To Hell & Back

I recently became seriously ill, and so had to go through the UK’s NHS healthcare system this article is about my observations and experience. My treatment is still ongoing, so there may be a 2nd part to this article as things evolve. No doubt the things that I mention here can be read across to various hospitals and healthcare systems across the world as the same mistakes tend to happen across the industry.

? I noticed that my feet and legs were swelling quite rapidly, I tried to ring my GP (General Practitioner) to obtain an appointment, but as many of you know in the UK it is not an easy task. When I couldn’t get through I rang the NHS helpline and I explained my symptoms and they rang me back and to tell me I have an appointment with my GP the next morning.

? I went along to my GP and I had to give a urine test, it was dipped as an initial test and I was told that I had protein leaking from kidneys. He also thought that there may be some blood.

?Failure – He did not actually know there was blood in my urine so it wasn’t based on fact, it was an assumption. Also, I knew that blood in the urine is one of the indicators of cancer, so if I had not listened intently to what he was saying and taken the GP at his word my stress levels would have gone up.

?I was then told that I would need a blood test so I needed another appointment, which was made for 10 days’ time as that is when the specialist nurse would be in.

Failure – This delays diagnosis and treatment, also a GP should be competent enough to draw out blood samples for testing.

? I had my blood tests and by this time I had trouble walking as the swelling had spread completely from the waist down and was creeping into my arms and my weight had gone from around 84 Kg to over 110 Kg. I rang the GP a couple of days later to see if they had the results and was told that the results so far were clear, but they were waiting for a couple of outstanding markers. The next day the GP rang me to say I needed to get to hospital immediately and to pack a bag as no doubt I will be admitted. The GP asked if I needed an ambulance and I told him I didn’t as I could make my own way there. The GP rang me back and told me to call in at the practice to obtain a letter for the hospital as they couldn’t get through to them when they rang them.

Failure – It is not often that a GP will have to ring a hospital to arrange an urgent admittance for a patient but when it needs to happen it needs to be done quickly and efficiently therefore, there should be some form of a hotline that GPs can use for this purpose.

? I arrived at the hospital and went straight to A&E (Accident & Emergency) as I had been told to do by my GP, they read through my letter and told me to go to the main building and get directions from there. At the main building, I showed them the letter and I was given directions to a ward. On the ward, I was directed to “Fast Triage”. Fast triage meant that I was sitting in there for around three and a half hours waiting to be seen. I was then called in and it was just to take blood samples as this is all they needed.

? The nurse who took the blood samples, first of all, applied a tourniquet on my left arm, but could not see the vein due to the swelling that had spread to my arms, so I had to make a fist and see if that would help in raise the vein. She still could not see it but decided to go ahead anyway, after 4 attempts and much discomfort on my part, she gave up on my left arm and tried on my right arm. After 3 attempts she gave up on my right arm and decided to draw it from the back of my right hand instead which worked on the 1st attempt. I ended up with very badly bruised arms that took about 2 weeks to recover from.

Failure – She failed to deal with the facts, the evidence before here was that she could not see the vein, but she told me that she had never failed to obtain blood and I wouldn’t be her first, so instead of thinking about her patient (customer) and their needs and solving a problem she was focused on her pride. ??

? I was then directed to a large waiting room where I ended up waiting for around eight and a half hours before being told that they need a urine sample and then I could go home. I gave the sample to a nurse, then went back into the waiting room, and waited for another hour only to be asked if I had given the sample to anyone.

Failure – The sample had been lost, elements of Human Factors and lack of strict controls when dealing with physical samples.

? I had to go back to the hospital the next day, more blood and urine samples, then go for a scan of my kidneys. I went for the scan where I was informed that my kidneys and major organs were in good condition and that by the time I walked back down to the waiting room the doctor would have the scan report. I then went back to the same waiting room and waited for about eight hours before moving to a smaller waiting room and waited for another two and a half hours before I was seen by a doctor, who took a quick look at my swollen legs and informed me that I have protein leaking from my kidneys, but no blood. I will have to return the next day at 8:00 am and go to the renal unit where I would be assessed further.

? I returned the next day and arrived on the Renal unit ward and more urine and blood samples were required, then sat around for several hours before being seen to by one of the specialist doctors. I was told that I would have to come back the next day to be admitted so that I can have a biopsy on my kidney. As I was heading home I got a call from the renal unit to say that a bed would be available later that evening so come in at about 19:00. I arrived in the renal unit and just stood there as I did not know where else to go. Half an hour later a nurse who was passing by asked if she could help, I explained that I was being admitted and she told me I had to go to the nurse’s station which was tucked back in from the corridor about halfway down all of the wards so could not be easily seen.

Failure – No patient instructions on how to be admitted and no signage to say where the nurse’s station was located

? The nurse booked me in then gave me the ward and bed number and told me to go find it. I located my bed and then just sat in the chair reading for a couple of hours before a nurse came around to complete the paperwork for admittance which took about ten minutes to do.

Failure – The documentation could have been completed at the nurse’s station when the booking in was done thus saving time.

