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Written by a patient
13th October 2017


Most importantly it felt that I led everything rather than decisions being made for me. E.G. they suggested what they thought would be a 'better' and stronger mix of pain meds for the varying degrees of constant pain I get from both my various joints due to atypical rheumatoid arthritis and my heart and lungs due to end stage emphysema and which I gave a good try. However, when they proved less effective and in some ways worse due to side effects they were quite happy to let me revert back to my previous mix of pain meds, even if it meant that I would increasingly need to take more of them. Unlike some ordinary GPs I have come across, who don't really understand or maybe have difficulty accepting that I am past anything but palliative care but still don't like prescribing me opiates, the staff at the hospice know what is what and what really matters to me now. I.E. using meds to control the pain at a level where it is manageable but still leaves me mentally active. This was the attitude I found with everybody I had contact with at the hospice, from the reception staff to the volunteers to the medical staff, or at least they managed to give the sincere impression, that what mattered to them, was what mattered the most to me. Of course, they were always willing to suggest things I might help, e.g. some of the complimentary treatments, and while generally I am not a big fan of a lot of so called complimentary medicine, finding a lot of it quackery, things like massage and relaxation was of use. Then again I have always practised a form of what can loosely be described as meditation. Again, they took their cue from the patient and only suggested things they thought might help without making one feel that one was obliged to listen. When you get to the stage where nothing is left but palliative care, having a degree of control, however, illusory it might actually be, does wonders for ones mental well being and all the people I had contact at the hospice managed to make you feel that you had a fair degree of control. It was also really relaxing being able to talk openly both with the staff, paid and volunteers, and many of the other patients about ones likely outcome without anyone feeling awkward about ultimately talking about death. Something I find many medical staff at the BRI and, with the exception of my 'main' GP, staff at my health centre often have difficulty dealing with, especially as I am quite open about it. My only 'criticism', which is only me being selfish, is that I wished my course had been longer and if I survive long enough hope to have another session in the not too distant future.

Recommend
Dignity/Respect
Involvement
Information
Caring
Trust
Support Staff
Advice line
Rating not given.