Highs & Lows and Painted Toes

 

 Well the week stumbles on in the continuing lack of communication, lack of understanding way it Ended last week.

Forgive me for this ‘rant’ but I hope on reading you will be as astonished as me by these events. Oh there is some humour later on too and I don’t think you’ll need tissues for this one..

Late Monday afternoon a lady called Jan who is part of the discharge team calls me explaining she was responsible for ordering all of the equipment, she had spoken to Julie and had agreed a list of items with her that would need to be delivered to our house which included; A hospital bed, a special mattress that fills with air and ripples, it keeps soreness to a minimum and helps prevent bed sores, (crucial given Julie is bed bound now). Also ordered was a commode and a couple of other smallish items. Jan said she would ask the community team that delivers equipment to get in contact to arrange delivery asap as this was a fast track discharge. I informed her different, it would depend on Julie’s general health being ‘good’ (take the word 'good' in context here) and in my view that wouldn’t be until later this week at the earliest.

Jan mentioned she also notifies the community Nurse team that Julie is being discharged also liaises with the Palliative care team (Macmillan Nurses) situated in the office next to her. A team called Hospice at home too.

On pushing the matter it appears the discharge team’s responsibility ends the minute they inform every agency involved. I expressed to Jan that I felt the system is broken, that it is poorly thought out, no one takes responsibility for anything and everyone assumes once a request to an agency is made well that’s fine.. NO IT E*FFING WELL IS NOT FINE!  Someone needs to co-ordinate a discharge and that means someone knowing that what is being requested IS being actioned! AND What everyone seems to fail to recognise in this process there is ONE IMPORTANT PERSON that MUST be kept in the loop (in this case ME), there is a key phrase in the NHS ‘Stakeholder’, well this particular Stakeholder feels the system is wrong, and here is why……

The discharge is dependent on it being possible for the family to be able to accept the patient, in this case Julie, back into the family home… Would it not be a great idea to start the process something like this: “Hi Andy, this is the discharge team, we hope to discharge Julie on (for example purposes only)  Wednesday, are you able to accommodate that?... Is that so hard? What though if it isn’t? Well then it’s easy to agree a date and then inform the other agencies and then in theory if everything could have been available for say the Wednesday to achieve the Friday would be simple would it not? I fully appreciate discharges need to normally be swift, no one wants to be tying up a hospital bed but all the more reason to get this right first time every time.

To Hospital CEO's, administrators, to discharge teams, to ward staff, to all the other agencies I say your system MUST change! MUST! I informed Jan and I’ve informed others whom I have spoken to during this very frustrating week that I am going to make it my mission in life to change things! Let’s face it not everyone is like me, how many people are just railroaded into accepting second best or suffer a lack of communication and end up with a poor experience. The crazy thing is being project managed or co-ordinated WILL save costs and will improve the overall patient (Stakeholder) experience. What is truly frustrating is almost every agency I spoke to recognises the system is flawed and agree with my assessment! SO stop talking about it and accepting it and make Management raise their game!!! It is ESSENTIAL especially in palliative care cases that this transition is handled and applied in a stress free manner, this is certainly not my experience!

You’ll gather from the above that whilst I am truly impressed with every team especially the ward 26 team I am less than impressed with ‘the system’, I hope the CEO of WUHT Is reading this, I want a meeting with you, this is NOT GOING AWAY, I WILL NOT ALLOW IT TO GO AWAY! Trust me, I am on a mission here, people deserve better and certainly a smooth discharge no matter the reason for being in hospital!

Back to the specifics of our case… Having initially spoken with Jan and our call had ended I stared at the list, something is missing….. the penny dropped,  The hoist… There was no hoist on the list. I tried to call Jan back but as she had left no contact details I tried the number she called me on, HA! you cannot call back in on this number! I eventually tracked her down but what a waste of my valuable time!!I I explained to Jan there was no hoist on the list, despite having previously told me she was responsible for ordering ALL the equipment Julie needed at home it now seems that didn’t include the hoist, that would be ‘OT’..

