What it feels like to be the spanner in the works.

First off, this is not a dig at people in the NHS. There are good people in the NHS and they have done good things for me, but I just need to get this out. I think unless you live this life, you (fortunately) can't understand how completely demeaning it is to be the spanner in the works.

I've been having some problems for the past week or so, and I needed a simple x-ray to check that my tube was in place. Migrating feeding tubes are common. It happens to me about twice a year. You would think there would be measures or protocols in place. No. Absolutely not and as a patient I literally do not know where to turn any more. Here is what it feels like to be a regular patient in the NHS. Can you wear my shoes for a few minutes?

After a week with no relief (from reflux, sickness and mild dehydration) I went to my GP yesterday (feeling bold after a bank holiday!). At this moment in time, I am not a medical emergency. I am as healthy as I can be. There's no appointments (unsurprisingly), so I ask for a phone appointment and apparently, there's none of those either. I ask if I can leave a note on the system about my problem to see if he thinks I need an x-ray and if he can request one. Surrounded by a waiting room full of patients I try and discretely explain 'I have a feeding tube and I think it's become displaced' 'I'M SORRY WHAT'S THAT? YOU HAVE A LOCKED KNEE?' I have no other option and I am forced to shout my personal details, problems, life story and full medical history over the counter. I hope you enjoyed that people of unnamed general medical practice. Readers, if you are still wearing my shoes, you now feel like a complete spectacle.

I left and didn't hear anything for the rest of the day. I went out with Sam's Mum in the evening to see a show, and when I got back I found that I had a voice mail from my GP at 8pm in the evening. The voice mail informed me to go to the walk-in centre, or A&E as I needed an x-ray and it would probably be a few weeks before he could get to look at it himself. Nice. Those of you who are still questioning why there are long waits in emergency care centres should look no further than non-emergency cases like myself, who are advised by medical professionals to fill up said waiting rooms and waste the time of doctors/nurses, causing longer delays for people with very serious ailments.

Knowing that I wasn't an emergency, I went to the walk in centre at Ormskirk hospital where I have had an x-ray in the past on a displaced feeding tube. The waiting room was full to burst (probably with patients of GPs that cannot not be bothered) but I didn't wait too long before I was called to triage. Triage Nurse One initially told me that they didn't do x-rays at that hospital but the story did change slightly as time went on. I'm clearly far too complicated for Triage Nurse One, so she leaves the room and comes back with Triage Nurse Two. Triage Nurse Two (who very modestly announced herself as 'very skilled' several times) told me that, although she was very skilled she couldn't request abdominal x-rays. She told me that I needed to go to A&E (I'm still not even mildly clinically unwell, but I think the aim of the game is to make you clinically unwell and THEN you go to A&E, because then you aren't a time waster). I explained that Southport A&E always send me to Wythenshawe but that last time, when I cut the middle man and went straight to Wythenshawe I was told that Southport should be capable of dealing with these sorts of problems. The very skilled nurse, used some of her skills and phoned Southport A&E to tell them I would be on my way (If you're still in my shoes, do you feel like a pass the parcel yet? Spoiler: there's no prize!) who said that they wouldn't x-ray me because I was of 'child birthing age' - I SHIT YOU NOT. THIS IS WHAT SHE TOLD ME! I have never heard anything so unbelievably ridiculous. Therefore I just want to put an urgent PSA out to the people of this area - if you are of 'child birthing age' wrap yourself in cotton wool and do not take any unnecessary risks because if you decide to break a bone or rupture a spleen... Southport Hospital cannot help you. It's policy.

I'm sent away from Ormskirk walk-in centre with nothing. They can't help me. She's not skilled enough. She's very skilled but not skilled enough to look to her duty as a nurse and act in the best interest of her patients, as an advocate, practise safely, professionally and with appropriate team members (I haven't been a student nurse for three years, but I know the Nursing and Midwifery Council Code!). If she cannot treat my problem, it is her duty to find someone who can, to ensure the safety of her patient (me). As soon as I walk through that door and clerk in at the desk I am a patient in their care. To send me out the door with (potentially) a very serious problem and nowhere to turn, is not adhering to your agreement as a nurse.

