The Fawlty-esque goings on at our local Endoscopy Unit
Viv’s medical conditions have meant that she’s become something of a regular at our local Endoscopy Unit - a modern building, round the back of the hospital proper, seemingly located where it will be difficult for patients to find it, and for them to be picked up afterwards when they’re feeling groggy from the effects of sedation. I’ve been seen there once, a few years ago, for a much simpler condition than Viv's, and I found the experience somewhat less than inspiring - I was, initially, to be ‘done’ by a junior, under the supervision of a consultant, but the junior seemingly mistook my windpipe for my food pipe, causing me to become quite uncomfortable, at which point the experienced hand took over.
Viv’s experiences at the Endoscopy Unit have most definitely not been what one might expect from an ‘envy of the world’ health service. Her first visit was a waste of time, for they needed equipment that was not available to them; her most recent encounter was an unmitigated disaster, for she wasn’t even told when she was meant to be there. We’ve recently relayed our experiences to the CQC: for the record, and your interest and entertainment, I have reproduced our two submissions below.
July 1st, 2024, from Viv:
I have been referred to the Endoscopy unit at my local hospital a number of times since I started to suffer dysphagia in March 2023. The following are among my experiences.
My first endoscopy at this unit, in April 2023, was unsuccessful because my oesophagus was obstructed and the technician did not have the correct equipment to dilate it. When he realised this during the operation he became quite animated and was clearly frustrated at not being able to do the job he had expected to.
On my second visit to the unit, in May 2023, the technician did manage to dilate my oesophagus. Luckily, I had a CT scan two days later (the technician had wanted it done sooner, but there was a communication issue with the CT unit); the consultant checked my scan and found evidence of perforation having occurred during the operation. He did contact me in line with his duty of candour, arranged for me to be admitted and treated for this issue. What was not clear was whether the delay to the CT scan might have been a factor contributing to the perforation; we tried to arrange an appointment with him to discuss this, one was made for April 12th 2024, but subsequently cancelled; I am not sure whether this is due to his other commitments, or a reluctance to discuss what happened. I shall have to write to him requesting some information as to what might have been contributing factors, so that, if there is anything wrong with my records at my GP practice, I can request these to be corrected.
I was subsequently diagnosed with Squamous Cell Carcinoma of the oesophagus (PDL1 > 50%) and placed on a course of chemotherapy and immunotherapy; normally, at this hospital, patients with this condition are given radiotherapy, but this is contraindicated if the oesophagus is perforated. It became apparent to me that the endoscopy unit was not familiar with the challenges that patients undergoing immunotherapy might experience; I developed tumour ingrowth (possible pseudo progression of the cancer) and had to be seen in the endoscopy unit a number of times more, at each of which they removed obstructive tissue with a laser. No biopsy was taken so it was not possible to confirm if the tissue removed was a result of immunotherapy; further, after the operation I was unable to swallow at all for up to 48 hours, and lost around seven percent of body weight during this period due to dehydration, to regain it over the following few days. Only after I had experienced this twice were IV fluids provided prior to discharge (I have a PICC line), even then only after I had asked for it.
Because of my conditions it is possible that I might suffer a reaction to some form of treatment, or find that the treatment does not work as expected; after an endoscopy on 12 February I was told that no further treatment would be likely to be needed for around six months, yet I needed to go back on 29 April. When I do need to go in I am suffering from severe dysphagia; if there is a delay my condition might deteriorate due to lack of nutrition, fluids, or even my being unable to take essential medication. Unfortunately it has proven to be very difficult to be seen quickly in the endoscopy unit; if I do suffer a problem I have to contact a nurse, who arranges an appointment, but only with about a two week lead time. The first time this happened I had to get through two weeks barely able to swallow fluids, it was very distressing.
The literature I have been given by the endoscopy unit after laser treatment mentions that I ‘may … find swallowing to be worse for 1 or 2 days after treatment’. As I have just mentioned, when I go in I am struggling to swallow fluids; the leaflet, and the advice from the nurse at discharge (who just seems to read out what is on the leaflet) does not quite seem to take into account that ‘worse’ than being barely able to swallow fluids is not being able to swallow fluids at all. I am left with the view that the unit is delivering a form of treatment without fully understanding how it affects patients.
Each time I have had an endoscopy my partner and I have first been invited in to discuss the procedure with a nurse, going through the same questions regarding medication etc. every time. (It has crossed my mind that they must surely recognise me, and know that they have my details on file, but we still go through what feels like a charade each time; do they not store my details on a computer?) Following this, my partner is required to wait in the waiting area, and I am taken to an area to change and get ready for the procedure; I am then left, alone, for perhaps 45 minutes with no one checking on me, and with no nurse call facility. I do have epilepsy (mentioned to the nurse at the start), and take my medication normally on the day of the procedure; I have never had a problem while in the unit but there is a risk that I might.
Overall, my experience of the Lister Hospital Endoscopy unit has been of a department that works the way the staff are used to working, perhaps with some communication problems, and that novel problems, or unexpected challenges, seem to be difficult for it to cope with. There seems to be little use of IT, and interaction with other departments seems to be clunky at best. There is not a full appreciation of how patients may be affected by treatment given at the unit, and the advice, and options for support, given to patients, are insufficient for the patient to feel confident about receiving similar treatment in the unit in the future should they have to.
