Tag Archives: Rainforest ward

The right PLACE for an opinion

Finally, it’s happened. Finally, I’ve found a place where my opinion matters. In fact it did more than matter, it was requested, recorded and appreciated too and, what’s more, it wasn’t just my opinion that counted that day, but M’s as well and that meant the world to him, and to me.

5729994426_7fbcf8798aAt the start of 2016, not long after we had returned home from M’s December admission, I spotted an opportunity for M and me to volunteer our time to be assessors for the annual PLACE assessment at GOSH. If you’ve never heard of PLACE before, then you’re not on your own as it was also a completely new thing to me, but I loved the idea of being able to give something back to the hospital that has become the focus of the last 5 years of our life in any way we could. To my delight, M and I were both accepted as volunteers and it was then a case of waiting for the crucial email inviting us to the assessment day to arrive. When that email did eventually appear in my inbox, the day was set for early April, which coincided perfectly with school holidays and my day off work – a real win-win situation for us. M and I chatted about what the day would involve and even the unexpected turn of events that resulted in M’s broken leg didn’t stop us as Tammy, the helpful Facilities Manager and PLACE co-ordinator, reassured me that we could still take part, broken limb and all.

PLACE stands for “Patient Led Assessments of the Care Environment” and, to be honest, does exactly what it says on the tin – invites patients and others closely connected to GOSH to assess different areas of the hospital according to a specific list of criteria. Upon arrival we were well-briefed on what was required, including the 5 key areas we would be focusing on: cleanliness; condition, appearance and maintenance; privacy, dignity and well-being; food; and, ironically, a new area for 2016 and one that M was best suited for, disability. We were split into a number of teams with between 3 and 4 patient assessors and a staff facilitator in each, and each team was allocated 2 wards and either a public (or communal area), an external area or an outpatients department to inspect. M and I had discussed the ward options at length ahead of time and despite M’s initial yearning to visit Rainforest, we agreed that our opinions of Rainforest and Kingfisher wards, both of which we have stayed on in the past, would be coloured by our previous experiences and wouldn’t be as unbiased as the PLACE assessment required. I asked if we could perhaps visit one of the newer wards in the hospital as it would be vastly different from our usual haunts and was delighted when that request was met.

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Our facilitator was the lovely Mark, who had already promised M that he would try to lead our group and would take him in the biggest lift in the hospital – which we did and saw so much more of the hospital that I’ve ever seen before. Everything settled, we headed into the main Reception, our public area, and started looking at the different things and criteria we needed to consider to complete our assessment, from fire extinguishers to hand-gel dispensers and everything conceivable in-between. Once we had finished there, we headed onto our first ward in one of the newer wings of GOSH, where, having completed our assessment of the ward itself, we observed the lunch service before tasting the food for ourselves. Our final stop was back in the oldest part of the hospital, where Rainforest ward can also be found, and what must be one of the smallest wards at GOSH. The contrast between the 2 wards was hugely noticeable and it was fascinating to learn more about the proposed improvements to the hospital over the next 5 years or so. It didn’t seem like a particularly long or overly active day, but by the time we had finished with everything we needed to do and had headed back to the Lagoon to collate our scores and add any further comments, M was completely exhausted. His enthusiastic participation in giving his own opinions and insights into what he could see so soon after breaking his leg tired him out to the extent that he fell asleep in his wheelchair and was completely oblivious to the activity and hubbub surrounding him for the next hour or so.

We both thoroughly enjoyed our experience on the day and M was delighted to discover once he woke back up that an invitation to attend next year’s assessment had been extended to him and that G had been added to the task-force too. I can’t reveal too much about what our findings were until the results are published, but I will say that we did find a problem with the disabled toilet in the main reception area. We were surprised to discover that it wasn’t really big enough to accommodate M, his wheelchair, his extended leg and me and that we didn’t have the space to manoeuvre him from chair to toilet once we locked the cubicle door. It appears that M’s broken leg came in handy on that day, though I’ve no intention in offering a similar expertise to next year’s PLACE assessment day! Since then, M and I have found ourselves sitting in the fracture clinic at our local hospital assessing what we can see surround3-tips-to-improve-the-way-you-write-Web-Contenting us, just as if we were in the midst of another inspection. What’s more, as often comes of these things, some more opportunities for both children to be involved in an ongoing capacity with developments at GOSH came out of that day which is really exciting, but that, as they say, is another story.

Our thanks go to…

The week is winding down and I am definitely looking forward to the start of half-term and the chance to have a sleep-in over the weekend.  One’s thing for certain, being active in raising awareness whilst eating a restricted diet really takes it out of you!thank-you-languages

With T for Thanks being our topic for today, what else could I do, but issue a few heart-felt thank-yous to those who’ve made a difference to us in the 12 months since the last NEAW. It’s tricky to know where to start, but, in no particular order, I’d like to thank:

Our families – well it was a given really, wasn’t it?  But whichever side of the ocean they may live, our families have been there in whatever way they can 澳大利亚孩子-1202242and supported us in the tricky decision to move M to a NG-tube and the elemental diet.   We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

Our friends – another obvious lot, but again we couldn’t have survived the past year without them all.  Their help has been invaluable: from text messages to lengthy phone conversations; early morning G-sitting to late night conversations with a cup of tea; and much-needed hugs to unexpected hospital mail, every single gesture has meant more than they can ever imagine and helped keep us strong.

GOSH – our consultant, her great gastro team and, in particular, the fantastic nurses who work with such dedication on Rainforest ward. Their care for M back in December was just amazing and without them looking after us both and giving wise words and training, we’d have struggled even more with the reality of the NG-tube and the feeding pump.  We also owe massive thanks to M’s fabulous dietitian, Colorful solidarity design treewho is always at the end of the phone or the email and has given me lots of helpful recommendations as well as reassuring me that I’m doing things right when it comes to the whole food re-introduction thing.

M’s School – I am very aware of just how lucky we have been with the staff at M and G’s school. They have been so understanding of how life was changing for both children during this school year and have made every effort to look after them and help them feel happy and safe when at school.  5 of the teaching staff bravely took on the role to learn how to manage his feeding pump, which meant that I could return to my job, confident that they were competent in what they needed to do.  This week they were also quick to agree to M’s request to share his presentation to the rest of the school and every teacher made time to make sure their class could see it and ask any questions they had.  This school has done a wonderful job of nurturing both my children and I will be sad when G moves on to “big school” in September.

G – the best big sister that M could ever have had.  She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time.  She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home.  P1000121And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

Mike – I couldn’t finish without recognising the person who stands alongside me on this, the most challenging of journeys we’ve been on together, and is my strength when I’m feeling weak.  We’ve reached a harmony that enables us to take turns in being the strong one during appointments and I can’t think of anyone I’d rather be facing these decisions with.  He also understands my need to have some time to escape from the day-to-day grind of EGID and puts up with me disappearing off twice a week to choir rehearsals.

And thanks to all of you, who’ve kept reading my blog, put up with somemany…repeated requests on my part and have done an amazing job at sharing my posts on.  Your silent show of support is what helps keep me going, even when times are tough.