Cancelled appointments

[Ivostas66]

Good morning all!

Has anyone else had cancelled appointments with consultants over the past couple of years?

I am under a consultant at the local hospital and from diagnosis in 2018 have had an annual review with him. Since late 2022 I have had every consultation cancelled/ postponed. It is usually a letter a couple of weeks beforehand along the lines of "it has been necessary to move your appointment with Dr X from June to November..." I contacted my DSN last week as my levels have been a bit high for a while and wondered if my pump needed adjusting. I mentioned that I was happy to wait until my next consultation in October only to be told "Ah... yes... it looks like that's been cancelled..." This is the fourth cancellation in a row.

Anyway, my GP surgery pinged a message to me demanding I have blood tests, with a subtle hint that they would no longer prescribe CGM or pump if I wasn't providing data from blood tests etc. I did pop in and complain and now have bloods booked this week. This is the same doctor who gave me a telling off a few years ago when my HbA1c went from 46 to 50 - "What are you doing wrong? Too much Christmas pudding? Have you been overindulging? Too much beer? You need to get this under control."

Being under both the specialist diabetes centre as well as my GP obviously has its advantages (for the first few years I was having tests every 6 months, my consultant pushed very hard for me to be given the Libre early on and also now a pump and the extremely knowledgeable DSNs are available 24 hours a day) but like many others I seem to have been lost in the system.

 

[helli]

While my appointments do not get cancelled, they are just not made. In the last 10 years, my diabetes clinic appointments have moved further and further apart. I think my "annual" pump review happens once every 18 months.
I used to push back against the GP surgery diabetes review as they knew so little about Type 1. In recent years, I have decided to keep the GP surgery happy as an opportunity to get my blood tests and make my own decision whether to do anything with the result. This means I get my HBA1C checked every 6 months with cholesterol, liver function, etc. checked every 12 months.
Doing the tests seems to check the GP box so I do not need to waste my time of the surgery's time with an appointment but I receive no messages about refusing prescription.
The time to do a blood test in small - I schedule it early morning before work. And I can look at the results in the NHS app at my own convenience.

 

[rebrascora]

I get 6monthly blood checks at my GP practice and an annual review with the nurse at the GP practice who has been given some training in diabetes and is very keen to learn more and quite knowledgeable. BP, weight and foot pulse and toe tickles are done there annually. Then I get a telephone appointment with my consultant more or less yearly. It was scheduled for December but have just had a letter telling me it has been cancelled and a new one will be made and I will be informed in due course. If I have problems I can call the clinic helpline, which I have only used twice in 5.5 years and whilst they call back within 2-3 days I haven't found it any more useful than my own knowledge and experiments to resolve problems, so I now am happy to manage on my own. I don't think I have a DSN as such. I don't really feel I need my consultant appointment either really, but I like to touch base with him once a year for a 5 min chat. It tends to be more about my approach to managing my diabetes rather than the practicalities of managing it. Obviously if I wanted to change insulin or be considered for a pump then that appointment would be my opportunity, but at the moment I am very happy managing things on my own and without "interference". 🙄

 

[Ivostas66]

The eye screening and foot checks are never an issue - I am asked to book an appointment and it is usually within a week or so. Meetings with my consultant are always very swift and always positive (he is one of the country's leading endocrinologists and has great sympathy for the significant changes a late onset type 1 faces). I just haven't had a meeting for almost 2 years as they keep cancelling and no request for bloods in that time either.

I was popped onto the Omnipod at the start of March, told to sign up to Glooco so that the DSNs and consultant could keep a regular check on things, had a call back after a week to 'tweak' my doses, but nothing since. As my blood has been averaging around 9mmol/l for a couple of months, with early morning hypos creeping in over the past two weeks, I was a bit miffed that appointments are cancelled. I know that my levels have been affected by my poor health (suspected heart attack back in April - thankfully now given the all clear by my cardiologist) but know that my GP will grumble when my results come in. My wife is concerned as physically I am very thin - 6' tall weighing 72kg, but very little muscle mass. She also pointed out a couple of days ago that I had cooked for her and our daughter, but then said "what are you having, you don't seem to eat very much lately?" A sudden realisation that I hadn't considered eating. Just looking at food seems to cause spikes in my BG.

