Transition to Adult Clinic

[Tina63]

My son had his clinic appointment yesterday. It took him all day to give me any information, but the one thing to come out of it is that he is being moved to the adult clinic from his next appointment. I understand it will be a 'transition' appointment, old team and new team together, then I presume it will be just the new team from there on??? It means he moves to a different hospital too.

HbA1c had risen again, 11.5, up from 11.0 4 weeks ago, yet it seems they are going to leave it 2-3 months before seeing him again. 2 months ago there was all this talk of admitting him when he hit 12.5, it came down so he 'got away with it', yet now its rising again and they are happy to leave him longer before seeing him. I just don't get it. Sorry, it's a pain having to go, but at least I am reassured they are keeping a close eye on him and can intervene if things get seriously out of hand (if they are not so already)!

Now I feel they are washing their hands of him. Is it just easier to pass him on as they are not making any serious headway with him? It is doing my head in, scaring me that I guess once in the adult services I, as a parent, will lose all rights to have his DSN to talk to and copies of all letters sent to us, so we will be completely out of the loop. I am also scared that from what I gather on here, under adults, you are only seen 6 monthly at best. Do they ever see you more often if things are out of control like this? If he has risen 0.5 in 4 weeks, how much damage could be done in 6 months? That scares me witless.

He still only ever increases his doses if they tell him to (which they have incidentally told him to up his M3 and Lantus by 2u from today) so again that could go 6 months between changes.

I also worry, do adult teams have a good grasp of type 1? They must see vastly more type 2's, and I just wonder if they really are very knowledgeable about type 1, given the lack of knowledge by our GP and from most practice nurses from what I gather. I like to think that in a specialist setting they ought to be tuned in, but are they? Please excuse my scepticism, just a bit panicked at the moment!

Thank you for the rant, feel a bit better now!

 

[Twitchy]

Hi Tina. I guess given his age it was on the cards but totally understand your disappointment. An awful lot depends on the individual doc - took me some years to stumble across him but my current endo is a star - doesn't judge, knows how challenging it can be & is very supportive. Unfortunately the way things are unless your son wants to control his diabetes, no one can do it for him, whichever clinic he's at. As for the time interval, I'm seen 6 monthly but have the DSN's number if needed between appts & have seen the nurses between doc appts before...but they won't chase, it's up to you to access help jf you recognise that you need it. Not sure what to suggest I'm afraid...I remember my dad expressing the same fears about me & my sister...lets hope there's a star at the adult clinic who can get through to him!! (((((hug!))))))

 

[Tina63]

Thanks for your reassuring words Twitchy. At least you have made it to adulthood, so hopefully he will too!!

He has said a little more, the consultant took the line of 'Well you are an intelligent young man and in your own time you will get to grips with it' type of talk. She actually criticised the doctor last month telling him to do a week of intense testing. She said as he is actively avoiding testing at all, asking for a week of full-on testing was bound to backfire. He agreed, saying he put it off and off, and never got round to it.

She asked him to wait a couple of days before upping his Lantus, suggesting he does a couple of morning tests on the level he is on, then upping it by 2u to see what a difference that makes. Being the softie I am, I reverted to going up to him this morning, offering him breakfast, then passing his meter (which he had left in the kitchen after clinic) and suggested he tested whilst I sorted his food. I left him here in good faith to do the school run, came home and checked his meter - NO TEST!! Now why did that surprise me I wonder? I really thought he would. Then I had a second thought, did he take his Lantus last night. Checked his pen levels (I am monitoring them) and NO, NO LANTUS LAST NIGHT. GRRRRR! So of course he wouldn't test as the reading would be high! Oh well, maybe tomorrow......

So on and on it goes. He keeps 'getting away with it' so I just don't see any hope of a breakthrough now. The only hope I am hanging onto is someone said on here maybe a year ago that they only saw the light when at an adult clinic and told by a much older diabetic that they wished they had looked after themselves as a youngster given the complications they were now living with, that something like that happens, or he sees an amputee and that scares the pants off him. That, or he really will have a crisis one day when things take a serious downward turn. I don't understand how he can sometimes go 24 hours with no insulin on board anyway. Most people on here seem to spiral out of control very quickly, or just by getting a dose slightly wrong. I do sometimes wonder if he could have been misdiagnosed as he does seem able to skip insulin for long periods, but he did have the antibodies and the other test they do, so has had a positive T1DM diagnosis. Weird eh?

