Guest Blog: How an annual review showed I'd made no progress

After my last post on the need to clean up the dirty language sometimes used by HCPs I was contacted by someone who asked if I'd allow an anonymous guest post and I was more than happy to do so. I hope, like me, you think it's worth sharing.

Diabetes, eating disorders and my annual review

Type 1 diabetes changed my relationship with food.

I developed an eating disorder but I didn't tell anyone. When I lost weight everyone told me how great I looked and how well I was doing, so I carried on. It was about control and I was very good at it! Everybody wanted to know my secret so they could lose weight just like me.

Eventually I couldn't carry on doing what I was doing. I'd controlled my eating so much that I could hardly eat. I tried to fix things on my own because I didn't want to admit what I'd done or what I was doing. At first I made progress and I was pleased with myself. I ate food and things didn't go wrong like I thought they would. When things happened that I didn't like I stopped until I got my confidence back and then I tried again. I wanted to have a normal relationship with food. But I wasn't addressing the cause of the problem, I was just trying to control it differently.

I'd traded one eating disorder for another. Now I struggle with a binge eating disorder. I'm putting on weight and people now comment on that. Eating disorders have been my secret for a long time. I don't like what I do but it doesn't stop me doing it.

I finally managed to tell my diabetes nurse (the one I see at hospital) what I was doing and I was referred to a psychologist. It seemed to take forever to see them even though it was only a couple of months. I'd unravelled my problem but had no help to put the genie back in the bottle whilst I waited.

Eventually I had my first meeting. Nothing really changed. Same with the next and the next and then something changed. Talking and thinking about what I was doing started to help me and the binge eating started to become less regular. The gaps between binge sessions stated to become bigger. I still had them, I still found it hard, but I was starting to deal with them better. I knew I wasn't better but I felt I'd finally started to make progress.

When I had my diabetic annual review with the practice nurse I realised I wasn't as far on as I thought I was.

She checked by blood pressure, told me my hba1c (7.6%) and then asked me if I wanted to be weighed.

I told her I'd just seen my diabetes nurse at hospital and had been weighed there. She seemed put out that I was seeing someone else about my diabetes but I carried on and told her my weight anyway. Then she commented that my weight had increased significantly since the last time I'd seen her. ARGGH! Tell me something I don't know! I have to see myself in the mirror every day! I thought they knew I had an eating disorder and so I mentioned that I was seeing a psychologist for my binge eating and then it got worse. She decided to lecture me, er, give me some advice.

"Well you know the difference between those who are over weight and those that are not? It's that they stop eating when they've had enough. They don't eat when they aren't hungry or bored."

WHAT???!!! That's not it? You really don't understand, you don't understand what I'm going through and you REALLY, REALLY aren't helping with your advice!!! If you asked me about what is going on rather than assuming then maybe I wouldn't be shutting down whilst sat in this room with you!

I just said "yes".

Thankfully she had no further advice to give and didn't want to check anything else.

I was going to ask why she hasn't checked my feet; what my urine results were, ask about all those other things you are supposed to check. Instead I just wanted to leave and that's what I did. Kicking myself.

I went home and binged. I hadn't done it for three weeks but this pushed me back to the bad place I've lived in for so long. In the evening I did it again. I've never binged twice in one day before. I feel like I've gone back to square one, no, to square zero.

The following day I woke with a bg over 22.
The first thought that drifted through my head was that it would minimise the weight gain.

So thank you to the practice nurse who gave their advice. It helped me realise I've made no progress at all.

I'm not sure if I'm more annoyed with what the nurse said or how I dealt with it afterwards.

I think I hate myself more for what I did.

Guest Blog: When Cagney met Lacey... ...aka Louise & Susan

At the start of Diabetes Week, Louise and Susan are hard at work planning something very special for November.

I do hope you can all support them in their endeavours to make a difference in diabetes care.

So please enjoy the latest guest blog from these two detectives!

A light hearted blog by @louisebrady17 & @SusanMason66 about friendships, diabetes & nursing through the eyes of two detectives....

To set the crime scene, you must have a quick listen to the theme tune!!!

We all love a good detective series.....Sometimes there are parallels between nursing and detective work....... partnership working with colleagues, carefully collecting reviewing and documenting the the ‘evidence’ to inform best practice...shadowing medics, and caring for patients who have been victims of a crime. Detectives know their territory. They can look at a person’s shoes or tire tracks on a car, and know where he/she has been. Nurse’s territory is knowing their patient well... we must find out why are they here? How can we help, what shared goals can we discuss to foster health & wellbeing?

Detectives and Nurse’s must cultivate an eye for detail... In addition, a good cop will observe the landscape closely, whilst nurse’s will refine their communication skills, because every piece of information they discover will may make a difference to that person’s care and recovery.

We know that suspects may lie to avoid incrimination, whereas some patient’s may hide the truth, out of embarrassment, a lack of understanding or cultural beliefs...

Cagney & Lacey was a bold US drama series set in the mid eighties... streets ahead of its time, and brilliantly written. The show itself, seemed to tackle some of the more complex social determinants of health, and covered topics like breast cancer, alcoholism, being a single parent, and the struggle of bringing up children against the backdrop of poverty and social exclusion.

