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"My brother's distressing experience"

About: University Hospital Monklands / Endoscopy University Hospital Monklands / Gastroenterology (Ward 10)

(as a relative),

I am living 200 miles away and this had been related to me by my brother on the phone. His current condition is that he has a fistula leaking faecal matter now about 10 months after a stoma reversal. Previously he has been advised that no immediate action would be taken and time would hopefully heal the fistula by itself. He has been monitored locally for his Crohn's disease and wound treatment and had been doing fine.

At the beginning of April he suffered an episode of high fever and called an ambulance which took him to Monklands. The fever apparently resolved quickly, but then he was visited by a doctor who told him very definitely that the hospital were going to treat the condition thus: put on a low-residue diet, possibly tube-fed, to rest the bowel, and then in a timescale of about 6 weeks, surgery if the fistula wasn't healing. I learned about this 4 days later. So everyone mentally preparing for a long stay in hospital, and welcome the idea that treatment was on its way.

Today he has called me to say that he has been discharged home, as a result of another doctor informing him that no, there would be no such intervention at the moment and as he seems well again, he was to go back home and resume the long wait for the fistula to resolve itself in time - it is too soon supposedly to do an intervention.

No explanation as to how this totally contradictory situation has arisen. It seems that the doctors either disagree about suitable treatment, or never talk to each other about the patients. How can the NHS doctors expect hapless patients to trust them when they are faced with this very distressing debacle? Is it too much to ask that an ill person be told ONE definitive story about what's to be done to him? 

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Responses

Response from Jean MacDonald, Quality Improvement Co-ordinator, NHS Lanarkshire 2 years ago
Jean MacDonald
Quality Improvement Co-ordinator,
NHS Lanarkshire
Submitted on 18/04/2022 at 19:37
Published on Care Opinion at 19:37


picture of Jean MacDonald

Dear ElizW

Thank you for sharing your brothers experience whilst attending University Hospital Monklands via Care Opinion.

I am sorry to read of the concerns raised by you on your brothers behalf regarding the treatment and communication he has encountered.

May I ask you to contact my Patient Affairs colleagues to obtain more information and enable them to investigate your concerns.

PatientAffairs.Monklands@lanarkshire.scot.nhs.uk or telephone: 01698 752300

I wish your brother well for the future.

Best wishes

Jean

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Update posted by ElizW (a relative)

I can't understand how one doctor can arrive at a decision one day, tell a patient one story about what's going to happen (and my brother says he checked this again with the first doctor to make sure that was the case), and then a few days later another doctor gives him entirely different instructions with no explanation, as if this was perfectly unremarkable. I am aware that the first doctor's proposal was actually a possible (textbook) route for my brother's treatment, but had already been discounted previously by his surgeon at Glasgow Royal for the time being.

I see that you have notified quite a range of people of my account of this episode. This is quite reassuring that I have been able to express my view, and feedback is being sent to relevant parties. I now feel that I don't want to take this any further, mainly because my brother himself was reluctant to make any complaint, and I have not told him I have reported this here. His attitude is that it's all in the past and while he was rather angry at the time, there's no point in going over it all. I felt it was important at least to make some record of the events, as it seemed to be a classic example of the patient not being treated with respect in keeping him informed. He (and I) was put in a position of expecting one scenario, and having to alter arrangements to deal with a sudden long hospital stay - including having to cancel appointments with his Crohn's team - and then just as suddenly having to rearrange it all again. Also, he lives alone, and although he has helpful friends and neighbours he had a lot of disruption over a few days to manage. My main point is about the apparent absence of any consideration for how stressful this is for any patient; also no-one seemed to be able to explain what caused the initial fever and shivering which brought him into hospital via A&E. He quite reasonably thought it might be sepsis, as he had been warned about this previously, and advised to get to A&E quickly if he felt so unwell. In a sense, he returned to his previous situation after a week, with no apparent damage done, but this cannot be good for his (or my!) mental health. Difficult times for everyone, but a bit of empathy and consideration might have avoided this unpleasant experience. We are both understandably weary after dealing with this dreadful condition for a long time, and with the uncertainty of what the future holds.

Response from Jean MacDonald, Quality Improvement Co-ordinator, NHS Lanarkshire 2 years ago
Jean MacDonald
Quality Improvement Co-ordinator,
NHS Lanarkshire
Submitted on 20/04/2022 at 09:56
Published on Care Opinion at 09:56


picture of Jean MacDonald

Good morning ElizW

Many thanks for your response via the Care Opinion website.

Again, I am sorry your brother has experienced these issues. It is certainly not the Person Centred care approach we at NHS Lanarkshire aspire to offer our patients.

I understand it must be worrying for you living so far away from your brother; I hope he is now on the road to recovery.

Many thanks again and I wish you and your brother all the best for the future.

Kind regards

Jean

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Update posted by ElizW (a relative)

Thank you for your good wishes, but as I said he is back to living with the uncertainty of when and how this will be resolved, having been given false hope for a few days.

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