My experience of emergency admission to Leicester Royal Infirmary

I live in Leicester, and I am a former psychiatric social worker. My job involved a lot of close working with NHS colleagues and many visits to hospital settings. I have, therefore, always been on the cusp of being an insider and an outsider as far as the NHS goes.

I retired in 2018, but my retirement plans were then rapidly disrupted by being diagnosed with prostate cancer within six months of doing so. This was successfully treated with radiotherapy and by temporary testosterone suppression.

My recent problem started about the start of September when I woke up with pain in my lower back. From the outset, it was a bit debilitating. Still, I was initially able to carry on doing a lot of things. However, over the next eight weeks, it carried on getting worse. I saw my GP twice and a private physiotherapist after discovering that the NHS community physiotherapy service couldn't offer me an appointment until January.

The possibility was always in the back of everyone's minds that if my prostate cancer were to have returned, it could have spread to my bones. Still, there was no indication that this had happened. The focus was on it being a muscular issue, best treated with pain control medication and exercises. By the start of November, though, things had reached a point where it was agony just trying to get out of bed. I ended up urinating on the floor in the middle of the night on several occasions because I couldn't make it to the toilet.

This was the final straw, and I rang 111 for advice.

They got a first responder paramedic out to me within the hour. They decided I should be seen in A&E. They couldn't take me, as transporting someone requires a double-crewed ambulance, so they ordered one. These ambulances kept getting diverted to more significant emergencies. My wife and I eventually agreed to go in a taxi.

When we got to A&E, we were seen straight away by a receptionist to book us in, but we were told that it would be about a two-hour wait to see a triage nurse and about an eight-hour wait to see a doctor. The waiting room was packed, but there were just about enough seats for everyone, with no one standing except three pairs of police officers who were escorting prisoners, who apparently needed treatment in A&E and were tied up with this all night.

The triage nurse eventually saw me after three hours. She tried to get me an actual bed in ‘majors’, the section of A&E that handles people who are more seriously ill but whose lives are not in immediate danger. Unfortunately, they had no beds available there, so I had to stay in the seating area after all. However, triage did provide me with some very welcome pain relief in the form of oral morphine.

The staff were clearly rushed off their feet and working flat out, and most people seemed to recognise that all the delays were not their fault, although one person near me did start having a go at a staff member.

Eventually, I was seen by a doctor after about nine hours and sent for a spinal X-ray. Still, no one actually got to look at the results until a day or two later because this coincided with the computer system crashing. I was told, however, that there were concerns about blood tests showing that my calcium levels were "a bit high", and I was told that I was being admitted.

In due course, I was transferred to a different hospital for further assessment and was told that I would be given an MRI scan there. However, this took several days because the machine was broken, and there was a backlog, even when fixed. In the meantime, however, I was put on fluid drips primarily because of continued concerns about my calcium levels being "a bit high". I also adjusted to the ward regime of regular blood pressure tests, regular medication rounds, and people regularly coming to take more blood from me. Given all the fluids that they were pumping through me and my difficulties in getting out of bed, I also became obsessed with making sure that I always had access to a urine bottle at night.

Eventually, I got a provisional diagnosis. Based on my blood tests, they now felt that I had myeloma, a blood cancer that was causing swelling in the bone marrow of my spine. I was started on steroids as a way to start killing a lot of the cancer cells and bringing down the pressure in my spine, which had now been identified as the root cause of my spinal pain, and this did seem to start to bring some relief. It was also explained to me that the cancer was causing some bone breakdown and that this was responsible for my raised calcium levels. I was told the cancer itself wasn't curable but that it was potentially controllable. The average five-year survival rate is just over 50%. However, survival depends on many factors. No one can tell you exactly how long you will live.

With my diagnosis, I was told that I would be transferred to a specialist ward, but this might take a while due to bed availability. I, therefore, remained where I was, and I once more observed staff cheerfully doing their best despite the pressures created by obvious under-resourcing. Consequently, I accepted little things like not getting the help I needed to shower. There were a couple of issues regarding how the resource pressures were being managed that gave me cause for concern.

The practice was to get in either bank or agency staff, often just nursing assistants, to manage patients who felt they needed one-to-one supervision. This created a situation where inexperienced workers were expected to address some of the most challenging patients. At times, they appeared out of their depth. On one occasion, this caused me to raise concerns with ward staff after I observed an agency nursing assistant tell a patient to drink fewer fluids so they wouldn't need to keep going to the toilet.

Also concerning was that on one occasion, five patients on the ward felt they needed one-to-one, but they could only get in two agency workers. They, therefore, put two patients needing one-to-one in my bay and three in another, with the two agency workers being expected to "one-to-one" more than one patient.

Towards the end of my stay on this ward, there was also one particularly hairy night when staff tried to contain what sounded like one very agitated new admission who was demanding to go home and being racist towards staff. I later discovered this wasn't one recent admission but several in a row, who sounded alike and had all been admitted overnight because the ward had just reopened a previously closed four-bed bay. I knew this because I overheard staff talking about how it had been closed for thorough cleaning shortly after my arrival because bedbugs had been found.

Eventually, however, I was transferred to the promised specialist ward 10 days after my initial admission, at 6am, because that was when an ambulance was free.

Now that I had finally had my MRI scan and the results had been looked at, I was told they had shown an area of damage to the bone in my spine that could, in the future, press on my spinal column and cause problems. They wanted to zap this with a single intense dose of radiotherapy to nip it in the bud. Initially, however, they tried to discharge me home straight away to free up a bed and bring me back in to do it the next day, to do as an outpatient, then get me in again the following day for a bone marrow biopsy and then in again the day after for an appointment with my community consultant and nurse, to discuss future treatment plans.

I eventually negotiated to stay in one more day to have the radiotherapy, but this still left me with a problem regarding getting back in for the bone marrow biopsy, so when I got home, I put out an appeal on Facebook and was really touched by the response. Loads of friends and former colleagues got back to me, and so did many whom I had not even met and who were just friends of friends. I was actually taken to this appointment by a friend of a friend because he was the first person to get back to me.

Finally, although it was irritating to drag myself back in again the following day, it was a helpful meeting because it was good to meet my consultant and nurse and get a picture of the long-term treatment plan.

As I understand it, having stabilised with a course of steroids to reduce the pressure in my spine, I have some months of not-too-heavy chemotherapy to look forward to staying on top of cancer. I will then have a couple of weeks of very intensive inpatient chemo aimed at trying to wipe out everything before repopulating my bone marrow with my own stem cells. I should then go on to a long-term maintenance programme aimed at trying to ensure that any surviving cancer cells are not able to make a comeback and compensate for an ongoing degree of immuno-compromise.

The only fly in the ointment, in the short term, was that I also found out at this appointment that a test I had shortly before discharge showed that I caught Covid-19 on the ward. As a result of this, I was back in A&E overnight, within a couple of days, suffering from chest pains, which were diagnosed as being the result of pleurisy caused by Covid-19, somewhat delaying my recovery from the initial crisis.

I would prefer to have avoided all this, but I subscribe to the stoic philosophy that there is no point in stressing over things beyond your control. Instead, I am focusing on things I can do something about. Although it looks like I will have to re-evaluate my long-term fitness goals, it should eventually still be possible to slowly rebuild my fitness to a decent level, allowing me to do most of the things I want to do. Also, I believe in using crises as a spur to get on and tackle all kinds of things you might otherwise have kept putting off.