So on to fight another day, and just await with interest the follow-up letter and appointment for transition. One thing I am also wondering is that we have already had the appointment through for his annual MOT in December, but at the Childrens Hospital. I wonder whether that will go ahead or we cancel it. Well I guess we can ask at this transition appointment. I will go along to that, even if I only sit in the waiting room. I would like to learn where exactly it is as none of us have ever been to that hospital before. Good old Sat Nav will come in handy!

 

[Dizzydi]

Hi Tina, I've been reading all your threads re your son - hopefully as said before once he goes into the adult clinic something will click in him and make him realize / understand the importance of keeping on top of things.

Fingers crossed he does - however I think you also need to be prepared for him to keep fighting the diabetes for a while - I dont mean this in a nasty way - but I think he is a long way of accepting his condition still.

Is there anyway you could talk to the consultant at the adult clinic after your son has seen then to express your concerns? I think the adult clinic will keep a very close eye on him while he is struggling - until he gets to grips and becomes more stable. If you cannot see the consultant - write a letter and take it with you to give to them.

I hope your son accepts his D very soon and gives you a little less to worry about xxx

 

[Tina63]

Thanks Di. I will certainly make sure I have his new DSN's number and won't be afraid to use that. Even if they can't 'discuss' him with me (though can they whilst he is still 17? I don't know) I can tell them what is going on. And I do think a letter to his new consultant is a good idea. Again, it just makes sure they are fully in the picture. There is little more I can do but sit back and just hope he starts taking it seriously soon.

Thanks.
Tina

 

[DeusXM]

The only hope I am hanging onto is someone said on here maybe a year ago that they only saw the light when at an adult clinic and told by a much older diabetic that they wished they had looked after themselves as a youngster given the complications they were now living with, that something like that happens, or he sees an amputee and that scares the pants off him.

I was one of those incredibly boring children who never really rebelled against managing their diabetes - I dealt with it but only with a vague conception. Then when I was in a clinic at 20 I saw the following, all sat in a row:

• A man with no foot
• A man with a huge gut who could barely walk properly and dribbled a lot
• A woman in a wheelchair strapped up to an oxygen mask - at one point her mask slipped and she didn't even have the strength to put it back, a nurse had to leap the counter and put it back for her.
• A bloke in his late 20s who was stacked with muscle, clearly did a lot of cool stuff like snowboarding etc and basically looked to be in better shape than anyone I really knew

I've no idea what the last guy's A1C was, but I'm betting it was good. I made a conscious decision to be that guy - still haven't achieved it as I'm quite lazy, but I'm far nearer to that, than flapping my arms in a chair unable to breathe. Shock works. But ultimately, it's up to your son if he wants to grow up or not.

As a side note, I talk to quite a few newly dxed people in their teens and early 20s on a fairly regular basis. The one thing that really gets a guy's attention is telling him that A1Cs over 7 mean he will have, er, undercarriage issues within five years and no pill or pump will be able to fix that once it's done. You son probably won't want to hear that from his mother but if there's one reason I bother to look after myself, it's this!

 

[trophywench]

Tina I can'r say anything to help your son, I'm sorry. BUT

Yes adult clinics do know about T1 !!!! Who do you think does the carb-counting training we all rave about? or the pump training? LOL

Who do you think is 'in charge' of the Med Students doing their D training at Teaching Hospitals? Who teaches the Student Nurses who will be on the Wards about D ? Who gets involved in any Research done there? Which hospital is it, someone on here might already go there and be able to give you more info !

Yes it is true there are more T2s than T1s, but MOST T2s never get to see a consultant unless they have complications or something soecial or different. The vast bulk of them only see their GPs ( we can argue til the cows come home that this is terrible, but that's not for this thread) and surgery nurses, never get to see an expert.

T1s do get to see all these people and yes, they can and do help. But of course - not if you refuse to be helped.

Normally you will be seen 3 monthly where there are probs, even more often if required. Whenever my consultant appts are, even if I don't have anything I need to ask/tell her about - if I don't contact my DSN about halfway - well she rings or texts me. So I may as well tell her I'm OK or whatever. But then of course, I appreciate she has other fish to fry .....

I'm very sure the childrens' will tell the adult clinic exactly what's what with your son. The change could be the making of him, because they will treat him as an adult and he'll be asked for his opinion rather than be told what to do. He may respond to that - you never know, change of personalities could be the best thing.