It's good to be challenged. I read a BLOG by Kate Swaffer today about involving people living with dementia in the ever increasing and expanding world of dementia action alliances. And it's true - we are notoriously bad at doing this. Sometime it’s because we don’t know where to start, sometimes we are concerned that they won't cope, sometimes we want to start our work first and get a baseline to discuss with patients, before expanding it. All of these are wrong.
Early on in my career and leadership journey, I remember saying that last line and the patient with whom I was working asked why. I think of him every time we discuss or do anything to do with involving patients and carers and hope one day to be that person who does engage from the very beginning- together. The latest NHS word is co-production. Well if that's the words, then let's do it properly.
I also met a great Doctor last week, we discovered a shared passion for dementia. I said "I wasn't an expert, but had a real passion". He replied there are no experts, just people, who care and with a passion. So what is an expert- someone with influence and knowledge to be placed in a position of power, an ability to change or is it those who we call “experts by experience”.
I've always told my children we are all good at something, to be an expert, but it might take time to find that skill. For some it's academic, for others creativity and for some it's simply the person they are.
In dementia we lose the person we once were or knew. We struggle to find them again, to catch glimpses of that expert within, but they are new experts now. A different expert and we need to learn about them and with them and by default ourselves in that journey.
I have been progressing my scholarship this weekend, with reflective time to gather my thoughts, decide my path and take stock of what I'm trying to deliver and have come up with the following
- I'm not going to give up on the second Borough. The need is greater and I have an ethical and moral duty, to continue to fight for something more.
- In Richmond adverts are out and we are recruiting next week for the first roles of their type, working with patients and families to focus on self-management, prevention and keeping people at home. The roles aren't exactly what I wanted but compromise is good and we are on the first chapter of what could be an exciting story.
My scholarship has widened my mind and thoughts. Twitter is my new best friend and has opened the door to fabulous contacts and ideas. I don't respond to many tweets because of my role and job, but sometimes I secretly weep in sympathy and love. One day I will engage more and see if my own experiences can provide challenge as others have done for me. My scholarship journey continues with a trip to Australia- watch this space - the excitement and opportunity is truly captivating. Keep reading to see what I’m doing--- it's changing daily as are my aspirations and ambition.
And what about those who ignited this passion and resilience in me, those who shaped and moulded me into the person I am. My parents are in a bad place. There’s so little help and so little ability to make their lives better. My pledge this week is a daily phone call. I can hear the desperation and relief when I call my father. Distance doesn’t enable me to do as much as I’d like, but what I can do is always be there, visit often, call a lot, listen and hear. I can intervene with the system as necessary (because I can and I know it) and pray that the good days make up for the worst.
The real experts in this are my parents, the ones who can shape the future , teach us humility, kindness, resilience and how to deal with pain.
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