Friday, 22 January 2016

Not How it was Supposed to be…

The terror of Jeremy Hunt’s Monday morning meetings to review trusts’ debts and waiting lists forces managers to put satisfying the health secretary above patients.

Generally, I love the NHS, I really do. Specifically, I love the fact that it exists; I love its founding principles; I love the many saints that work there, pushing the limits of responsibility; I love what it can achieve, as an organization, when it works well. However – and you could see this coming, couldn’t you…? – I do not love how it frequently functions in the real world; in my real world; how so often it has let me and my family down – whether through its lack of realistic funding; its commoditization of patients (turning us all into market-oriented ‘customers’ or ‘consumers of services’); or simply the arrogance of those in command.

Seven years ago, my partner had a life-saving operation – which, later, the kindly surgeon told us, he believed she had only a small chance of surviving – because A&E had failed either to take her complaint of pain and illness seriously; or were just too rushed to bother; and had sent her home. I am fortunate – and selfish enough to appreciate it (despite the mind-body conundrum stemming from my inherent, lifelong socialism (and lengthy Labour membership)) – that, although I no longer work, because of my disability, my employer still provides me with private medical care: so the surgery was carried out, yes, privately. Otherwise, she simply would not be here. Obvious, urgent symptoms were ignored, disregarded, or just not noticed by those at the NHS hospital.

Similarly, after each of the three serious road traffic collisions that caused my disability, my attendance at hospital – and, after a long waiting period (“it’s only whiplash”) – was addressed with proffered, low-dose painkillers. Again, each time, I was sent home. After the last incident, my then GP – having, because of my obvious difficulties (and agony), sent me for immediate CT and MRI scans: which revealed serious damage to my cervical spine – ranted at the hospital involved: but with little effect. Again, it was private medicine – and a long series of complex, expensive surgeries – that saved me. At best, I would not now be able to walk (although it’s still an intense struggle). At worst, I would have been paralysed from the neck down.

It is yet another example of the NHS’s ongoing failure to provide deaf patients with information or dignity during their treatment while also denying them the chance to express their wishes and feelings….
     “He’s an intelligent man but in there they don’t value his intelligence at all.” They added.
     “He has his rights trampled on, he can’t express himself, he doesn’t know what’s happening and he’s left behind a curtain. Even if some nurses just learned the basics of how to communicate with deaf people that would make a huge difference but it just feels like it’s too much to ask.”

I have always, though, tried to give the NHS the benefit of the doubt; and – apart from the time I lived in north London – have often been rewarded with, at least, caring, thoughtful GPs (especially the rural ones: where care was more personal; more considered). Referrals to local hospitals, however – maybe because my condition is extremely complicated; and involves more than one specialism (a failing of the NHS itself, I believe – not everyone’s sickness slots easily into one category…) – have nearly always left me disappointed; physically worse off; or both. Much of my treatment – which basically consists of me coping with whatever my body decides is going to fail next – has stemmed from thorough research on my part being reinforced by my GP (and none better than my current one: who is as patient (sorry) an exemplar of the intelligent, knowledgeable, honest, kind-hearted, country doctor as one could ever hope for).

However, last year, the surgery where she works changed hands: it has new partners in charge; and seems to be morphing into the very (uncaring) model of an urban practice – with a real, demonstrable, lack of understanding of the skewed needs of the skewed demographic of its aging, rural population. For instance, being extremely hard of hearing (as are approximately one-in-six in the UK), I have always communicated with the practice through email (although, initially, I had to stress the making of “reasonable adjustments”, etc. to achieve this). That way, I can choose and format my words carefully, and attach relevant documentation.

Having an email address (especially for deaf patients) – according to Action on Hearing: citing their advice on Medeconomics – is also best practice. So, having read that article, I contacted my GP (as you will soon learn why, via Twitter):

Me Do you have an email address for patients like me? It appears to have vanished from your website!
Surgery we prefer patients to use the secure patient access app
Me When I have used this in the past, it has been hit & miss; also not useful for detail or longer messages. Email is simpler.
Me Just discovered a message sent in Jan 2015 that has no reply. Surely communication method should be the *patient’s* pref?
Surgery You can copy and paste your enquiry that you would have sent via email on to web version of the patient access app
Me I’m sorry: but that’s really poor. Did you actually read the original article? I don’t think you actually understand just what barriers are in place for those of us who cannot use the phone. I am deaf and disabled: and you are making life even more difficult: when I thought you were there to help/listen. Not happy; and seriously thinking of changing GP.
Surgery I gave simply advise to send electronic communication via the secure patient access app that is the same as typing an email
Me Is the word “care” actually in your vocabulary? This is *not* the way to talk to your patients.

