Feeling unsupported

[casand2011]

My husband has been diagnosed with type 1 after lots of tests and seeming to be pushed from pillar to post,but at last we were put under the care of Exeter diabetes centre. We went off to meet the consultant feeling at last we have found the much needed support and advice but sadly came away feeling quite underwhelmed.A visit to the nurse a week later at our gp surgery was arranged to authorise the prescription only to be told the surgery doesn't support type 1 as no funding. Phone call to diabetes centre.who insist our GP can sign off prescription,back to GP who says no but will do it on this one occasion as we had no spare insulin pens or needles so bit nervous approaching the weekend without backup and having come off metformin and Gliclazide. When we went to pharmacy no prescription had arrived!! The pharmacist was brilliant and said he would contact surgery Monday and get it sorted out. Today we rang the diabetes centre for advice and was told someone would call back within the hour,2 hours passed before a call and then the nurse although sympathetic said we needed to complain to GP practice. In all of this husband levels today have shot up and we are now in a situation where we just dont know who we can turn to for help . Feeling let down by the system - why isnt type 1 seen as being serious by our own doctor ?

 

[Alan44]

Hi @casand2011 I so feel for you and your husband and I will be honest and say that I cannot offer any suggestions on how you should now proceed, but I'm sure you are not alone in this situation and hope some of our more seasoned T1's will come along and offer some help and assistance
@Anna DUK @everydayupsanddowns

 

[Sally71]

Unfortunately GPs see far more type 2s (type 1 is rare by comparison) so they tend to base most of their knowledge on that. When my daughter was diagnosed they treated it as not particularly urgent and she almost ended up in DKA; sadly at the time I didn’t know enough about it to argue!
I can’t believe you are being treated so badly though, have none of these people ever heard of diabetic ketoacidosis?
So if the GP honestly thinks he can’t support your husband and issue prescriptions then he needs to refer him to someone who can. Urgently. If he won’t then you’ll have to make a complaint to the practice manager, something along the lines of withholding life-sustaining medication such as insulin is illegal.
In the meantime though, how high are your husband’s blood sugars at the moment? If they are reaching danger levels (20s) then get him to A&E without delay. Can you test for ketones? If these are more than a trace then definitely get him to A&E. Type 1 in adults tends to come on more slowly than in children, but you still can’t afford to mess about. Good luck

 

[casand2011]

Unfortunately GPs see far more type 2s (type 1 is rare by comparison) so they tend to base most of their knowledge on that. When my daughter was diagnosed they treated it as not particularly urgent and she almost ended up in DKA; sadly at the time I didn’t know enough about it to argue!
I can’t believe you are being treated so badly though, have none of these people ever heard of diabetic ketoacidosis?
So if the GP honestly thinks he can’t support your husband and issue prescriptions then he needs to refer him to someone who can. Urgently. If he won’t then you’ll have to make a complaint to the practice manager, something along the lines of withholding life-sustaining medication such as insulin is illegal.
In the meantime though, how high are your husband’s blood sugars at the moment? If they are reaching danger levels (20s) then get him to A&E without delay. Can you test for ketones? If these are more than a trace then definitely get him to A&E. Type 1 in adults tends to come on more slowly than in children, but you still can’t afford to mess about. Good luck

Thank you for your reply I have raised a complaint with the GP practice manager and now spoken to her. She is now trying to get the go ahead for my husband to see our lead nurse who is brilliant and has helped so much so far,so at least if we know we can call her it's a comfort. Apparently the insulin pen has now been authorized and at the pharmacy to collect tomorrow. His level has dropped down to 12 now so feel happier but obviously need a bit more advice on what to do when it goes high as we have only dealt with lows - and so far easily remedied by glucose sweets or shots.We do have keto monitor but not been shown how to use it ! Will get YouTube tutorial !

 

[nonethewiser]

Never ever heard that before where a gp surgery doesn't support patients with type 1.

Your both off to a bad start so hope things get better from here on.

 

[Inka]

Your husband can’t be left without insulin @casand2011 That’s ridiculous - and dangerous. Surely the consultant decided on the insulins and all the GP has to do is write a prescription for them? I’ve never heard of ‘not having the funding’. That sounds like rubbish, frankly.

Most GPs don’t know much about Type 1 but they still issue the prescriptions for insulin - as they should do. More than that, I’m pretty sure that they’re not allowed to withhold life-preserving medication.

 

[Eternal422]

@casand2011, so sorry to hear of your bad experience which must be so worrying and frustrating for you both.

My GP surgery don’t “look after” T1s as such, instead they are under the care of the local hospital diabetes team. However, the GP prescribes the insulin, pens, needles, etc., etc. based on what the hospital have said. The GP surgery also do the annual check (blood tests, weight, BP, foot nerve and pulse tests) so it is a shared care between the GP and the hospital team.

