Lack of support from the health service

[badbrogs21]

i dont know about all of you but i be leave i am getting no support from the heath service, what do you think??

 

[catherinecherub]

Hi,

As you are a Type 1, I should ask other Type1's what you can expect.
Why do you think support is lacking and what do you expect that you do not get?

These are the 15 essentials.

http://www.diabetes.org.uk/Guide-to...sletter&utm_campaign=15+healthcare+essentials

 

[donnellysdogs]

It depends upon what the individual needs with of health are and also what the Patient does to help themselves with their own health.

I have written lots of posts here recently that I have had really good care from the NHS in the past 30+ years. I can't fault them. Thats why I do voluntary work on behalf of the 10,000 patients in our GP Practice, to give something back to our NHS.

What support do you think you need that you aren't getting? What concerns do you have?

 

[badbrogs21]

Hi,

As you are a Type 1, I should ask other Type1's what you can expect.
Why do you think support is lacking and what do you expect that you do not get?

These are the 15 essentials.

http://www.diabetes.org.uk/Guide-to-diabetes/Monitoring/15-healthcare-essentials/?utm_source=bronto&utm_medium=email&utm_term=15 healthcare essentials&utm_content=July 2014 e-newsletter&utm_campaign=15 healthcare essentials

i am a type 1 diabetic i was diagnosed 9 years ago at the age of 13. i am now 22 years of age and are already having problems with feet hurting lack of sensation burning etc and my eyes ant to good. my hb1c is at 13% and has been for years. i have rang and rang for appointments and i seem to have a word with the diabetes specialists and the dietitian . they try to sort my levels out but for some reason or other they pretend to help me for like a week or to and thats it when my bloods are still all over the place. sometimes i just feel like giving up . Then i get my self stressed and my bloods rise have fallen rapidly. i am finding it hard to get support with them. the last appointment i was asked if i wanted the pump i said yes this was 6 months ago. after several a attemps ringing to find what happening i finally get a date of my appointment which is on 5th of November for the insulin pump
this was agreed on the phone mind. they double checked my address and it was all fine they said they will send a letter through the post but no havent had anything yet.

 

[badbrogs21]

It depends upon what the individual needs with of health are and also what the Patient does to help themselves with their own health.

I have written lots of posts here recently that I have had really good care from the NHS in the past 30+ years. I can't fault them. Thats why I do voluntary work on behalf of the 10,000 patients in our GP Practice, to give something back to our NHS.

What support do you think you need that you aren't getting? What concerns do you have?

I need regular appointments not 3 monthly, i need help with getting my bloods on track, i need help with my diet, i need help with controlling my bloods around my work as i am a manager of a store and run around stressed all day.i need help to put on weight as i am up and down constantly. i need general support. i would like to meet up with some 1 and have a chat with them to let it all off my chest of how i am feeling as i feel down atm due to bg tests eg morning result was 15.1 last night was 21.6 evening was 3.2 lunch was 8.4 y morning 6.8 the night before 9.8 tea 16.3 lumch 12.8 morning 2.4

 

[noblehead]

Well that's shame, what support is you are lookin

I need regular appointments not 3 monthly, i need help with getting my bloods on track, i need help with my diet, i need help with controlling my bloods around my work as i am a manager of a store and run around stressed all day.i need help to put on weight as i am up and down constantly. i need general support. i would like to meet up with some 1 and have a chat with them to let it all off my chest of how i am feeling as i feel down atm due to bg tests eg morning result was 15.1 last night was 21.6 evening was 3.2 lunch was 8.4 y morning 6.8 the night before 9.8 tea 16.3 lumch 12.8 morning 2.4

You can get all that help through your diabetes team, surely if your being considered for a pump they must have been working with you closely at some point or at least asked you to go on a carb counting course such as DAFNE, as such a course is a pre-requisite for switching to an insulin pump.

Stress does effect bg levels but looking at your bg levels above it looks like your insulin doses are all out of sorts, start off by checking to see if your basal insulin is set at the right dose, the following is has a good explanation on how to do this:

http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

Also, the following is an on-line version of the DAFNE course, it covers all the basics and you should find it extremely useful:

http://www.bdec-e-learning.com/


One more thing, if your having trouble with your eyes (as in diabetic retinopathy) you need to be careful when reducing your overall bg control, as sudden tightening of control can make retinopathy worse, if this is the case with you then you should discuss any changes to your control with your HCP's.

