my support, 100% (the strike next week might potentially affect my surgery too, but I’ll take that), and that this is not about money, it’s about saving the NHS from destruction prior to privatisation.

I warned Mr Cox to be straight, since as a paramedic I know what goes on, I know first-hand the effects of coalition and Tory cuts so he can’t fool me.

I pointed out that anyone can suddenly find themselves in my position – and that’s when you need the NHS.

I mentioned that had we been under an insurance-based system as in the US that I would most likely be sunk now (the least efficient, most expensive, and least equitable system in the world really only seems like a great model with which to replace our incredible, equitable, cost-effective NHS when you’re a politician with personal interests in giant private healthcare and insurance corporations, as numbers of our representatives of all parties are, doesn’t it?)

The NHS, still surviving after years of big investment by Labour, was still a great value system in 2014, but note the plummet to  28th in the world by this year. Now the spiral of crises in funding and beds is hitting terminal velocity; yet it’s not the government’s fault. Regardless of that, if I lived in the US, and if I had managed to get insurance, it would have been massively expensive and studded with exemptions to enable them to avoid paying my bills because of my past medical history.

The advisor I spoke to took the rant with good grace (and rather too many casual ‘okie dokies’ if he is, unlike politicians, subject to a performance review target culture) and is passing the information urgently to Mr Cox, who will be looking at the situation in Derriford, and then I hope addressing some of my policy points and – crucially – the social care crisis.

I’m still feeling rather calm, but it would seem I’m going to really need that shrivelling prayer.

Oh, and I’ve just posted off my DVLA form B1 and driving licence to voluntarily surrender it on medical grounds.