At what point should a diabetes team step in to prevent problems?

Status
Not open for further replies.
S

sasha1

Well-Known Member
Relationship to Diabetes
Parent
Hi All...

Since reading Bev's thread last night about the young boy..who is suffering terrible complications..due to neglect and education..of his team, parents to a degree, and may be himself not been educated in the correct way.

The question of at what point should a diabetes health team step in to prevent complications arising? Should child services have been informed and have helped and supported his parents and him etc? Is this down to a shortage of funding for DSN's, educational facilities, GP's etc?

Now I know that Nathan's team have 15yr olds..attending the clinic appointment..with parents...But choose to see the consultant in private, without mums and dads. Personally I would not feel comfortable with Nathan doing this..although I do realise..that at some point he will..but not at 15.

Heidi
xx🙂
 
The key factor in children's medical treatment and consent is "Gillick competency", which followed a case in 1980s where a mother tried to prevent her daughters obtaining medical information and / or prescriptions for contraceptives when aged under 16 years - actually a more complicated issue than treating diabetes, due to under age sex aspect. However, it does show up an example of a situation where an under 16 might not be completely honest with the health professional if their parent were present.
 
i think it goes without saying that all of us on here think that SOMEONE should have intervened with him sooner. it's so tragic.

clearly his parents have not got a great deal of understanding (or, dare i say it, they just don't care).

what worries me though is that surely there must have been some kind of build up to how he is now, it's not like it happened over a space of a few days is it? (correct me if i'm wrong!) so surely somewhere along the line someone should have done something.

heidi...i started seeing the consultants etc alone when i was about 17/18 i think. when i was about 15 i think the understand was that i went in with my mum/dad, but i would do the majority of the discussions, but my parentals still had the chance to ask/comment etc.
 
shiv said:
i think it goes without saying that all of us on here think that SOMEONE should have intervened with him sooner. it's so tragic.

clearly his parents have not got a great deal of understanding (or, dare i say it, they just don't care).

what worries me though is that surely there must have been some kind of build up to how he is now, it's not like it happened over a space of a few days is it? (correct me if i'm wrong!) so surely somewhere along the line someone should have done something.

heidi...i started seeing the consultants etc alone when i was about 17/18 i think. when i was about 15 i think the understand was that i went in with my mum/dad, but i would do the majority of the discussions, but my parentals still had the chance to ask/comment etc.
Click to expand...


Hi Shiv..

I whole heart agree with you here. Especially the build up into the tragic chain of complications that have occurred...

Thank you also for your reply on seeing the consultant...🙂..Its what I had in my mind for Nathan...that he when 15..would have the strong hold when it came to discussion..and I would still have the chance to ask questions etc.

Heidi
xx🙂
 
The problem may be as simple as he couldn't get to appointments - Bev mentioned, in "a hard lesson" thread, that his mother was in a wheelchair, and unless she had a car, transport might have been the problem. But, agreed, someone in a position of responsibility should have stepped in much earlier.
 
cant agree more with what has already been said that what happened to the boy should of been prevented way before it got to where he is now
 
Copepod said:
The key factor in children's medical treatment and consent is "Gillick competency", which followed a case in 1980s where a mother tried to prevent her daughters obtaining medical information and / or prescriptions for contraceptives when aged under 16 years - actually a more complicated issue than treating diabetes, due to under age sex aspect. However, it does show up an example of a situation where an under 16 might not be completely honest with the health professional if their parent were present.
Click to expand...

Hi Copepod..

I remember the Gillick case very well..and yes it does show up a perfect example of where an under 16 might not be truthful if a parent was present.

Heidi
xx🙂
 
Copepod said:
The problem may be as simple as he couldn't get to appointments - Bev mentioned, in "a hard lesson" thread, that his mother was in a wheelchair, and unless she had a car, transport might have been the problem. But, agreed, someone in a position of responsibility should have stepped in much earlier.
Click to expand...


That may be the case...but surely the DSN should have come out to visit him...I know from my own experience with Nathan, when we could'nt attend a hospital appointment...The DSN..came out to see him..and brought her portable HbAc1 machine so that test could still be done..Also as far as I am aware Hospital can and will provide transport for appointments.