 

[donnellysdogs]

I need regular appointments not 3 monthly, i need help with getting my bloods on track, i need help with my diet, i need help with controlling my bloods around my work as i am a manager of a store and run around stressed all day.i need help to put on weight as i am up and down constantly. i need general support. i would like to meet up with some 1 and have a chat with them to let it all off my chest of how i am feeling as i feel down atm due to bg tests eg morning result was 15.1 last night was 21.6 evening was 3.2 lunch was 8.4 y morning 6.8 the night before 9.8 tea 16.3 lumch 12.8 morning 2.4

Ok, so starting from basics, and I too was managing a large supermarket when I was taken in to hospital 30+ years ago, so I too also know of the stress. So...

Do you carb count your meals?
Do you take time to eat regularly and good healthy meals? (Or are they on the go meals and ready meals?)
Do you test 2 hours after a meal?

Do you have confidence at adjusting your doses yourself?
Do you know how to work out your correction doses properly if you are high to get you down to a 6bg?
Are you on a basal and bolus regime of mdi currently?


To be honest, you are lucky getting 3 monthly appointments. Most mdi patients will get 6 monthly or annual appointments, so it does seem to me that your health team are giving you extra support. You must take full responsibility for your management of your own diabetes, and not rely upon other NHS advisers, because on a pump you will get initial support, but it involves a lot of understanding and time and testing to manage it. For example if your levels raise on a pump, you must be able to determine whether you have a problem with your basal or bolus or whether it is a set problem or pump problem. Your hospital team will not be available at weekends or at nights if this occurs.....

So, do you know of and action all the above questions?

 

[badbrogs21]

Yes I do carb count
I don't eat regularly
I don't like veg
I don't test 2 hours after meal only before meals
I have good confidence in adjusting my doses
Yes I no how to get it down to that but where I work I do more exercise some days and less other days so my ratio of 1 to 7carb don't always work
I don't no what that means the mid question??

 

[Ambersilva]

MDI = Multiple Daily Injections.

Three monthly appointments is more than most of us get.

Some of us need to vary our insulin to carb ratio during the day.

 

[donnellysdogs]

Ok so for starters can you beginning testing 2 hours after meals. That will then tell you if you are giving yourself enough for your meals.... If you rise above 2.8ml after eating you aren't having enough insulin for your meals.. Which then gives you high levels etc for rest of time to contend with.

I know what a manager job is like, but believe me, you can find time to do a 30second test....

 

[badbrogs21]

Ye that's a great help so I think i just need to hit basics again and see how it goes I will try that thanks

 

[donnellysdogs]

Ye that's a great help so I think i just need to hit basics again and see how it goes I will try that thanks

Please try, you can get amazing advice from ere regarding adjusting doses etc. It sounds like you do need to get back to basics and post meal testing will be a start.

 

[Daibell]

Hi. Yes, the HBa1C is way too high and potentially harmful. Are you checking that your Basal dose is right? Aim for around 5 - 7 mmol when you awake. I suspect your Bolus is too low? Yes, you must check 2 hours after a meal. Testing only before a meal tells you very little. If you are not already low-carbing then do get the carbs down to below, say, 150 gm/day and use the meter to guide you. You will get the best diet advice on this forum rather, sadly, than the NHS as many dieticians haven't a clue about diabetes diet. Tresiba is a less common insulin although fully approved. Unless there was a specific reason for that type then you might want to discuss trying a swap to Lantus or Levemir with the Docs? Sometimes people find one insulin better than another for them.

 

[Hooked]

I'd urge you to ask the DSN about doing the DAFNE course. It's of huge benefit to not only educating yourself more on how everything effects blood glucose and how you can deal with it, but meeting fellow diabetics and discussing it together was great. Also ask if the DSN is aware of any diabetic support groups in your area.
Good luck with the new pump, it's a long oul wait, but the difference it can make is fantastic.

 

[anna29]

I need regular appointments not 3 monthly, i need help with getting my bloods on track, i need help with my diet, i need help with controlling my bloods around my work as i am a manager of a store and run around stressed all day.i need help to put on weight as i am up and down constantly. i need general support. i would like to meet up with some 1 and have a chat with them to let it all off my chest of how i am feeling as i feel down atm due to bg tests eg morning result was 15.1 last night was 21.6 evening was 3.2 lunch was 8.4 y morning 6.8 the night before 9.8 tea 16.3 lumch 12.8 morning 2.4

If you are with high risk evaluation/assessed - you should be fast tracked .
Like podiatry team with your feet , eye team with your eyes .
Request to see a diabetes dietician worth a shot ?

At your eye and feet screen tests - do let them know
all of your concerns .
Any real issues/concerns can be fast tracked should you
warrant/need this .
Some fast track appts are booked as double appts slots .
This will give extra time to discuss all issues/concerns .
Chance to talk about diet,stress,medical history etc etc .