Just been told I have a call back from a DSN at the clinic later today so hopefully some of my concerns can be discussed with her.

 

[rebrascora]

So are you saying that you haven't had an HbA1c in 2 years or a lipid panel or liver and kidney function blood/urine tests? Surely they did an HbA1c before they started you on the pump?

As regards your weight, is that a psychological problem do you think. Spikes after meals are generally a matter of timing of the bolus insulin you inject before you eat. I found I had to inject quite a significant amount of time before breakfast to prevent quite large spikes up to mid teens each day. Sometimes as much as an hour or more, depending on my waking reading. The higher I am before the meal, the longer it takes my insulin to work and the more time I need to leave between injecting and eating. Are you eating plenty of protein and fat as those will not "spike" your levels. If you need to put on some weight then nuts and cheese and eggs and avocados and real double cream in your coffee (my daily treat) are all calorie dense and will give you slow release energy without impacting your levels significantly but there is no reason why you can't eat more carbs if you want to but you have to learn how to dose for them and get the timing as near right as you can and that is just a question of careful experimentation to find what works for you and your body and your insulins and particular foods. It is complicated at first, but gradually it just becomes almost second nature.

Your GP should not be commenting on your results and the fact that he made negative comments about an HbA1c of 46-50mmols/mol, which is excellent and in fact pretty much ideal, shows his ignorance about Type 1 diabetes management. In some respects comments like that are dangerous and warrant a formal complaint. Type 1 diabetics can eat and drink a normal varied healthy diet including those things. Please do not let such comments influence your dietary choices.
I choose to follow a low carb higher fat way of eating for a variety of reasons, mostly because I have found other health benefits for me, but it isn't necessarily easier to manage my diabetes with that diet. Please don't be frightened of carbs. You just have to learn to inject the appropriate amount of carbs at the optimum time to manage your BG. I had a rare high carb meal yesterday of a hot beef sarnie with roast potatoes and I only just went a tiny bit above target because I was not frightened to use as much insulin as necessary to deal with it plus I kept a close eye on my BG levels and engineered them to be between 4 and 5mmols when I injected my insulin and sat down to the meal so there was a bit of forward planning about an hour and a half before when my levels were rising and I jabbed a small correction to get me down to about 5 before the meal. If I had been at 7 or 8 when I sat down to eat that meal, I would have been well into double figures or I would have had to wait 30 mins before eating it, but by giving myself that correction an hour and a half earlier to get me down to about 5 before the meal I was able to just inject just 5 mins before I ate.
Mostly I just keep a close eye on my Libre and when my levels start to come down after my prebolus injection, I know the insulin is working and I can eat my food and it will counteract the carbs in my food. Libre has really revolutionised my diabetes management in helping me get my prebolus timing as good as it can be.

 

[everydayupsanddowns]

my diabetes clinic appointments have moved further and further apart. I think my "annual" pump review happens once every 18 months.

This is what I find too. I have an annual checkup at my GP and an annual pump clinic. I try to make those 6 months apart, but each is generally late arriving (and I don’t chase). I think my ‘annual’ pump appointment in the post-covid chaos was more like 2.5 years.

My GP surgery sometimes gets a bit naggy if I don’t get updated bloods and gives the distinct impression they will stop issuing my repeat prescriptions (which I keep telling them would kill me, at which point they apologise effusively).

But yes, over recent years, and certainly post pandemic, the health system seems to have been running rather ragged.

the fact that he made negative comments about an HbA1c of 46-50mmols/mol, which is excellent and in fact pretty much ideal, shows his ignorance about Type 1 diabetes management. In some respects comments like that are dangerous and warrant a formal complaint. Type 1 diabetics can eat and drink a normal varied healthy diet including those things. Please do not let such comments influence your dietary choices.