? The next day I had my biopsy and I was told that I had to lay on my back for at least seven hours, and afterwards I could go home. I ended up laying for about eight and a half hours before I was told that I could now sit up, I asked if I could now go home, only to be told that I couldn’t as the doctor had forgotten to sign the paperwork so I would be staying in for another night. The next morning at 008:00 I was told that I could go home but I would have to wait for a couple of hours for the documentation to be signed. Ten and a quarter hours later I was told that I could leave.

Failure – The delays in documentation meant that a bed that could have been freed up and made available for another patient was unnecessarily occupied.

? During my stay, I was given medication one of these is Enoxaparin Sodium injections which are used to prevent blood clots. On the ward, I was given a dosage of 100 mg. I was given all the various medications that I would have to start using but told to wait as I had to return to the renal ward the next day at 08:00, again urine and blood samples were taken and then had to wait seven and a half hours before being called in along with five other patients that had come in throughout the morning. We all sat on the ward and a different doctor walked over to one of the other patients and called out my name, I directed her to myself and she informed me that I would need a biopsy, I told her that she had obviously not read my records because had she done so she would have clearly seen that I had just had a biopsy. The renal nurse whom I got to know whilst on the ward rolled her eyes as she knew, but because of hierarchy culture did not say anything. The doctor went back to her computer and checked the records then came back and said here is your prescription for medication. I looked at the prescription and noticed some anomalies from what the previous doctor had prescribed so again I challenged her and asked which one was right. After some checking and phone calls, I was given a new prescription and told that I could now go. I went to the hospital pharmacy to obtain my prescription and I was asked by the pharmacist what my current weight was, luckily I had been weighed so I told him and asked why he needed it, he explained that the doctor had prescribed a 100 mg of Enoxaparin Sodium, but this is wrong as it has to be determined dependent on the weight of the patient. As it turned out I needed 140 mg and as this was not available in a single dose I would now have to inject myself in the stomach twice on a daily basis.

Failure – Due to the wrong dosage of Enoxaparin Sodium I could have had a blood clot and wouldn’t have known, doctors clearly do not understand the requirement for this medication, and there may be others of similar ilk that require specific patient information in order to have the correct dosage.

Failure – No visual management for the dosage of Enoxaparin Sodium, as a simple table fixed to the front of the locked medicine cabinet showing weight and recommended dosage would ensure that the correct dosage was administered to the patient.

Failure – Due to the wrong dosage of Enoxaparin Sodium the hospital is at risk for legal implications, as they could be sued for negligence or in the worst-case scenario facing a charge of corporate manslaughter.

Failure – The blood samples that were taken for each patient were clearly batched and sent to the lab together hence the long wait and all being brought into the room together, it would have been more efficient to send them immediately and the doctor could then have a one to one with the patient as they came back and clearly read the records.

Failure – Different doctors have different opinions on which medication is required, each patient should have a plan which clearly states what is required and stick to it so it becomes standard work.

Failure – Whilst in the hospital I not only observed I also talked to some of the staff, nurses, porters, etc. (me going to Gemba and Auditing) and part of that conversation was around respect for people, and there was a common theme going through these conversations. Although individually doctors, consultants, professors, etc. are hardworking, do a great job, etc. they will not listen or take advice from anyone that is lower in the hierarchy than themselves as they believe that they have the experience and knowledge and know what they are doing, so there is no respect for anyone below them and therefore no teamwork or continuous improvement.

A month later I had to return to hospital for tests/review/assessment. I was called in to see a different doctor and he asked me what medication I was on, in front of him was his computer screen and it was switched on, so he could access my records. So I decided to play a little bit dumb and told him I could remember maybe a couple of them but I have no idea what the dosage would be (I have them all written down and dosage in my notes on my mobile phone), so it would be better for him to access my records. He asked again so I named a couple and then stopped, he then had to go into my records to find out. I was then told that when I first came into the hospital my condition was classed as being severely dangerous but now I am classed as being moderate, this was the first time I had been told of this, and it didn’t sit well with me as I want to know about these things so that I too can make informed decisions in my personal life as well as about my health.

? I then asked if he had the results from the biopsy as at present it is the symptoms that are being treated and that the moderate condition could be due to the medication masking the root cause. He agreed with my assessment and then informed me that the laboratory had examined the biopsy samples but could find nothing untoward, however, the magnification of the microscopes was insufficient so they have had to send the samples to another laboratory that have microscopes with greater magnification, so I will not get the results until the next month.

? I asked for another prescription as I was about to run out of medication. He got a little annoyed and said this should come from my GP and that he would write to them about it. I asked if my GP had been informed of my condition and medication by the hospital as at present I am under hospital care and not my GP, and he told me probably not, so I suggested that it would, therefore, make more sense for me to get the repeat prescription from the hospital especially as I am here and under hospital care, so I was given a prescription. Once again the dosage for Enoxaparin Sodium on the prescription was incorrect and picked up again by the pharmacist.

Failure – Patient records are available at the point of use (computer & information) but failed to open and read them to obtain the correct information.

