"Brilliant people, disjointed organisation"

I was invited to write this by one of the brilliant NHS workers that I encountered during my elderly mother’s recent illness. I hesitated at first to share my thoughts because they are not all positive, and such observations might not be appreciated during this horrific coronavirus crisis. But actually, that is exactly why I have chosen to share this story: I think it is important that we don’t dismiss all NHS shortcomings as a consequence of the COVID crisis. I am afraid, and to be honest I expect, that all issues during these times will be parked at the door of ‘this unprecedented situation’. Whereas, in my opinion, COVID has not caused these issues, it has simply exposed them.

At the beginning of the story mum was a relatively healthy 81 year old, living at home, with some memory issues. She became ill at the beginning of March with diarrhoea, extreme fatigue, shortness of breath, mental confusion and disengagement, and was advised in a GP consultation to ‘stay hydrated and take paracetamol’. A couple of weeks later, since she was becoming very weak, I called the GP and my mum was prescribed (over the phone) antibiotics for a suspected water infection. After a further week of deterioration, I called the surgery again. At this point my mum could not walk, stand, or even sit up in bed. She was quite incoherent, and had fallen heavily 4 times in 48 hours. On reflection, I probably left it a bit late to call again, but no one wanted to bother the NHS at that time. The GP came to see her and arranged for her to be admitted immediately to A&E at the QMC.

This is where the whole experience of the NHS, became rather distressing for me and my dad. The ambulance crew were great, and encouraged me to go with the ambulance to the hospital, since mum was pretty confused and poorly. I arrived at the hospital with the ambulance but I was not allowed in – no visitors were being allowed in, and apparently this had been the case for a few days. Of course this made sense, but the ambulance crew told me that they had not been informed of the policy. They were as frustrated as I was. I went to the A&E reception and was given a phone number to call later, once she had been ‘booked in’. I called that number, and other numbers that I could find on the internet, including the QMC main switchboard, repeatedly during that afternoon and evening…but no answer. Plenty of advice on COVID via pre-recorded messages, but no one answering the phone. I tried again the following morning, but with the same result. We didn’t know where mum was, never mind how well or poorly she was. Quite by chance, the staff member that invited me to provide this feedback, called the following lunchtime as part of a regular follow up, and offered to try to locate mum. They managed to do this, thankfully, and I was able to call the ward and speak to a nurse. That was the Tuesday. I managed to speak to a doctor for the first time on the Thursday. In the meantime, updates from other staff were vague and ambiguous, and promises to return calls were not met. I was told that mum had had some scans, but the nurse was unable to tell me what sort they were: not even X-ray vs MRI. It just seemed like visitors were banned but no one had put in place any type of substitute communication protocol.

When I spoke to the doctor, I got a few more facts, but it was clear that they was not familiar with the case notes either. In fact, another member of staff told me that there was no way that any of them could read the notes. I must have recounted mum’s story to the staff there on more than 5 different occasions to different people. To their credit, when I told the doctor that mum had a brain scan scheduled before she was admitted, and that this it would be a great time to get that done, it was arranged. I was also told that she had been taken off one particular medication because it was causing some side effects (low sodium). But we had been through this exact cycle a few months earlier. Back then, the GP put her on it, the hospital took her off it. The GP put her back on it, and now the hospital is taking her off it. When I asked the doctor how we could get out of this cycle was told I should discuss with the GP. This is where I just don’t think the system is patient centric. This was one example of where the various departments don’t talk to each other. In effect I was being asked to liaise between doctors on a medical judgement. I get it that the hospital concern is more urgent and short term, and the GP is probably looking at a longer term picture, but mum doesn’t live her life in two separate compartments: long and short term. She needs the best overall solution with whatever compromises that brings, but it seems like the organisation isn’t set up to facilitate that. A further example of this lack of continuity was that when the brain scan was done by the hospital, I was warned that they would not interpret it, we would have to go to another department, at another hospital, to get that done. It may appear to be efficient that way, but it hardly puts the patient needs first, in fact one is tempted to think that it puts the needs of individual NHS departments first.

To my great surprise, I received a call from a Staff Nurse on the ward that mum was in, that Thursday evening. I was given a long apology for the way we had (not) been kept informed. I don’t know what prompted that, since I had never asked for an apology, and I had tried hard not to pester the team there. I restricted myself to one conversation a day, on behalf of our family and mum’s friends, just to check that mum was ok, even if that took 5-10 calls to achieve.

The following day/night, mum was transferred to the City hospital. To this day we don’t know why. I was informed of the transfer by the team at QMC and give a number to call. Again there was no answer to the number that I had been given. After a day of repeated calls, I dialled what I deduced was a neighbouring ward to see if I could establish a line of communication. An incredibly kind team member there offered to go herself to the ward where mum was, and gave me a new number to call. This time I got through, and was able to re-establish that mum was comfortable. But that was about it, no insight whatsoever into what the problem was. By this time she had been in hospital for a week, and the nearest I could get to understanding the problem was that ‘almost any symptom can be a result of almost any cause’, to paraphrase what I was told. I will be totally honest here, in my more frustrated moments, I interpreted this as, ‘we haven’t got a clue, but the sooner we can eliminate a couple more issues, the sooner we can get her out of here and onto the next unconnected part of the NHS’. It’s a bit of a cynical view, but it was a genuine feeling.

After her unexplained stay in the City, mum was transferred to Lings Bar. Things did improve here - greatly. The staff were happy to explain what was going on. The OT and physio people called back. The switchboard worked. Despite the context, it was a very good experience. After a few days in Lings Bar, mum began to improve. We don’t know why, but she did. The team there recommended that she be discharged home, with a 4 x per day support package from the START team (apologies if my terminology is not accurate). Mum was certainly significantly better, but one particular problem remained. For the first time in her life she had become incontinent: doubly incontinent. The team at LB advised me to call mums GP surgery to get an incontinence assessment, advice and supplies. From there, I was referred to the Community Incontinence and Prescription team, and from there to the District nurse, who told me that they were only doing critical visits due to COVID. I asked if there was any provision for newly incontinent 80 year olds just discharged from hospital. I was told ‘no’ and advised, and I quote, ‘to buy pads at the supermarket’. It wasn’t a question of cost or convenience, I simply didn’t know what I was doing. So we searched on the internet, bought pants, pads and a Kylie! I learned a few new things in that period! To a healthcare professional this might seem like a trivial condition, but for me, my 87 year old father, and mum, none of whom have any experience of the problem, it was a big concern. Mum is still waiting for the assessment.

We don’t know if any of mum’s health issues were caused or exacerbated by COVID, to our knowledge she was never tested.

It’s a minor matter, but maybe one that isn’t obvious from inside the NHS: my phone costs, just for calling the hospitals, amounted to about £80 during that time. The repeated pre-recorded messages, which you have to go through even if no one subsequently picks up (about 50% of the time), actually cost quite a bit.

Mum is much better now, enjoying life and brilliantly cared for by a local care agency. I want to thank the many people who tried so hard, and were so dedicated to her care during this period. But I also want to call out the disjointed, under-resourced organisation that is the NHS. It seems to me that sometimes it simply isn’t fit for purpose. The dedicated people delivering stunning care, are doing so despite the organisation, not because of it. I desperately hope that the failings that have been exposed by this crisis, are tackled properly once we are through the worst, and not all excused by this ‘unprecedented situation’. I am not that optimistic though, I fear that the politicians will praise the NHS as a whole, and fail to separate two components for different treatment: the brilliant people, and the disjointed, under-resourced organisation.