This is a reflective post on my experiences during the people and disease course. From year one, we are assigned a patient whom we visit regularly then we find our second patient ourselves and follow up their progress also, reflecting on both their experiences holistically (which means we take into account social, medical, drug and family history as well as life impact on illness and vice versa. It's very good at teaching the importance of providing support to patients from all aspects of life that can be affected by illness).
My first year of the People and Disease course has been an illuminating and challenging one. Before studying it I understood the definition of patient autonomy and the ethos behind it but I did not understand how deeply valued it was nor how essential it was to ensuring the best care is tailored to patients as well as possible. I also had less understanding of the roles of professionals in primary and secondary care, was less aware of the usefulness of patient feedback and was extremely nervous about the idea of house visits.
The first greatest challenge was contacting my first patient, C. C presented with blackouts and was diagnosed with schizophrenia. I was also told that she was in her sixties and lived alone. The first thing I did, out of nervousness I’m ashamed to admit, was make assumptions about her character, socioeconomic situation and educational background - almost all of which were incorrect.
Where I expected someone reclusive, incoherent, difficult to speak to and disjointed in thought I found an articulate, open, intelligent woman. My knowledge about mental illness stemmed largely from societal beliefs and an A Level in Psychology, both of which served me relatively poorly in this instance. C’s strength of character, autonomy, management of her condition and utter refusal to pity herself or accept pity from others flew in the face of all the preconceptions I had.
I was touched by her matter-of-factness, her robust progressive attitude was obvious considering the many jobs and qualifications she had attempted despite repeat break downs. She made me aware of how badly her life had been affected by her illness but it was clear she valued her independence and resilience. She also seemed extremely self aware; she recognised that she could be ‘delusional’ and it appeared she understood her condition and her behaviour when not well-managed.
During my first visit, she was kind and welcoming, quite at ease with my questions. She told me she was happy because she finally had her own place and I found a comfortable rapport developing despite my nervousness. As our conversation progressed I felt increasingly confident with her dry wit and frankness and wondered what her opinion of the social stigma regarding mental illness was. She told me she does not associate herself with ‘those people who use the label to excuse laziness’ or ‘who wore the label as a badge of exclusivity’. I was a little shocked to hear this and have learned that no matter how ingrained beliefs are about groups of patients, I should reserve judgement of individuals.
Moving on to social and medical history, I learned that C had been sexually abused since childhood into early twenties, had been homeless several times in her life and had had very negative experiences in primary and secondary care. I was happy with the way I handled the conversation, apologising for bringing up such difficult topics and telling her she could decline to answer or stop at any time she felt uncomfortable.
When I asked about her opinion of the NHS and how she feels it has benefitted her, she told me the only thing the NHS has done for her is provide her with home medication and weekly Depixol injections at the clinic. She related poor, unprofessional treatment from staff during her time as a mental health in-patient on a mixed-gender ward with sex offenders and with her previous doctor. She told me her last GP talked over her and gave her little to no autonomy, that he tried to force her to re-unite with her abusive step family, that she was not told her diagnosis but found it out from reading her file, that it was not explained to her how her illness worked back then. She was obviously angry about it. I felt awkward with the information and found myself apologising for her experience and wanting her to know how much current practise valued patient autonomy and dignity.
She was, however, happy with her current GP, which made me believe her claims about her previous doctor may have had some weight. During seminar 3, I related some of these negative experiences to the group believing they were mostly true. I had not considered that her illness may have distorted her perceptions back then and felt a little uncomfortable when I realised this. It has made me apprehensive about how to critically treat subjective accounts of experiences by patients, since viewpoints can be distorted by expectations, previous experiences and emotional/mental state.
My second patient, K, suffers from epilepsy. I found her more easily and faster than I expected through a consultant in an epilepsy unit. The nervousness preceding the first call was there but I felt far more in control than I did when I contacted my first patient for the first time; I was more confident in explaining our respective roles for the module and making sure the patient had all the information she needed before agreeing to meet with me.
What I was not prepared for was finding out that her mother had recently passed away, less so that she was willing to make time for me if it was urgent. In the moment, I was afraid I would say something entirely inappropriate but luckily I managed to apologise and arrange a later, more convenient meeting for her and her family. Since then, I have had to rearrange the meeting due to constraints on the family’s time.
I came into the course with many preconceptions and judgements about illnesses, patients and care and I’m glad to say almost all have been challenged and improved upon