Failure – Not keeping the patient (customer) informed of their condition.

Failure – Over a month and the root cause has still not been found (not done in a timely manner), therefore, this can lead to delays in treating the root cause.

Failure – Equipment (microscope) is not fit for purpose, leading to further delays and having to engage with a supplier to fulfil the requirements.

Failure – Not engaging with stakeholders (GP) to keep them informed of patient (customer) requirements.

Failure – Patient (customer) focus, medication is available at the hospital, therefore, can be dispensed to the patient immediately

Failure – Common theme of doctors not understanding dosage requirements of Enoxaparin Sodium medication

? A couple of weeks later my GP rang me as the hospital had sent two letters with my prescriptions to the GP to tell them that they would have to take over dispensing my medication. My GP said that there were some discrepancies and as the GP put it “I am confused by these letters as in some cases they contradict each other, so I thought it best to ring you to find out exactly what you are taking.” I went through my list with the GP and the exact dosage. The GP said that they would check with the pharmacy but was sure that they would not be able to supply the Enoxaparin Sodium medication as this is limited to certain pharmacies. The GP rang back straight away and confirmed that they could not supply Enoxaparin Sodium, therefore, I would have to obtain them from the hospital.

Failure – Hospital records have not been updated to reflect what my current medication status is.

Failure – The hospital failed to flow down the correct information to their supplier (My GP) causing extra work and confusion.

Failure – Although I am under the hospital for treatment they have decided to remove their responsibility to a supplier (medication to GP) without consultation of what can or cannot be supplied by the GP, so there is no working with the supplier (GP) for mutual benefits.

Failure – There is a lack of patient (Customer) focus as there is no thought to my needs as it is all about the hospital shifting responsibility.

Failure – Lack of patient (Customer) focus as I now have to ring and organise for the hospital to provide me with my Enoxaparin Sodium medication and I have to make 2 journeys one to my local pharmacist and a 5-mile journey to the hospital.

????????????Another visit to the hospital yesterday to find out what the root cause is of my condition, only to be told that they didn’t know. However, the doctor said from my bloods and urine tests it appears that my kidneys had responded to the steroids that I had been taking and that the leak was closing. In order to test this, I would have to be weaned off the steroid medication over the next 4 months and allow my body to start to reproduce my natural steroids as they had been suppressed by the medication. However, this would have to be closely monitored as I could go back to be being in a severely dangerous condition at any point. My own indicators that I would have to watch out for would be swelling and excessive foam in my urine, and I would have to go to the hospital every couple of weeks for tests.

???????????The doctor then pulled up on his screen a copy of a steroid reduction plan and printed it off for me, it showed a table with an example of a steroid dosage and its reduction day by day, week by week over the 4 month period and was told to follow the example but substitute it for my present dosage. He then went on to say that the table was only given to people who they believed would have no trouble working it out, but with others, they would have to come in and they would work out the week for them.

Failure – Lack of patient (customer) focus, it would be easy for the table to be put into software e.g., Excel Spreadsheet, put in the current dosage and the calculations could be done automatically so that the patient had an exact reduction plan that was tailored to their needs, it would also free up doctors time as they would not have to micromanage the plan. ??

?General observations:

No matter which part of the hospital I was in or observed the staff spent most of their time looking at their mobile phones rather than focusing on the tasks that they supposed to be doing, hence why there were so many errors and delays.

There were a number of patients that had been admitted that either through medication or because of their health conditions were not aware of what was happening to them, therefore, they were totally reliant on the staff, being professional and doing their job correctly to the highest standard. Unfortunately based on my experience and observations in my opinion I do not feel that this is the case, and I believe that mistakes have happened which may have had a detrimental effect on the health of these types of patients, which could have been blamed on their condition.?

?Other Relevant Information

??????????????????????For a little, while I had my suspicions that NHS “Quality Managers” were not really qualified in Quality, this came apparent when I was asked to speak about root cause analysis to a group of over 200 NHS quality managers and some of their European guests, and found that the greater majority had not come across this before, even though they are basic quality techniques, and they are elusive when you try to reach out to them, so I tried another tact. I have a friend that is in a position within the NHS who is not only qualified in Quality but can also follow things up. My friend waited until a “Quality Manager” position was advertised and then sent their CV (Resume) in to apply for the role. Eventually, it was noted that the CV was rejected. My friend followed up to find out why. It turns out that the CVs were vetted by the Head of Nursing and head of Midwifery and neither of these people understood the language of quality that was In the CV, only the medical background therefore, they rejected any CV that they did not understand and chose the candidates that had a strong medical background whom they could work with, rather than people who would challenge their assumptions.

Failure – People are given roles that they have had no training or experience in yet expected to do the work.

Failure – The job role should have what is expected from a Quality point of view rather than a Medical point of view using the relevant quality language that would be understood by qualified candidates.

Failure – People that are vetting the candidates are not qualified to do so, they therefore, choose candidates that fit in with them.

Failure – Quality in the NHS is diluted as there are very few qualified Quality Managers who will challenge assumptions and working practices.???????????