I actually had no intention of doing any of this. To explain, I am the primary carer for a close relative of mine in hospital.
This week, I had to get a close relative in as an emergency to a large local NHS teaching hospital here in London.
I came across islets of great care. All the nurses were working around the clock. The clinicians looking after my relative indeed showed the 6Cs you’d wish for. The porters who wheeled my relative to investigations were very pleasant when I happened to be there; not stand-offish and very human.
This teaching hospital in fact saved my life in 2007, so I come to the situation with no malice at all. Quite the reverse, I have substantial respect for the staff there.
But there were aspects of really ‘not great’ care which came to my attention which alarmed me. I was close to coming to make a formal complaint, and indeed received the pack from PALS. The purpose of this complaint was to ensure that my concerns did not bubble under the radar, but actually got trapped into the corporate governance systems. In the end, none of this was necessary as my relative received a new consultant, and I had an open discussion with him and two senior nurses on the ward. They took on board my concerns, and the new Consultant who is a geriatrician described my suggestions for improvement as very good.
As a Member of the Royal College of Physicians of London myself, and fully on the medical register, I cannot interfere with my relative’s clinical issues. But sitting as a relative was stressful for me, watching aspects of bad care reveal themselves.
Last week, a cannula was ‘seen’ and not attempted – and delayed by several hours. I can’t reveal what subsequently happened due to confidentiality. As a spectator, this made my ‘carer experience’ worse.
Last week, a junior sister told me off for turning up ten minutes early for visiting hours (2 pm – 8 pm). In explaining herself, she said (verbatim), “she was well within her rights to enquire” – and then progressed to tell me nothing about John’s Campaign nor the RCN’s “Triangle of Care’ which puts at the heart of care a carer, professional and patient.
A few days ago, a medical student tried another cannula. He failed, said he would be back in 10 mins, and never returned. I then asked an hour later to the nurse why the cannula was needed. She said she had no idea. I asked her to ask the medical student whether it was still needed. The nurse looking after my relative said, ‘The medical students says it’s all sorted now.’ 20 minutes later, a porter came to take my relative for a scan, but then it transpired she needed the cannula for that. The junior doctor then explained to me for the first time why the cannula was needed. I went with my relative for the scan, returned, while my relative waited downstairs for a porter. In the meantime, my relative missed an investigation on the ward. I returned an hour later after meeting somebody totally different. On my return at 6 pm, I witnessed a third person attempt the cannula for the investigation which had been bounced to the following day.
It does nauseate me there does not seem to be people who are able to do cannulas in a timely manner on the ward, but this is actually the least of my worries.
I witnessed many examples of patients with cognitive problems not being able to remember interactions on the ward rounds. Ward rounds tended to happen in the morning, when I was not actually allowed onto the ward due to visiting hours. I witnessed other patients being taken off to investigations without any explanation at all – literally being treated as if they were cattle to be transported. I was on a ward round when a Consultant did not even bother introducing himself to me, even though I was there as a relative. Until yesterday, no medic or nurse had involved me in any shared care of the relative, as would have been consistent with the RCN’s “Triangle of Care” guidelines. I witnessed patients being seen by different clinicians every day, totally disorientating for them as they were clearly in an acute confusional state anyway. This is not person-centred care.
But there is hope. The Trust has completed a successful pilot of a handbook for all staff including porters on dementia. It’s brilliant and contains advice – such as the need to be aware that people with dementia might not communicate effectively they’re actually in pain. There will soon be a therapeutic massage service, to help with the wellbeing of carers of people with dementia. A ward somewhere there has special lighting, conductive to improved wellbeing for people with dementia and carers. And they will tentatively roll out John’s Campaign – for people with cognitive impairments who need to have a patient advocate there, this is not a luxury – this is a necessity.
I think also what made a difference was the consultant looking after my relative from yesterday being a Fellow of the Royal College of Physicians, and being dually accredited in general and geriatric medicine. The previous physician was a (good) jobbing physician for adult general medicine, but one who did not introduce himself – and he seemed more concerned about showing off to his juniors whom he called ‘boys’. That doctor in question could have concerned himself with various clinical issues of my relative, which are some of the ‘geriatric giants’. The geriatrician instead crossed off unnecessary investigations and drugs – was entirely practical – and was very keen on preventing further acute hospital admissions, improving wellbeing, and setting up a proactive support in the community for the clinical problems facing the relative.
The new consultant geriatrician viewed my relative to be independent, whereas the three AHPs who had seen my relative had tried my relative out on various mobility aids which she in fact totally hated. My conversation with the social worker was superb, contrary to my expectations. The nursing staff had thought for a week that my relative lived alone. So it was with some amusement that the new Consultant said pointedly yesterday to all of them in our formal meeting together that I lived with her.
So – progress.
I think ‘whistleblower’ is an unnecessarily strong word for the situation I found myself in. But all feedback is gold dust for the NHS, I now strongly believe. I also recommended a point of contact for all relatives. Nobody on the ward ever introduced themselves on the phone with their names or responsibilities. I thought originally the #hellomynameis campaign was a bit gimmicky, but now I 600% see where Kate Granger is coming from.
A note to this Trust – please do not treat carers as invisible, and do not treat patients as targets of investigation and speciality follow-up merely. They are persons with their own beliefs, concerns and expectations. And above all, I am pleased senior people at this Trust were utterly brilliant in acting on feedback.