One person's account of their experience of the NHS
Six months ago I went for a routine blood test. I’d been for
one two and a half years earlier but hadn’t bothered with an annual follow up.
There were reasons for this. I’d not been to a GP for years until that first
blood test. It was only a passing thought that I ought to have a health check
having reached my late 50s. My introduction to the practice had been, ‘can you
fill this in’. ‘This’ was a questionnaire about my drinking habits. I found it
insulting and demeaning. It turned out, of course, to have been a target that
the practice needed to comply with and I was the mechanism. What I learned was
that that’s all I really was – a mechanism for the practice to meet targets and
get money.
My first health check revealed ‘high blood pressure’ I
didn’t really have ‘high’ blood pressure but I had crossed a pre set threshold
that meant I should be treated. There was some sense in keeping an eye on it
and giving me some informed choices to make but at a stroke I had ceased to be
a person and become a ‘patient’. And patients mean prizes –to the GP.
What happened was that I lost all perspective and started to
worry about being ‘ill’, and even about having my life shortened. It took me a
good year to get back to a normal view of myself and the world.
Subsequent visits followed a routine. The nurse or GP is
glued to the screen. They don’t know me (and still don’t) so they hunt the
screen to find out what they are supposed to know about me. Then they respond
to what the screen tells them they are supposed to tell me and then they have
to worry about what to fill in (especially if it means money to the practice).
And then 7 minutes is up.
So I learn that my purpose is to help the practice keep the
system up to date. I suspect this is made to feel worse than it is because you
see the nurse more than the GP and they have much less discretion and are more
victims of this system. What I felt, though, was that I didn’t really want to
keep playing silly games and as long as I wasn’t ill, I’d stay well clear.
It’s now worth saying that on that first blood test my PSA
score was 6. The nurse was feeding back the results and so it was red on her
screen. She followed the screen’s instructions and told me about it. I said
that I thought PSA tests were pretty unreliable unless you had prostate cancer
and she said, ‘that’s true’. End of consultation.
The targets create ‘noise’ and it’s a very fine line between
what’s done in the interests of the person and what is done to keep the system
happy. It’s all too easy for people to get lost in the noise. That’s what
happened to me and it’s a common story – things are done for people who don’t
need it and the few who have real needs can get lost
Little did I know that I had just made ‘an informed choice’.
All decisions, by default, were now down to me, apparently. I still don’t know
what happened. I have heard that many practices get a GP to sign off all test
results but that doesn’t guarantee due scrutiny.
So I made the wrong decision and I look back and wonder. I
nearly didn’t go back for the follow up test – and if I’d been busy I would not
have. It was only a lull in work and a ‘I suppose I ought to’ moment that got
me back ‘doing my duty to the NHS’. The PSA number was now 10 and the nurse
decided that I should see the GP. I saw a locum and she did a rectal and
referred me to the consultant at the County hospital. (It’s worth noting that
none of the regular GPs will know what’s happened unless I go back to see them.
Everyone, including the hospital assumes the GP knows everything but they
don’t. It’s in the system but they will not see it unless I go back to them).
The consultant takes a look and says, ‘it’s suspicious –
I’ll get you an urgent biopsy’. The fear ratchets up. (The GP had said it felt
OK but get it checked anyway.) The consultant clearly thinks it’s nasty.
Urgent means two weeks but still OK. I get the biopsy and go back for the results
a week later. Now, there’s no good way to tell people they’ve got cancer but
this conversation was bizarre. He could have said, ‘congratulations – it’s
positive’ for all it sounded and he then went on to tell me how much blood I
lose in the surgery. He then said there were more tests to do but they couldn’t
be done until the wreckage from the biopsy had settled. He behaved as though he
had to tell me everything so that he could record the fact that he’d told me.
So I’m left for a month to worry and to research. Even if
you know what questions to ask, the answers are very perfunctory and you
quickly realise that you have to do your own research to stand a chance. It
took me two weeks to get over the ‘OMG it’s cancer – how did anyone else ever
make it to 60?’
The other tests were a bone scan and MRI. Meanwhile I was
allocated a urology nurse whose role was to be a contact and fixer. She was
very helpful and, I quickly realise, the picker up of the many pieces that the
system left in its wake. My wife and I were so upset and baffled by the
surgeon’s apparent ‘empathectomy’ that I asked the nurse if I could see someone
else for what I assumed would be a life changing conversation when all the test
results were back. She agreed without hesitation and organised it.
She also let
me know that the bone scan had been benign – a couple of small ‘lesions’ that
weren’t very suspicious, nor even adjacent (on a rib).
It was also interesting that the surgical option that
appeared to be the ‘no brainer’ is the Da Vinci robot. ( When you get behind
the hype, it’s not as obvious but it is clearly superior in the hands of a
practised surgeon ( i.e one who has used it a lot). My hospital didn’t even
mention it and knew little about it despite there being one 20 miles away.
