Is It Time To Try Something Different?
In this piece I wanted to write about kidney impairment, why? I hear you ask. So, first like me make it clear I am coming from a patients perspective, I am not a medical professional. I wanted to write about impairment many years ago. As I became more experienced as a patient, I realised there was a common theme over my 25 year journey as a transplant patient.
That common theme was along the lines of, you look ok I never would have thought you had a condition. Now, on the face of it, it’s a lovely compliment and a transplant is of course a gift of life. But my question really is, do the public, workplaces and government agencies really understand what is is like to be a kidney patient? In this case I am coming from a transplant patients perspective. Our donors give us a wonderful gift, they are our hero’s. But do we also need to improve the messaging to the wider public?
A Different Perspective
What I mean by trying something different, I mean post transplant and messaging that a transplant it is a treatment, not a cure. Receiving a transplant is quite simply in my view, an amazing gift of life. I have been able to do so much and visit places I couldn’t do on Dialysis. But throughout my working life and with family & friends, there is a perception you are all cured now.
In many ways your life has improved having received this wonderful gift from your donor. But do occupational health advisors, benefits decision makers and wider society, understand there is more to it? Everyone’s function is different, but in many cases there is still an impairment. We obviously know this as eGFR alongside our other blood results.
Ever since the Equality Act came in I have been thinking about impairment, simply because it made sense. There is a new normal for a patient post transplant. But many will see just an image, the outside and we may look perfectly fine. But as the years go by, you realise there are many niggles that come post transplant. They will vary and be relative to the individual patient, as we are all different. But should we be using impairment more?
Getting The Message Across
So, lets go back to the Equality Act for a second and the terminology contained within it.
The definition is set out in section 6 of the Equality Act 2010. It says you’re disabled if:
- you have a physical or mental impairment
- that impairment has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities
I am well aware that many patients don’t see themselves as having a disability. But is that realistic? it’s a question I have asked myself many times over the years. I am asking myself what damage has been done to my mental health? has the impairment caused some of this? Difficult to tell to be honest, as I have faced many social issues.
I have grown up with a work ethic and it’s been very much get on with it. On reflection though it’s not always been that simple, there have been many times I have not been able to keep up. Been stressed and frustrated because I remember the person I used to be before the transplant.
The 5 Stages
I am sure many patients know the 5 stages here in the photo. But that really is my point, we know because we are in that bubble if you like. Does wider society know about the different functions? Therefore, should impairment be used far more in the kidney community, to help get that message across? So, wider society understands a little more about our conditions. For example I have had a successful transplant for 25 years, but the function compared to a work colleague would be 40-50%. You were expected to carry out tasks the same as everyone else. Thankfully there have been many changes in the workplace, since my transplant. But hopefully you see the point I am trying to make here.
You say eGFR to them, they will think you have been watching Breaking Bad of something. You say impairment it is such a good word in my view, that is will help others understand. Then hopefully when kidney patients have to speak to occupational health, or a benefit advisor. They don’t have to jump through hoops trying to explain what it’s like being a patient. I remember an advisor on one of these benefit assessments years ago. She wrote in the report I made eye contact with her, implying I had the confidence to do that and no issue with mental health. At the time that could not be further from the truth.
Our condition and anything else that is wrong with us, arthritis, mental health etc, is all invisible. By simplifying the message, I genuinely think so many more will understand what we go through. Then patients won’t feel left behind, abandoned because there is little understanding.
Thank you for reading and some food for thought on impairment and whether we should start to use the term in our messaging. Have a great day.