Still Monday, it was a mixed day for Julie, Emma & Bob drove over to see her as you can imagine it was very emotional, there are so many tears being shed these days… Also a dear friend of Julie’s Tara drove across country to see the lady herself & Julie's dear friend & former neighbour came over with Emma & Bob. By the time I got on the ward, Julie was very upbeat this despite my tears being added to the day’s as Julie shared some of the conversations she had with Emma and Bob….But she was lively, she’s struck up a tremendous friendship with a fellow long stayer, Hannah has been in a week longer than Julie, she’s a lot younger than Julie but age is just  a number for these comrades in hand, we’ve also bonded with Hannah’s family including Mum Andrea and Hannah’s boyfriend Chris.. Well J & H can brighten anyone’s day when they’re bouncing off each other. On my way in I'd had a text off Julie, "Bring me in some KFC" wowsa I thought, the lady must be feeling better though bizarrely she told me years ago she last ate KFC well before she met me on a drunken night out with her brother Howard consuming a family bucket between them on a longish late night walk from Cleethorpes and its night clubs back to Julie's home in Grimsby, but lol the saying now is #WhatJulieWantsJulieGets so KFC it was. I'd swapped messages about Julie with Viv off Googlebox around this time, Viv kindly asking how Julie was, imagine my surprise as I waited for the hospital lift doors to open and there was Viv & daughter Eve! We chuckled discussing my bag/bucket of KFC again they sent their love. Needless to say Julie was happy & so were some of the staff who we shared the remaining pieces with.

 Tuesday morning and to typify what I am talking about; I receive a call around 8.30 from the community store team “Mr Shute, we’ve had an order come through for equipment for your wife, can we deliver it?” Me – “When?”, “Well this morning”… The assumption is I am sat on my backside at home waiting for everything to happen to everyone else’s convenience… WRONG!! I am 40 miles away on my way in to my office, I work!!!! I explained this.. We’ve been told this is for a fast track discharge” – The system has now failed….  “Have you got a neighbour who can let us in?” NO I HAVE NOT NOR WOULD I ALLOW THAT!!! It is ME that is going to have to deal in the main with looking after Julie; I need to be there to ensure the right equipment is supplied…  Besides that I informed the lady, this is not going to be a fast track discharge even were I at home. I agreed to be at home Wednesday morning to accept the delivery.. 

Early afternoon two interesting events, 1) Julie called me; a Doctor has confirmed she is “NOT CLINICALLY WELL enough to be discharged!” I hate to be smug but I’ve been saying this since the palliative team meeting Friday!  Secondly;  I received a call from a community Nurse called Terry, a lovely gentleman and most helpful but he is calling me to say “We’ve had a message from the discharge team at Arrowe Park about Julie being discharged apparently it was to be a fast track discharge  but little other information, we wondered if you knew what was going on?” Does anyone see the need to the project manager/co-ordinator yet?......

I explained to Terry  the equipment was being delivered tomorrow morning (Wednesday) I explain what the kit comprised. I also added that despite everyone wanting this to be a fast track discharge it was NOT going to be,  A ward Dr had earlier confirmed Julie is not clinically fit to discharge, Julie was having platelet issues still and had Neutropenia, her white blood cell count was low indicating an infection and she was on antibiotics, it was my view that unless I was convinced differently that Julie wasn’t going to be discharged before Friday or even early next week… We agreed to liaise with each other, I’ll project manage this myself now!

Late afternoon a lady called Melissa called me from the Occupational therapy team called; “Andy, I’ve seen Julie, I have ordered a hoist & harness for Julie and I’ve called the community store team and have managed to get it added to the equipment order being delivered in the morning”.. At last, someone is thinking! Shame no one was listening!

Tuesday evening Julie is still quite bright, she had asked me to get curtains from Ikea, I had them in the car, Phil, Julie’s brother and I will sort them out tonight, the curtain rail needs re-siting and we shopped for sheets and a quilt for the hospital bed. We left Phil & I had a busy night ahead, it would be nice for once to come home sit down, grab a glass of wine and chill, lol like that’s going to happen, tonight its gone midnight.

Wednesday morning, a knock at the door, it’s the hoist! “Where’s the bed and other items?” a polite “I don’t know this is all we were given”.. 30 minutes later delivery vehicle number two arrives with all the kit…

Melissa had said she wanted to come out and checkout the hoist and to give me a basic understanding of how it worked, well I wanted a basic idea of how it worked. Melissa called and 30 minutes later she was with me, she took the harness to ensure it was the right fit for Julie. I called and left a message for Terry of the community Nurse team to update him and confirm the equipment is all in place. Julie's hair has been growing at a pace and its bugging her, she also wants to go in to dare to be different mode by having the right (thinner side) kept really short certainly shorter than the rest. Jeanette our superstar friend and Julie's hairdresser, confidante, fellow laughter maker after receiving a call from Julie is heading for the ward armed with scissors. Even at this late stage, fashion and appearance matters to my darling wife.

