I have to bite the bullet and write this post. I have successfully put off writing it since my hospital stay in April 2014 but its time.
I've been reluctant to write it as there is so much NHS bashing in the media and I don't want to bash an institution that has brought me into the world and saved my life but like any large institution there are things that could be improved and my hospital stay was far from plain sailing.
So if any of my readers are part of the NHS this isn't an attack on you but please take a look at the points I am raising and look at the departments you work in. Are there things you could be doing better? Are there things that are happening that are wasting precious resources? Try and look at it as if you were a patient because if you forget that the patients are at the heart of the NHS that's where things will go wrong.
My Consultant, a very hard working, caring, diligent man, a little caustic and with a dry sense of humour that can be hard to "get" unless you're me and find him hysterical, is in essence a specialist in Geriatric Medicine / General Medicine. Which means whenever I speak to someone who has not come in contact with me before it leads to some confusion when I give my date of birth. I am one of his youngest patients. I came to him through being referred to the completely wrong clinic, initially he suspected that I had somatoform disorder - after all that's what my notes said from all the other doctors that had ever seen me since 2007. He either took a chance on me when he agreed to a tilt table test or just did it to shut me up. Either way I am grateful that he listened to me when I produced my list of blood pressure and pulse readings at our first meeting.
Lets call him Dr B, I have given out so many pseudonyms in the past, I apologise if I've used this one before. Dr B is in charge of the ward I stayed on and its a locked ward due to the majority of his patients having dementia. Its not locked in the sense you can only escape by stealing the keys but unlike other wards in the hospital the doors close automatically and you have to hit a discreet button to get the doors to open. I have no problem with this, after all if your loved one is suffering from any form of dementia the last thing you want is to find they have absconded from the ward and are wandering the corridors.
I've never been on a locked ward before so that was a little weird, plus it was a nightmare to navigate the doors for my husband who was pushing my wheelchair. There was a very small window of opportunity once the button was pushed to get me safely through without being crushed by the door.
On arrival we were informed that my bed wasn't currently available and that we should go to the restaurant and wait for 30 Min's. Again I don't have an issue with this. A patients discharge can be held up for a variety of reasons and on the majority occasions its not the wards fault. When we came back we found the bed still wasn't ready and we then had to wait in the staff room for over an hour.
90 minutes or more later, my bed was ready and I was shown to my room. I had a small private room with a wash hand basin but no toilet facilities. This wasn't ideal as it meant I would have to struggle to the toilet myself or call for a member of staff to help. The amount I drink due to excessive thirst meant if I called them continually for help I knew I would rapidly become their least favourite person.
As I have written in a previous post "Permission denied" I was swabbed for MRSA / C Diff - intimately. I had to provide a urine sample as because I am a woman I have no control over my reproductive system so I maybe pregnant. I know that people can be pregnant and not know about it but with zero maternal instinct contraception has always been high on my list of priorities. I understand they are covering their arses but it irritates me. I feel its like, you have a womb so therefore you have a reduced mental capacity. Do men have to provide a urine sample every time they rock up to A&E or when admitted to hospital?
A short while later Dr B popped his head around the door and within the space of 5 minutes had dropped the bombshell that I would be in hospital for a week. My husband and I had planned for two days - the two days that we had been told in the previous November. I was furious as I had emailed Dr B and Dr B's secretary in the weeks leading up to this admission asking about the length of stay and asking other questions. I never received a reply. I managed to bargain the stay down to three days. My husband had taken a weeks holiday the week before as that was when I was supposed to have been admitted. Because that was cancelled he had to take emergency holiday from work to be able to take me to hospital now. I explained that my husbands work were accommodating but this was unacceptable, that life existed outside the hospital, a life where there is a mortgage to pay, an economic downturn and employers making staff redundant.
I understand that Dr B is a busy man, his clinic is expanding all the time. However this could have all been avoided if someone had just taken the time to communicate what would be happening during my hospital stay and the length that it would be. What if I had children and needed to sort out childcare etc, I had to sort out people to sit with my dogs as they can't be left. So it threw all of our plans out and meant my husband had to contact his employer and tell them he may not be in work for one of the busiest weeks of the year (after Christmas).
I then had a nice friendly doctor come in and take a medical history ( again another colossal waste of time when you are resting on my vast pile of notes whilst taking it). This took over an hour and a half and I should imagine this doctor thought her visit to me was going to be a quick in and out. I had to spend the majority of the time explaining my conditions - now I could understand this if my admission had been an emergency but this was a planned admission, perhaps a perusal of my notes and a quick session on Google would have been quicker? It was also clear that she had no clue about EDS or Severe Autonomic Dysfunction, nice interpersonal skills but that won't save my life in an emergency. I hate saying that on first impressions she was a really was a lovely person but like everyone else on the ward she was clueless about my condition.
