My blog is normally a light hearted (read rubbish) bit of pith and nonsense, or my views on some current event of some form. However today I’d like to blog about the NHS and something a bit more close to home. Recently I’ve been reading the reports on the Mid-Staffs scandal with interest, not just as a voracious reader of current affairs but and this is rare for me, genuine outrage and anger. I think a large part of my anger over what happened in Mid-Staffs stems from my own experiences with the NHS. Normally I wouldn’t be quite so personal on here but I feel it’s a tale worth telling, before I do though I will add some background detail. I have a great affection for the NHS, my mother was a manager in a large hospital for many years and as such a lot of our family friends are doctors of one sort or another. During my degree I spent huge amount of time in hospitals. My cousin is a very dedicated nurse. I have every reason to love the NHS and I am an ardent supporter of what it’s function is, I believe it should be state funded and free for all to use.
So onto my story, about 6 years ago my grandmother was diagnosed with dementia, we’d known for a while she had it though wrongly thought it was alzheimer’s. For a period of time she lived with the disease and we were complicit in telling nobody what was happening, she asked my mum and I not to broadcast things or to go to the doctors and we respected her wishes. Eventually she needed help so we spoke with the doctors, found as we suspected nothing could be done and I moved back into the family home to help with her care.
Now I will say at this point we were well enough off that I could take time away from my business and mum was semi-retired, for the last months of her life we moved to Scarborough, a coastal town she loved and had grown up knowing well. We cared for her at home for several months until one night she had a much more severe stroke. In the morning we found her half stood next to her bed unable to move and freezing cold, my guess is in the night she’d stood up to go to her toilet and the stroke had hit, rendering her unable to move or speak and so shed half stood shivering and cold ’til we discovered her in the morning.
We called an ambulance and she was taken to Scarborough Royal Infirmary, which is where my experience of how awful the NHS can sometimes be began. Over the first few days we stayed by her bed day and well into the night each day but with no change to her condition. The nurses seemed busy but unconcerned and as we were always there we often did whatever little things needed doing for her. We learned on the third day she’d had a severe stroke, and we were shown scans of her brain. The doctors held little hope of any meaningful recovery and we braced ourselves for the worst, indeed on the fourth day she had the last rites read. While I’m not particularly religious my grandmother was and for the first time since being in the hospital we noticed her eyes flicker with emotion when the priest was there and she shed a tear. From that point on we knew that while she could neither speak nor really move on her own beyond random arm movements, she was still somewhere in there buried below the damage done by the catastrophic stroke she’d suffered.
Over the next few days though she seemed to get lighter, the dark place she’d been inhabiting seemed to be less harsh, the faint light behind her eyes was growing ever so slightly stronger. Yes it’s tempting to believe something like this when you’re a grieving relative but at certain points she would smile or frown. Pictures of her big dog Monty (now mine) would put palpable pictures of excitement across her visage. While we didn’t dare hope for recovery we did believe she was perhaps out of the horrible place she’d been inhabiting.
Unfortunately this is where we started noticing problems, the first was compassion. The staff even when we were there were treating her as a hindrance not a person. She was unable to control her bowels so when she did have a movement she’d be laid in it and frankly the nurses were ignoring her obvious suffering, discomfort and lack of dignity. Even though mum and I were spending days there it an uphill struggle to force them to change her, on numerous occasions I threatened to do it myself but was told it would be a breach of ‘health and safety’ and they would get round to it eventually. They treated her as a nuisance and a chore, never a person who deserved respect and empathy.
By far the largest problem though was food and drink, during the stroke she had lost her ability to swallow. Now during this phase where she seemed to be growing in strength, whenever we ate or drank near her she leaned forward clearly craving what we had and on numerous occasions we were told we must not even give her a drop of water or food as it could kill her. Of course we obeyed unthinkingly, options were discussed has to how to overcome the problem one of which being we don’t and she would effectively slowly starve. However neither of us would allow this so we firstly insisted on a daily SALT test, which is where a speech and language therapist checks her ability to swallow and also in the interim they would fit a naso-gastric tube. We were warned that her dementia could mean she could pull the tube out eventually but we had to try. The first tube was put in by one of the nurses, during the procedure we heard my grandma cry out in pain. We sat there for 4 hours with her eventually persuading her not to pull it out, at which point they checked via ultrasound that the tube was in correctly and it wasn’t it was dangling painfully into her lungs. Again a nurse put the tube in and again she cried in pain again 4 hours later after we’d sat with her they found it had been done wrongly and had to come out.
