Have you had delayed ambulance care for diabetes?

[lynn hurford]

Hi my name is lynn, I'm type 1 diabetic for 6 years now.
Last year I suffered a severe DKA (diabetic ketone acidosis) I have never suffered one before so really did not understand what was wrong with me, thought I caught a bug.
on the DKA day it took a ambulance 2 hours to get to me and a further 2 hours to get me to the hospitial to which I spent 4 days in itu and 4 days in ward.
The reason of the delay for the ambulance is the way calls are now managed. The ambulance service has done away with the 8 min call and now runs under a red, amber, green call out system.
Basically the ambulance will get to you in 8 mines approx. if you have stopped breathing, heart attack etc. the Amber state basically allows an ambulance to turn up when one is free!
WHAT! I hear you say. YiP! Us diabetics have been tossed aside by the medical profession we have come to rely on in an emergency.
The algorithm the 999 service uses for a diabetic emergency does not apply to diabetics whether the person suffers from hypos, hypers or DKAs.

I am trying to campaign to get this algorithm changed and desperately need your help.
I need your my name for my petition and perhaps if you have had a bad emergency care experience you may want to share it.

My story and case is now being handled by the welsh office / parliament, I have on-board helping my case Diabetes uk and together we can make a change for you for when you need it most.
Thank you for your time.
lynn x

https://petition.parliament.uk/petitions/188800/sponsors/9rtLReKImARUIWFFFZW5

 

[grovesy]

Welcome.

 

[Copepod]

Welcome to the forum, lynn hurford. Good to hear that you are dealing with the organisations who make decisions about ambulance deployment. Please keep us informed.

 

[spiritfree]

Hi my name is lynn, I'm type 1 diabetic for 6 years now.
Last year I suffered a severe DKA (diabetic ketone acidosis) I have never suffered one before so really did not understand what was wrong with me, thought I caught a bug.
on the DKA day it took a ambulance 2 hours to get to me and a further 2 hours to get me to the hospitial to which I spent 4 days in itu and 4 days in ward.
The reason of the delay for the ambulance is the way calls are now managed. The ambulance service has done away with the 8 min call and now runs under a red, amber, green call out system.
Basically the ambulance will get to you in 8 mines approx. if you have stopped breathing, heart attack etc. the Amber state basically allows an ambulance to turn up when one is free!
WHAT! I hear you say. YiP! Us diabetics have been tossed aside by the medical profession we have come to rely on in an emergency.
The algorithm the 999 service uses for a diabetic emergency does not apply to diabetics whether the person suffers from hypos, hypers or DKAs.

I am trying to campaign to get this algorithm changed and desperately need your help.
I need your my name for my petition and perhaps if you have had a bad emergency care experience you may want to share it.

My story and case is now being handled by the welsh office / parliament, I have on-board helping my case Diabetes uk and together we can make a change for you for when you need it most.
Thank you for your time.
lynn x

Hoe can we sign your petition?

 

[Owen]

Hi my name is lynn, I'm type 1 diabetic for 6 years now.
Last year I suffered a severe DKA (diabetic ketone acidosis) I have never suffered one before so really did not understand what was wrong with me, thought I caught a bug.
on the DKA day it took a ambulance 2 hours to get to me and a further 2 hours to get me to the hospitial to which I spent 4 days in itu and 4 days in ward.
The reason of the delay for the ambulance is the way calls are now managed. The ambulance service has done away with the 8 min call and now runs under a red, amber, green call out system.
Basically the ambulance will get to you in 8 mines approx. if you have stopped breathing, heart attack etc. the Amber state basically allows an ambulance to turn up when one is free!
WHAT! I hear you say. YiP! Us diabetics have been tossed aside by the medical profession we have come to rely on in an emergency.
The algorithm the 999 service uses for a diabetic emergency does not apply to diabetics whether the person suffers from hypos, hypers or DKAs.

I am trying to campaign to get this algorithm changed and desperately need your help.
I need your my name for my petition and perhaps if you have had a bad emergency care experience you may want to share it.

My story and case is now being handled by the welsh office / parliament, I have on-board helping my case Diabetes uk and together we can make a change for you for when you need it most.
Thank you for your time.
lynn x

Firstly each area has its own classification. EMAS have used Red 1, for every glycaemic emergency that I have attended. So it might be worth investigating further. RTC's are not automatically designated Red, as they may only have minor injuries.
It mostly depends on what you report over the phone. If you ring up and say your blood sugar is high, then unless accompanied by other symptoms it will not automatically become a red call. Again if you call and say that you feel dizzy, the call handler has to try and ascertain if this is urgent.

My advice is to be completely open when explaining your symptoms. Don't over or under exaggerate anything.

Not every call can get the most urgent of attendances, it really is a difficult job for the despatcher to get this right from a telephone call. Especially when NHS pathways are also allocating resources and taking away front line capacity.

Sadly your case is not that uncommon. If one of your symptoms of missed or not linked then quite possibly a red call will not be allocated. But and a very important but. If things get worse call back 999 and they will upgrade your call. 111 in these situations is not the correct method.