I am fast tracked with podiatry team (every 4 weeks) as super high risk
with foot deformities (charcot foot shape/risks)
Have motor ataxia and tiny limbs and muscles .
Also have orthotic handmade footwear via the hospital .
The system will fast track patients who warrant fast tracking .

Being job lot of coeliac/diverticulitis/gastritis of stomach plus diabetic
see diabetes team plus head diabetes dietician 3-4 weekly .
Am complex case - so we break it all down into manageable chunks !
Can only nibble food - snack sized portions .
My nervous system and auto immune damage is the cause of this
plus other things .
Mitochondrial disease plus Tcell damage too for example .

Try writing a list of your concerns and difficulties .
Take along with you and discuss in full .
Ask for an action plan way forward too .
If unsure of things - take along a friend or family member .
They can help as support and prompt things maybe forgotten
or lost along the way during the appointments .

 

[badbrogs21]

Hi. Yes, the HBa1C is way too high and potentially harmful. Are you checking that your Basal dose is right? Aim for around 5 - 7 mmol when you awake. I suspect your Bolus is too low? Yes, you must check 2 hours after a meal. Testing only before a meal tells you very little. If you are not already low-carbing then do get the carbs down to below, say, 150 gm/day and use the meter to guide you. You will get the best diet advice on this forum rather, sadly, than the NHS as many dieticians haven't a clue about diabetes diet. Tresiba is a less common insulin although fully approved. Unless there was a specific reason for that type then you might want to discuss trying a swap to Lantus or Levemir with the Docs? Sometimes people find one insulin better than another for them.

helllo i had a reaction to levemir and ive had lantus both was having complications so had to swap, im going on the pump now i think in the start of next year, i take 44 units of tresiba mostly at night. i dont understand why you have to have a low carb diet tho ?? i dont have a low carb diet is there a reason for this

 

[badbrogs21]

If you are with high risk evaluation/assessed - you should be fast tracked .
Like podiatry team with your feet , eye team with your eyes .
Request to see a diabetes dietician worth a shot ?

At your eye and feet screen tests - do let them know
all of your concerns .
Any real issues/concerns can be fast tracked should you
warrant/need this .
Some fast track appts are booked as double appts slots .
This will give extra time to discuss all issues/concerns .
Chance to talk about diet,stress,medical history etc etc .

I am fast tracked with podiatry team (every 4 weeks) as super high risk
with foot deformities (charcot foot shape/risks)
Have motor ataxia and tiny limbs and muscles .
Also have orthotic handmade footwear via the hospital .
The system will fast track patients who warrant fast tracking .

Being job lot of coeliac/diverticulitis/gastritis of stomach plus diabetic
see diabetes team plus head diabetes dietician 3-4 weekly .
Am complex case - so we break it all down into manageable chunks !
Can only nibble food - snack sized portions .
My nervous system and auto immune damage is the cause of this
plus other things .
Mitochondrial disease plus Tcell damage too for example .

Try writing a list of your concerns and difficulties .
Take along with you and discuss in full .
Ask for an action plan way forward too .
If unsure of things - take along a friend or family member .
They can help as support and prompt things maybe forgotten
or lost along the way during the appointments .

im sorry to here about your issues i do think i will have to make an appointment in the moring for a dietitian appointment. do you no if they will write a plan for me ??

 

[anna29]

im sorry to here about your issues i do think i will have to make an appointment in the moring for a dietitian appointment. do you no if they will write a plan for me ??

Am sure if you were to ask this - they would have to apply some
thought and structure to provide this to you .
Try taking a list of your concerns and issues along with you .
They usually like this approach and do see it as positive
and proactive .
It shows you are considering things in a structured way .
Most are keen to provide support when using this approach n style .

Do let us know how things go if you do ask for this .
Its always great to hear how things transpire .

 

[badbrogs21]

Am sure if you were to ask this - they would have to apply some
thought and structure to provide this to you .
Try taking a list of your concerns and issues along with you .
They usually like this approach and do see it as positive
and proactive .
It shows you are considering things in a structured way .
Most are keen to provide support when using this approach n style .

Do let us know how things go if you do ask for this .
Its always great to hear how things transpire .

yes i will do seem like a plan thanks

 

[badbrogs21]

Hi,

As you are a Type 1, I should ask other Type1's what you can expect.
Why do you think support is lacking and what do you expect that you do not get?

These are the 15 essentials.

http://www.diabetes.org.uk/Guide-to-diabetes/Monitoring/15-healthcare-essentials/?utm_source=bronto&utm_medium=email&utm_term=15 healthcare essentials&utm_content=July 2014 e-newsletter&utm_campaign=15 healthcare essentials

i have ordered the 15 essentials pack thanks