Heidi
xx🙂
 
definitely...i think, even if he realises it or not (sorry, i don't know much about nathan!!), that it's good for you to be there when he's that age...he can do all the asking/answering of questions, but you're still there to get the understanding from the dr.

i've always been considered 'mature' for my age (even when i was 12, 13, 14 etc) so i think my parents knew i could take care of my condition. my mum is the biggest worrier in the world though bless her (despite being a trained nurse of over 30 years!!) so i think she appreciated coming to the appointments when i was that bit older.

i'm trying to imagine it from my mum's p.o.v....i think if i had a diabetic child i would want to go to the appointments regardless of age (LOL - you wait now, i'll have a diabetic baby who will hate me for this!!) due to the fact that i like to know what is going on.

my partner comes with me now to my appointments, because i want and need him to have a very good understanding not only of diabetes but ME and diabetes and the way it affects me.

sorry...didn't mean to ramble!!
 
shiv said:
definitely...i think, even if he realises it or not (sorry, i don't know much about nathan!!), that it's good for you to be there when he's that age...he can do all the asking/answering of questions, but you're still there to get the understanding from the dr.

i've always been considered 'mature' for my age (even when i was 12, 13, 14 etc) so i think my parents knew i could take care of my condition. my mum is the biggest worrier in the world though bless her (despite being a trained nurse of over 30 years!!) so i think she appreciated coming to the appointments when i was that bit older.

i'm trying to imagine it from my mum's p.o.v....i think if i had a diabetic child i would want to go to the appointments regardless of age (LOL - you wait now, i'll have a diabetic baby who will hate me for this!!) due to the fact that i like to know what is going on.

my partner comes with me now to my appointments, because i want and need him to have a very good understanding not only of diabetes but ME and diabetes and the way it affects me.

sorry...didn't mean to ramble!!
Click to expand...


Hi Shiv....

Hey your not rambling at all.....🙂

Nathan...mmmm....His alter ego is Kevin the Teenager.....lol..And must say he is'nt as mature as some...although boys tend to be late in that department...He has been Type 1 since the age of 11...he has a good understanding of the conditon..although chooses to ignore the bits he does'nt want to know about...but when he is asked questions...knows a damn site more than, he would like us to think he does...and that is a true credit to him....:D

Heidi
xx🙂
 
Copepod said:
The problem may be as simple as he couldn't get to appointments - Bev mentioned, in "a hard lesson" thread, that his mother was in a wheelchair, and unless she had a car, transport might have been the problem. But, agreed, someone in a position of responsibility should have stepped in much earlier.
Click to expand...

Unfortunatly and I know from experience there is no-one out there to help with that sort of thing when the mother is ill, and when social services were called all they wanted to do was put the kid on the 'at risk' register but still offered no help whatsoever and they wonder why so many kids go off the rails in families with disabled or ill parents
 
I think we need to be careful about discussing this and try to talk generally rather than about this specific child, as we don't know all the information.

I think that in cases where there are children who are having very poor control I think there probably needs to be a joint approach including social services, the GP, DSN, school nurse etc.

I remember seeing a Tv programme a few years ago about teens/young adults with diabetes, and one boy who was around 14-15 would be in hospital with DKA every couple of weeks, because he deliberatly didn't inject and then once in hospital would pull the cannula out so he couldn't get fluids and insulin. There was alot more emotional issues going on with this kid and seemed they needed to be addresed before he would get decent control of his diabetes.

When I was around 16 I started going into see the consultant on my own. previously when i went in with my mum I wouldn't say a word and she would do all the talking. I found that when I went on my own I was able to ask questions and be more involved. What I think would be a good approach would be that if teeneager could maybe go in on their own for the first part of the appointment and then the parents go in for the rest of the appointment so all would be involved but they would have a chance to speak on their own.
 
I agree with sofaraway - it's a tragic case, but we really don't what led up to it. I can see many ways were kids can fall through the cracks, and I think what's needed is ways to make sure that doesn't happen. I think it's difficult though - being a teenager is hard enough without dealing with diabetes as well. There are so many different factors that go into diabetes control, and if it comes down to it, if someone isn't interested in taking care of themselves, it's very difficult to make them do it.

I also think it pays to remember that diabetes care varies considerably. We've all heard stories of excellent clinics and horror clinics, and if someone isn't getting the support from the diabetic clinic, I can understand how it could be easy to have poor control without understanding how bad it is.

I moved from the childrens' clinic to the adult clinic when I was 16. I remember it being really scary, and not really knowing how to speak to the doctor! At Addenbrooke's they have an intermediate clinic for people between 16 and 21, so they can make the transition gradually, and still have parents involved etc. I wish I'd been here when it happened to me!
 
I think this is a difficult call as some 15 year olds a re more responsible than others, and some parents are better or worse.

I know one family where the teenagers would not go to the doctor with their mother because she kept butting in, so they would ask me to accompany them. The rule was I'd only but in if I had something relevent to add or thoguht something had been missed. Happily forthe children, they all got the treatment they needed, un happily for the mother the practice refused to treat her unless a social worker or other professional was present.

Families vary. My grown up son if he is worried takes his dad, it's a boy thing, but not all families have that trust and not all care.

Each case has to be taken on its own merits.
 
Status
Not open for further replies.
Back
Top