Has your diabetes team engaged with you irrespective of covid or not?

[Robin]

Out of interest, how often do people usually engage with their diabetes team outside of the pandemic?

I ask because I see comments such as "I haven't seen/spoken to anyone for months" But I don't expect to hear from anyone for months. Typically, it is at least 13 months between my "annual" reviews and some years it has been longer.

Very true, I usually just see my nurse at the GP surgery once a year for blood tests and toe tickling. Now I’ve got the Libre, the hospital are talking to me every six months, which I don’t feel I need, but I understand that if they are prescribing me something, then they want to check up that I am using it effectively. It’s all very routine, and while it’s a phone call, it’s fine, but if they wanted me to trek over to the far side of Oxford every six months I'd feel differently!

 

[EmmaL76]

Last review was in January 2020 face to face, only contact with a DSN was when I contacted them, she said she'd call back the following week, I'm still waiting and this was months ago, had a video call with consultant August but wasn't asked to get tests etc

I know my consultant was diverted to deal with the pandemic but a little more support from the DSN would have been handy for me seen as I'm struggling mentally etc but I'll just continue to go through it alone

Hope your ok, not much I know but your not totally alone. There’s always us lot. Sorry to hear your struggling. X

 

[Kaylz]

Hope your ok, not much I know but your not totally alone. There’s always us lot. Sorry to hear your struggling. X

Thanks, just the OCD and anxiety, my control hasn't been great since the pandemic started because the smallest things work me up, like today someone's having to come and fix the bathroom sink, that's "my" safe place but now I see it as being invaded and the thought of cleaning behind them distresses me greatly so my levels are higher, there's nothing I can do to control it so I'm just totally stuck xx

 

[EmmaL76]

Thanks, just the OCD and anxiety, my control hasn't been great since the pandemic started because the smallest things work me up, like today someone's having to come and fix the bathroom sink, that's "my" safe place but now I see it as being invaded and the thought of cleaning behind them distresses me greatly so my levels are higher, there's nothing I can do to control it so I'm just totally stuck xx

I’ve never suffered ocd but I can imagine through the pandemic you must of suffered greatly. I have however developed anxiety, due to relentless issues at home along with the diabetes and other health scares at the same time. Mine is very much health anxiety, not so much for me but because my kids rely on me and I feel I’m not emotionally there for them. Sometimes I feel dead inside, like I can’t enjoy anything. Other times I pace with a racing heart and feel like I’m on the edge all the time. I don’t sleep well and sometimes the thought of another day when I get up makes me want to cry, since I’m currently working from home when the door closes and the kids go off on their day I feel the panic sets in and it snowballs. Medication for this gave me ringing ears and so I’m kind of stuck too. The only thing I have felt works for me is reading up on how the nervous system can get stuck in fight or flight mode and how this then takes over your subconscious motions ie, digestion, sleep even how your heart beats. I have an I watch which tells me when my hearts going haywire and I sit and breathe. I’m lucky enough to have a gym at home which I have just started using again and my progress on the heart and health app is going up which is helping. Although looking at the watch can give me anxiety too. This condition has come as a massive shock as to others I would of been the least likely to suffer out of my family, I’m the one that had all the bad luck but I always stayed on top of it. I had a complete breakdown in feb, and ended up in a clinic. It was like nothing I have ever experienced in my life, I said to to the doctor how sorry I was for being in such a mess and that I must be so weak, her words have stayed with me, she said it’s actually a sign of strength, you have taken on so much and kept it inside that your mental cup overflowed. A few words from the right person at the right time can have a big impact. So always keep talking kaylz xx

 

[Kaylz]

@EmmaL76 I appreciate you being so open and sharing that, I don't really have "support", those around tend to just get angry, swear and shout because they are frustrated which of course makes me feel even more guilty than I already do for making them so miserable, I too don't enjoy anything anymore and often cry myself to sleep, waking up I feel deflated that I face the same day I have since this all began, the constant hand washing, cleaning, feeling anxious because of others actions etc and I feel I don't know how much longer I can carry on with it, it's exhausting starting all this at 5am each day, I tried CBT online after a doctor referred me but it didn't help in the slightest, the only thing that makes me feel slightly relaxed is to wash until I feel ok, I hate what the pandemic has done to me and what I've become and fear I'll never be "normal" ever again, anyway that's enough of feeling sorry for myself but thanks for listening xx

 

[EmmaL76]

@EmmaL76 I appreciate you being so open and sharing that, I don't really have "support", those around tend to just get angry, swear and shout because they are frustrated which of course makes me feel even more guilty than I already do for making them so miserable, I too don't enjoy anything anymore and often cry myself to sleep, waking up I feel deflated that I face the same day I have since this all began, the constant hand washing, cleaning, feeling anxious because of others actions etc and I feel I don't know how much longer I can carry on with it, it's exhausting starting all this at 5am each day, I tried CBT online after a doctor referred me but it didn't help in the slightest, the only thing that makes me feel slightly relaxed is to wash until I feel ok, I hate what the pandemic has done to me and what I've become and fear I'll never be "normal" ever again, anyway that's enough of feeling sorry for myself but thanks for listening xx

