"Little things make a big difference during hard times"

My grandmother was recently admitted to PRI and stayed for a week on Ward 3. I am writing her story because we, as a family, are keen to share both the good and not so good aspects of her care and our experience. We would love for praise to be passed on where appropriate, but we'd also love it if someone took notice of the things that made everything even harder at what was already a very hard time. 

She was admitted to Ward 3 with pneumonia following months of deterioration at home. She was diagnosed with a very aggressive, progressive neurological condition and passed away within a week. Obviously this was a huge shock for everyone, but there were several members of staff who really were excellent and who we want to say thank you to. Firstly, to the doctor who explained things clearly to us and her and who took the time to make things simple and understandable. Secondly, a massive thank you to a junior doctor on Ward 3 who displayed exemplary listening skills and who made us feel listened to and involved - she was so kind. We also want to thank the staff nurse who was there when grandma was admitted and also there when she passed away - her compassion was hugely appreciated and we'll never forget how she made a terrible day just a little bit better by being so lovely. 

There were, however, several things which ultimately made us feel like my grandma's death was not the best it could have been. As a medical professional myself I am totally aware of the stress upon staff and facilities during the winter (peak flu season is never a good time to develop pneumonia!), however it was often the lack of 'little details' that left us all feeling a little let down.

She was admitted to a bay on Ward 3 and stayed here throughout her admission. She deteriorated extremely quickly and when it became obvious we were looking at days rather than weeks we began to beg for a side room. Being peak flu season the side rooms were full (entirely understandable) but we were often left with the feeling that some staff didn't understand how long she had left, and our daily questions about hospice referral/ side room availability were sometimes greeted with annoyance.

There was an almost complete lack of chairs in the bay, meaning that we had to spend hours kneeling on the floor or crouching by her bed (despite searching the entire ward) - all we wanted to do was comfortably hold her hand towards the end. No member of staff made us aware that we could stay longer if we wanted (presumably because we were in a public bay, but one family member had travelled from abroad to say goodbye and would have liked the chance to sit for longer if possible) and she kept telling us that she was hot (no extra fans available) and upset by the noise of the bay.

We left one evening and there was a trail of blood in the corridor - the same trail was there the morning after.

Upon admission we made staff aware that grandma had lost a lot of weight recently, and it was quickly identified that she was malnourished and unable to swallow (so was made nil by mouth). She was also almost totally bed-bound. Despite this, she was not assigned a pressure relieving mattress. We were told by medical staff that she developed a pressure ulcer, but nursing staff vehemently denied this. Either way, in her final 2 days she complained of painful skin, and it distressed us that she remained on a 'normal' mattress until she died. Her mouth began to develop a coating due to her NBM status, and this makes me think her oral care was less than ideal. She was given pink foam sticks to moisten her mouth, but on several occasions we visited and found her table out of her reach; she lost the ability to speak and we all feel that because of this she was a little ignored.

Dirty pyjamas were frequently recycled despite clean ones being in her locker, and one day some very heavily soiled pyjamas were found in a non-soluble bag stuffed in said locker. If we hadn't found them by accident, would anyone have told us they were there? Or would we, as I suspect, have found them several days later? We all know that staff are busy, but she never had her hair brushed or her glasses cleaned during her time on Ward 3 - these are small details, but believe us they make all the difference. She was dying, and while staff may see hundreds of similar patients and families pass through the doors each year, we are left with these memories of her final days forever. 

On the whole, her care was good and we're aware that things could have been so, so much worse. But it really is the little things - a reassuring word, a comfortable chair, noticing that a family member has had their mouth cleaned and hair brushed - that stick with you when you think back over a loved ones time on a hospital ward. We thank the staff who went the extra mile, and hope that maybe the wee details will be picked up on one day too.