"Lack of compassion and person centred care"

I'd like to preface my story by saying that I know, from experience, that this event was an outlier. There are a great many compassionate and capable throughout FVRH. I'm simply disappointed that I didn't manage to be allocated to one of them.

It had all started well. We got there and were welcomed by a Student Nurse who had looked after me during a recent in-patient stay. It was lovely to see a friendly, familiar face – it’s always nice when a staff member is able to put a patient at ease.

Things deteriorated when we were called into see the senior doctor. They didn’t stand when we entered the room, or look away from their screen to acknowledge our arrival. Not the best start, but I assumed that the person-centredness would be forthcoming. 

The remainder of the consultation was like an anxiety dream. I had to request that the doctor stopped speaking over both me and my partner – this had no effect - during our twenty minute consultation. There was barely a sentence that left my or my partner’s mouth which wasn’t completed by the doctor. My experience of working in the NHS has taught me that it’s often useful to listen to what a patient says rather than relying on one's own prejudices and filling in the blanks. 

I did not find one word that left the doctor's mouth to be encouraging, positive, or betray any evidence of compassion. When I advised that, despite what the scans say, I’m still living with unmanageable pain, untreatable even with pain killers, fecal incontinence, chronic, overwhelming fatigue, and I am currently losing in the region of 5lbs per week due to ongoing nausea, I was told that I would be tired in a flat, seemingly emotionless tone.

While I appreciate that it’s difficult to complain when you can’t pin your complaint on one particular event during what can only be described as a disastrous consultation, everything from our entering the room to leaving it again twenty or so minutes later was - frankly - awful. I felt that I was treated as a case of Crohn's rather than as a person. At no point did they do or say anything that made me believe that they was interested in my condition or, frankly, anything other than the results of biopsies taken in February.

From my experience of this consultation, it would have been more appropriate for me to be addressed  by my CHI number rather than my name - I felt that I was, at best, no more than a number.  At worst, I felt that I was somehow being blamed for my condition and almost mocked for my hope that things could be different for me on a day-to-day basis. In a conversation lasting in the region of twenty minutes, there was literally not one minute that passed when me or my partner weren't being spoken over, interrupted, feeling patronised, or being advised that there has been a pandemic and that the NHS is very busy, 

I left with no clear treatment plan, no confidence in this particular member of the IBD team, and – frankly – an overwhelming sense of despair that, after speaking with an expert on my condition, I was informed that this might be as good as it gets.

When a doctor tells a person that their job is to treat the disease rather than the person, what hope do we have for our NHS?

During the consultation, I was accused of being irate, not being realistic about my life with my condition, and expecting the consultant to work miracles. I don’t expect miracles,  I simply expect politeness, compassion, empathy, expertise, person-centred care, and a holistic view of the person rather than a few biospies pinched from their large intestine.

It is extremely disappointing that this has occurred, or, rather, that the doctor spoke at my partner and me (not with, not to, but at us - this was our experience whether this was the intention or not).  Disappointing, especially given the excellent care I have received in the past from NHS Forth Valley, in particular in Ward B32. But the rub of it is this: everyone has a bad day from time to time. We all act and behave in ways that are out of character at times. But to take that bad day out on one's patient who, after six weeks as an inpatient already this year, is clearly terrified about the future course of their disease, I find utterly repulsive.

I went to try to get some answers and some hope. Hope has been in short supply recently and my partner and I needed just that. Instead, we saw what seemed to us to a prescriptive, aloof, apparently disinterested, defensive, dismissive, condescending individual.

I know how this works. I write a story and FV reply with apologies and invite me to make further contact. Then FV will hold an investigation where the doctor is asked if they behaved in the way I am alleging and they either don’t recall or deny it. Disappointing, but I’ve seen it all before. For me, however, and to preface any approach by the patient experience team, there is only one acceptable outcome to this situation. I do not want to be reliant or dependent on or even involved with this individual for any future care. The only satisfactory resolution to this sorry incident is my removal from this doctor's case load and my care transferred to someone who will collaborate with me with a view to improving my day-to-day existence. All I want is to feel l little better,  but I was left with nothing but despair and uncertainty at what our future holds.