Regular readers may have noticed I have been somewhat quiet for a while and this is because I have been in hospital for 3 weeks with a foot infection and liver infection. I thought it would be useful to offer some observations as a professional patient. By this, I mean someone who despite looking harmless to staff actually has a good idea of what should be happening from my work with Care Quality Commission and other bodies.
My first observation is hospitals are not very good at understanding the needs of people with lifelong impairments like cerebral palsy. Staff do not understand they need to establish what is normal for me by asking me, not by making assumptions. Since I arrive in a wheelchair, staff assume I am unable to walk at all, which is not the case.
Hospitals never seem to understand nor accept my lifelong chest issues due to aspiration. This time, despite my endless explanations, they wasted 3 days on tests on my chest as they asked endlessly if I smoked, as if I reached some kind of crisis point, they were even considering ICU!
The second observation is different wards will have different understandings of impairment and people’s level of independence. My stay was spread out across 3 wards. The 2nd ward was a vascular ward, where people’s mobility was strictly controlled by the physiotherapists. With assumptions at its highest, I was force to remain bed bound, disallowed to do anything for myself. It also did not help that lying in bed all time flat is extremely bad for my aspiration! I found this extremely very disempowering, especially as any frustration I had for this undignified situation was interpreted by the cream of patronising nurses as challenging behaviour!
When I reached the third ward, Gastro ward, who were more used to self-care patients, and with the assistance of my personal assistant, I clearly explained to the staff that while I may need some help, I was more independent that people assumed. The message got through and the situation was eased.
The next observation is slightly worrying and that is that nurses generally seem to have a primitive understanding of safe manual handling. On the gastro ward, everyone had to be weighed as soon as they arrived regardless of the time of day, how well they were or how limited their mobility was. Without a hoist or any other lifting device in sight, I used to hear through the often pointless curtains nurses struggle to get patients weighed standing who really should not be out of bed, it was like listening to amateur hour as I closed my eyes hoping I would not hear a fall occurring!
Communication is my next observation and the winner or loser here, however you see it, is the catering staff. The woman who served breakfast in the Gastro ward was not a jolly soul and this was reflected in her communication skills. I specifically remember hearing her ask very loudly and rudely a female patient in a side room 10 times if she wanted sugar on her cornflakes before a nurse had to intervene and tell Ms Jolly to use the pictures I guess were directly in front of her which the patient was using to communicate. This is the same Ms Jolly who demanded a please from the romanian patient in the next bed to me who was really confused and struggling with his english.
The final observation is really symbolic of how hospitals can really miss the mark in terms of dignity. About a hour before being discharged, this jobsworth agency nurse I had not seen before despite now 2 weeks on the ward, made a beeline to me, sat down and softly asked how were my pressure points were, I said okay, now bored with this reasonable but endless questions. Then, to my surprise she asked, assumingly off her own back, if I would mind if she inspected my bottom. Now, this was too far and I politely said I did mind and left it at that. She walked off probably not expecting that response from ‘someone like me’. My point is the number of assumptions she would had needed to make to single me out for her alien probe shows the subtle prejudices I face everyday.
Nothing here warrants material for a complaint but it is worth observing as I believe it shows the rhetoric of hospital policy is not often what happens in practice.