Have you had an amputation linked to diabetes?

[Louis43]

If so, would you be interested in taking part in our study to help other people with diabetes?

We are a team of researchers from St Marys University, Imperial College London, and the University of Chichester. We are interested in understanding what advice and recommendations, with the benefit of hindsight, you would write to your ‘younger self’ in a letter, regarding your diabetes care before your amputation-

What would you have done differently? What would you have encouraged yourself to keep doing the same? What advice would you give yourself now?

If you are interested in taking part either email the research team at charlotte.foster-brown@stmarys.ac.uk or click on the following link: https://stmarys.onlinesurveys.ac.uk/with-the-benefit-of-hindsight
​

"This post has been approved by @Josh DUK"

 

[MikeyBikey]

Hello Charlotte! I am LBKA and to my knowledge the only BKA or AKA regularly on this forum.as others tend to be the partners of people who have lost toes or the forefoot. From my visits to the Limb Fitting Centre and Amputee Physio I know of quite a few. One amputee, a Type I in his fifties, had lost a leg yet smoked because he enjoyed it. I have moved up to the Advancef Level sessions so have no idea if he is in the Beginners or had dropped out (quite a few do). I will email you over the next few days but the advice to self will also include advice to an incompetent vascular surgeon I hold more than partily responsible!

 

[rebrascora]

Hello Charlotte! I am LBKA and to my knowledge the only BKA or AKA regularly on this forum.as others tend to be the partners of people who have lost toes or the forefoot. From my visits to the Limb Fitting Centre and Amputee Physio I know of quite a few. One amputee, a Type I in his fifties, had lost a leg yet smoked because he enjoyed it. I have moved up to the Advancef Level sessions so have no idea if he is in the Beginners or had dropped out (quite a few do). I will email you over the next few days but the advice to self will also include advice to an incompetent vascular surgeon I hold more than partily responsible!

.... and poor current treatment of leg/foot lesions not helping to reduce the risk of a second amputation for Mikey!!

I understand that it is important for us to take responsibility and manage our diabetes as well as we can and learning how to motivate people may well be an important aspect of that and with diabetes is it all too easy to bury your head in the sand because you can't see what the food you are eating is doing to you, but giving people the right tools to do the job..... for instance it took MikeyBikey ages to be prescribed Libre when he could have benefitted from it earlier... and giving Type 2 diabetics appropriate dietary advice and encouraging self testing to adjust their own diet according to how their body responds to specific foods, would be things the NHS could do to improve the situation. Self testing enables you to "see" your diabetes on a meal by meal and exercise by exercise basis and you get feedback from it that you can use. HbA1c tells you almost nothing about what works and what doesn't work for you as an individual.

Stepping back down off soap box now... 🙄

 

[Louis43]

Hello Charlotte! I am LBKA and to my knowledge the only BKA or AKA regularly on this forum.as others tend to be the partners of people who have lost toes or the forefoot. From my visits to the Limb Fitting Centre and Amputee Physio I know of quite a few. One amputee, a Type I in his fifties, had lost a leg yet smoked because he enjoyed it. I have moved up to the Advancef Level sessions so have no idea if he is in the Beginners or had dropped out (quite a few do). I will email you over the next few days but the advice to self will also include advice to an incompetent vascular surgeon I hold more than partily responsible!

Dear MikeyBikey,
Thank you very much for your comment and your interest in our study. We look forward to receiving your email. In the meantime, if you require any help or have any questions please contact the research team at charlotte.foster-brown@stmarys.ac.uk

 

[MikeyBikey]

Dear MikeyBikey,
Thank you very much for your comment and your interest in our study. We look forward to receiving your email. In the meantime, if you require any help or have any questions please contact the research team at charlotte.foster-brown@stmarys.ac.uk

I may take a day or two longer to reply as I had major laptop issues yesterday!

I would also like to thank @rebrascora for her post. One of my macerated wounds is nesr the ankle and there is a debate as to if dressing it is the podiatrist's or district nurse's responsibility!? At the end of the day I am a patient (person) with multiple conditions not a set of unrelated conditions!

 

[everydayupsanddowns]

What a palaver for you @MikeyBikey

Hope you are able to get your wound seen to soon.

 

[Louis43]

I may take a day or two longer to reply as I had major laptop issues yesterday!

I would also like to thank @rebrascora for her post. One of my macerated wounds is nesr the ankle and there is a debate as to if dressing it is the podiatrist's or district nurse's responsibility!? At the end of the day I am a patient (person) with multiple conditions not a set of unrelated conditions!

Dear MikeyBikey,

Thank you for your message. Please take your time to send us your email, there is no urgency. I hope you have some success with solving your laptop issues, it can be very frustrating. Many thanks again for your interest in our study.
Best wishes, Charlotte

 

[Louis43]

If so, would you be interested in taking part in our study to help other people with diabetes?

We are a team of researchers from St Marys University, Imperial College London, and the University of Chichester. We are interested in understanding what advice and recommendations, with the benefit of hindsight, you would tell your ‘younger self’, regarding your diabetes care before your amputation-

What would you have done differently? What would you have encouraged yourself to keep doing the same?
What advice would you give yourself now?

Research indicates that reflecting on past events can be beneficial to the healing process. We would like to support you to do this whilst additionally helping others. You can write down your recommendations or discuss them with us, whichever you prefer.

If you are interested in taking part either email the research team at charlotte.foster-brown@stmarys.ac.uk, scan the QR code, or click on the following link-

https://stmarys.onlinesurveys.ac.uk/with-the-benefit-of-hindsight



"this post has been approved by @Josh DUK"

 

[Louis43]

Have you had an amputation linked to diabetes? If so, we'd love to hear from you.

If you'd like to find out more about our research study, please either scan the QR code or click on the following link for more information:

https://stmarys.onlinesurveys.ac.uk/hindsight-study-a-letter-to-my-younger-self


"this study has been approved by @JoshDUK"

 

[MikeyBikey]

Yes I have. I lost my lower left leg after 57 years of diabetes due to an incompetent vascular some years prior to that and then endless delays after a referral in autumn 2019 to have my appointment cancelled because of Covid. Then a planned day surgery became 13 weeks in hospital, six months in a secure Covid recovery wing , and along the way Sepsis, NoroVirus and Covid Delta. And to cap it off I lost my home and my much loved Jaguar.

 

[MikeyBikey]

Would you be happy to interview by phone rather than Zoom or similar?

 

[Louis43]

Would you be happy to interview by phone rather than Zoom or similar?

Dear MikeyBikey,

Thank you for your interest in our study and for sharing such personal experiences with us. We would be very interested to discuss this further over a zoom meeting, as you suggested if that suits you. In order to discuss this privately, it would be great if you could either forward your email address or contact me at charlotte.foster-brown@stmarys.ac.uk and let me know what days work best for you. Thank you again. Any further questions please let me know. I look forward to hearing from you. Best wishes Charlotte

 

[Louis43]

Would you be happy to interview by phone rather than Zoom or similar?

Dear MikeyBikey,
We would be very interested to hear what you would be happy to share with us regarding your thoughts/experiences over a zoom meeting, if that suits you. If you are interested or have any questions please email me at charlotte.foster-brown@stmarys.ac.uk and we can organise a time and day that suits you best. Thank you again for your interest in our study and I look forward to hearing from you. Best wishes Charlotte