Quite right @rebrascora - you shouldn’t be being made to feel scared of eating @Ivostas66.

Having a perky HbA1c is no good if you can only achieve it with punitive action, stress, worry, and low quality of life. There has to be a balance between diabetes management, ‘good enough’ results, and living a life you can enjoy.

 

[Inka]

Hopefully the DSN will help you sort your pump settings @Ivostas66 Focus on eating well. I know it’s a pain with Type 1, but it’s not the food’s fault, it’s the insulin (or lack of). Don’t let Type 1 mess with your enjoyment of food or make you fear it. In addition, missing meals or eating tiny amounts can actually be counter-productive as your body will just pump out its own glucose. Eating three regular meals plus any snacks you need/want is a good routine to have.

You’ll soon learn what works for each meal. I kept a little notebook years ago where I wrote down my meals inc carbs and quantities, along with the bolus needed. It made it all very quick - pasta and veggie sauce? Weigh out X amount of pasta for me and 3 serving spoons of sauce, take X amount of insulin.

 

[Satan’s little helper]

Good morning all!

Has anyone else had cancelled appointments with consultants over the past couple of years?

I am under a consultant at the local hospital and from diagnosis in 2018 have had an annual review with him. Since late 2022 I have had every consultation cancelled/ postponed. It is usually a letter a couple of weeks beforehand along the lines of "it has been necessary to move your appointment with Dr X from June to November..." I contacted my DSN last week as my levels have been a bit high for a while and wondered if my pump needed adjusting. I mentioned that I was happy to wait until my next consultation in October only to be told "Ah... yes... it looks like that's been cancelled..." This is the fourth cancellation in a row.

Anyway, my GP surgery pinged a message to me demanding I have blood tests, with a subtle hint that they would no longer prescribe CGM or pump if I wasn't providing data from blood tests etc. I did pop in and complain and now have bloods booked this week. This is the same doctor who gave me a telling off a few years ago when my HbA1c went from 46 to 50 - "What are you doing wrong? Too much Christmas pudding? Have you been overindulging? Too much beer? You need to get this under control."

Being under both the specialist diabetes centre as well as my GP obviously has its advantages (for the first few years I was having tests every 6 months, my consultant pushed very hard for me to be given the Libre early on and also now a pump and the extremely knowledgeable DSNs are available 24 hours a day) but like many others I seem to have been lost in the system.

Hello, yes. Consultants have pulled out on me without notice. Stay in touch with the GP surgery tick box tests saying “yes I do still need insulin.” Because they hold the “keys” to the “gate” in my experience. Till you can get past the “ghosting” from any consultant.

 

[Ivostas66]

So, I had a lengthy talk to a DSN this afternoon. Extremely helpful!

When I was popped onto the pump in March, I was moved from my consultant endocrinologist to a pump specialist. No one told me (!!!) and the backlog for appointments is horrendous. He has also apparently headed off on sabbatical, which is why my October appointment has been moved (4th time is a charm!) to 6 months time. DSN apologised "Oh my word, no wonder you're concerned, your last 3 appointments have been moved!"

At least I found out the results of the blood tests I had last week. 70% in range, which my DSN said was incredible considering the year I have had healthwise. My HbA1c is higher than I would like at 53, which I am rather upset about, but she again told me that a virus, heart/ lung problems, CT Scans, steroids and significant issues at work would raise anyone's HbA1c and 53 is extremely good considering. She also found on the system bloods that were taken when I was admitted following my suspected heart attack back in April and they were sitting at 54. Again, no one divulged this information.

She is going to push for me to be moved onto the closed loop system. Sounds like we are one of the counties that is later than others to receive approval and the first group will be receiving Libre 2+ and Omnipod 5 in a couple of weeks. She is hoping I am moved onto that system in mid-November.

 

[rebrascora]

Those are great results! I think the guidelines for HbA1c are low 50s and you are hitting the TIR target of 70% as well, so you are probably in the top 10% for diabetes management, even if you have had a shocking year health wise, so a huge well done!!