Thursday and Julie calls me “They are going to discharge me tomorrow” Julie is still on antibiotics, I am not convinced and… this all assumes I am going to be at home and don’t have commitments. I called the Ward Manager (Much prefer the title ‘Sister’) Emma Hare, I expressed my concerns on Julie’s health and whether she was fit for discharge, I suggested that “In this litigious day & age to discharge a patient such as Julie especially as she is as poorly as she is that to risk her relapsing & having to be re-admitted within the week was foolhardy at best” I also raised the lack of communication with a key stakeholder (me) and pointed out (again) that I am not sat on my ass at home waiting for things to happen that I know nothing about, in serious jest I added “Emma, something no one has considered in all of this, Julie has no keys to get in to the house with” we both laughed, it was a serious point made with humour. IF I’m not there Julie isn’t going to be able to be discharged, If i'm not consulted and kept in the loop... Julie isn't going to be discharged… Again, to the much higher up the chain executive, wake up, consult the key stakeholders! Emma would speak to the Doctors and someone would speak to Julie.. I asked Emma if she knew of the blog, she didn’t, I suggested she might want to read “The Rollercoaster is out of control” I also explained Julie reaching the finals of Merseyside Woman of the Year, cheekily I asked could I put an A4 poster or two up in the ward, Emma readily agreed.

When I got on to the ward Julie and a couple of the Nurses were chatting, oooh excitement, it turns out Julie had been visited by Sister Emma & ‘hospital royalty’ a lady called Jill Galvani who just happens to be Director of Nursing & Midwifery, it seems the praising of Emma and her amazing team on Ward 26 had reached ‘the top floor’. Jill wondered if the hospital could use the blog content to boost staff morale and to educate, Julie confirmed we are happy for anything published in the blog to be used. Anything that spreads the word & further recognises the excellent work Emma & her Ward 26 team do can only be good. The staff nurse on duty confirmed there was no urgency to discharge Julie on Friday and I suggested Monday or if the Bank Holiday caused problems then Tuesday, there is no problem with a Monday discharge, soooo Monday it is!

Friday mid-afternoon I’m on my way to hospital to see Julie and the carphone rings. It’s the ward Doctor, Dr Gibbons. I informed him I am going to be with him in ten minutes and we agreed to meet then. The Doctor confirms Julie is well enough to be discharged on Monday, that she is finishing her course of antibiotics tonight, her platelets are up and her white blood cells are increasing too so things are encouraging. Dr Gibbons following discussions with the Palliative team wanted to be sure I knew ‘precisely where we were with Julie’, I think most of you could answer that now, yes both Julie & myself are fully aware of ‘where we are’, I won’t state the obvious as to why Julie is returning home but I am finally comfortable that Julie is well enough to come home & its where she should be. The ward team are nearly all voting for Julie in MWOTHY competition, I caught one nurse on my way out reading Julie’s blog, he confessed to almost being in tears, I said “you’ve not read them all yet then” lol..

So it’s taken a week, a week of mainly frustrations all of which could have been avoided with a little bit of planning and……… coordinating!!!

On my way home from work on Friday I’m thinking what we need to do for Julie’s homecoming, shopping etc. Then I suddenly thought, our bay window is painted black paint, Julie’s bed is going to be in the bay, she’s probably going to feel like she’s already at the funeral directors! I need to change this, so I called in to a local decorator’s merchants and had some paint made up that would brighten the window frame up for her. If only I’d thought about this when Phil was here lol, he wanted to help, he did but lol I’m still cursing I hadn’t considered this before but the job will be done and, I want it to be a surprise for ‘her ladyship’.

Before

After
 

Saturday and they’ve closed down Ward 26! They’ve moved all patients to the adjacent Ward 27 which is usually kept mothballed for emergency situations & is now  being used so that 26 can be locked down and fumigated to kill off the Norovirus bug. This was the ideal time to do this as the ward was infected whilst patients who were fit could be discharged no new patients were allowed on so numbers had diminished to just nine patients including the now ‘double trouble’ Julie & Hannah,  lol worst still Hannah & Julie were  now next to each other and Hannah could struggle in to her wheelchair to get even closer lol! I walked on to the ward with my Mum bearing bags of iced lollies for this amazing team, Nurse Kim W almost mugged me for them hahaha, as you can imagine I was welcomed warmly then panic set in, was there was a freezer on the ward, lol, there was. The ward staff are full of

fun too so it’s mischief time, Julie has had a face drawn on her big toe hahaha, it’s the little things is life…  It’s lovely to see a smile on Julie’s face, as we keep saying, dying doesn’t need to be a sad affair, it’s a time to make the most of what time you have left..