At the centre of the drama, a beautiful friendship develops between the 2 main characters Cagney played by Sharon Gless, and Lacey played by Tyne Daly. To coin a well known phrase... just sometimes, life REALLY can imitate art.

In a similar vein to Cagney and Lacey, and from very different clinical backgrounds, Susan and I meet at the latter end of 2013.. Our assignment came from GP Lead Andy Hershon..(AKA the Diabetes lieutenant) to improve the nursing contribution to local Diabetes care.

Not any easy task, by anyone’s standards... Susan is a passionate diabetes nurse specialist. I am a practice nurse with a special interest in diabetes Care. Like our detective counterparts, the relationship got off to a rocky start... I meet with Susan and the ‘old team’. As is often the case in policing, the initial debate centred on ‘what do generalists actually do for patients with diabetes?’ versus the highly skilled nurse specialist role... Like detectives, both of us value our teams... and were particularly precious of our own ‘branch’. Do practice nurses possess the necessary credentials for the task ahead? (A very diplomatic interrogation!) Well of course we do... but we required ‘backup’ from the specialist branch! We had to focus on gathering lots of information from the chiefs (our patients). This would be the modi operandus, and therefore we deduced that there was no room for ‘rank and file’.

Following some very animated and analytical discussions, about roles, relationships and teams.. We got down to the ‘nitty gritty of police work’.

There was a killer out there (Diabetes) and it was our job to hunt it down... Pre conceptual care being offered in general practice, reaching vulnerable groups across community and hospital, mental health and Diabetes, patient partnerships and non medical prescribing were hot topics.. The pieces of the puzzle were beginning to make sense...We listened and took our ‘clues’ from each other.

Some elements of diabetes care still remained a mystery.. However we had a hunch that if we shared positive and negative experiences and exchanged ideas, we would have some chance at ‘cracking the case’. I learnt all about Susan’s role in supporting the Xpert patient programme, whilst I described the central role of the practice nurse within the diabetes journey, partnerships with patients and the wider community.

We ate..and drank lots of coffee (and tea) in a ‘dingy’ back office (#NHS). This was our de- brief (clinical supervision). We talked about ‘cold cases’ and eventually progressed to meeting in more pleasant surroundings, in the form of local cafe for coffee and cake (minus the cigarettes). There, we hit the pavement running, to hone our observational and critical thinking, gather patient histories and sort through the facts.

Time to review the evidence...

Our newly integrated diabetes team is still in its infancy, but has so far received positive ‘hits’ from colleagues and patient’s alike. There are still many bumps in the chassy.. But we are hopeful that the reports from headquarters (Tameside and Glossop CCG) will be the breakthrough required....

Does this mean that the case is now closed? Not for us.. The plot continues to take sharp twists and turns... Susan and I have fostered a friendship beyond diabetes, where we hook up to ‘chew the fat’. Family, friends, hobbies and foibles, now dominate our conversation. Both of us are mom’s bringing up young men... We both share a love for music; Susan prefers the velvet tones of Canadian crooner Michael Bubble, whilst I subscribe to the Dylan (esk) qualities of Mr Jack Savorettti. Do our inner working relations have anything to do with diabetes care? Not really.. But we do advocate good detective work, through making connections and friendships...

Diabetes continues to be the main perpetrator of many a crime; the landscape requires careful examination, and inclusion of all elements of vital evidence... with patients at the hub of the police department.

No more alibi’s or excuses.. Diabetes care cannot really be ‘policed,’ but needs highly skilled sleuths up and down the country to begin to ‘crack the case’.. As a duo, we have a thirst to continue to help others move beyond traditional ways of working, make connections, and get ‘creative in care.’

In 2014, Cagney and Lacey needed to become far more techno savvy, so we called in ‘The special’ (AKA Dr Amir Hannan) to investigate. With his intuitive powers of persuasion and his technical ability, we were able to the develop a local online forum for networking. We knew we had to examine the crime scene, ‘comb the area’ and encourage more detective work, across our locality...

This assignment is far from over, as there is still much work to do, to achieve ‘the right result’ (patient engagement.. shared learning and opportunities for interdisciplinary learning)... Susan and I started to engage on twitter...Two of the best detective agencies we found reside at @wenurses and #ourD.

Cagney and Lacey’s next assignment comes in the form of hosting a diabetes collaborative event in November, lead by patients, supported by the detectives. As sleuths, we will continue to fight the perpetrator (diabetes) and recognise this is only the beginnings of ‘cracking the case. ‘We hope to become partners with others, build relationships with the wider community, and encourage innovation and creative avenues to improve care.

Please come along to our event in November! We offer fun, friendship and detective work... Tickets and details of the event will be on sale next month... for more information you can DM Cagney or Lacey!

Guest blog: Dads, Dogs, Diabetes & Data by Louise Brady

I was delighted and touched to be contacted by Louise Brady who asked if I would host a blog post she had written. When I read it, it made me excited about the future of diabetes care and the possibilties of communties coming together and really making a difference. I'm looking forward to seeing how the journey unfolds!

If you aren't already following Louise on Twitter I recommend that you do. You can find her on Twitter here: @louisebrady17

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...