WARNING!

Brace yourselves.
 
I am Mrs Ranty McRantyface.  


Feel free to skip the write up.  It’s really for my benefit incase we have to make a formal complaint.
 
Disaster Timeline
 
May 2015 – Meet with dietician to discuss benefits of Alan having a gastrostomy.  She agrees there are many and advises us to mention our conversation at Alan’s next gastro appt and ask for referral to gasro nurse for assessment for gastrostomy.
 
2nd June 2015 – Meet with Gastro doctor (Registrar not the Consultant).  Discuss gastrostomy.  She agrees this will be beneficial to Alan and will write to Gastro Nurse requesting Alan be assessed to ascertain the best type of gastrostomy for him. 
 
July 2015 – Alan has massive flare up of his ulcerative colitis and recovery only begins at end of August.
 
Early September 2015 – I contact Gastro nurse to ask we can expect assessment of Alan for gastrostomy as per our conversation with the Registrar in June.  Much confusion.  No paperwork regarding the referral can be found.  Someone will phone me back.
 
Mid September 2015 - I contact Gastro nurse again to ask we can expect assessment of Alan for gastrostomy as per our conversation with Registrar in June.  Again much confusion.  Can’t find letter from doctor, no knowledge of assessment request.  Someone will phone me back.
 
Late September 2015 -  I contact Gastro nurse AGAIN to ask we can expect assessment of Alan for gastrostomy as per our conversation with Registrar in June.  Still confusion.  She will phone me back.  By this point I have spoken to three different gastro nurses.
 
I come off the phone from her and phone dietician to update her.  She is just as annoyed as me.  She will chase it up.  She phones me back within 10 minutes to say I had been given the details of the wrong gastro nurse (!) and it’s the Gastro nurse who specialises in nutrician that I should be speaking to.   Dietician has asked her to call me.   She does call me later the same day and says she will speak to the Consultant and get an appointment out to us to asap take Alan to be assessed.
 
Mid October 2015 – Chase Gastro nurse as no appointment received.  Left message on answer phone.   Phone call returned following day with appointment for end October.
 
End October 2015 – D, Alan and I meet with Gastro nurse.  Long discussion and she agrees that Alan would benefit from procedure.  Normally done under local anaesthetic but he will need a general as he won’t lie still enough to let them do the procedure safely.  She will report back to consultant tomorrow to advise her agreement the procedure should go ahead.  Reassured it would be done before Christmas (we are terrified he will have another flare up of his colitis and want the procedure done while he is well).
 
Early November 2015 – Gastro nurse writes to us to advise Consultant wants more information as to why the procedure is necessary.   I write a lengthy email listing all the reasons (that we’d already discussed at length with the dietician, the gastro registrar in June and with her the week before, with all agreeing the procedure was necessary).  The dietician also writes to the Consultant in support of our request.
 
Mid November 2015 – Consultant requests complete dietetic history with regards to weight loss and Alan’s requirements when he is ill as well as detailed food diary showing all Alan’s food and liquid intake over the course of a week.  The dietician is livid as she feels a strong enough case has already been made.   You’d think the fact he has a BMI of 14.9 would be enough to signal that he’s not eating enough orally to sustain himself would you not?
 
Consultant also requsts Alan’s current weight (he already had this info) and asks that his weight is recorded monthly from here on in (the hospital don’t have a hoist weighing scale and the wheelchair scale is never accurate so we purchase our own hoist scale at the cost of £1500.)
 
Dietician makes home visit to discuss the info she requires for Alan’s food diary and how best to record it.  I spend a week painstakingly weighing and measuring and  recording everything Alan eats and drinks.
 
1st December 2015 – I email food diary to dietician for her analysis.
 
8th December 2015 – Dietician makes home visit to discuss content of food diary and to measure how tall Alan is.
 
15th December 2015 – Dietician emails me her analysis of the food diary and asks me to comment and add any further information the Consultant might find useful.  Alan weighs 41kg with clothes on. 
 
21st December 2015 – Dietician’s been on annual leave so her report and the food diary is sent to the Consultant today.  Her report strongly stresses the need for the procedure to go ahead asap and points out we originally discussed this with her in May and her disappointment that it is taking so long.
 
January 2016 – Received appointment letter from Consultant with appointment to meet with him and the gastro nurse on 12th February 2016 to discuss procedure.
 
12th February 2016 – Met with Consultant and gastro nurse.  Consultant agrees the procedure would be beneficial to Alan but has to point out the risks.  We agree that we will consider the information he has given us and advise whether we want to go ahead.
 