 

[Owen]

Hi my name is lynn, I'm type 1 diabetic for 6 years now.
Last year I suffered a severe DKA (diabetic ketone acidosis) I have never suffered one before so really did not understand what was wrong with me, thought I caught a bug.
on the DKA day it took a ambulance 2 hours to get to me and a further 2 hours to get me to the hospitial to which I spent 4 days in itu and 4 days in ward.
The reason of the delay for the ambulance is the way calls are now managed. The ambulance service has done away with the 8 min call and now runs under a red, amber, green call out system.
Basically the ambulance will get to you in 8 mines approx. if you have stopped breathing, heart attack etc. the Amber state basically allows an ambulance to turn up when one is free!
WHAT! I hear you say. YiP! Us diabetics have been tossed aside by the medical profession we have come to rely on in an emergency.
The algorithm the 999 service uses for a diabetic emergency does not apply to diabetics whether the person suffers from hypos, hypers or DKAs.

I am trying to campaign to get this algorithm changed and desperately need your help.
I need your my name for my petition and perhaps if you have had a bad emergency care experience you may want to share it.

My story and case is now being handled by the welsh office / parliament, I have on-board helping my case Diabetes uk and together we can make a change for you for when you need it most.
Thank you for your time.
lynn x

Just a small observation, diabetes is not Ann emergency in itself.
Each of the separate situations are different.

Hypoglycemia if identified through symptoms including level of conciseness would be upgraded accordingly.
Hyperglycaemia without breathing difficulties or chest pain would not be identified as a red call.

 

[lynn hurford]

Firstly each area has its own classification. EMAS have used Red 1, for every glycaemic emergency that I have attended. So it might be worth investigating further. RTC's are not automatically designated Red, as they may only have minor injuries.
It mostly depends on what you report over the phone. If you ring up and say your blood sugar is high, then unless accompanied by other symptoms it will not automatically become a red call. Again if you call and say that you feel dizzy, the call handler has to try and ascertain if this is urgent.

My advice is to be completely open when explaining your symptoms. Don't over or under exaggerate anything.

Not every call can get the most urgent of attendances, it really is a difficult job for the despatcher to get this right from a telephone call. Especially when NHS pathways are also allocating resources and taking away front line capacity.

Sadly your case is not that uncommon. If one of your symptoms of missed or not linked then quite possibly a red call will not be allocated. But and a very important but. If things get worse call back 999 and they will upgrade your call. 111 in these situations is not the correct method.

 

[lynn hurford]

Welcome to the forum, lynn hurford. Good to hear that you are dealing with the organisations who make decisions about ambulance deployment. Please keep us informed.

Thank you

 

[lynn hurford]

Firstly each area has its own classification. EMAS have used Red 1, for every glycaemic emergency that I have attended. So it might be worth investigating further. RTC's are not automatically designated Red, as they may only have minor injuries.
It mostly depends on what you report over the phone. If you ring up and say your blood sugar is high, then unless accompanied by other symptoms it will not automatically become a red call. Again if you call and say that you feel dizzy, the call handler has to try and ascertain if this is urgent.

My advice is to be completely open when explaining your symptoms. Don't over or under exaggerate anything.

Not every call can get the most urgent of attendances, it really is a difficult job for the despatcher to get this right from a telephone call. Especially when NHS pathways are also allocating resources and taking away front line capacity.

Sadly your case is not that uncommon. If one of your symptoms of missed or not linked then quite possibly a red call will not be allocated. But and a very important but. If things get worse call back 999 and they will upgrade your call. 111 in these situations is not the correct method.

Hi Owen, thank you for your info.
My case was different as my gp telephoned 999 and told them I was having a DKA. An hour passed and my children came home from school to find me in a coma. They also telephoned 999 unaware my go had also. A further hour then went by when rrv turned up. That was 2 hours. Then it took a further 2 hours for an ambulance to arrive. By this time my body was in a coma and hypothermic, when I arrived at hospital they worked on me for 50 mins before being sent to ITU for 4 days then 4 further days in a ward.
I live in between 2 major hospitals both only under 4 miles from my home. Unfortunately the ambulances were waiting to off load patients onto a&e that day and there was a back log

 

[Owen]

Hi Owen, thank you for your info.
My case was different as my gp telephoned 999 and told them I was having a DKA. An hour passed and my children came home from school to find me in a coma. They also telephoned 999 unaware my go had also. A further hour then went by when rrv turned up. That was 2 hours. Then it took a further 2 hours for an ambulance to arrive. By this time my body was in a coma and hypothermic, when I arrived at hospital they worked on me for 50 mins before being sent to ITU for 4 days then 4 further days in a ward.
I live in between 2 major hospitals both only under 4 miles from my home. Unfortunately the ambulances were waiting to off load patients onto a&e that day and there was a back log

Sadly, this should never have happened. The problem is that the system is so overloaded. GP's often use the ambulance service through frustration, rather than come out. The public call an ambulance in stead of their GP through frustration. The public attend A&E through frustration. All this removes resources. Ambulances no longer get priority at A&E, so they can be there hours for a ten minute handover. As of 1st March A&E are allowed to turn people away who don't have a genuine reason for care. They will just call 999, another resource wasted. A lot of ambulances are crewed by technicians, they are less likely to discharge at scene through fear of getting it wrong, so another person off to A&E that might just need some GP assistance. Paramedics are in short supply and often prioritised to Red 1. Some CCG's actively use paramedics as a back up for the crews and will try and hold them back. I have utilised fire and police when needed to get someone to ED. Not everyone will see the urgency and will have the conviction to get help. I will even ask openly for helimed, I have never been turned down. But if I used the support inappropriately, then that will soon change.

