Lack of diabetes care since COVID

[MarkGeordie]

When I transfere from paediatric care to the young adult service we used to go around in a circle kind of thing, we would get our bloods done, then someone else would do BP etc, then we would see the DSN, then someone for feet and then finally the consultant only if it was needed.

Years later transferring to another area, we saw consultant once per year, but bloods and feet were done at GP and I attended elsewhere for eyes.

Currently, I’m sort of under GP and DSN. I’m due a consultant appointment, I don’t attend the outreach eye service because I’m monitored by a hospital every 3 months for eyes, I attend another site for feet and bloods have always been done at alternative sites for years for anything.

Anyone ever get asked about how they are coping with diabetes? I think that aspect has been missed for several years in my area. As a young adult I remember been refered to a specialist phych when I wasn’t coping.

 

[ScoobySue]

Sorry to hear that you are struggling with complications and having difficulty managing some things yourself as a result. I think cases like yours should be prioritized for appointments and the likes of myself, cut loose a bit when things are stretched, but you are right that it does seem to be dependent on the area you live in.... ie the rather too usual postcode lottery with respect to diabetic care as with other aspects of healthcare.
I hope you at least get some eye screening soon. I know that @Flower has only had telephone podiatry appointment and has major issues with her feet. I believe she has found it necessary to go privately to help prevent any further deterioration in her foot health. I don't understand how they can open up retinal screening clinics but not podiatry. Appointments by telephone are pointless in such cases.

I get my retinal screening at the opticians & they’ve been pretty good with that because of all the laser and surgery I’ve had, podiatary over the telephone hmm don’t think that’s gonna work! Some gps have been complaining they’re missing spotting things with patients in not seeing them face to face, I’d love to be able to afford private healthcare to take care of me but I’m not in that position unfortunately and I’m just hoping that they get to see me soon, I know of other people in the same position as me (kidney disease & cancer) and they’re in the same position unfortunately

 

[ScoobySue]

When I transfere from paediatric care to the young adult service we used to go around in a circle kind

When I transfere from paediatric care to the young adult service we used to go around in a circle kind of thing, we would get our bloods done, then someone else would do BP etc, then we would see the DSN, then someone for feet and then finally the consultant only if it was needed.

Years later transferring to another area, we saw consultant once per year, but bloods and feet were done at GP and I attended elsewhere for eyes.

Currently, I’m sort of under GP and DSN. I’m due a consultant appointment, I don’t attend the outreach eye service because I’m monitored by a hospital every 3 months for eyes, I attend another site for feet and bloods have always been done at alternative sites for years for anything.

Anyone ever get asked about how they are coping with diabetes? I think that aspect has been missed for several years in my area. As a young adult I remember been refered to a specialist phych when I wasn’t coping.

of thing, we would get our bloods done, then someone else would do BP etc, then we would see the DSN, then someone for feet and then finally the consultant only if it was needed.

Years later transferring to another area, we saw consultant once per year, but bloods and feet were done at GP and I attended elsewhere for eyes.

Currently, I’m sort of under GP and DSN. I’m due a consultant appointment, I don’t attend the outreach eye service because I’m monitored by a hospital every 3 months for eyes, I attend another site for feet and bloods have always been done at alternative sites for years for anything.

Anyone ever get asked about how they are coping with diabetes? I think that aspect has been missed for several years in my area. As a young adult I remember been refered to a specialist phych when I wasn’t coping.

When I transfere from paediatric care to the young adult service we used to go around in a circle kind of thing, we would get our bloods done, then someone else would do BP etc, then we would see the DSN, then someone for feet and then finally the consultant only if it was needed.

Years later transferring to another area, we saw consultant once per year, but bloods and feet were done at GP and I attended elsewhere for eyes.

Currently, I’m sort of under GP and DSN. I’m due a consultant appointment, I don’t attend the outreach eye service because I’m monitored by a hospital every 3 months for eyes, I attend another site for feet and bloods have always been done at alternative sites for years for anything.

Anyone ever get asked about how they are coping with diabetes? I think that aspect has been missed for several years in my area. As a young adult I remember been refered to a specialist phych when I wasn’t coping.

I used to see every1 at my hospital too and it would all get done in 1 hit including bloods and eye checks and dietician and then I transferred areas and my feet and bloods would be done by the nurse at the drs and then I’d go hospital to see consultant and have bloods done there too and a urine check, I go to opticians for eye screening. I agree the physical toll of trying to deal with diabetes and all it’s probs does cause a lot of depression and people sometimes need help, I’m glad you mentioned it coz your right it is something that’s never discussed and it needs to be coz sometimes we’re not alright & it’s ok not to be

 

[MarkGeordie]

I used to see every1 at my hospital too and it would all get done in 1 hit including bloods and eye checks and dietician and then I transferred areas and my feet and bloods would be done by the nurse at the drs and then I’d go hospital to see consultant and have bloods done there too and a urine check, I go to opticians for eye screening. I agree the physical toll of trying to deal with diabetes and all it’s probs does cause a lot of depression and people sometimes need help, I’m glad you mentioned it coz your right it is something that’s never discussed and it needs to be coz sometimes we’re not alright & it’s ok not to be

Yes and it’s recommended on the 15 essentials on the diabetes uk document - https://www.diabetes.org.uk/resources-s3/2018-07/15-Healtcare-essentials.pdf

However I’m never asked how I am, if I’m managing or would I need support.

 

[trophywench]

Oh Mark forgive me, cos that post caused a wry smile. Of course we remember all sorts of things the NHS used to do for us at the drop of a hat (though the services offered by decent paed diabetes clinics was always the Rolls Royce version of what the rest of us got) whether it was actually getting an appt with the specialist dept they had referred you to, or getting routine blood tests easily.

