A fairly eye opening experience
I recently had a ten day stint in hospital due to a CSF leak/intracranial hypotension. In layman's terms the fluid around my brain was leaking causing my brain to drop in my head. I’m planning on doing three posts about this experience; pros, cons and some (hopefully useful) advice. Starting with the cons. I feel like the NHS is a symbol of national pride and so it often feels as if it’s unacceptable to discuss any kind of flaws in the system. However some of the care I received/witnessed was concerning to say the least.
Of course there were some wonderful health care providers and I understand that many of the issues are simply a lack of resources. However this doesn’t change the fact that without adequate advocacy, time spent within an NHS hospital is now something which fills me with dread. Please see below a few of the examples of my time in hospital:
I was held in A and E for around 24 hours before I was transferred to a ward. The main symptoms I experienced was excruciating pain while sitting or standing. I was abruptly awoken on the second day, a bowl of cereal put in my hands, sat bolt up right and left in around 5 seconds flat. The pain and nausea from being sat up was immediate and extreme. I pressed the nurse call button but nobody came for around 15 minutes, the whole time I was in agony, I then started to shout for help, still nobody came. Eventually by chance a nurse came past and helped lay my bed flat, this was probably around 20 minutes after I pressed the help button. This was something I witnessed from multiple patients on multiple occasions. Call buttons not being answered and patients having to shout for help for extended periods of time.
As anyone with AD knows our treatment routine is incredibly important, a daily shower then followed by the application of moisturisers etc is essential in managing our condition. When coming up to the 24 hour mark in A and E I made it clear that I would need to have access to a shower soon. This was met with resistance and involved a significant amount of pushing to make it happen. It frankly felt like the usual dismissive attitudes we all face as skin condition sufferers and the imbalance of perception towards the care needs of some conditions compared to others.
Also, I was placed in a side room in A and E as I initially had suspected Meningitis however I would of course have to leave this room to go to the toilet. This meant that multiple times I was walking (or more like stumbling) through a packed A and E with what could have been a highly contagious and dangerous virus.
Again, my main symptoms were excruciating pain while sitting up and an extreme sensitivity to light and yet very regularly a health care provider would walk into my room immediately turn on all the lights and attempt to sit me up.
There were also numerous instances where pressure was applied to do what was easiest for staff rather than what my care needs were at the time. As an example, as mentioned, I was vomiting and in horrific pain if I was sitting up or standing but they would always try to get me to go to appointments in a wheelchair rather than on a trolley. If you're on your own and feeling awful it's all too easy to give in to this pressure. It also makes you feel very uncomfortable, as if you’re just making a fuss.
In the first ward I was in I was being woken roughly every hour throughout the night. I of course appreciate that sometimes there's no getting around it, for example medications or blood pressure checks etc. However I was having blood tests at 4:30am every day, had someone come in at around 1am to check the stock of a little tupperware box in the room and had someone shout from the doorway at around 2am "Do you have a cannula?!".
Leading on from this it was rare I felt any compassion, empathy or just general human interaction. It all felt very cold and clinical. Something which I also find quite concerning is that visiting hours are always after the doctors have done their rounds. Often patients are very unwell and it makes sense for the family to be there to support and make sure the right questions are being asked.
Considering the pressure placed on A and E due to a lack of available beds in the wards I felt like the system moved very slowly from within the wards. I could have easily been out of hospital a good few days earlier, with my bed freed up for another patient if there was a bit more urgency in providing the necessary treatment/procedures.
I understand that the NHS is stretched but in my opinion this doesn't change the fact that it is either fit for purpose or it's not. I don't wish to get political but I do hope that Labour use their large majority to do what is necessary to reform. The primary concern I have is for those without a support network and without the ability to effectively advocate for themselves. My brother has autism and I now know that if he was to ever be in hospital someone would need to be with him every minute of the day.
It certainly wasn’t all doom and gloom and there is still much to be grateful for having access to the NHS which I’ll cover in my next blog followed by some advice which I think can really help make the experience that bit easier. Spoiler alert: have someone who can bring you some different meals from time to time!
Comments