In other words (although I accept that I – justifiably – lost my rag…), I am now instructed to communicate in an extremely limiting, difficult manner: which only allows me 450 characters; no formatting; almost no punctuation (“The only characters allowed apart from numbers or letters are full stop, comma and apostrophe”); no attachments; and is governed by a huge set of ‘Message Guidelines’ – including a prohibition of “sending medical information about your condition or treatment”. It is therefore cumbersome in the extreme. And not fit for purpose. Indeed, it has obviously been established simply to be convenient to the receiver – i.e. the practice – not the patient. (With only ten-minute appointments, it is hard to see how the patient’s needs are ever a driver for good customer care, though.) How am I – as someone who cannot use the telephone; and cannot always travel (I have probably cancelled more appointments than I have attended – due to ‘ill-health’); and who often is at my ‘best’ (my most conscious) during the night – therefore supposed to communicate; ask (scream, sometimes) for help; discuss my treatment? (In emergencies, my partner can telephone for me – but she does have to go out to work, you know.)

It is bad enough when commercial enterprises struggle to understand the needs of the deaf and disabled (therefore, of course, contributing to that disability) – but I find it utterly insulting that a public body meant to support my health deliberately erects health-related barriers in my way. Are my medical needs so complex that the practice cannot – or do not want to – help me? Or are they just so insolent that they – and by this, I really mean the partners who have instituted these new self-defeating decrees – believe they can dictate to a patient how they must comply with regards to their own (in my case, bloody awful) life?

In the entrance of the headquarters of the University Hospitals of North Midlands NHS trust in Stoke-on-Trent is a small plaque. “A patient,” it discreetly says, “is not an interruption to our work, [but] the purpose of it. They are not an outsider in our hospital, they are a part of it. We are not doing them a favour by serving them, they are doing us a favour by giving us an opportunity to do so.”

Currently, The Guardian is running an admirable four-week series, This is the NHS: stressing its advantages; its benefits; its successes – contrasting these with the present Government’s atrocious attitude to funding (completely in line, of course, with its atrocious attitude to anyone who is not stinking rich, like its own members). But where – asked one reader – are the “stories about misdiagnosis and poor treatment”?

Admittedly, both my parents owe their sight – and their ripe old age – to certain aspects of the NHS: but even these “successes” have been riddled with mistakes; with ignorance and arrogance:

“Your dad’s old: he’s therefore bound to be a bit forgetful.”
     “No, he’s had a stroke; and, before it, his mind was as sharp as a tack; he completes the crossword and sudoku every day; used to teach mathematics to A level; and, physically – well, apart from the arthritis that comes from a lifetime of cricket and football – is fitter than I am: by a long way….”
      I had to have a major, extremely public, shouting match – way beyond my normal, reclusive levels of embarrassment – to get him treated (both senses) seriously. He is now fine – probably because of his innate strength; and a supportive GP.

Although my favourite snafu has to be waking up on the operating table, when I was eighteen, about to have my appendix removed – because I had an obvious-to-everyone-but-the-registrar kidney stone. Yup. (Admittedly, having been very ill when I was born – having to spend a long time in hospital, having then developed pneumonia, with my mum always at my side – I would not have been in that operating theatre without amazing post-natal treatment. But that was decades ago: when there were enough doctors and nurses to be able to offer such prolonged intensive care.)

A last thing that peeves me about the NHS is how we have been taught to treat it as a charity – when it is supposed to be a fully-funded public institution. There are volunteers – which I would understand were it the National Trust – and we are also supposed to be delighted to donate to campaigns such as the Stratford Hospital Cancer and Eye Appeal. As much as I love the Orchestra of the Swan, I really do not understand why they felt it necessary to record a CD (however wonderful) in aid of this – when, to me, such facilities should be part of the ‘core offer’ paid for by the Government.

The NHS was great – and can be again. Of that I am certain. However, until we stop believing the Westminster-issued propaganda that sells it to us as a luxury (similarly, disability and sickness benefits – don’t get me started…), such greatness will not be achieved (again).

I am lucky enough to have seen in great detail (although what took me there was the exact opposite of “luck”) how efficiently private medicine functions – much of which is obviously down to the exorbitant amounts of money involved. But private medicine also delivers from an ethos of individual healthcare and trust that is beginning to fade from some areas of the NHS (even, though, frequently, there is an overlap of personnel); and from a lack of management interference. Surely there are lessons to be learned…?

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