So I leave, feeling PISSED OFF. I get it, I'm expensive. I cost the NHS a fortune with my treatment and investigations and inpatient stays. If you want to find someone who gets more out of our healthcare system than their taxes could ever pay then here I am. Lynch me. I'm hard work and complex and I make your day more stressful. You have a waiting room full of patients who the GP can't be arsed dealing with and here I am wasting your time. But now, I'm going to announce something completely selfish: my problems are more frustrating for me than they are for you. When I walk out that door you have eliminated a problem for yourself. But it's still there for me, and it's getting more serious as time goes on.

My next step was to email my dietician. She can't fix feeding tubes but she might offer some advice. That gets me an immediate out of office answer. My next step is to ring my consultants secretary. It rings twice and then redirects to voice mail - someone else who is too busy to deal with me. I get it, the NHS is busy. Without me in your day, it's already extremely stressful. So, I ring Kath* in interventional radiology. Kath* is an actual angel on earth and she is my very last hope. Kath* isn't in the office but she calls me back straight away, listens to me and despite the fact that she's not a medical professional (not a skilled nurse) she finds someone appropriate in order to sort the problem.

Interventional Radiology is an extremely busy department. The staff are the most wonderful people who are just as busy, if not even more busy than the rest of the departments in the hospital but they work so efficiently and have always accepted responsibility for me - at times, it probably hasn't even been theirs to accept. They are an example to every person and department who has ever claimed to be too busy, and passed me on to the next poor sod. Kath* called me back and asked me to come up to interventional radiology right away. Today, it was even busier because they were running with only one x-ray machine. We had to wait, but they sorted us all. Nobody was turned away.

The radiologists in interventional radiology are specialised and skilled. I needed a simple x-ray to find out if my tube was in the right place, but now I'm taking up the time of senior specialists who have better things to do than simple abdominal x-rays. If my tube is perfect and in the right place I have completely wasted their time.

My tube wasn't in the right place, it was in a complete and utter tangle in my stomach. The force from my duodenum was pushing it up into my oesophagus so no wonder I had been feeling like shit. When the image flashed up on the screen (moment of truth) it was saddening to see the state that I had been sent away in. It was reassuring that my trip there had been justified, but how can people in the field of care feel OK that they have dismissed a problem like this? They gave me no advice and nowhere to go. Without my tube, I would eventually die of malnourishment and dehydration. It would be one thing if the tube had looked slightly managable, but it looked like someone had tried to French plait Betty Spaghetti's hair. And it didn't matter to my GP, Ormskirk or Southport Hospital. As soon as I was out that door, my tangled tube was my own problem.

Trying to get my tube back in place was another nightmare with the guide-wire coiling up in my stomach and every time it went near my bowel it was met with a wave pushing it further back up into my oesophagus. Eventually with much perseverance and technique they managed to get it back into a good position. My tubes usually go in without *too* much push back from my crappy gut but with it misbehaving more this time I'm hoping so much that it stays in place. They managed to put the same tube back in which I'm glad about because it's really new and has worked well so far. I think (and hope) that it had just been pushed out of place with all the coughing that I've been doing. Hopefully the cough will go away soon though and this won't happen again.

I don't like to do too many angry rants on here. It's not how I aspire to be and it's not the aim of this blog. But I needed to get this off my chest and this is a place where I try to be honest and portray my life as it really is. I'm more angry about the attitudes of staff and their willingness to help me in a crisis. What goes around comes around and undoubtedly they will need care from a similar service at some point in their lives. Perhaps when it's their turn they won't find it so easy.



...you can take my shoes off now. I'm going to do my dissertation and for once, it will be less stressful than the rest of my day!