***
This is hardly encouraging reading for anyone needing to go to the unit, I know. We thought things couldn’t get worse; in one way, they improved (Viv’s condition), but another (at the unit) they didn’t. I followed up with another report to the CQC, including email exchanges I had had with PALS.
July 5th, 2024, from me::
My partner has been admitted to the endoscopy unit at our local a number of times in the last year or so; she is also undergoing immunotherapy treatment at the Cancer Centre for a squamous cell carcinoma of the oesophagus.
From time to time swallowing becomes difficult for her, and it is at these times that she has often been seen at the Endoscopy Unit and given laser treatment to clear obstructive tissue from her food pipe.
Two days ago (3 July) she was suffering in this way and I had been in communication with the support nurse who was arranging her admission to the endoscopy unit yesterday (4 July). The following email, that I sent to PALS, tells the story further:
Hi
I am the carer of a patient who is currently receiving treatment in your Cancer Centre.
She occasionally gets problems with dysphagia and needs to be seen at the Endoscopy Unit.
When she has been seen there in the past she has been told that, should she suffer further problems, she should contact the Nurse Practitioner who liaises with the Endoscopy Unit.
We have, in the past, had at least one instance of the nurse saying that Vivienne needed to be seen immediately, but the Endoscopy Unit were unable to accommodate such a request.
This morning I told her that Vivienne was once again struggling to swallow anything, might be starting to become dehydrated and was developing a cough, possibly due to matter being inhaled into her lungs. She said that Vivienne needed to be seen a.s.a.p. and had asked the Endoscopy Unit to move an appointment Vivienne has on Monday (8/7) to tomorrow (Thursday, 4/7).
It's now 4.25 on the Wednesday (3/7) and I haven't heard whether Vivienne has an endoscopy tomorrow or not. Three quarters of an hour ago I tried to phone the unit; first, I selected option 1 - the number for appointments. I received an automated message saying 'You are number 1 in the queue, we expect to answer your call in approximately 12 minutes'. (This seems to suggest it takes the endoscopy team TWELVE MINUTES to deal with each inbound call. That, to me, sounds like they aren't working very efficiently?). After almost seventeen minutes being number one in the queue I took the hint, realising that the team handling that number were not interested in my (and presumably anyone else's) call.
I then tried option 2, to get through to the nurses (as suggested on the form I had been given if I had any queries about medication). They also were not interested in resolving any patient concerns, for their line had an automated reply saying 'we are not answering the telephone at the moment, please call back later'.
I then tried the 'any other query' option, option 3. That said I was caller number two in the queue, and that they expected to answer my call in approximately twelve minutes. (A coincidence?)
I have concluded that the staff at the unit are completely uninterested in my concerns today, that Vivienne's appointment has not been changed, and that I - an untrained carer - will have to continue to nurse her, and keep her alive, longer than a specialist nurse at your hospital has deemed to be safe.
When Vivienne does finally have her appointment and, at time of discharge, the nurse reads out the sheet saying that 'if you have any problems contact the liasson nurse' I shall tell her (or him) that that is not acceptable to me, for the Endoscopy Unit does not seem to pay any attention to what she says.
And, of course, should Vivienne come to any harm as a result of this delay in her being seen for treatment that a specialist has said is required right away I shall raise a formal complaint.
Could you please relay the above to the manager responsible for the admin team in the endoscopy unit, and ask them how they would feel if they were unfortunate enough to be in my situation. (Almost everyone finds themselves being a carer at some point in their life.)
…
At 11.06 yesterday (4 July) I was sent the following reply from the PALS office, which I did not read until that evening:
Good morning
Thank you for your email. I am very sorry to hear that your experience has been less than positive. I can see that Vivienne has an Endoscopy appointmnet on 4th July at 15.45. I hope this has now been communicated to you. I will pass your email to the Service Coordinator so she is aware of your experience and can use this as a learning tool for staff going forward.
Kind regards
…
I had good and bad news for the PALS team, which I sent to them around 7pm, as follows:
Hi
Unfortunately, no one told us that Vivienne had an appointment at 3.45 this afternoon.
However, fortune intervened - perhaps the immunotherapy is working - and her condition has improved, I'm pleased to say.
I will contact the nursing team to find out what Viv should do next.
Thank you very much for your help. I'm afraid there does appear to be a problem with communications in the endoscopy unit.
Regards
Phil
…
I fear that a surgeon’s, and other specialists' time was wasted yesterday afternoon because no-one told the patient (or me, her carer) that she was expected in for an operation yesterday afternoon. As I said to the PALS team, there does appear to be a problem with communications in the endoscopy unit.
I also contacted the secretary of the surgeon who was due to ‘do’ Viv, and asked her to pass on our apologies to him; we had visions of him standing, surrounded by subordinates, wondering where the patient was and then erupting when he was told that the patient had not been told she had an appointment at that time.
Fortunately, Viv has just about managed to keep on top of her dysphagia since these events; we have kept the hospital team informed, and relayed to them some questions and concerns. Strangely, or not perhaps, they have yet to reply.
***
Footnote: one of the shops in a local town proudly displays a sign offering NHS workers a 10% discount. Are the administrators responsible for the chaos I’ve related really deserving of what is, in effect, a subsidy from the rest of us? I’ve taken to avoiding that shop.
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