Also after I left hospital I found that she had been a little creative on my discharge notes. As part of the history taking process she was supposed to examine me. This never happened however my discharge notes did not admit this omission. It was covered up with "on examination her abdomen was found to be soft and her lungs clear". My lungs or abdomen had never been checked as she had never come back to check them. This is bad doctoring and is inexcusable if it is compounded by essentially lying on my hospital notes. So the "nice" doctor had lied another reason why I find it so hard to trust the medical profession.
As usual I asked if I could self medicate - I hate having to wait for my tablets when I am in pain. This isn't a pop at the nurses, in the ward there clearly weren't enough nurses or health care assistants and they were rushed off their feet. If I self medicate it means you don't have to answer my bell and it saves you a job and it means I get my medications on time. I manage them perfectly well at home, I am not an idiot patient.
As usual because I take opiates - morphine slow release and oramorph, these have to be stored separately in the wards controlled drugs cupboard. Again I understand its for safety and its the rules but its highly irritating when you are allowed to administer these at home unsupervised. It also meant throughout my stay that my pain wasn't well controlled as my slow release morphine tablets were given to me 2 hours late on the first day and then an hour late the next and I had to continually battle with the nurses administering my oramorph to give me the correct dose.
I am allowed to take 5ml / 10mg of liquid morphine every four hours at home should I need to. I never have because at home I stay on top of my pain. I can go days without taking oramorph as long as I stay on top of my pain. Its my last resort medication, when every other pain relief option has been exhausted. When I take it I take the prescribed 5ml / 10mg dose. It was written in my notes that this was the dose I should receive yet for some reason every nurse that I administered the oramorph when I asked for it decided to half the dose. When I asked why they wouldn't give me the full dose I was told "you can wait an hour and see if you need the other half". Like every patient, I know my body, I know that a half dose won't cut the mustard, especially if my other pain medications haven't been given to me on time.
In a lot of pain at 8pm the first evening I ended up losing my temper with the nurse on duty. It wasn't her fault she had only just started her shift, she sat with me and explained that nurses always try and administer the lowest dose of oramorph first. I understand that's their approach but nowhere in my notes did it say reduce my medication by half, they didn't give me half my contraceptive pill, or one paracetamol instead of two, or one slow release morphine tablet instead of two so why ration the oramorph - it was being administered from the bottle I brought in so it wasn't costing them anything!
Being in pain when there is no reason to be is a horrible situation to be in. I spent my entire hospital stay chasing the pain trying to get on top of it. For the 24 hours in their care the pain was horrendous and it took me 48 hours once I was home to get back on top of it. It was a situation that didn't need to happen and clearly none of those administering my medications appreciated the level of pain I was in.
My pain is triggered by hospital beds, I either get a memory foam "style" mattress which means my joints have pressure applied on them that they don't usually have or a mattress that is too soft. I know many people with EDS find memory foam mattresses a real help, I like to be different. I have a memory foam topper but underneath my mattress is hard because my body finds it so hard to support itself when I am asleep.
I clearly wasn't her favourite patient ( she was also the nurse that I told I wouldn't be having a bedsore check) which was made abundantly clear when she told me the lady that had been in the bed before me had the same illness as me but was much worse and had been sick 10 years. I felt like telling her "Its not a bloody competition" I kept my mouth shut as I was still waiting for my slow release morphine!
I think the situation was difficult for both nurses and I because they were used to compliant elderly patients who didn't speak up for themselves. This was more than evident when I had to complain about the mess the shared toilet was in when I went to use it. The patient two rooms up from me was having explosive diarrhoea and wasn't always making it to the toilet bowl. Despite me informing the nurses of the toilet situation and the fact I was desperate for a wee, 20 minutes later the toilet was still a no go area. I couldn't wait any longer and I knew I would be waiting longer still if I asked for a commode. I tiptoed through the path of destruction found some toilet cleaning wipes and cleared up the other persons mess so that I could use the toilet. I shouldn't have had to do this and it made me angry. The staff were well aware of my limited mobility and the fact I couldn't go clean toilet hunting.
I chatted to the matron of the ward the following day after leaving less than positive feedback on the card the ward administrator had given me. I was told that the nurse looking after me had point blank refused to clean the toilet feeling it wasn't in her job role. By the time the matron inspected the toilet she couldn't see an issue, I set her straight and told her there was no issue because I had cleaned it up. Something as a patient I shouldn't have had to do.
Having been a manager of people, which essentially this matron was I found it startling that her request for my nurse to clean up the mess was ignored. Perhaps this is where the problem lay in the ward that those working for the matron ignored her and essentially there was no management actually taking place in the working environment. I want to say again the matron struck me as a lovely hardworking person but her time was being used doing the jobs those working for her were refusing carry out. In a previous life when I worked staff (including managers) could be disciplined for failing to carry out a reasonable request, I would suggest that clearing up bodily fluids is reasonable set in the context of nursing and if you don't like it perhaps nursing isn't for you?
I realise I haven't touched upon the point of my admission, the octreotide trial and that's because that was beset with disasters also. I am saving that for part two.