Reaching for the handle I realised that I was fully prepared. For the last few weeks, I spent every moment preparing for this appointment. Countless hours researching on the Internet, chasing the smallest details, to make sure I fully understand all the issues. During this hunt I had planned the perfect argument, and it could be easily, and logically presented.
This journey had started a few weeks ago, and I approached it like a military campaign. My body would be a temple, and I fed myself with healthy nutritious meals prepared carefully. Every day I exercised to achieve fitness, suppleness, and stamina. I prepared my mind and body. Report, testimonials and research papers were printed, highlighted, and would be at my fingertips, as I presented my case.
Firmly I opened the door, and I strode confidently to the chair beside the desk. Shaking the hand presented he greeted me “What can I help you with today?”
“Doctor, I have…”
This is not the reality for me, or any person with a chronic illness. We are sick. Our bodies are no longer temples, but derelict buildings hinting at former splendour. Resisting every attempted remodelling. My concentration lasts for short periods of time, and quickly spirals into a whirling vortex of vertigo. The battered briefcase I carry has torn fragments of misplaced articles, many unconnected with my problems.
I am wholly unprepared for this meeting, mentally and physically.
Our medical and support systems are adversarial. This has developed over many centuries where the provider of services for the ill is in a powerful position. With the scratching of their pen, they have control of our lives. Not only for medicine, but for every service. The issue with power, real or not, is the dominant party has a tendency to lose empathy with the person receiving what they have in their gift.
As a person that has an incurable progressive chronic illness, combined with continuous chronic pain, I am in a very weak position when confronted with a fit and talented opponent. Plus, I need what they have. Without the service or goods they control they can shorten my life, make it more painful, or I lose the meagre quality of life I have. There is no balance.
Every contact with support systems, government agencies, or medics assumes the patient is fighting fit. The social welfare system is usually nebulous and requires a concerted effort to access the supports. Is there one point of contact? No. In Ireland I have to contact the social welfare office for income support, hospitals to access physiotherapy or occupational therapy, and doctors to access medicines. To access help with transport, I need to contact the tax authorities, and if I need help with accommodation, I must contact the local authority.
A small example of this is that I can get a refund (or exemption) of VAT on aids and appliances that are necessary to help me with my daily activities. (See here). The only reason I know this is that I was looking for a new tip for my walking stick and the website (in the UK) stated that if I had a disability, I would not have to pay VAT. Quickly turning to Google I found out that the same applied here in Ireland. This would have saved me nearly 19% on the price I paid for my walking stick. Significant, and even more so when you are on a limited income.
It seems cruel in a modern economy that the people which need help most have to be its fittest and most able.
There are two possible solutions to this inequity. The first is that anyone diagnosed with a chronic illness, or disability, should get a permanent advocate. Someone that knows the system, and all its idiosyncrasies. Fit and knowledgeable in navigating through the turbulent waters. I would love to have someone like that appointed so I don’t have to find out important information by luck as I noted above.
The second solution would have to be systemic where the balance of power is equated. Instead of power motivating the provider (usually quantified by control of something financial) but by the common goal of making the quality of life of the patient better. The education of all parties would have to be different, and they should link the compensation to ‘Quality of Life’, not the management of a financial budget.
What should happen to solve this?
Patients, people with chronic illnesses or disabilities, should fight as a unit, and not as fragmented different diseases or illnesses. We are being conquered because we do not fight together.
As we live in the real world, and not some Utopia, I think the first option is where our efforts should concentrate. By starting small, in a single town or city, this system of advocacy will be tested, refined and then expanded.
When I attended the European Patients Innovation Summit in November, the Electronic Patient Record (EPR) developed by the Irish Epilepsy Association impressed me. The meeting decided they should expand it as a universal EPR for all of Ireland. (See my review of the summit here).
It is possible for great things to develop. This post is my step, contribution, into what needs to happen to create a patient-centred system that puts the ‘Quality of Life’ back into the hands of the patient. Exactly where it should be.
Let me know what you think in the comments below. Thank you.