Chronic disease – you are your own doctor (without the training)

It seems to me that as an organisation the NHS misunderstands the nature of Parkinson’s. The NHS is set up for short term intervention following an emergency and it does this well. Within emergency care the Doctor, who has years of training and experience, is dominant and the patient is passive.

A problem arises when this model of care is applied to chronic, incurable, progressive diseases such as Parkinson’s. Within chronic care the patient, who is likely a medical novice, becomes responsible for day to day treatment and the Doctor is relatively passive; the gap between a patient’s medical training and the burden of chronic care is troubling. Shockingly, I was offered no psychological support when I was diagnosed and I was left to the wilderness of the internet (whose content doesn’t have a conscience) to understand what was happening to me. Charities such as Parkinson’s UK do step into the breach but I wonder whether some sort of meeting with Doctors and other health professionals can be arranged a week after diagnosis where patients and their families are taught something of the disease, can ask questions and are set up with some of the tools needed to shoulder the burden of chronic care. Reading a leaflet or a web site, although useful, is a one way conversation.

I am very grateful for the input of my Physio and Occupational therapists (thank you Laura and Mairi!) but it seems I’ve used up my short term intervention tokens because this is gradually stopping. But, Parkinson’s is a shifting disease (new challenges will arise) so the short term intervention model is inappropriate. Also, given the chronic nature of Parkinson’s it will benefit both patient and health professional if a patient could see the same person each time; building trust is crucial in all medical interactions but especially dealing with chronic disease.