Today I have suffered huge frustration and witnessed at first hand how the system can really mess up.  This is not a Manchester story but the experience is really useful in learning terms and I need to get it off my chest.

My Dad has had a bad run with cancer, first bowel, then liver then lung.  Incredibly he is doing ok after three operations in two years and on the whole the care has been very good (big gripe about earlier detection but that is another matter). (I should, for clarity say Dad lives in York).

Today was a six month check up.  Dad has arranged to have his scans in York but has to travel to Leeds to see the consultant.  We did ask if this could be done in York but they explained it was important he came to Leeds for the follow ups.

On 21st November he dutifully attended in York for his scan: he was asked when his appointment was in Leeds, told them today's date and they said that was good as it gave plenty of time to get the information through.

So, next stage involves the usual planning of how we get Mam and Dad through to Leeds and back for the scan. It was a little inconvenient for our usual arrangements so Dad asked for the appointment to be moved.  They said no as it was really important that this got done now.  He is obedient in these matters so we hatched a plan.

Mam and Dad used public transport to get from York to St James Hospital in Leeds. Not a terrible journey but they gave themselves loads of time - leaving York not long after 10am when the appointment was at 3.15pm.

I took the afternoon off work to drive from Manchester to St James to meet them, with the plan to join them in the consultation and then bring them home to York before heading back to Manchester this evening.  I was with them by 2pm by which time they had had lunch (I would normally write dinner there but some readers from the South might not get it!) and we sat and drank tea until 3pm.

We registered electronically as we walked in - Dad mastering technology at the age of 79 - and waited patiently in a packed waiting room.  As our wait extended to 4pm I commented that in no other walk of life do we allow people to be 45mins late for their appointment with no communication and deem it acceptable. My parents shrugged and said 'but that's how it is'. It is how it is - but from now on I am going to keep asking why!

By 4.05 we were sat in a clinicians room awaiting a consultant.  He arrived, not the man we expected, but he arrived.  'Did you have a scan?' He asked: a bit bemused we pointed out that as this was a follow up to having a scan we had seen that as a necessity. He then admitted there was nothing on file and he would have to chase York to see if they could get it.  Twenty minutes later and he admitted defeat.  Our journey was wasted and there was nothing he could do. He was sorry, I was fuming, I remained calm, but I was fuming, my parents were bemused - and more sorry for me having put myself out rather than the inconvenience they had suffered themselves.

The consultant then gave us three options: return to Leeds, go to York for a follow up or receive follow up over the phone. Brilliant: really brilliant, but why can't these other options be offered before the cock up not just as alternatives after the cock up? How much time, energy and money could be saved if Mam and Dad could have had a call in the first place (they use Skype too so it could have been face to face - this Roy Lilley blog I read this morning seems appropriate!).

So we trudged off home - well back to York - where I tried to work out who I should complain to: and complain we have, but the chances are I have gone to the wrong place as I am unsure who the provider responsible is (York or Leeds?) or indeed who the commissioner is (York CCG or is it specialist?). Anyway the email has been sent and I will ensure it gets on the right desk. But I thought I would blog it too: just to record it as it is a cathartic exercise and I feel better already, even if a little drained from several hours driving today.

What can we learn from these experiences? I keep thinking that this, like too many stories I hear, is because the NHS is turning into a series of transactions.  My Dad only became a person when the consultant picked up the file 30seconds before coming into the room to see us.  Before that he was a scan to do, a scan to assess, a report to write, a file to get out and an appointment to be kept.  Nobody was checking that he was being looked out for, nobody was looking after John Caulfield in the system - or his family for that matter.  If someone had, if someone just had that responsibility, perhaps we wouldn't have been inconvenienced.

In fact, if his scan is clear, rather than have us run around they could pick up the phone, say 'all is good John, any questions?, If not see you in six months' and the whole world could keep moving. Instead we have a very unhappy family, we know it is not the end of the world and I did get to see Mam and Dad which I don't do enough, but a little care in the system, where the patient is at the centre and not the process, and things would be different.

Now 'Patients at the centre' - where have I heard that before?

This article as written by Richard Caulfield


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