How can we improve what happens at diagnosis?

[sasha1]

Hi All,

Following on from all the horror stories, regarding diagnois, treatment and education in hospital...and to a degree the aftercare we have received.

What could, should and can been done to improve the above?

Heidi
x🙂

 

[Northerner]

Hi Heidi,

I moved this to its own thread as I thought it would make an interesting new topic.

I think that doctors should be more willing to listen to people, particularly parents who think they have spotted the signs, and do the necessary tests. It must be 'better to be safe than sorry'! They could probably all do with a regular 'refresher' on diabetes too - with a test!

Also, in my case, they could have started me off on gving my own injections a couple of days at least before I left hospital, and it wouldn't have been such a rush and scary at the last minute, with no time for questions.

 

[Steff]

Heidi once again a very good thread and very intresting topic:
In my opinion i think every hospital should have there own specialist who is specifically trained to deal with diabetes there all to eager to push us out the door these days , we need care and proper care at that , The children of today who are being diagnosed with diabetes need a better understanding and they should realise that a parent needs help outside of the home they need professionals at hand , I would love they to become a day where every GP'S surgery or school had a DSN , but the lieklyhood of that is 0%

 

[NiVZ]

Hello,

I'd like to see Doctors more willing to listen to people who come in showing symptoms. Finger prick tests take seconds to do and I don't think it is exactly very expensive for them to do. Also most Lloyds pharmacys will now do finger prick tests.

I'd like to see swifter action taken by GP's once a finger prick test is done. I should have been shipped off to hospital much quicker than I was.

At hospital, I think they should have a much more structured education process covering:

How to test BG
How to inject
Education on food / carb counting or equivalent
How to treat hypo / hyper
Better psychological support (to help people come to terms with diagnosis)

And at least a visit from DSN, Dietician and Psychologist and possibly a tour of your local diabetic clinic (if there is one)

A buddy system, or some sort of peer group so newly diagnosed patients can get answers from people who have lived with diabetes for a longer period of time. It's also nice to meet other groups of diabetics to share info and experiences.

NiVZ

 

[Steff]

Hello,


A buddy system, or some sort of peer group so newly diagnosed patients can get answers from people who have lived with diabetes for a longer period of time. It's also nice to meet other groups of diabetics to share info and experiences.

NiVZ

thats a fantastic idea that would be so comforting for many

 

[sasha1]

Hi Heidi,

I moved this to its own thread as I thought it would make an interesting new topic.

I think that doctors should be more willing to listen to people, particularly parents who think they have spotted the signs, and do the necessary tests. It must be 'better to be safe than sorry'! They could probably all do with a regular 'refresher' on diabetes too - with a test!

Also, in my case, they could have started me off on gving my own injections a couple of days at least before I left hospital, and it wouldn't have been such a rush and scary at the last minute, with no time for questions.

Hi Northerner.

Thank you moving this question to a thread of its own...🙂

With my own experience..The GP and the Nurse at the surgery...Messed up big time..in there diagnosis of Nathan...a simple few second blood test...which could have been done weeks ago...could have prevented Nathan form being rushed to hospital with DKA...as for the nurse the minute Nathan's urine showed positive for sky high sugar and ketones...she should have called for a doctor immediately...not said " Goodbye and wait for the results".

I think personally every time a patient child or adult who walks in to a Doctors Appointment..should now be given a BG reading...regardless of what they are seeing him/her for.

Regarding Nathan in the hospital..the DSN told him quiet bluntly..." Right you are type 1 diabetic, you will require 4 injections of insulin a day for the rest of your life... if you do not do this you will become seriously ill and may
die".....At the time I hated her for approach regarding this..Nathan was 11 years old...and I though she was an absolute B****..sorry...In hindsight and after the initial shock sank in...I am grateful to her for the way she put it..because it was straight to the point..no messing..

The DSN did Nathan's first injection..after that he was on his own...I was shown and had to administer one injection..then Nathan was allowed home..