So, there I am, geared up for my session about surgical
options and with my new surgeon who has come well recommended by the nurse. He
proceeds to carry out an extraordinary demolition job telling me that its’
about as bad as you get, my body is probably riddled with cancer and surgery is
not an option so he’ll pass me on to the oncologist. My wife thought he
relished his ‘what a clever boy I am telling you how bad a state you’re in’
speech. I just thought he was an arrogant s.o.b. with even less empathy than
the first one and went home ready to slit my wrists. I’d wasted a month,
physically and emotionally getting used to the idea of surgery and spent yet another
two weeks looking at anyone over 60 and wondering once more how they got there.
It did occur to me that the surgeon who first saw me would
have known that the MRI was almost certain to be diagnostic in my case and
therefore why didn’t they do that first so that the biopsy could have been done
immediately afterwards such that there would be no danger of the MRI being
affected by the biopsy activity. The answer was cost and scheduling. It is done
some times but not if they can help it. (The MRI operator had told me how busy
they were – 12 hours a day, 7 days a week. I asked her how many she thought
were really necessary and how many were done because ’they could’. She said
probably 60 % weren’t really necessary but that was only her opinion, what
would she know!)
So I’m now left to reflect and fester for 6 weeks before I
see the oncologist.
I was so geared up for the surgery that it took even more
time to readjust and get used to it. It all began to seem like a routine: turn
up, get kicked in the teeth, fester for a month and then have it all done
again. My reflection was that I had to keep reminding myself that PC was the
least serious of all and entirely survivable. Whilst honesty is essential why
was it that they were so insistent on brutal ‘this is how bad it could
be/probably is’ when the disease was so curable? Why couldn’t anyone say,
‘don’t worry, it’s not good but we can get you through this’? Why, when a free
person comes with every condition and we know full well that if you treat the
person you’re half way there, if not further, were they going out of their way
to ignore that logic?
What it was doing to me was to make me doubt the rational
knowledge I had that it was indeed survivable.
Was this the risk averse NHS?
On the allotted day, I saw the oncologist. I did wonder, if
an oncologist is someone who diagnoses and treats cancer, why I was seeing him
last and why I had seen a surgeon first.
The commodity I was missing was perspective. I had had great
support from lots of people and the PC charity is wonderful but I still had
little perspective – or rather I still had to keep convincing my irrational
self that this was not life threatening. I asked him what would happen if I did
nothing. He replied in a very unconcerned way that after 3 or 4 years it might
have spread a bit. He then talked about how easy it was to treat, how easy it
was to pick up any eventuality. I told him what I’d been through and he was
rather taken aback. He dismissed the conclusions the surgeon had jumped to as
improbable and excessive. I asked him why these surgeons (in his own
department) would have behaved that way and his response was, ‘all surgeons are
like that’.
I still don’t know whether to believe him but I am very
angry at having been put through so much unnecessary grief and I’m very angry
that family and friends have been put through such unnecessary grief. If I’d
had a conversation with that oncologist 4 months earlier….
I think also that the current system has cut the GP out of
the flow (and they have been willing partners) that the person who would have
been the anchor of perspective was not there and the patient is cast adrift
into a system where you are a series of test results being passed from person
to person.
This transactional view is driven by the perceived need for
the system to be ‘efficient’. The
paradox is that it makes the system inefficient by creating tons of failure.
Medicine is about relationships – and the GP is paramount for many experiences.
There are cases where a simple transaction is all that takes place but then you
need to design against the value.
A further thought that has come from this experience:
screening is either ‘a good thing’ or ‘highly dangerous’. The latter view comes
from the high level of false positives and the invasive and dangerous treatment
that can ensue. PC generates huge debate on both sides of the Atlantic because
the PSA test is so inaccurate. I think it is the wrong debate. Screening per se is not the problem it is the
mindless reaction to positives that is the problem. I suspect the US and UK
have the same problem for different reasons. In the US, it seems a lot of
surgery and medicine is dome because it can be and as Wennberg highlights,
without enough data about life quality. In the UK it happens because the brain
has been taken out – triggering a threshold leads to automatic responses. I saw
a reaction to this to the point of reluctance to act, which is equally
dangerous. I think it would be helpful to stop the screening v. no screening
debate and say, screening is just fine but let the GP help people make informed
choices with support from specialists based on what they know of the person and
the merits of the case. The best action in many cases is just to be watchful.
I now await Radio therapy. As I do so, I come across more
and more people who have had treatments other than those offered to me. It
creates the sense of just being offered ‘what they do’ and nothing else. If I
had not continued to research I would found none of this out. The treatments
may well be ‘OK’ but relative to other centres appear to be 10 years out of
date.
I used to be very anti private medicine seeing it only as a
means to jump a queue and get a bit of pampering. Now, though, with the
deterioration in the NHS system it is clearly a means of better diagnosis and a
trusting relationship with one practitioner who has time for you and will see
you through the process.
I am now convinced that I need a second opinion – watch this
space.