I would be talking with the hospital team to ask them to speak to your GP as it sounds like your GP isn’t understanding how the system should work? I don’t suppose you can see any letters from the hospital diabetes team in the NHS app under the GP health record that confirm the treatment plan?

I really hope you get things sorted soon, as definitely your husband will need insulin !

 

[saffron15]

@casand2011 welcome to the forum. I have occasional flares of uveitis ( inflammation in the eye] An optician diagnosed it couldn't get through to A and E so next morning with her letter went to GP who said ' I don't do eyes' and phoned hospital where I was seen. From then on I was able to self refer ie I phone eye casualty if I have a flare. Luckily usually every two years. I usually get my eye drops from hospital pharmacy but if I need more it is up to the GP to prescribe. I had a cataract op last October and at follow up appointment consultant increased drops I was taking from 3 x a day to every hour then reducing. She did not give me a new prescription and it was a nightmare getting it from the GP as they wouldn't prescribe without a letter from consultant. I had to phone her secretary. Luckily the surgery have put the eyedrops on my repeat prescription which allows me to tick if I need it.
I don't know what your hospital does but even if they provide a prescription on the day you visit further prescribed medication should be from your surgery. It's not fungal nail treatment it's lifesaving.
Good luck.

 

[everydayupsanddowns]

Gosh I’m so sorry about the way you have both been treated @casand2011

I have no idea what your GP surgery can mean by ‘no funding’ - and it’s obviously confusing the Exeter clinic too!

I see the hospital clinic once a year, and my GP surgery annually for blood checks, blood pressure, pulses etc etc, and also my GP surgery looks after all my repeat prescriptions.

 

[casand2011]

Thank for all the replies. Will call the diabetes nurse this morning as his levels still going high so think his insulin dose is too low. Just a question if anyone else has experienced this sudden high after last few weeks dealing with lows - how is it best to lower the level like now he is hungry for breakfast and injected prescribed dose but level still high - do you not eat ?? He was going to have scrambled eggs and salmon ?

 

[Robin]

Scrambled eggs and salmon should be fine to eat straight way, they aren’t carby and shouldn’t cause a huge rise, He may get a gentle rise later on in the morning, as the body will process some of the protein to glucose, in the absence of any carb to convert. If he doesn’t eat, he may see a rise anyway, as the liver will trickle out some glucose in a morning, to help the body gear up for the day. This is quite advanced stuff, though, so be guided by the diabetes nurse for the moment.

 

[Inka]

Thank for all the replies. Will call the diabetes nurse this morning as his levels still going high so think his insulin dose is too low. Just a question if anyone else has experienced this sudden high after last few weeks dealing with lows - how is it best to lower the level like now he is hungry for breakfast and injected prescribed dose but level still high - do you not eat ?? He was going to have scrambled eggs and salmon ?

It depends how high he is and how much insulin he’s taking. Really he should be having carbs with his meals to avoid the risk of hypos. Not eating his normal diet and make things harder to get his insulin right.

Definitely speak to his nurse, but before you phone jot down some instances of his high sugars with details about the times and what he’d eaten beforehand, etc.

 

[casand2011]

It depends how high he is and how much insulin he’s taking. Really he should be having carbs with his meals to avoid the risk of hypos. Not eating his normal diet and make things harder to get his insulin right.

Definitely speak to his nurse, but before you phone jot down some instances of his high sugars with details about the times and what he’d eaten beforehand, etc.

This is the frustrating thing - last week he was experiencing lots of low readings whilst eating as normal - following all the rules and advice and actually he has always eaten healthily anyway.So his alarm was going off 2/3 times during day and night signalling low sugars which he managed by quick glucose intake of jelly babies or dextrose sweets( which he hates !) Then yesterday levels shot up and took a long time to come down again - he was active Sunday(golfing) and yesterday valeting a car ‍♀️finding it all very confusing !!

 

[SB2015]

It is not a good start for either of you, being shunted from pillar to post.

In general people with T1 are under the care of the hospital at the start and once things settle may or may not be transferred back to GP care, but the GP gives prescriptions as per advice of the hospital team. I have never heard of your situation before -no consolation for you. It is likely to be a doctor who just doesn’t understand T1, seeing many people with T2 and all too often not having a clue of how T1 is managed. I am pleased that you have placed a complaint and following this up. You understandably want and need to have spare equipment.

Your husband has his insulin and that will last a good few days whilst this is sorted. His levels will vary by the amount of carbs he has eaten. The hospital team will often want to bring down levels slowly to allow the body to adjust to more normal levels. For this they often start people on a cautious insulin dose and then gradually change these. As @Inka suggested, gather some information and have these available when you next phone the clinic, and they can then use this in making gradual changes.

