Day 4 – The Healthcare Experience – Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it with all!

I have written here before how we always make clinic days a special event. I still stand by this and we both look forward to this special day together. So today I want to take a look at how care is delivered in our bit of the planet.

Living in the UK, we are unbelievably fortunate to be cared for by a system that will meet all the medical needs of my daughter with absolutely no cost to our household other than the taxes we already pay. This is a monumental privilege in my mind and something I and my family have never taken for granted. That we are lucky enough to live within striking distance of one of the largest paediatric hospitals outside of London is another massive bonus for Pumplette’s care. The dynamic and outward looking ethos within the teaching hospital attracts talent and bright young minds, eager to learn and share knowledge. And because of the vagaries and the way the NHS is set up and run, I appreciate this is not the same for everyone. Which sucks. Because some families, young people and adults with T1 are appallingly served by their local NHS services. There are now options for people to move care, but this is always dependent upon the patient having the wherewithal and funds to finance such a change.

So, with great privilege comes great responsibility. We are lucky to have free, on the whole excellent healthcare in the UK. Being cared for, our entire lives, by a health service that does not charge us, has made us a complacent nation. As a nation, we are not as proactive as we could be in keeping ourselves well. For we all know, whether consciously or subconsciously, there is a safety net that will pick up our pieces and stick them back together again. The result of this can sometimes be that we expect HCPs to be constantly nannying us and prompting us and reminding us of our personal responsibilities. And this is possibly amplified when you’re caring for or when you have a long term health condition. Confidence needs to be built to empower the “frequent flyer”. Just as I do not expect the garage from which I purchase my car to call me and make an appointment to ensure I have topped up the washer fluid in my vehicle, why should I expect the team that oversees my daughter’s care to constantly contact us to see whether she is having problems with her feet/eyes/etc?  They check these once a year, at her MOT, and just as the garage will check my washer fluid in my car at this time, they do not have an obligation to ring and prompt me to check and fill as and when needed the remainder of the year. I have the skills to do this. Whether or not I choose to reflects my own laziness or level of proactivity at any given time. And so, for the remainder of the year, Pumplette and myself will keep an eye on her feet. Looking at them from time to time and seeing whether there may be any potential issues. This builds good habits up for Pumplette and reminds her of her own responsibility necessary for keeping herself well, happy and healthy. Likewise with her eyes, we make appointments independently of the clinic. And when, last year, Pumplette had issues with her kidneys, it was I who sought and coordinated additional care and check ups for her.

Now I know I am in a privileged position in all of this. I have the confidence and knowledge to know that this is possible. But I did have to learn how to do this. Pumplette’s team have always been superb at championing our expertise in her management and this is what we love about them. We are encouraged to bring our agenda to the team, and seek out additional knowledge. This is when healthcare is at its strongest. Crowd sourcing knowledge & sharing with all the attendees at clinic leads to that dynamic, vibrant and forward looking clinic that then delivers the very highest quality of care. I just don’t want Pumplette to forget her responsibilities in all of this. She has to be the driving force of that care. Her HCPs don’t know what they don’t know about how she is feeling. In order for her to get the best out of the people charged with supporting her on this road, she must drive carefully and flag any issues. And in response, I would expect her health care team to act as her navigator & provide or signpost her to the care that she seeks.

In summary, if you’re a frequent flyer, have confidence in your knowledge & ability to ask for the support & services you need. And if you’re an hcp caring for a frequent flyer, instil that confidence within those who look to you for guidance.  I promise the results will be most rewarding for all parties.