Angela Camber, a patient representative from the British Heart Foundation, shares her personal experience of receiving care and discusses the importance of integrating physical and mental health care services.
This presentation was recorded at our conference Joining up physical and mental health care on 8 March 2016.
To me, it is obvious. We shouldn’t have to be thinking about embedding integration of physical and mental healthcare, it should be an integral part of what patients can and should expect. Surely the starting point is the patient, the whole person, whose place is right at the centre of our healthcare system. I look forward to the day when one can go to the doctor and be confident that one will be met with an empathic, listening, lateral approach which genuinely provides physical and mental healthcare as part of an integrated approach to health.
I am reminded of my inpatient experience of post-operative care following my first open heart operation. Thank God I can still laugh about it. I wasn’t feeling great to put it mildly, I felt low, tearful and very sorry for myself, I thought I was depressed. The cardiologist came to see me and made the great mistake of asking me how I felt. I remember promptly I burst into tears, I didn’t even get a chance to tell him how awful I was feeling. He simply told me that I had been in touch with my mortality and that I needed a blood transfusion. So much for integrated care. If I had only been told a little more about common after effects of heart surgery, including a long period under general anaesthetic, it might have helped, instead of which I convinced myself that I was actually going mad.
I knew what to expect physically, but my genuine fear of what lay ahead of me was never, ever acknowledged. What must it be like for people who find it much harder to articulate their feelings for all sorts of reasons? I am actually very keen on peer support, which is how and why I first became involved with the British Heart Foundation. I liked the idea of being in a position to support patients going through some of the things that I have actually been through. If there is anything I can do to help people cope with that awful fear of the unknown, before their surgery or their intervention, I am actually quite pleased, because if you haven’t been there, it is really very difficult to communicate this. And most importantly I can tell them I am still here to tell the tale.
So, what would I like to see from a service user perspective? I want to be confident that those treating me are able to look at me as a whole, not as someone who may have a medical problem or an emotional or psychological issue of which I may well not even be aware. My symptoms could even be unexplained, then what? What is the point of not looking at me holistically? I am not a heart patient, I am me. When I first sit down in front of a doctor, I want that initial question ‘How are you?’ to literally mean what is being asked, with the emphasis on you, meaning all of you.
I have only once had what I would call a near perfect experience. I needed to be admitted to hospital quickly. The then cardiologist actually took the trouble to acknowledge my fear, anxiety and feelings of stress, and asked me how I felt about having to be readmitted yet again. The fact that my heart and my state of mind were being addressed simultaneously and I was being treated as a person and not as a heart patient meant a great deal to me. Is this about inter-professional training, skills transfer, a non judgemental attitude, an understanding of the inter dependence between physical and mental health or of a capacity to think laterally beyond people’s own specialism? I think it is all of the above. But doctors’ ability to actively listen and to communicate with their patients with empathy, understanding and respect is fundamental. This should not be a utopia, it should be a reality.
Finally, I just want to mention that there should be a board level champion for physical health in mental health trusts and vice versa. This is the sort of common sense I like, simple, doable, enabling. That could achieve so much in moving forward this badly needed integrated approach to these at times disparate areas of medicine. I say go for it. However in terms of organisational structure, what I would really like to see is patient input. I believe that a patient champion presence on these trust boards would be a much needed first organisational step towards really useful interaction between service users and professionals at this level. It could be the start of a co-ordinated patient centred move towards turning integration of physical and mental healthcare into a national reality.
However, should the patient need a complex heart procedure, I would strongly recommend that they do not see me. I think they should get to see someone with a quite different skill set - someone who can put knife to skin, cut and stitch, understand the risks and benefits of different techniques, and have the skills and confidence to put them in place.
My point is that it is not realistic to expect 'whole person' care, and 'surgical skills' in the same person.
But - I agree that 'care' needs to include both.
How can that be done?
I think do not expect surgeons to be what they are not, but help them by supporting them with others- patients peers, or carers, or such.
Set up systems of care.
Do not keep expecting doctors to be everything to everyone. We will all be disappointed.
Integrative studies of the foundations within cosmology, epistemology and ontology have been my life long study. http://bblu.org is our current work. Ostensibly it is time to tack worldviews to the wall of history and begin developing integrative universe views so we all begin looking at each other more holistically than we ever imagined. -Bruce