“ I am a long standing Kings haematology; patient. I started attending Kings way back in 2000. At that point, before I wen the t to my haematology clinic appointment, I had a blood test in Golden Jubilee. All I had to do was give my name and the print out and labels for my tests would be on the side and waiting. I was then seen ahead of the main bulk of people as I was going round to clinic and the consultant needed the results. If still have to wait an hour for the results but at least it wasn’t a long wait for the test.
This system worked fairly well most of the time. It was tweaked occasionally but in general there were not lots of complaints.
These days I have to take a ticket and sit and wait with everyone else. That means I need to be in the hospital at least 2.5 hours ahead of my clinic time in order for there to be any chance of my test being with the doctor by the time I’m seen. I attend the hospital most weeks in one form and another and have to spend hours and hours sitting around the various waiting rooms. It would really help if Viapath could reinstate the urgent blood queue so that I can get at least an hour of time back.
I am immunocompromised and it’s also not good sitting in such a crowded general waiting room for such long periods.
Anything you can do to improve the situation would be gladly appreciated. My ticket number today is 536. The machine was on 479 when I arrived to at 1.45pm. My appointment in haematology is at 3.50pm. This is typical of how each Tuesday afternoon goes. I also have the added pressure of needing to move the car after 3 hrs of blue badge parking. There are many hidden stressors for those of us that live with long term conditions. Your help in making life a little easier would be appreciated.”
To continue how this day worked itself out you now need to know that where you have the blood tests is in The Golden Jubilee Department. I then had to walk from there to The Haematology Outpatient Department. Once in clinic I waited the prescribed 90mins. I did have a good chat with the dietician while I was waiting. I then saw the lovely Henry who I seem to have seen on the last 3 occasions. He was very thorough as always and was meticulous about checking the dosage and info on the 2 controlled drugs prescriptions as he didn’t want the script bouncing back.
My blood results are pretty ok for me but I’m fairly anaemic and running at 90 instead of 120-150. The GvHD is also very active and I have swollen legs and feet and my muscles and joints ache like mad. Despite this I took my prescription from Henry and headed off on the exceptionally long walk from haematology to pharmacy. The pharmacy is actually located on the edge of the hospital,grounds in a portacabin on Denmark Hill. It is NOT disabled people friendly at all. When I got there, I was out of puff and in pain. I presented the 3 prescriptions. I have had these medications several times over and over many years. I am aware of what can go wrong in pharmacy so I asked the woman who took the scripts to check if all was ok and I would call back another day as they had an hours wait. At this point I just wanted to get home. I was breathless and in pain. I’d been in the hospital the best part of 6 hours at this point. The woman came back to me and said that the pharmacist had said there was a problem with the controlled drug prescriptions and they couldn’t be dispensed. I asked her what the problem was but she wouldn’t tell me. I said could she not ring the doctor as there was unlikely to be anyone in clinic now? She said I had to take the prescription back. I tried to explain that as a disabled person, I did not have the capacity to walk the length of the hospital again. She said there was nothing she could do and handed me back the prescriptions.
I am not prone to tears but I was very close to crying. I was so upset and distracted that I nearly walked into the path of a cyclist. I had to apologise profusely. I was trying to ring the clinic and my CNS but of course as it was now 5.45pm no one was answering the phone. I struggled to walk all the way back to clinic to have the fortune of bumping into Sarah the CNS I had tried to phone. She told me to sit and catch my breath and she would call pharmacy and find out what the problem was. When she came back to me she said that Henry had just forgotten to put today’s date on the prescription. How bloody annoying is that. The people in pharmacy know me. I had photo ID. I regularly have the drugs and they know they are not abused in any way. It was a simple clerical error and not one of them felt able to go the extra mile and phone the doctor and put the date in. Instead the uncaring and jobsworth employees made a disabled patient walk all the way back across the hospital. My resources became further depleted and my legs were aching like mad. It’s just not good practice and certainly doesn’t give a very professional impression. The least they could have done was keep the prescription to the next day when I had another appointment and could have come back and collected. They in fact did nothing helpful at all and did not try to solve the problem.
I got home at gone 7pm that night. What a long day and I still didn’t have my medication. If I include travelling time, I was engaged in 8 hours plus of hospital related business that day. The next two days I was at Guys cancer centre. Each time I was attached to the ECP machine for the best part of 3 hours. If you include waiting and travelling time that bumps up to 4.5hrs a day.
My final hospital visit of the week is once more to Kings. This time I hade to have a chest X-ray at 10am and then go to the chemotherapy day unit for my first infusion of Retuximab. This has to be given very slowly the first time. Whenever you are given antibodies it can make you feel rough. What the medics have learnt to do is slowly increase the rate of the infusion but it still takes at least 6 hours. Then there is the hour of premeds before and the flush afterwards. Then I still need to collect the medication from pharmacy even though I’m possibly gonna feel like death warmed up. I reckon it will be a 9 hour day today. Will see if I’m right.
So that’s around 26 hours of time spent in relation to the hospital this week. These weeks are, sadly, for me a regular occurrence. If you had weeks like this maybe twice a month, what would you do? Would you want a smoother system so that you didn’t spend as much time sitting and waiting as those that come more infrequently and don’t have an urgent need for results?
Sometimes I think hospital officials should shadow patients and see what we have to go through. Maybe then things may change.
I post this in the hope of sharing the reality but also improving the system for cancer patients like me that seem to spend half our lives in waiting rooms. Hear my plea and work with me to spread love and light rather that frustration and upset. Please feel free to share this patient experience far and wide. That way all the allied Healthcare Professionals can have a glimpse at the reality that patients live with as opposed to the nice theories and policies and procedures that don’t work in practice.
There are so many good, loyal, dedicated and professional people in the NHS who do an amazing job. My hat goes off to each and everyone of you. To those who just go through the motions maybe think about a career change so that your apathy doesn’t have a negative impact on my well being and detrimentally affect my health.
Today I have been superbly looked after by senior Staff Nurse Sarah in the Chemo Day Unit at Kings. I was also greeted by a wonderful ward clerk called Maureen who was friendly and helpful and a real asset to her team and profession. These are our unsung hero’s. let’s big them up!
“THANK YOU LOVELY PEOPLE. A FRIEND IS SOMEONE WHO REACHES FOR YOUR HAND BUT TOUCHES YOUR HEART.”