The following day the doctor told us they’d tried and it was distressing and they should now stop trying. The night before though we’d spent some time on the phone to a friend of ours who happens to be a consultant gastroenterologist, he advised us that the reason it hadn’t worked was purely incompetence on the part of the person doing the procedure and that the best thing was for us to ask for a consultant anaesthetist to do honours. After much arguing we stood our ground and eventually well into the evening our doctor came, he spent literally 10 seconds with her, no pain or anxiety later the tube was in place. A scan confirmed we had our now working NG tube.
By this time it was late into the night, we spent another hour keeping her calm and then went home. The following morning when we came back to the ward to see her we weren’t allowed in due to an outbreak of diarrhea and vomiting. For two days we couldn’t see her as we were told the ward was having a deep clean and nobody was allowed in for fear of other germs. Thankfully she wasn’t affected by the bug but after the 2 days when we finally saw her we discovered the tube was gone and we were told she’d pulled it out during the first day of the bug. One can’t help but think if only we’d been there.
The following day a minor miracle happened at 6pm she passed the swallow test. The senior nurse on duty said we could give her a drink and knowing exactly what she would want she had her first sip of tea in nearly 2 weeks. We used a sponge but gave her a good half cup of sweet tea and the joy on her face was plain to see. For the first time in what felt like forever we had a little ray of hope. Yes we were torn, we didn’t want her to have such an awful quality of life but neither did we want her to die, yes it was unlikely but even the tiniest hint of recovery is something I think one always looks for.
The following day as we went in we took a cup of tea for her again but were stopped from administering it by the senior nurse on duty who told us we couldn’t as she hadn’t passed a swallow test. Of course I relayed the tale of what happened the night before but she told us it wasn’t on her notes and essentially accused me of lying about it! What made it worse was she then proceeded to tell me I didn’t know what I was talking about and I was simply being stupid. After a moment or two to calm down and seeing how keen my grandmother was for the tea, I ignored medical advice. I told them it was our choice and we would take any responsibility for any problems.
Over the next week and a half we continued going every day, the nurses stuck to their line that the passed SALT test didn’t happen and I continued to fight our corner. We gave her regular cups of sweet tea, chocolate buttons which melted in her mouth and good vanilla ice cream which did the same. She clearly enjoyed the food and was asking for more. Yes we could have been prolonging a poorer quality of life but there is now way I was starving an elderly lady to death, especially one who had been there throughout my life as a hugely important figure. During those final days she smiled, she enjoyed what we gave her, we enjoyed the time to say goodbye to her. She suffered a fatal stroke 10 days after passing we started feeding her. She died in the night peacefully and I’m sure in the full knowledge that we would be there again in the morning to take care of her.
As an aside when the morning came the hospital had another diarrhea and vomiting outbreak. Two in 2 weeks on the same ward!
The time I spent at Scarborough Hospital is one I will never forget. The wards were dirty. The nurses were rude, unhelpful, uncaring, clearly overworked and clearly utterly disinterested in patient care and utterly lacking in empathy to relatives. Our doctor was either the same or incompetent, much of what we were told at the time we later found out to be false.
My one lasting regret is that I never complained or spoke out afterwards. It is to my shame that the grief we felt as my Grandma died deflected me from complaining very loudly and very publically about just how poor Scarborough Hospital was in almost every regard.
As a final note, I do not say this as a political point, I don’t use it as a justification for any argument. I’m simply relaying my story of what happened to my family within the NHS. Yes the NHS is a noble institution and yes I would defend the ideals of it but that doesn’t make it perfect or immune to change. Clearly there are grave issues which require attention and I have no obvious solutions to put forth but I certainly don’t feel the NHS is above criticism.
actuarialchris 