An appointment with the NHS.
You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.”
― Atul Gawande,
I’m a health activist and I work as a coach and leadership consultant with a special focus on health and social care. I've been a nurse and health sector charity director and I have done all of this because I'm passionate about having the best health and care possible.
This year I've come through treatment for my third diagnosis with breast cancer and my care for that has been outstanding. Excellent clinical care combined with a compassionate team at all levels.
But that's not been enough as since my surgery I've been disabled by breathless which isn't related to the cancer or evidently to the surgery. And because of this I'm undiagnosed in a system that doesn't deal with this. Without a diagnosis you are lost in a system that doesn't connect and certainly doesn't see you as a whole person. I've been scanned and tested but still no answers. And all I have are verbal results so I have no ownership of my own information. This is the only part of my life where this happens. Finally a referral to a respiratory clinic was made in May. Well it was mentioned in a letter to my GP and copied to the clinic who didn't trigger a referral as I discovered several weeks later when I called concerned I'd heard nothing.
Finally an appointment came in when I called, so I planned a holiday I had had to cancel earlier in the year as I simply wasn't well enough. You see I know now to not dare to change an appointment. I'm self employed, an appointment on a day I'm working is loss of income and loss of trust in my reliability. But that counts for nothing in the appointments system. I knew to my cost this already when I changed a CT appointment and got a delay of another 6 weeks. I'm awaiting another CT as there was an issue that needs monitored and have tried to avert an issue of it arriving when I'm committed to something else but that couldn't be done in advance I was told. So instead I have to wait and risk a delay all over again because I'm not expected to have a life beyond appointments.
So this week as I get excited about my holiday an appointment change arrives for the respiratory clinic and its when I'm holiday. I call up to explain and say I want the one I had but that was cancelled as the consultant is off. With 10 days notice apparently. Now call me psychic but I'm suspecting its holidays. When I ran clinics as a nurse I had to book my holidays well in advance to avoid this very scenario. Is that so difficult here? So the first next appointment was the end of August on a day I have a full team event. I can't do it I said and was told in that case I had to go back in the system. My NO contained all my frustration and anger at this unnecessary treatment. Finally I got one the next day at the very end of August and an offer of a complaint form. I was also told my unhappiness would be noted so I await my appointment with a consultant already on the defensive. That bodes well doesn't it?
So I'm breathless since January and have an appointment for late August to find out the cause. Frankly this isn't good enough. And part of the cause of this is an appointment system that is inflexible and completely not person-centred. And the appointment staff who on have occasion have been at best inflexible and at worst unpleasant.
I know the clinic is busy but this behaviour is avoidable. There are many ways to reorganise appointment systems to make them more person-centred. And also if we are espousing a partnership approach, why don't I have my copies of all my results? I know I probably should have got pushier earlier but I didn't because I haven't been well enough. I needed my limited energy for more life enhancing things. And that will be the case for so many in this circumstance.
So hereare some links for those who are accountable for improving care.The evidence that this can be better; it can be improved with the will to do it.
And a reminder from me that no matter how good the staff are if the systems aren't person centred then the whole experience of care is affected and the quality of a persons life is seriously limited in the meantime. I'm hugely grateful for the superb care I have had, free at the point of need but not only is the system letting people like me down but it is letting down the very people who are truly doing their best to plug those gaps. This can be changed with some imaginative thinking, some courageous leadership and frankly some humanity. If you want help to do this, I'm just the person to help. And now I'm on the case, I'm not going away.....