"Frustration and Consistent Disappointment in my Care Team"

About: James Paget University Hospitals NHS Foundation Trust

(as the patient),

My story is not a short one because it covers a long period of time.

Back in 2009, I did the Dose Adjustment For Normal Eating (DAFNE) course at the James Paget Hospital. This was 19 years after my original diagnosis, and upon doing this course, I came to full appreciate just how unhealthy and painful my life really was. I had been living in fear, dictated largely by what little and vague information I'd been given for managing my Type 1 Diabetes. The DAFNE course had opened my eyes, shown me that life did have options.

I'd been in this bad "afraid of living" way for years despite regularly seeing specialist teams and GPs/nurses who never once offered me help with the effects on my mental health due to this chronic condition. I have always had to reach out to them first, and in most cases, get let down.

This has been consistent even up to present day, where despite doing the DAFNE course (which has given me more hope than any health care professional has prior) and experiencing overwhelmingly strong feelings of grief related to this horrible realisation that I am still trying to address on my own, my feelings have been met with minimal empathy and flippant attitudes; Like I cause my own issues when the reality is people like myself are facing a very complicated fight every day and they don't want to deal with me.

I do not trust most health care professionals to know how to help me after so much disappointment and total lack of understanding of where I come from with my condition. I fear for my life whenever I've had to go into hospital because I cannot trust anyone to know how to cater to my body's specific needs.

On the last occasion where I had to go into the James Paget for assistance with dehydration as a result of stomach flu, I was told not to take my routine background insulin until I'd seen the Diabetic Specialist Nurse (DSN). Good thing I ignored that advice because they came THREE hours after my routine dose time for that insulin type!

Once out, I came to learn that both my insulin types had been removed from my medication prescription list. Yet another stupid thing done that I had to book a GP appointment to have corrected and the GP I saw had no idea why it had been done when I asked!

Eventually I learnt from other Type 1 Diabetics I spoke to online that the PALS service may be able to provide assistance with my dilemma and I hoped they'd be able to enlighten me on further options I could use to see specialist help for my mental health issues around my Type 1 Diabetes. I am so unhappy with my life.

PALS forwarded my email to my already-tried DSN team, which made me angry.

A series of email exchanges occurred after this annoyance, and the conversation lead up to me explaining what I saw my issues as (which should have not been new news to my DSN team, but hey ho surprise surprise), and the main response was I was not communicating to them what I wanted from them. I wanted them to tell me my options for the issues I had!

My DSN team then spoke to PALS again I was directed to contact my GP which I did, to arrange help. I have done this and I saw a person from the Wellbeing service who was nice enough to meet me at my GP surgery.

This meeting went well enough for what it was generally, but a consistent red flag that came up more than once during this appointment (and some previous discussions involving PALS and my DSN team), that they were keen to keep my diabetes management and mental health separate. This is a huge issue. The problems are so intertwined I find it unbelievable that this barrier continuously comes up. It puts like me off even bothering to ask for help! What happened to putting the patient first and actually listening to them? ?

What makes me so angry about this also, is why was my issues not heard before after all the times I'd already raised them? Why do all health care professionals I meet seem  clueless to what services are available to me? I haven't had this condition, or the related problems, for 5 minutes!

Why does no one address the mental health link with patients with diabetes in general? I despair when later learning there have been cuts on mental health services in Norfolk.

There is a huge reason why it's known as an invisible chronic condition. It's so common place for the people who paid, to help us to hide behind phrases like "only you know your condition".  It feels like they've given up on me already,

MY BEST IS NEVER GOOD ENOUGH FOR YOU.

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Responses

Response from Amanda Hood, Project Manager Quality Improvement, James Paget University Hospitals NHS Foundation Trust

Dear Otenba

Thank you for taking the time to post such a detailed story on Patient Opinion. I am really sorry to learn that your healthcare experiences have not been, on the whole positive, although you do comment on specific aspects of support which have been of benefit such as the Dose Adjustment For Normal Eating (DAFNE) course completed in 2009.

I would like to offer you the opportunity to contact me to discuss specifically those aspects of care that the James Paget University Hospitals NHS Foundation Trust provided to understand in more detail your experiences, primarily to see if there is anything further we can do to offer support, but equally so that we can learn from your experiences.

If you would like to contact me on 01493 452304, I would be more than happy to arrange a time to meet with you to discuss further.

Kind Regards

Amanda Hood

Head of Patient Experience and Engagement

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Update posted by Otenba (the patient)

Thank you for your reply. I will be in contact soon.