How can we improve what happens at diagnosis?

[sasha1]

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..........

Hi Becca..

Thank you for the Links I will give them a good study tomorrow..I do remember hearing or reading something about the above...But will be really interested in what both the lobbying and proposed bill say..🙂

Good luck with tomorrows meeting with Essex CC...please let me know how you get on....

Heidi
xx🙂

 

[sofaraway]

I think that improved support over the first few weeks at home could be improved. Also whilst in hospital more time for the ward staff to help teach people how to test blood sugars and how to use insulin pens.

I think that all people who don't obviously fit the type 1 or 2 profile to have further tests, we have so many who were oringinally mis-diagnosed, even if only for a couple of week, some alot longer. I can't believe that a c-peptide and antibody testing is more expensive than an ITU DKA stay. I think anyone who it isn't clear cut should have these tests to confirm the type.

 

[Twitchy]

Did you guys (apart from the solitary star DSN! ) get much on going support following the initial diagnosis & dismissal from hospital?

It sometimes feels to me that with gaps of anything from 4 - 10 months between appointments, things can go awry very quickly & I often feel a bit out on a limb not knowing who I should contact for help & advice...If I feel like this after 30yrs, how must the newly diagnosed feel? I can't help but wonder if being given a 24hr "help hotline" & maybe having weekly / fortnightly DSN meetings might smooth things over in the initial months? (I know I'd love that phone number...!)

 

[Northerner]

Did you guys (apart from the solitary star DSN! ) get much on going support following the initial diagnosis & dismissal from hospital?

It sometimes feels to me that with gaps of anything from 4 - 10 months between appointments, things can go awry very quickly & I often feel a bit out on a limb not knowing who I should contact for help & advice...If I feel like this after 30yrs, how must the newly diagnosed feel? I can't help but wonder if being given a 24hr "help hotline" & maybe having weekly / fortnightly DSN meetings might smooth things over in the initial months? (I know I'd love that phone number...!)

I did actually get the sort of care you would be hoping for. I got phone calls every day in the first week, two a week in the second week, then face-to-face with DSN - as much time as I wanted. Then consultant about a month afterwards, then education about 3 months afterwards where we went through carb-counting, ratios, corrections, all the possible complications with people from podiatry and retinopathy, stuff like alcohol, different insulin regimes, exercise, missing meals - really set me up well I think. I then had meetings with dietician and follow-ups with DSN.

This is why I have so much praise for my clinic. My HbA1c is good and my life relatively uninhibited by diabetes because of this. If they can do it for me, why not everyone?

 

[aymes]

Did you guys (apart from the solitary star DSN! ) get much on going support following the initial diagnosis & dismissal from hospital?

It sometimes feels to me that with gaps of anything from 4 - 10 months between appointments, things can go awry very quickly & I often feel a bit out on a limb not knowing who I should contact for help & advice...If I feel like this after 30yrs, how must the newly diagnosed feel? I can't help but wonder if being given a 24hr "help hotline" & maybe having weekly / fortnightly DSN meetings might smooth things over in the initial months? (I know I'd love that phone number...!)

Although my diagnosis was not good, once I was referred to the hospital the support I received from the DSN team there was first rate, and still is. I was sent home injecting in a few hours but a DSN called me at 10am every morning for the next two weeks to help me adjust my insulin doses and I had an appointment once a week for the first month or so. It then went to every six months (when I also have tests, see the consulatant etc) but there is always a number to call if you're concerned and they usually call back within a few hours (and a beeper to get straight through if you have ketones). they also do a drop in every morning where you can see someone with no appointment and I've never had too much difficulty getting an appointment if I need one.

I feel very lucky!

 

[Becca]

This brings back memories about ketones. One of the complaint letters i sent to R's old hospital was bout this and advice from diabetes care team. This is what we said:

The NICE guidelines July 2004 states: “Children and young people with type 1 diabetes and their families should be able to get advice from their diabetes care team 24 hours a day.” We do not get this. We have access to the diabetic team from Mon – Fri 9-5. This is of course if they are available, as mentioned above. (We do however; normally hear from them by the end of the day if we leave a message.) For after hours and at weekends we have to phone xxxxx Ward and speak to a doctor who is NOT part of the diabetes care team; is unfamiliar to R’s case and needs; has generally limited knowledge of child diabetes and does not understand the seriousness of some aspects of diabetes. For example, we phoned the doctor on xxxxx Ward in December 2006. R had been vomiting continuously and was not keeping any fluids or food down. Her blood glucose levels were 15mmol/L rising and she had large ketones present in her urine. The advice given was to wait, get more fluids in and not to worry about the ketones as we would get them too if we were sick! I was shocked as it is my understanding that a child with diabetes could get dehydrated extremely quickly if vomiting continuously and large ketones are a worry with high blood glucose levels as DKA could develop and that could be fatal! How this diagnosis could be made over the phone like that I do not know. (We have since discovered that this advice is at odds with the accepted evidence-based protocols used in UK hospitals in such situations.) I had to wait for the community nurses to come into work before getting their advice – we had to take R to casualty straight away if we couldn’t get fluids in – she was sick again after drinking so we took her to casualty. Whilst there, we saw another doctor that did not understand insulin’s and I had to explain what each one was and how they worked with Rs blood levels. This did not fill us with confidence. R was deemed to be “not hospital sick” by another doctor and after the sickness had eased and she had kept some food down we could go. I was still concerned as her blood levels were still in the mid teens and ketones were still large in her urine. No blood tests were done to check if she was developing acidosis. It would be interesting to know what protocols are in place for when children with diabetes phone xxxx Ward or/and arrive in casualty. What standards do they follow that is clear for all to follow? Do they have a flow chart? This is our out of hour’s service. We think it’s dreadful.

Shocking isn't it! Just reading tha back 3 years on fills me with dread and sends a shiver up my spine..... Dec 06 was only 11 months into diagnosis

 

[Proudspirit]

I would have just liked to be told what to do instead of being sent away with the gps words " you're fat and its all your fault" ringing in my ears.

I think that GP's shouldn't treat diabetics if they are penny pinching but we should have a diabetic clinic at the hospital so EVERYONE gets the same care no matter who your GP is.

Julie

PS would have loved a buddy

 

[Twitchy]

there is always a number to call if you're concerned and they usually call back within a few hours (and a beeper to get straight through if you have ketones). they also do a drop in every morning where you can see someone with no appointment and I've never had too much difficulty getting an appointment if I need one.

I feel very lucky!

Crikey! You are lucky! 🙂 This is what I'm dreading about going on to a pump next week...it feels like a whole new way of doing things & I'm terrified that I'll be left 'out in the cold on my own' to deal with it...and get it wrong!! Getting really stressed about it...If I carry on like this my hubby will lock me i the shed for some peace!

 

[sasha1]

I think that GP's shouldn't treat diabetics if they are penny pinching but we should have a diabetic clinic at the hospital so EVERYONE gets the same care no matter who your GP is.

Julie

PS would have loved a buddy[/quote]


Hi Julie...

Agree with you fully on this...Everyone should get the best and same care, regardless of where you live and your GP.

Surely this buddy scheme...could be implemented..as I said even if this were not possible...Diabetics/Parents/Carers...could offer there, help, support etc via phone.....I for one would more than willingly volunteer.

Heidi
x🙂