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Dads, Dogs, Diabetes & Data by Louise Brady
My mother’s beloved dog has recently been diagnosed with Cushing’s syndrome. Exasperated, she declares ‘endocrine disorders are rife in this family’... and now extends to our family pets!’
She is right of course... In my family we have a mix of diabetes, hypothyroidism, Conn’s syndrome and pernicious anaemia. My mother is English, my father Scottish and my grandfather from Irish descent. An eclectic Celtic mix of genes to say the least.. If I were a dog, I would probably describe myself as a pedigree mongrel (even though technically I was born and part raised in Scotland).
On a personal level, I have seen the challenges and opportunities faced by my family members and loved ones, when they tell me ‘what it’s really like’ to have a long term condition. My Dad lives with diabetes, and admits he finds this a real struggle at times... During a recent ‘tete- a tete’ about health and wellbeing, I asked him to tell me about his diabetes care, describing his thoughts and experiences.
‘Care should be agreed, not imposed’! Sums up his initial description... and why do they ask me the same questions all time? It’s a challenge to get an appointment as it is.. I would like to go and see my GP/nurse armed with my results and talk about what matters to me!
My Father has a reasonably good grasp of his condition, manages his insulin regime and remembers to take his medications (most of the time). As his daughter, I feel a real sense of frustration and disappointment on his behalf. As a practice nurse, and from a professional perspective, I acknowledge that we have an imperfect system, underfunded, and a general practice workforce stretched to capacity.
I work with people with diabetes everyday, who feel just like my Dad. Some come to see me for a ‘quick fix solution’, whilst others want more information, access to data, and real ‘ownership’ of their health needs. As one of my GP colleagues never ceases to remind me ‘what patients need is a good listening too’. I am now listening... intently....
I am a relative newbie to the twitter community, and was encouraged to contribute by an amazing GP colleague Dr Amir Hannan.
Dr Hannan is a trailblazer who has successfully pioneered patient record access at a nearby surgery. The patients and the team @HTMC are an inspiration, as they are pushing boundaries ( boundaries which need to be pushed in my opinion!) in order to improve health literacy, Self management and ownership of health’ @ingridbrindle is a ‘tour de force’.
In my own surgery, we are currently undertaking survey’s to poll patient opinion, to see if there is an appetite for open access to records. The provisional results look exciting, and promising for the future.....
I love my job, and it’s a privilege to help patients where I can. I am extremely lucky, as my own GP colleagues are amazing, and encourage me to develop my knowledge and skills. Dr Simon Westmerland is our resident GP, with a great passion and insight into diabetes Care.
I have also had the pleasure of working with @andyhersh and @susanmason66 who have developed and designed our local integrated diabetes service in partnership with patients. Two colleagues who I admire, and have worked tirelessly with commitment and dedication to improve local services.
As a practice nurse, I would like to see all diabetes communities think much more radically about new approaches to care, some of which might involve new partnerships.
I believe scarce resources need to move around the health economy and be more responsive to ever changing needs. We all dream of a drug or treatment that may have a ‘miracle’ effect for people with diabetes, but until that day comes we have to continue to focus on delivering the best services we can...
In my view, having access to patient records should become an integral part of a shared journey. I feel increasing the support to people with long term conditions, will enable them to understand and manage their conditions more effectively.
So Dad, what should the future look like? ‘The healthcare team needs to work with me!’ .....My sentiments exactly!
Proactive care, patients and clinicians working together, joint decisions, and training opportunities to learn and grow together are a necessity. Decisions backed by communities like #ourD and inspirational people like @davidcragg demonstrate what care could look like, without boundaries between primary and secondary care...