I certainly think a longer stay in hospital is needed, because of the sheer amount of information you have to take in..this cannot be done in a matter of a couple of days...We were'nt told if Nathan could or could'nt eat certain things...just what I would class as the basics..its a case of sink or swim...Its a hard and fast learning curve...Personally the day Nathan was discharged from Hospital..I remember thinking OMG..I am taking my son home..with a chronic condition...what the hell am I going to do..what if I get something terrible wrong....Sorry if that sound selfish..I just form a parents angle needed to be confident in what I was going to do..that however comes in time....🙂

One other thing I think should still be done is.....Up until quite recently, all newley diagnosed type 1 diabetics...were put in to a controlled hypo..in order for the person to pick up on the warning signs.

Heidi
🙂

 

[sasha1]

Heidi once again a very good thread and very intresting topic:
In my opinion i think every hospital should have there own specialist who is specifically trained to deal with diabetes there all to eager to push us out the door these days , we need care and proper care at that , The children of today who are being diagnosed with diabetes need a better understanding and they should realise that a parent needs help outside of the home they need professionals at hand , I would love they to become a day where every GP'S surgery or school had a DSN , but the lieklyhood of that is 0%

Hi Steff,

Absolutely agree with you here 110%...Even better if all specialists..were diabetic themselves...that way they would'nt just be diagnosing/treating out of a text book...they would understand all aspect...physical, mentally, emotionally..and so on.

Maybe the reality of a DSN in every school is'nt a remote possibilty...with the predicted cases of diabetes set to soar...

Heidi
x🙂

 

[sasha1]

Hi NiVZ..

Agree with you on all levels in your reply 110%.

The suggestion of a diabetes buddy...brilliant...I know if Nathan at the time of his diagnosis did'nt want one...I as a parent could have done with one.

Heidi
🙂

 

[Northerner]

It would be nice to have nore DSNs, but I think that the health service already know this, but are having trouble recruiting. Also, the ones we've got aren't always that great (as mentioned here recently), even if they have diabetes themselves - I'm thinking of the T2 DSN with an A1c of 10, her advice is probably worse than none at all!

Very good idea about the 'buddy' system. I've been toying with the idea of asking if they need any volunteers at the local hospital, for someone to go and chat to newly-diagnosed and maybew offer them some support after they leave hospital. And maybe even not those newly diagnosed - some 'veterans' could do with a bit of education and support too!🙂

 

[sasha1]

It would be nice to have nore DSNs, but I think that the health service already know this, but are having trouble recruiting. Also, the ones we've got aren't always that great (as mentioned here recently), even if they have diabetes themselves - I'm thinking of the T2 DSN with an A1c of 10, her advice is probably worse than none at all!


Hi Northerner....

Your quite right about the nurse, with her A1c of 10...she would be about as much use as a chocolate fireguard

Heidi
🙂

 

[sasha1]

Hi All,

Even if the buddy system for whatever reason could'nt be implemented. Would it not be possible for a phone support network..operating in a similar way to the forums..but would benefit those that did'nt have access to a computer?

Heidi
x🙂

 

[Becca]

Hi Heidi

I will send you the document that i am working on at the mo about miss diagnosis. It's a big file, it would be great to have your input into it. It's only in draft form and is confidential at the moment.

Thanks

 

[Becca]

Another point about the document that i am doing is that the awareness to parents (sorry to the other members that was the angle i was first looking at it from) A lot of the parents 'googled' symptoms and the advice from diabetic organisations and health websites do not say that this is a rapid onset (type 1) or that this means people should seek medical advice ASAP.

Try it, google symptoms such as extreme thirst, hunger, weight loss, frequent urination etc... You'll get that diabetes comes up but not that it could be an emergency. I googled with R on the Monday all her symptoms, it came back as type 1 but nothing to indicate it was an emergency. As i had put my faith in GPs and the relevant wesites weren't indicating a problem i went with them. R was 40.6 the previous day of diagnosis (Friday) on a blood test

 

[sasha1]

Hi Heidi

I will send you the document that i am working on at the mo about miss diagnosis. It's a big file, it would be great to have your input into it. It's only in draft form and is confidential at the moment.

Thanks

Hi Becca,

That would be great...I would love to help, and give you a little input..
Personally I think the whole system need over hauling..from GP's, DSN's, Diagnosis, Hospital treatment and continued care support etc....