Ahh your welcome, I too try to avoid a pity post but that’s not what it’s about. These feelings are very real to us and I totally get the feeling of guilt around others. People think you can just pull yourself together and sometimes you can for a day or two. My son said the other day when looking at photos on his phone…look mum here’s one of you smiling, broke my heart.
Anyway I’ve totally taken this thread off course how ever the lack of mental health care should be seen as just as important as the medical/physical aspect. Xx

 

[mikeyB]

For some reason I can’t determine, of late I’ve seen my consultant regularly in the local hospital outreach clinic. Initially it was 6 monthly, and that hasn’t stopped during the pandemic apart from telephone appointmentearly on. They can monitor my adventures in Diabetesland by looking at my Librelink data.

My surgery like to prick my feet once a year, so they can get paid for doing a diabetes review, and the retinal screening gets done at the same hospital as the diabetes clinic once a year. The last one was a bit late, but all seems routine but for face masks.

The problem for T2 patients is that they are largely under GP care, and Practice DSNs. Face to face appointments have are only just starting to return to GP practices, albeit with masks and distancing, and disposable gloves everywhere.

 

[Frenchie0506]

I’d love to hear from you all about your diabetes care from your team since covid hit. Have you experienced the usual amount of contact and engagement or have things… well dropped off a little/stopped completely?
Please do let me know as I’d love to compare experiences!
Looking forward to this one!

I became a diabetic in July 2021 so my experience of diabetes care is in a quite short timescale. Have to say though, the mix of face to face appointments coupled with phone calls has been really good and worked well for me.

 

[Peely66]

As I think I've said in other places on this forum I haven't seen anyone with a specialism in Diabetes since about 2010. I've been seen by GP for yearly reviews and interim 6 month blood tests since moving back to rural Lincs in 2014. I have been frustrated by this (particularly as I've come to the conclusion that some of my current health issues may be complications starting to develop). Phone conversations with GPs have not been very helpful when trying to get to the bottom of these issues. At my last review a couple of weeks ago the "nurse" (I've no idea if she was a nurse or a Health Care Assistant) referred me to a service round here called Spotlight and received a letter from something called EACH (Elective Activity Co-ordination Hub). I was told this was for newly diagnosed diabetics by the referring person so she wasn't sure if they would see me. Time will tell with that one.

We appear to have an issue around here with blood vials for tests being in short supply so I'm on a waiting list for my blood test to find out my latest HbA1c which was disappointing also as I've tightened up my control and wanted to see how that was progressing. I've not seen any mention of a shortage of blood vials on here (although I have been having a break for a bit) Has anyone else experienced this?

So I'd assess my surgery's support with my diabetes as "adequate" but "requires improvement". Terms I'm very familiar with from my school reports.

 

[soupdragon]

Consultant appointments have continued with 6 monthly appointments (video except for the one where the hospital system wasn't working, which was by phone). They now send a blood test form out with the appointment letter and we''re asked to get the blood test done a couple of weeks in advance of the clinic.
DSNs are available by phone if there are any issues between appointments.
GP surgery arranged kidney (urine) test and more blood tests.
Feet currently checked at podiatry appointments.
It had been 2 years since my first retinopathy appointment and I had my second this afternoon!!

 

[Leo]

Since Feb 2020 I have had 1 phone call (Feb 2021) from my DSN requesting a blood test also telling me that she won’t be around for a few months after having surgery. Before this I was prompted every 3 months as a newly diagnosed T1 in 2019 to have a blood test for A1c, cholesterol, Thyroid and to have my BP monitored. Fortunately I self fund G6 so I know my A1c is cool but I have no idea re my cholesterol, BP or thyroid function. Also in this phone call I discussed whether my care could be transferred to the NHS trust I work for which would make things easier for me (My boss had already discussed blood testing and monitoring with the adult endo lead pharmacist who said he would be happy to arrange transfer of care to GSTT from my GP surgery)… My DSN said no. She would have to discharge me from her care and that would put her out of the loop. Well.. she’s been out of the blooming loop anyway with the one whole phone call in nearly 2 years!!! Had my retinopathy thing yearly still… all good with the eyeballs!
So unfortunately I’m with EmmaL76 on this one… Really glad to read the majority of you have had a positive experience in the last 20 mo. Rant over… Soz. X

 

[Lilian]

I had a 'review' . It consisted of care assistant phoning and asking me if my feet were OK. Early on they had texted me to buy my own blood pressure monitor. So I was asked what my BP readings were and some other questions. A week or so later the diabetes nurse telephoned me. Asked if I had any problems. As I have a freestyle libre I was able to plug it into my computer and she was able to look at it at her end. We then discussed anything needed to be tweaked with insulin etc. and that was it. I can, of course, phone to speak to her again if I have a problem or want to discuss anything. As I seem to be managing reasonably well I do not think I need anything else at the moment. I am seen regularly at the eye clinic though. Yet my husband, who has glaucoma, and should be seen at least once a year, has not been seen for 3 years and the two appointments he was given this year were cancelled. He now has a telephone appointment due next week.

