A bit better communication and understanding to loved ones could take us to outstanding care from the extremely good care I experienced.
Patients at the University Hospitals of Morecambe Bay NHS Foundation Trust (UHMBT) have given an impressive nine out of ten overall score for the care and treatment they received in the recent National Cancer Patient Experience Survey. 510 patients completed the survey and UHMBT saw significant increases in its scores compared to the previous survey.
Patients reported that the whole care team worked well together, and positive results were seen in questions which related to communication, privacy, and receiving information about diagnostic tests. Additionally, UHMBT's response rate for the survey was 53%, slightly higher than the national response rate of 52%.
Simon's patient story is an excellent example of the care and treatment received by our patients.
In the summer of 2023, Simon noticed bleeding and underwent a series of medical procedures and treatments. He was diagnosed with a bowel tumour and underwent surgery, followed by a difficult recovery process. Despite challenges, Simon appreciated the care provided by the medical teams.
After a successful operation, it was found that there were still cancer cells in one of his lymph nodes. Simon began a 12-week programme of combination chemotherapy, experiencing unpleasant side effects which required another hospital visit. Despite the challenges, Simon and his family express gratitude for the exemplary care received and suggest improvements in communication with family members during operations.
The Story as told by Simon Rigg
In Summer 2023 I noticed some bleeding when I went to the toilet and wiped. After the third time I saw blood, I contacted my GP. I was seen that same day and he told me that given my age it was probably piles, but to do a Fit Test (a test of my poo) to be on the safe side.
I did this and the results came back positive my GP referred me for a colonoscopy, this was my first experience of dealing with colleagues from the Trust in September 2023.
I won’t say the initial experience was pleasant, in fact, the drinks (Plenvu) are exactly the wrong balance of sweet (artificial), salty and sourness and I was on the loo every 20 minutes from 7pm to 2am.
But the care from the team was excellent and the kindness they showed when they gave me the news I was dreading that I had a bowel tumour was exemplary.
And so began my journey through pretty much every part of the Trust (apart from Womens and Children).
First the referral for a CT and MRI scan. The CT showed something suspicious in my liver, so a further MRI of that area at RLI (Royal Lancaster Infirmary) was arranged for a Sunday evening!
The MRI proved clear, so we were dealing with the bowel tumour. The first stage of treatment was at Preston for radiotherapy and chemotherapy. Five weeks (Monday to Friday) throughout November and December 2023 were quite gruelling, but the care I received from the team at Preston was great and after Christmas I was handed back to the Trust.
I met the colorectal team, and in February this year had further scans, which showed the tumour had shrunk markedly. They therefore booked me in for an operation on 15 March. This would remove the tumour and create a stoma while my internal body healed.
The operation lasted six hours and while I felt fantastic the day afterwards (a Saturday) that night I started to feel very unwell. In fact, my bowels, protesting about being flung about decided to go on strike.
In the end I had a nasal gastric tube inserted (a tube placed down my nose and throat to drain liquid from my stomach). In fact, despite a couple of false starts, the bowels decided not to start working for another ten days during which time I couldn’t eat. I lost two stone and gained a glucose diet from a feeding tube. At one point I had cannulas for a feeding tube, fluids, antibiotics and bloods.
I also had a further CT scan to make sure everything was working OK, this discovered I had a collection around my wound in my bowel.
They therefore planned some interventional radiology to remove this, inserting a needle a centimetre at a time and then scanning to make sure it was on track, until finally like striking oil, the fluid drained off.
So, at this point we’re at the 27 March (12 days on) and I am actually starting to feel good. My stoma is starting to work, I am able to eat, the feeding tube is out and the collection around the wound has drained.
I’m feeling so much better, I start asking questions (until then I’d felt so awful I did exactly as I was told, I wanted to get better): “When can I go home?”, “Can you reduce the fluids you’re giving me to help the stoma output become more solid?” and “Please give me something more to eat”!!
The dietitians came to see me with advice on a low residue diet (very bland indeed! white bread, white rice, white pasta, no vegetables or fruit with skins, no nuts, no seeds)
The asking of questions clearly led to them thinking that I was feeling better as on the morning of 29 March (Good Friday) and two days before my birthday, my consultant came and asked how I would feel about going home. While it took eight hours to organise the take home drugs, the blood test (just to make sure) and to pack my things up, I was home for a spaghetti bolognaise (made with tomato paste and no onions or peppers, but real food I wolfed down!
The only sticking point was that while I was disease free and the operation had been a success, there was one lymph node of the sixteen taken, with a small number of cancer cells in it.
So just as I was getting my full strength back, I started on combination chemotherapy, intravenous for three hours, and two weeks of tablets followed by a week off, this was repeated three further times a 12-week programme in all.
After the first week, I was not feeling well at all. I had been sick three times during the night, woke up and had an enormous, smelly and horrendous discharge from my back passage, the one that shouldn’t work due to the stoma. My temperature had dropped to 24 degrees and the message from the oncology and stoma helplines was clear, get to A and E.
So, we did, hello Medicine here is a Care Group I haven’t interacted with yet!
Again, the care I received was exemplary, we were kept away from the other ill people (as I was immunocompromised) and then had a further bout of sickness and discharge from the rectum, this time in front of an A and E consultant and year five medical student (sorry).
Fluids, antibiotics, and a further CT scan were ordered and a night in AMU (Acute Medical Unit) in my own private room.
I felt better almost immediately they gave me an anti-sickness drug called Ondansetron so after this bout, I was prescribed it to take during each cycle of chemotherapy.
I am now just waiting for the results of a CT scan, just to double check there is nothing further suspicious, and then I can be handed back to the colorectal team to check my internal parts are working and healing and then put me back together and remove the stoma. At that point I can eat peas, sweetcorn and salad again!
It has been the hardest year of my life and yet I have been heartened at every stage. We have fantastic nurses, doctors, and radiologists and other professions, great porters, domestics, and clinical support workers. Not one has given me any concern and most will never know I work for the Trust. The people I am paid to promote are fantastic.
If there was one improvement I would make, it was during my operation, there was limited information given to my wife who understandably was worried sick.
She had to leave me at pre-op at 9.30 am (even though the operation was scheduled for the afternoon) as there wasn’t any room in the small waiting area. However, only two others joined me in there that morning. We were told it would be “maybe a four-hour operation, but it is difficult to know) after five hours she was getting worried, but no-one seemed to know how I was or how it was going? A bit better communication and understanding to loved ones could take us to outstanding care from the extremely good care I experienced.
Again, going home, it would be nice if my wife had been given something to say what to expect. I was pretty able to retain information but not all our patients are that good.
Given what I went through and was/am facing, the experience was extremely positive in that our teams across the Trust (and across the two hospitals I was treated by) were excellent and I am so very grateful to all those we interacted with.