Heidi
x🙂

 

[Becca]

I think having a DSN in every school would be great but sadly unachievable Many PCTs do not have the required amount 1:70 children and there workload is more than over 100 children. I think school nurses should be more educated. R's school nurse has never got involved (although her school are fab) but there are horror stories out there of school nurses advising to move children when hypo; not supporting the parents etc....

 

[sasha1]

I think having a DSN in every school would be great but sadly unachievable Many PCTs do not have the required amount 1:70 children and there workload is more than over 100 children. I think school nurses should be more educated. R's school nurse has never got involved (although her school are fab) but there are horror stories out there of school nurses advising to move children when hypo; not supporting the parents etc....

Hi Becca..

I managed to get Nathan's school to agree for the DSN to go in and see Nathan and co...About once every 4 weeks...Just to see how they were all doing, and discuss various aspects of diabetes with them etc...Kind of like a little therapy session..

As for school nurses...yes all schools should have one on the premises at all times...the school Nathan attends has to share the nurse with 6 other schools...😡....I have met the school nurse once...over the fact..that it was'nt in her job description to deal/help with any insulin doses or sharps etc...yet she was qualified to do a psychiatric assesment of Nathan to see if he would qualify for some form of school councilling.......I was not best impresssed..😡

Heidi
x🙂

 

[Becca]

I managed to get Nathan's school to agree for the DSN to go in and see Nathan and co...About once every 4 weeks...Just to see how they were all doing, and discuss various aspects of diabetes with them etc...Kind of like a little therapy session..

Wow! That is a good DSN 🙂 I know our DSN is very very hard pushed - she is brilliant but so overstretched, we are also out of area so it makes it hard for her to attend any meetings. She is coming in Sept to do training at the school though. It's our choice to go out of area for care (takes about 45mins to get to hospital and in another county) when we have our local 5 mins away but with poor support.

 

[sasha1]

Wow! That is a good DSN 🙂 I know our DSN is very very hard pushed - she is brilliant but so overstretched, we are also out of area so it makes it hard for her to attend any meetings. She is coming in Sept to do training at the school though. It's our choice to go out of area for care (takes about 45mins to get to hospital and in another county) when we have our local 5 mins away but with poor support.

She is a good DSN...and will do all she can to help...🙂...Again it boils down to there does'nt seem to be enough DSN's...now whether this is due to lack of resources, or nurses not wanting the positions??.
I am in the process at the moment of trying to get Nathan a new consultant though..because I feel he is being very negative with Nathan and a few other issues...no matter how hard Nathan or I try, there is something always wrong...It is destroying Nathan's confidence...and he fretts about every appointment.
I do know the consultant we have is shared between 5 hospitals....again it boils down to the area of support and continued care.

Heidi
x🙂

 

[sasha1]

Hopefully things should change for diabetic children with regards to schools, in the not to distant future.

Am I right in saying that DUK...and some diabetic children recently attended a meeting with some government politicians..voicing and raising there concerns and asking for changes??

Heidi
x🙂

 

[Becca]

There was the lobby at parliament: http://www.diabetes.org.uk/en/About_us/News_Landing_Page/We-matter/ which i attended - i didn't take Rose as i didn't want her to hear the things that was discussed with the MP about her old school.

Also, there was a private bill put forward in parliament about a school (health support) bill - addressing all medical conditions http://www.publications.parliament.uk/pa/cm200809/cmhansrd/cm090508/debtext/90508-0007.htm

This was successful to some degree as the government are now revising the Managing Medicines in school guidelines that so many heads, PCTs and LAs hide behind purely because they are able to do so.

Things are changing if slowly, there is a lot of work that goes on behind the scenes with some parents meeting in Parliament. This link http://www.childrenwithdiabetesuk.org/index.php?page=diabetes-at-school is a good one to see what is being done and by whom. Jacqui Double's speech that she gave in parliament is particulary good.

I, and a few other parents, are having a second meeting with Essex CC tomorrow to discuss diabetes care and support in schools to try and get protocols set in place. It is a long road but things are slowly changing..........