It's a bit of a shock aged 70+ to see the NHS more than starting to fall apart because so very few homegrown people appear to wish to spend their future working for them and morale within it is so low - let alone unsociable hours and work/life balance. The Gov can chuck £££ at it - but unless they change their entire mindset at the same time and start telling the truth about not only the NHS PDQ I truly fear for eg. our youngest greatgrandson, still barely 2 years old and just diagnosed at least well onto the autistic spectrum - and his parents and both sets of grandparents.

I'd rather the kid had been diagnosed with diabetes frankly and considering I wouldn't wish that on my worst enemy (don't want them in MY club, thank you) perhaps that conveys how I feel.

 

[ScoobySue]

Oh Mark forgive me, cos that post caused a wry smile. Of course we remember all sorts of things the NHS used to do for us at the drop of a hat (though the services offered by decent paed diabetes clinics was always the Rolls Royce version of what the rest of us got) whether it was actually getting an appt with the specialist dept they had referred you to, or getting routine blood tests easily.

It's a bit of a shock aged 70+ to see the NHS more than starting to fall apart because so very few homegrown people appear to wish to spend their future working for them and morale within it is so low - let alone unsociable hours and work/life balance. The Gov can chuck £££ at it - but unless they change their entire mindset at the same time and start telling the truth about not only the NHS PDQ I truly fear for eg. our youngest greatgrandson, still barely 2 years old and just diagnosed at least well onto the autistic spectrum - and his parents and both sets of grandparents.

I'd rather the kid had been diagnosed with diabetes frankly and considering I wouldn't wish that on my worst enemy (don't want them in MY club, thank you) perhaps that conveys how I feel.

Jenny I see you were diagnosed in 1972 I was diagnosed in 1977 I remember my mum learning to inject with an orange she was so scared!! I remember the glass syringes & everything had to be sterilised , urine tests (no fingerprick checks then at home!) weighing my food she basically became a nurse overnight & I became an angry kid not understanding why I couldn’t have cakes and sweets like my brothers!! Luckily we’ve come a long way since then!

 

[ScoobySue]

Yes and it’s recommended on the 15 essentials on the diabetes uk document - https://www.diabetes.org.uk/resources-s3/2018-07/15-Healtcare-essentials.pdf

However I’m never asked how I am, if I’m managing or would I need support.

Tbh I used to asked how I was but I’d lie and say I was fine even though I wasn’t because there was nothing they could do anyway and I always put on a brave face but with the pressure of covid I’ve really started to struggle emotionally with worries about my health & life in general and I’m sure many people are in the same boat but I’ve learnt that it’s ok not to be ok coz other people are like me also and it’s not a sign of weakness we’re only human

 

[MarkGeordie]

Tbh I used to asked how I was but I’d lie and say I was fine even though I wasn’t because there was nothing they could do anyway and I always put on a brave face but with the pressure of covid I’ve really started to struggle emotionally with worries about my health & life in general and I’m sure many people are in the same boat but I’ve learnt that it’s ok not to be ok coz other people are like me also and it’s not a sign of weakness we’re only human

Totally agree. I got to the stage in about April where I was suffering that much, felt alone and was getting some worrying thoughts that I had to approach the GP and then I did a self referral to talking therapies and then had a 9 week long counselling period. I had 1 session a week. If I hadn’t of approached anyone I worry now what state I would of ended up in.

 

[ScoobySue]

Totally agree. I got to the stage in about April where I was suffering that much, felt alone and was getting some worrying thoughts that I had to approach the GP and then I did a self referral to talking therapies and then had a 9 week long counselling period. I had 1 session a week. If I hadn’t of approached anyone I worry now what state I would of ended up in.

Maybe we need to start a new thread about mental health where people can just talk & air their worries, sometimes I feel like I’m the only1 who has rubbish control even though I try my best , I hate going trough the same monotony day after day blood sugars high blood sugars low,have I got enough money, is the world gonna end,why are people evil, etc etc it just builds and sometimes I just wake in the middle of the night full of dispair about everything

 

[Flower]

It has been a really difficult time without the support of face to face clinics. I understand why things had to be virtual but there do seem to differences around the country in the speed and way services are restarting.

My retina clinics have kept running but high risk podiatry stopped in March 2020 and have been by phone ever since. I afford private podiatry from the pension I got from having to retire early when I lost my sight from proliferative retinopathy, driving licence revoked etc. It's the circle of life - pension paid because I couldn't see to find my way out of the house let alone work then my feet collapsed with Charcot Foot. I now use that pension money for private podiatry to try and keep my leg for as long as possible after being told to have a below knee amputation. I'd love the clinics I relied on so much to be there but as yet they haven't restarted. I also get that paying for services however vital they are is not always an option and in that respect I am lucky.

It's reinforced to me what an amazing service the NHS is and how much I rely on it to keep myself feeling as safe as possible with diabetes and the complications I have. Podiatry was enabling me to keep my leg which is in a below knee cast for as long as possible and I just had to find an alternative way to do this as I was making myself ill with fear dealing with the prospect of amputation.

I hope you are able to get the services back virtually or in person as soon as possible.

 

[ScoobySue]

@Flower Hi I was reading your blog on retinopathy & I completely understand what you went through and still do now as I too was in the same position & had excellent care from my eye surgeon but sight lost in left eye & right eye blurred vision due to a damaged macula ,no night vision,no side or below vision & just grateful for what little sight I have left. I also had to give up a well paid job and hand my driving license back,I now rely solely on the benefits system and peoples kindness, I only have the nhs to help with medical stuff as I can’t afford private care
I’m sorry to hear about your leg that’s another worry you can do without and your right to try and get the best treatment for it and maintain it as long as you can