It was also agreed at the meeting that the gastro nurse would contact the dietician to get a note of her annual leave dates as the procedure has to be done when the dietician is around as she provide shome support and training before and after the procedure takes place.
 
16th February 2016 – Confirm Alan’s weight to the dietician.  He weighs 42kg and she confirms his BMI is 14.5
 
End February 2016 – After considering all the information given to us by the Consultant, I contact the gastro nurse to advise we do wish the procedure to go ahead.
 
Beginning of April 2016 – I contact gastro nurse to ask when we can expect a date for the procedure.   Left message on answerphone.  Different gastro nurse contacts me to say she will investigate and get back to me.
 
Mid of April 2016– I chase gastro nurse again.  Again told she will get back to me.  She gets back to me two days later to say Alan is definitely on the list and a letter with a date will be sent out shortly.  In the meantime we get a copy of a letter from the Consultant to the GP saying he had asked for Alan’s file at the end of February and never received it and that’s what caused the delay.  (Buck being passed?)
 
Early May 2016 – Letter arrives advising Alan’s gastrostomy is scheduled for 1st June 2016. 
 
24th May 2016 – Having not heard from the dietician regarding Alan’s op, I contact her to make sure she’s been informed it’s going ahead on 1st June.  She had no idea.  No one from the gastro team has contacted her and sod’s law, she is on annual leave then.  The op can’t go ahead without her being around so I phone the gastro nurse and leave a very irate message advising the op will have to be cancelled.
 
New gastro nurse phones me back, very apologetic, saying she will look into it all.   She will ask the Consultant’s secretary to take Alan off the list and put him back on asap after the dietician returns from annual leave.
 
End May 2016 – Letter advising Alan’s gastrostomy will now take place on 29th June.  I phone dietician to let her know and she says the new gastro nurse has been in touch to let tell her and it’s all systems go from her end.  Gastro nurse phones me to confirm it is all sorted.  As requested in the appointment letter, I phone the Consultant’s secretary and confirm Alan will be attending on that date for the op.
 
24th June 2016 – Dietician makes a home visit to do training on Peg feeding with us and Alan’s team.  She informs me she has been in touch with the District nurse and she’s all prepped to come out after the op for a few days to check the wound site and remove the stitches.  Also delivery of tubes, syringes and special feeds arranged.
 
28th June 2016 – Spent considerable time with Alan preparing him for the procedure and checking he is still happy to have it (he is).  Showed him a tube and talked about what it will look and feel like and pain levels.  Went back over the benefits and reassured him he’ll be fine (he’s absolutely ok with it, think it’s us who needed the reassurance).
 
29th June 2016 – Up at 5am to get to get organized and get Alan to hospital for 8am.   David and Alan set off just after 7am leaving me in tears as my knee has flared up so I wasn’t able to go with them.  Alan was absolutely fine!  Laughing and smiling and full of the joys.
 
David texted me at 9am to say Alan was now admitted to the ward, a canula was about to be fitted to Alan and the nurse was trying to find out approximately when he would be going to theatre.  There was discussion around whether or not he would have to stay in overnight or not.  The nurse was hopeful that he wouldn’t. 
 
10.10am and I notice I’ve got a missed call from David and a text saying to call him as he’s just been told the op is NOT going ahead!!!!
 
I immediately phone David and long story short (hahahahaha) although the ward was expecting Alan and he was on their admission list, he wasn’t on the theatre list.  And there were no spaces.  No option but to come home and re-schedule the op.  I won’t repeat here what I said as I am sure you can guess.
 
The ward nurse was mortified and very apologetic.  David was seething but of course it wasn’t her fault so no point in ranting to her.    Before he left the ward they rescheduled the op for next Wednesday so we have to go through the same rigmarole again then.
 
I phoned the dietician to let her know (don’t trust the hospital admin to contact her!) so she could cancel her planned home visit on Tuesday and re-schedule the District Nurse.  She was livid too.
 
I am going to contact the gastro nurse tomorrow to find out what the hell happened.  Didn’t trust myself to speak to her today.  I am actually beginning to wonder if someone up there is trying to tell us something! 
 
As for Alan, he left the house smiling and laughing and returned smiling and laughing and proceeded to eat a mountain of mac cheese.  He’s my hero
 
I have just about calmed down now and trying to look on the bright side that I will hopefully be able to go with him next week.  Every cloud and all that.
 

In other, more uplifting news, as you will see from my blip, the concrete foundations of the garden room are now laid.  Woo hoo.  This is giving us a much better idea of the actual space we will have.   That cheered me up.