 

[Ivostas66]

Those are great results! I think the guidelines for HbA1c are low 50s and you are hitting the TIR target of 70% as well, so you are probably in the top 10% for diabetes management, even if you have had a shocking year health wise, so a huge well done!!

Thank you! I was in the mid to low 40s until a couple of years ago so I am really self critical if I am higher than that. My consultant has always told me my management in is in the 'excellent' category, but I tend to beat myself up if it isn't 'perfect'. I remember during the pandemic, having three days in a row where I was 100% in range and managed a week around 95%. Probably did me more harm than good as that is what I aim for. I know there is no such thing as perfect in diabetes management, but I strive to be the best I can be in everything I do. I suppose I have found being off work and exploring employment opportunities tough as it has given me more time to occupy myself rather than being dictated to by curriculum, assessments, examining bodies, Ofsted et al.

 

[mashedupmatt]

I've never seen a consultant since diagnosis - saw a locum doctor once at the hospital about 6 months in (I was diagnosed 2yrs ago) but for about 5 minutes and quite frankly I felt that I knew more about my condition than he did (from books and online resources) - GP is excellent and if I need anything changing she always gets in touch with DSN etc. who are equally good - Can I ask how you can get a pump and considered for HCL with HbA1c of 53 though? - mine was 52 last time and was told I had no chance (NICE says 58+) - MDI can be exhausting and a real pain - would love something to try and make this constant grind a bit easier and feel its unfair to penalise people for maintaining control (without considering the mental burden)

 

[Chelseagirl]

Until I moved to Cambridgeshire I had an annual review by consultant, and another with the DN at my surgery. They were timed 6 months apart. Consultant was more to check insulin doses, any problems etc. DN did bloods and feet etc. Now? DN review due last May, still nothing. Requested consultant review which was denied. Think this is, by far, the worst place I have lived with regard to care. Even during Covid I had a video consult with the consultant. In the three years I have lived here, I have never seen a GP and only one review by a nurse. Just get sent for bloods and no response to results. The last bloods were ordered by the Pharmacist at the surgery who was doing an annual medication review as I said I hadn’t had any done and was overdue for check. Luckily I am medically minded enough to interpret my results myself. Any contact I have had with official DN has been done by email (which can take 3 weeks for response) or text. Can’t wait to move from this godforsaken area.

 

[Ivostas66]

Until I moved to Cambridgeshire I had an annual review by consultant, and another with the DN at my surgery. They were timed 6 months apart. Consultant was more to check insulin doses, any problems etc. DN did bloods and feet etc. Now? DN review due last May, still nothing. Requested consultant review which was denied. Think this is, by far, the worst place I have lived with regard to care. Even during Covid I had a video consult with the consultant. In the three years I have lived here, I have never seen a GP and only one review by a nurse. Just get sent for bloods and no response to results. The last bloods were ordered by the Pharmacist at the surgery who was doing an annual medication review as I said I hadn’t had any done and was overdue for check. Luckily I am medically minded enough to interpret my results myself. Any contact I have had with official DN has been done by email (which can take 3 weeks for response) or text. Can’t wait to move from this godforsaken area.

That sounds horrid and sadly familiar to my experiences. Pre pandemic things seemed much better - meeting in person and discussing things with my consultant was good and did wonders for my mental health. Post pandemic has been phone calls every 6 months; very brief check in and "so we'll speak again in 6 months time". Problem being the cancellation/ postponement of appointments. The nurses at my surgery are very good (feet check etc) but GP less so. Similar experiences with booking appointments for feet etc - a month from request.