In the future your husband will be changing his own doses to match what he wants to eat at each meal. This is all based on the amount of carbs in each meal. Well worth starting to get your head round this. I knew nothing about it when diagnosed but I am now surprised at how much info is in my head about carb values - most common biscuits (attending meetings and not wanting to miss out)

There is a lot to learn at the start and it is a steep learning curve. I am pleased that you have found the forum. Tap into the vast experience on here and ask any questions that arise. Nothing is thought of as silly. Just ask.

 

[helli]

So his alarm was going off 2/3 times during day and night signalling low sugars which he managed by quick glucose intake of jelly babies or dextrose sweets

Sorry to read about the run around you and your husband are experiencing. It makes me angry that you are being denied a drug that keeps him alive because of some admin mess up.

I have highlighted this phrase because you mention your husband's alarms were going off but have not mentioned anything about checking with finger pricks.
Have you been told about compression lows? This is when pressure is applied to a sensor blocking the flow of interstitial fluid (what is measures by a CGM to calculate BG) so the CGM will report a false low.
You will also find that CGMs are designed to be most accurate at "normal" BG so can over and under report at extremes.
This is why it is very important to test highs and lows with finger prick before treating (unless we feel obvious hypo symptoms).

However, if your husband's current highs and previous lows were correct, it may be one of those "honeymoon affects". When we are first diagnosed with Type 1, we still are still producing some insulin and insulin treatment may give some of the insulin producing cells a "rest" allowing the sleeping/dying (but not quite dead) ones to temporarily come back to life. This has the annoying affect of unpredictability. This will eventually sort itself out as the cells finally die and you have a more consistent lack of insulin produced by your body. In the meantime, it is a case of managing the highs and lows.

 

[Fazza]

What a terrible start to your Diabetes Journey! Hope things get better and the Nurse (not the GP) get you sorted.

The Nurses that I see at my GP Surgery tell the Doctors what to prescribe me and they make the decision on what medication and what dose as the GP's are exactly that, General Practitioners who have to know a bit about a lot whereas the Nurses I see have had training on Diabetic treatment etc. so they are the experts I listen to and deal with.

 

[Inka]

Hopefully the OP’s husband is under the care of proper Diabetic Specialist Nurses at the hospital rather than the GP ‘expert’ nurses who know very little about Type 1 usually.

 

[casand2011]

What a terrible start to your Diabetes Journey! Hope things get better and the Nurse (not the GP) get you sorted.

The Nurses that I see at my GP Surgery tell the Doctors what to prescribe me and they make the decision on what medication and what dose as the GP's are exactly that, General Practitioners who have to know a bit about a lot whereas the Nurses I see have had training on Diabetic treatment etc. so they are the experts I listen to and deal with.

We have a super nurse who has steered the ship from the beginning,unfortunately now my husband has the diagnosis of Type 1 she can't help as the training to administer insulin is now beyond her training, although personally I have every confidence that she ie extremely capable. Apparently having spoken now to the practice manager there is not the funding to train her further. I find this quite incredible as there are a number of patients with type 1 in our area. The health centre had a massive refurbishment 2 years ago and now has several empty rooms for private consultations. I am so sad that some of that funding didn't go to the training up of the nurses team
Politics here I think! At the moment and after a lot of phone calls and visits to the pharmacy we now have most of what we need eith regards insulin,just waiting now for the additional short acting which again we had to chase up today ‍♀️ once that is in place though it will be on repeat prescription! Hoping we can start to get on with our new "normal" life! Great to have had everyone's feedback it is a big comfort to know we are not alone in this

 

[Sally71]

Glad things are getting sorted! I just want to make sure though - you’ll need someone to help you learn to do the injections and work out the doses, and there will probably have to be much tweaking of doses in the beginning. Then learn to carb count and adjust things yourselves. If the nice nurse at the GP surgery can’t do it is someone at the diabetes centre going to help with that? That’s usually what happens, type 1 is a bit of a specialist subject so you have hospital/specialist care to help you to learn to manage it, and the GP just signs the prescriptions off and sometimes does basic checks.

 

[David Wraith]

Know how you feel, I was diagnosed last weekend, spent Friday evening at A&E, all day Saturday on emergency ward and then back again Sunday am. Luckily there was a diabetic specialist nurse working on the Saturday who virtually spent most of the day sorting me out, got to say she was brilliant going through everything with me, at the minute I'm on slow release insulin, 10 at am and 8 at pm, then 6 units fast release before meals. My sugar level is still apparently high at average of 19.8. I think the system falls down with being passed back into the care of the GPs as the first 3 days under their care have been constant visits every day to try and get supplies of test strips, insulin etc as running out due to testing every time.Also been told by GP surgery to speak to local Diabetes specialist team but no appointments for at least 2 weeks. No explanation of what I should be doing, just keep taking insulin injections