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‘Being on the patient’s side has made me appreciate how much patients have to cope with’

It started with a significant change in her health - getting more breathless on exertion. When do you tell yourself that this is something more than being sedentary and middle aged? Looking back, she was probably more sedentary because she was pacing herself.

Then there was an alarming episode of struggling to breathe and hardly being able to move, a cold night outside a restaurant-cum-music club, on holiday in Exeter, even though the walk had been downhill. The diagnosis of Chronic Obstructive Pulmonary Disease with emphysema had already been made in 2005, and the subsequent discovery of atrial fibrillation seemed to explain the symptoms. One or two episodes seemed particularly severe.

On one occasion the previous October, she was so unwell after hurrying for a train that she was nearly not allowed on by the platform staff. She recovered in time to convince them otherwise. She subsequently said she thought I would have been alarmed if I had seen her then. Apparently there were a number of occasions like this that Angie shrugged off - she was really quite gung-ho, although at the same time they frightened her. Sometimes she had to stop, struggling for breath coping with upward slopes. I felt the anxiety of feeling that I couldn’t explain it, or that it didn’t quite stack up, a rather confused helpless feeling. In November she finally managed the heroic effort, after a couple of attempts, to quit the 20-30 cigarettes a day. Her GP at the time had diffused encounters with humour, and kept her on side even when she was not motivated. He gave advice or offered practical help depending on what Angie was ready for.

The diagnosis of atrial fibrillation also coincided with the diagnosis of a large hepatic cyst the size of an orange - discovered incidentally on a cardiac ultrasound to investigate the combination of AF with breathless episodes. This was followed up and found to be benign. Some degree of cardiac enlargement seemed to be evident on the scans.

I was within a few years of retirement. Our practice agreement said sixty years, with annual review thereafter - working as a GP on a working class housing estate in Sheffield. My partners and practice staff were wonderfully supportive of both of us.

Then came a more recent ultrasound scan, arranged after one of the more severe episodes which followed a course of antibiotics for an infectious relapse in November. I delayed going into work on a morning when Angie was distressed with breathlessness and a peculiar profound weakness. She said she felt as if she had to drag her body around and could hardly move.

Our GP whom I knew fairly well came promptly. By this time Angie had definitely improved. She put the options to Angie - admission or planned investigation, with perhaps a bit of spin on the advantages of the latter considering the stress, inconvenience and questionable benefit of admission. Angie agreed to this but just seemed a bit hesitant or reluctant. It occurred to me to ask her if she would feel safer in hospital: she said she would. This led to opening up the discussion about the options again, with the same conclusion - planned investigation. Being a doctor but in the role of patient’s partner is invariably a bit awkward. Our GP handled the conversation well, addressing Angie but not excluding me, and giving her time to think before deciding. Angie told me afterwards that she actually felt quite frightened.

When this ultrasound showed pronounced aortic regurgitation with considerable dilation of the aorta everyone was surprised and concerned, I think we all felt rather wrong-footed. However the cardiologist’s opinion that at this point, Angie’s condition was stable was fairly reassuring - there being no evidence of any need for emergency action. A MRI scan was done before Angie’s cardiothoracic appointment.

Mr. Cooper, the cardiothoracic surgeon was good at communicating what we needed to know. He wanted to plan surgery and have all the personnel in place, but not to delay more than a couple of months. That left me with a subliminal anxious feeling while waiting for a date for surgery to be settled on, a feeling of being in limbo. The MRI scan was really alarming as it showed marked (7.5cm) widening of the aorta. I had a sense of trying to keep a balance between taking this seriously while not alarming Angie. Mr. Cooper was informal and approachable, as our GPs have been. He also gave us time and the opportunity and space to ask our questions. He noted the previous scans done for the hepatic cyst and asked what the follow-up arrangements had been. It was now clear that surgery needed to be done as soon as possible, striking a balance between getting personnel and resources ready for a planned operation with the minimum delay. The appointment was in June and the operation was early July.

When the time came, the risks were explained to Angie. The consultant anaesthetist gave us a stroke risk of 5-10%, which I found alarming. (Interestingly, some time after the operation, Angie said she was very reassured by the low risk. When I recalled the stroke risk she disagreed with the figure, having understood it was around 1%).

Being on the patients’ side of proceedings has been very educational in a number of ways, including managing complex medicine regimes, negotiating appointments, and responding to how professionals and health workers communicate with you. It really has made me appreciate how much patients have to cope with, especially without any inside knowledge. I would say our care has been excellent in both primary and secondary care, and people have communicated with understanding while giving us the information we needed. All the staff are so important in this, doctors, nurses, ancillary staff and others who have no involvement in clinical decisions. In this time of scandal and bad news, it’s really heartening to recall recent excellent humane care and treatment.

We can so easily take for granted the marvels of the age. Such bypass surgery, taking seven hours and involving cooling the body, the incredible technology required, is truly amazing. Those of us of a certain age can reflect on the marvels that have been achieved in our lifetime. A rather naive non-medical friend asked if it would have been possible for me as a fellow doctor to attend the operation. The thought amused and horrified me.

In the cardiac ITU Angie was unconscious for three days, then in a state of semi-conscious irritability for a day. In this state she stubbornly refused to have her swollen arm in a vertical sling, prompting an experienced nurse to comment ‘my, she’s strong!’ Seeing her in these states was indeed strange - I had a feeling that for a few days Angie as I knew her did not really exist, while I still felt a connection to this shell.

I have developed a new respect for the skill of managing complex medical regimes. We experienced concerns about keeping medicines in phase, watching for medicines running out and having enough symptom relief as everyone else. Even with a medical background on tap these were all challenging.

Subsequent recovery has been long, with intermittent periods of pain in the scars and arms, sudden, distressing and disabling, very gradually improving over the last year and a half, with gradual improvement in Angle’s exercise tolerance. Angie has suffered pain that few of us need to, and has born it well. Care in primary care and hospital follow up has again been humane and efficient.

This article was encouraged by my annual GP appraisal discussion. I have now retired from my practice and we have moved to Devon, where Angie comes from and where our daughter, son in law and grandchild live. I continue to do part time sessional out of hours work, for which of course I continue to require annual appraisal. In my appraisal discussion I included what I have learned from this experience of health care – Mark Selman, my appraiser, suggested I try writing about my experiences.

Dr Bill Vennells is a retired Sheffield GP, who now lives in Devon