 

[Ivostas66]

I've never seen a consultant since diagnosis - saw a locum doctor once at the hospital about 6 months in (I was diagnosed 2yrs ago) but for about 5 minutes and quite frankly I felt that I knew more about my condition than he did (from books and online resources) - GP is excellent and if I need anything changing she always gets in touch with DSN etc. who are equally good - Can I ask how you can get a pump and considered for HCL with HbA1c of 53 though? - mine was 52 last time and was told I had no chance (NICE says 58+) - MDI can be exhausting and a real pain - would love something to try and make this constant grind a bit easier and feel its unfair to penalise people for maintaining control (without considering the mental burden)

In November '23 I came down with an horrendous virus. Trips to an acute illness clinic didn't really help too much. I ended up on a steroid inhaler. For about two weeks, my levels were averaging over 10 mmol/l - combination of the steroids, illness and stress/ worry about being absent from work. The DSN felt that a pump would help significantly given my age (late onset), type of job and having a young child. She did say that my control was in the excellent category (46 to 52 seems to be my 'average') and that they could refuse. However, she said the two weeks of high HbA1c meant I could qualify and would push the consultant to consider my case - he agreed without question. I was then fast tracked and added to the next cohort, which was in Feb/ March this year. Apparently my GP took a lot of persuading by the clinic. Apart from 2 people at the pump 'fitting' session who were really struggling with managing levels the rest were in a similar position to me - good control, but exasperated with things. One was a young woman who had for a time "given up" - begun to self harm and been in hospital recently in a coma.

A student I teach did laugh at me though. I told her excitedly that I was having an Omnipod Dash and she giggled "wow sir, you're still in the stone age. I've been on the Omnipod 5 now for ages! I didn't know they still made the Dash!" I think in many counties children and young adults are put on the pump system at diagnosis now. Health care professionals are pushing for everyone to switch, but as my DSN said yesterday, they have a 4 year time frame in which to move 1800 people from the pump to the closed loop system, and that's just this county. Some areas of the country are much further down the line than others - ours was one of the last to receive the go ahead apparently.

 

[mashedupmatt]

This is an interesting tweet from Partha Kar (who is T1D and Technology Lead for NHS England) basically saying that anyone who is on a pump and has CGM is entitled to go on to HCL with no funding implications (I just need to get on a pump!)

 

[Ivostas66]

Just had a call asking me if I am available for the training/ fitting session for the Libre 2+ and Omnipod 5 in a couple of weeks!

They said that they are trying their best to fit as many people onto each months 'update' as possible as they are late to the game as it were. They also have targets to meet in terms of moving people from injection to pod, but that is also taking a long time. I remember being moved onto the Libre 2 (which I had to push for) a few weeks after they had announced the release of the Libre 3. Seems like a few years have to pass before any new tech is given the green light/ funding.

 

[martindt1606]

Not a cancelled appointment, but last week I had a phone appointment with a consultant after the gp practice pharmacist questioned my use of Creon. The appointment was booked so that I didn't have a 2.5 hour round trip to the hospital. Consultant recommended a 14 day course of antibiotics in the letter to the GP. The practice pharmacist refused to action the prescription, the consultants secretary said he couldn't send a digital prescription to my local pharmacy and also said she couldn't post a paper copy. I know that it was 2 Health Authorities but having a phone appointment so i didn't need to travel and then making me travel to get the drugs.................😡

 

[Leadinglights]

Not a cancelled appointment, but last week I had a phone appointment with a consultant after the gp practice pharmacist questioned my use of Creon. The appointment was booked so that I didn't have a 2.5 hour round trip to the hospital. Consultant recommended a 14 day course of antibiotics in the letter to the GP. The practice pharmacist refused to action the prescription, the consultants secretary said he couldn't send a digital prescription to my local pharmacy and also said she couldn't post a paper copy. I know that it was 2 Health Authorities but having a phone appointment so i didn't need to travel and then making me travel to get the drugs.................😡

I think my other half had that with some medication prescribed by the consultant, it could only be dispensed by the hospital pharmacy./

 

[Proud to be erratic]

I had that a couple of years ago, a script that could only be provided by the Hospital Pharmacy and I had a modest drive rather than walking to my (then) normal Pharmacy. I share your feeling of frustration. I think today I'd email the Hospital PALS and raise this as a complaint, asking them to investigate why (in this current era of Integrated Care Boards/Systems) such "practices" are still being imposed.