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type 1 diabetic - your honest experiences with your care trust

margamandan

Active Member
Messages
26
Location
Bedfordshire
Type of diabetes
Type 1
Treatment type
Insulin
hi, how is everyone finding their health care trust? do you feel supported, or dictated to? or neither? i'm finding it somewhat difficult at times, especially since some other clinicians left the department. it seems my wants and feelings are secondary in regards to my treatment.

my apologies for the negativity expressed.
 
Hello and welcome to the forum @margamandan

What issues are you currently facing ? I tend to see a different consultant each year and am now on my third DSN but all have been supportive. Admittedly they only ever hear from me if I have an issue and it can take a while to get a response, but then it's generally not life threatening when i'm in touch.
 
I stay put until I see my consultant... especially on Mondays!! One time I had an8.50 appt and the reception tried to get me to see another consultant. I had to wait until 11.30 due to him doing ward rounds, but I will not see anyone else.
Learnt that from experience!!

My consultant is very good. He listens, I have his and the diabetes educator email and no problems. However hospitals vary, before this Hospital I had another and the nurses and consultants and then the manager came out to my house and admitted they did not have the knowledge to deal with me and I knew more!!!
 
My consultant is decent too........

I don't really need any special treatment.....I go in, get my blood taken, weight, BP etc....hand over my meter for upload....wait and then get my HbA1c.....

home time.....I am not poorly controlled but I am not well controlled either...no judgement is passed...

and I don't shear from any of them until my next appointment arrives...
 
That's a difficult question because it depends on how you are as a person and also on who you see. Generally speaking, I see one of two Drs at the surgery, one who is very text book and patronising (she gets short shrift) and the other one who is a diabetic himself and much more interested in you as an individual rather than part of a group. The Consultants at the hospital where you see a different one every time are very friendly where I am and very open to answering any questions you may have. All of them tend to stick to the 'routine medication' (ie they mention statins all the time) but overall I think they do a really good job, it can't be easy dealing with so many people with this condition some of whom take an interest in their health and some who don't. Once they realise you are educated on the disease and wanting to do everything you can, I find they relax a little. I remember at the start, one Consultant saying to me 'When you are referred back to your Drs you MUST be proactive by making sure they do your bloods regularly, get the results from them, ask them for the blood forms before any appointments, get your eyes done and your feet checked etc'. He said it was easy to get lost in the system if you sit back waiting. To be fair, I'm not the type to wait very long for anything but if you are 'shy' then toughen up and get in there. x
 
Well it’s 18 months since my last a1c, so I phoned today to ask for one. We’ll see if my answerphone message is ever responded to.
 
They called back - apparently a new computer system had wiped my record off the appointment system. I now have an appointment in May.
 

My experience with Diabetes HCPs has not been so good unfortunately. I just don’t find them knowledgeable or helpful.... But maybe that’s my fault as I’m probably not a good patient. I just go see the consultants twice annually because I have to. Ive managed to cancel twice yearly appointments with DNS last year . 2 x consultants, 2x DNS and 1 x GP nurse appointments a year was driving me crazy ...too many appointments!
 
Thanks for the responses. I just seem to meet resistance at every turn. I can feel real lonely.

I inject 5-8 times a day if there are correction dosages, and was only being issued 100 needles a month, had to force it being increased to 200. Same story with glucose strips.

I got to the hospital and have a consultation and the conversation is always misrepresented after the fact. I appreciate these people are overworked and probably underpaid relatively speaking, but it's been affecting my wellbeing and I'm just sick of it. It's difficult to write all experiences without writing a small essay.

I'm literally off to the gp surgery to ask for a referral to a different hospital, but don't know if I'm allowed this or not?

Take care all, thanks again.
 
Last edited:



It really does matter who you see. This surgery doctor was great. I've not had him before but he has referred me with no struggle. I so appreciate it.


Thank you all again
 
I don't get to see a dr or consultant. Only a specialist nurse.
Told over 4 years ago never to use stomach, backside or legs for injections by consultant because of retention.
Told only use love handles. They ran out over 2 years ago. Tell them nowhere to inject and it gets washed over. Still high hba1c and daily readings fluctuate between hypo and 31mmol +.
Given up as can't find help.
 
Hi widget. Even though I'm low from my experience and weary, please don't give up. I've never heard of the retention thing, but I'm so slim I can only inject in my belly.


This pdf outlines your rights. Demand them.

Your Diabetes – Know Your Rights - Insulin Dependent Diabetes Trust
PDF

Please don't give up, this is your life, and your quality of life we are talking about. If you need an ear, I'm hear, I'll help how I can?
 

Attachments

My team in here South Wales are wonderful. I went to clinic this morning, my consultant wanted to know all about how I was getting such good Libre graphs and was really interested in the MiaoMiao transmitter I use to Bluetooth the numbers to my phone and watch. We had a good chat about stacking insulin and how the tech I use enables me to accurately gauge how much insulin on board there is, so I can correct highs safely. Hospital team are great.

My team at the GP surgery are also pretty good - I occasionally have a phone call from the practice nurse to tell me off for having such a low HbA1c, but the DSN and my GP are more than happy with my management style once they see my CGM results and see I’m not having monstrous hypos left, right and centre.

I can see I’m very lucky
 
Hi @widget1955
Given that you used love handles for 2 years, has your stomach recovered in that time? People say sites recover given time. Not had direct experience but might be worth a try?
 


Hi Mel. Thanks for your input. Can I ask, did you get the libre/miaowmiaow from your health provider? Also, what do you mean by cgm? Sorry but its been less than 3 years since diagnosis, Which seems ages, but has flown by. I'm still learning.

Stay lucky!
 


Hi, I think the same in regards to thinking it's me. But I do meet healthcare professionals who are great, but seem to have met more who aren't. I know I'm a questioner. I always want to know how, why, where, what and when. I sometimes wonder if my constant questioning makes people feel I'm trying to undermine them.

One thing I noted with my doctor today though was the lack of surprise from him at my criticism of the local hospital department. Sometimes it's what is not expressed that can have importance.

I hope things get better!!
 
My Libre is on prescription and I purchased a MiaoMiao myself - it turns the Libre into a full CGM (constant glucose monitor), complete with alarms on my phone and smartwatch.
 

Stay strong. some doctors don’t like patients who research on internet and question too much. You are definitely entitled to being referred to another hospital/consultants. It’s written somewhere in the nhs guidelines.
 
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