At some point in life it is very likely that most of us will be ill. Very few are lucky enough to be able to claim "I've never been sick a day in my life". I am one of those who have been touched by ill health since the day I was born and this illness left me disabled. My illness and the subsequent impairment has led me to spend my entire life in the hands of the medical profession and I have witnessed all types of reaction from those professionals. From the joy of my surgical team who cured me of my childhood cancer, through the years of being paraded due to being a ground breaking success by aforesaid team in front of lecture theaters filled with medical students, to those who see me as a failure as my cancer treatment left my paralyzed. However in the last decade there has been a noticeable hardening of attitude.
Alongside positive improvements in the conversational skills of GPs and surgeons and an openness to discuss both your illness and possible solutions to it, I have also witnessed a growing attitude that my disability means I must not be a useful member of society. This is a wider attitudinal change, fueled by the media and government, but many doctors I meet have it taken on board. Not everyone acts negatively towards me, but those who do now feel freer with their feelings about my ability to contribute to our society and my quality of life as a disabled person. In this worrying atmosphere of disapproval and negativity comes the announcement from National Institute for Health and Care Excellence (Nice) about possible future plans for the allocation of new treatments.
On Thursday January 9th Iain Johnston wrote an article for The Independent that highlighted a public consultation by NICE on their plans for new medical treatments only to be given to those who were deemed a benefit to society. The NICE website itself admits that it has "been asked to take account of wider societal benefit" of treatments as they "build on its current drug evaluation processes". They claim that the guidelines will not impact on any group of society, especially the elderly as reported. However I worry that NICE may not be able to prevent the attitudes and prejudices of some within the medical profession colouring any future choices over who should be given treatment.
I currently have a medical issue that means I am back in the care of the NHS system, and I have been shocked by the widespread belief that I am not in full time work. It seems that as soon as anyone sees my wheelchair they take it for granted that I must be on benefits. It has taken me some time to ensure my G.P. understands that as a self employed journalist I am not able to just stop work and thus design a treatment regime that allows me to work part time. I have had to go through this with every new specialist I see too. If this is the attitude towards disabled people within the medical profession then if it becomes common practice to allocate treatment on the perceived usefulness of any patient surely these attitudes will impact on the survival chances of any disabled patients who have either a new illness or an ongoing chronic condition?
I am lucky, as I have managed to carve out a very happy and successful life despite being disabled, but this is not the experience of all disabled people. As a group we are already being portrayed by the media and government as drains on society and those of us who need assistance to be able to independent lives are facing the brunt of the cuts. If the fact that we are disabled may be used as a reason not to give us the best medical treatment I hope you will agree that this demonization of disabled people has gone too far.
This move by NICE to meter out medicines due to your usefulness won't only impact on disabled people. The elderly will also have their current contribution considered, forgetting their past entirely. Could this be applied to those out of work too? Or criminals, or anyone who could be said to have caused their illness, such as the over weight or addicts, and eventually anyone who has a lifestyle that does not fit with the norm? Before you say don't over react, history shows us it can happen. These possible protocols from NICE are very similar to those used by another European country in the last century, Germany. The Nazis started by targeting those who did not contribute, the sick, the disabled and old. It was good for the society and for the poor unfortunates too. This is how the concept of Untermensch, or sub humans, started in German society leading to the deaths of thousands of disabled people. So are we going to let fears over economic concerns led us down a similar path?
If we do begin begin doling out medicine dependent on "societal benefit" how long will it be before we also follow counties like Belgium and euthanize sick and disabled children, as not only are they "suffering" but they will never be useful members of society? Of course we will also assist those adults who are old or ill to die, as it is so awful to be like them, saving society a lot of money too. We might do the same for those from families with low IQ's, as per government special advisory Dominic Cummings' view that genetics impact on educational ability and not access to quality education. By that time we are used to society actively intervening in it's members' life spans so we will target those who live alternative lifestyles and then anyone who speaks out against the status quo. Then one day they come for you...
I want to know when they come for me, I spoke out before hand.