 

[Robin]

We appear to have an issue around here with blood vials for tests being in short supply so I'm on a waiting list for my blood test to find out my latest HbA1c which was disappointing also as I've tightened up my control and wanted to see how that was progressing. I've not seen any mention of a shortage of blood vials on here (although I have been having a break for a bit) Has anyone else experienced this?

There was a national shortage of blood vials back in August/September, and the NHS was told to cease non-urgent blood tests, but it was supposed to be resolved by mid September, I think. There was a problem with the manufacture of the vials, apparently we only buy them from one source, (which seems a bit short sighted).

NHS blood test tube shortage set to worsen

NHS England admits supplies of the tubes will become "even more constrained over the coming weeks".

www.bbc.co.uk

 

[soupdragon]

Since Feb 2020 I have had 1 phone call (Feb 2021) from my DSN requesting a blood test also telling me that she won’t be around for a few months after having surgery. Before this I was prompted every 3 months as a newly diagnosed T1 in 2019 to have a blood test for A1c, cholesterol, Thyroid and to have my BP monitored. Fortunately I self fund G6 so I know my A1c is cool but I have no idea re my cholesterol, BP or thyroid function. Also in this phone call I discussed whether my care could be transferred to the NHS trust I work for which would make things easier for me (My boss had already discussed blood testing and monitoring with the adult endo lead pharmacist who said he would be happy to arrange transfer of care to GSTT from my GP surgery)… My DSN said no. She would have to discharge me from her care and that would put her out of the loop. Well.. she’s been out of the blooming loop anyway with the one whole phone call in nearly 2 years!!! Had my retinopathy thing yearly still… all good with the eyeballs!
So unfortunately I’m with EmmaL76 on this one… Really glad to read the majority of you have had a positive experience in the last 20 mo. Rant over… Soz. X

There do seem huge differences in how different diabetes teams have dealt with the challenges of the pandemic. Sorry to hear of your challenges getting support.

 

[MarkGeordie]

DSN: Continued with phone and email contact. I do have a face to face in November which is the first time since covid started.

Consultant: Appointment in Sept 2020 and another last week, due to concerns though I have been given some advice and told I’m on the list to have a face to face in 4 months time.

Feet: Annual check in December 2020, saw Podiatrist in January and April 2021, no details about annual check this year yet.

Eyes: I don’t get annual check because I’m under the hospital, I receive 6 monthly appointments, which include photographs, so I get them more often and this has continued as normal.

GP: Has always been there for any advice.

 

[m1dnc]

Last year everything was done remotely, which was OK as I was 'stuck' overseas and couldn't get back to the UK until August. Pump replacement and training was done remotely too. TBH I thought that worked better - saved a lot of travelling time for everyone.

This year, pretty well back to normal. The only difference was that there was no DSN present when I had my face-to-face with the consultant. He explained that henceforth the 6-monthly reviews will alternate consultant-DSN-consultant etc. I can't see that being a problem and seems to me like a more efficient use of everyone's time. Every cloud ....

 

[Thebearcametoo]

Paediatric team have continued most or less as normal with 3 monthly appointments but with video or phone appointments at various stages. Face to face appointments are limited to one adult accompanying but otherwise the same.

 

[PattiEvans]

I’ve had 6 monthly phone calls from a DSN who could see my Libre results online, but she’s never been that much help as she was not “pump trained”. She has now left and I don’t know if there is a replacement for her. In any case I think the access to my Libre results was specific to the one who left. I’ve had one telephone consultation with the Endo since June 2019 and not had a retinopathy appointment since May 2019. Haven’t had my feet felt since the start of lockdown. In the event I’m not particularly worried as control is pretty good, but I am somewhat concerned that no one has contacted me about a new pump when the warranty on mine runs out on 17November.

 

[Leo]

Paediatric team have continued most or less as normal with 3 monthly appointments but with video or phone appointments at various stages. Face to face appointments are limited to one adult accompanying but otherwise the same.

I have to say I work (Pharmacy ward based) at a children’s hospital and the care our patients receive is second to none including of course our diabetes patients.

 

[Leo]

I’ve had 6 monthly phone calls from a DSN who could see my Libre results online, but she’s never been that much help as she was not “pump trained”. She has now left and I don’t know if there is a replacement for her. In any case I think the access to my Libre results was specific to the one who left. I’ve had one telephone consultation with the Endo since June 2019 and not had a retinopathy appointment since May 2019. Haven’t had my feet felt since the start of lockdown. In the event I’m not particularly worried as control is pretty good, but I am somewhat concerned that no one has contacted me about a new pump when the warranty on mine runs out on 17November.

Just before covid my DSN contacted me to tell me she wanted to remove me from the monitoring register. She called back 2 days later to tell me she had consulted the specialist diabetes GP at my surgery who told her that would not be happening. That put a whole lot of doubt in my mind whether she really knew about her speciality? I have T1 and to be honest I don’t trust her judgement which is why I wanted to switch care to the NHS trust I work for. She refused to defer care.