The problem is much deeper than protocols. It is due to underfunding, inappropriate use, human error, mismanagement, the list is endless.

I really feel sorry for your situation, but it needs some major changes beyond our ability to fix this broken system.

 

[lynn hurford]

Just a small observation, diabetes is not Ann emergency in itself.
Each of the separate situations are different.

Hypoglycemia if identified through symptoms including level of conciseness would be upgraded accordingly.
Hyperglycaemia without breathing difficulties or chest pain would not be identified as a red call.

Forgot to mention above, the Welsh ambulance service have admitted failure to me on the way my case was handled. If I can change even a small piece of how they manage 999 calls for diabetics then I've started a ball rolling. My ex husband is a paramedic and knows how the calls are managed and there is not an algorithm for diabeticsi

Sadly, this should never have happened. The problem is that the system is so overloaded. GP's often use the ambulance service through frustration, rather than come out. The public call an ambulance in stead of their GP through frustration. The public attend A&E through frustration. All this removes resources. Ambulances no longer get priority at A&E, so they can be there hours for a ten minute handover. As of 1st March A&E are allowed to turn people away who don't have a genuine reason for care. They will just call 999, another resource wasted. A lot of ambulances are crewed by technicians, they are less likely to discharge at scene through fear of getting it wrong, so another person off to A&E that might just need some GP assistance. Paramedics are in short supply and often prioritised to Red 1. Some CCG's actively use paramedics as a back up for the crews and will try and hold them back. I have utilised fire and police when needed to get someone to ED. Not everyone will see the urgency and will have the conviction to get help. I will even ask openly for helimed, I have never been turned down. But if I used the support inappropriately, then that will soon change.

The problem is much deeper than protocols. It is due to underfunding, inappropriate use, human error, mismanagement, the list is endless.

I really feel sorry for your situation, but it needs some major changes beyond our ability to fix this broken system.

agree whole heartily with everything you said Owen, bed management is critical in hospitals. It's this that can also overload the system also.
More needs to be done at a&e departments, when the paramedics do off load the patients they then have to restock and sterilze the ambulance for the next call, this is far to time consuming.
But yes the average hand over here in Swansea is supposed to be 15 mins but it's anywhere between 60 to 150 mins depending on a&e demand.
They need to have another a&e minor injuries dept so practitioner nurses can deal with these.

 

[lynn hurford]

Welcome.

Thank you

 

[lynn hurford]

I

Welcome to the forum, lynn hurford. Good to hear that you are dealing with the organisations who make decisions about ambulance deployment. Please keep us informed.

will do, today the reporters are highlighting my story, will post link on here when it's published

 

[Pumper_Sue]

Good luck with your quest and I hope you manage to achieve what you want from the situation.

 

[Northerner]

I fell very ill a couple of years ago - some sort of virus. It started on Boxing Day and continued through the New Year, so just about the worst time to get ill. I was unable to keep down any food or drink - literally even a sip of water would result in me losing more liquid than I could consume 😱 I struggled on for a while, giving myself small corrections of insulin, but reached a point where I knew I was in danger - I was severely dehydrated, I lost over a stone in weight, I was terrified of overcorrecting because I would not have been able to keep any hypo treatment down, so my BG was between 12-20 most of the time. My ketones went up to 6.4 and so I called 999. I live alone and knew that if I fell unconscious no-one would find me. I explained everything to the call handler who passed me along to the ambulance service nurse. She told me to contact my DSN. The DSN could not have told me anything that I didn't already know and wasn't already attempting to do for myself, but they were insistent that was my only option, so I contacted her. She suggested seeing my GP! I managed to get an emergency appointment and the GP prescribed me some anti-sickness pills. I queued at the pharmacy next door, which was packed, and when it finally came to my turn the pharmacist told me that the prescribed medication had supply problems and they didn't have any 😱 I immediately went back into the surgery and was fortunate to catch the GP I'd just seen as she was on her way out. She took me back into the room and gave me an anti-sickness injection.

The injection did seem to help a little and I was able to sip water, sometimes without bringing it back up. I also managed to nibble on a few crisps and this helped to reduce my ketones (mostly dietary ketones, due to starvation). I managed to get some of the pills a couple of days later and gradually recovered over the following week to 10 days. I had not eaten properly for 4 weeks and not drunk anything for about three weeks - something I didn't think possible. When I told my consultant about it a couple of months later he was horrified at the fact they had not sent an ambulance, given all my circumstances

This was about 5 years after I was diagnosed, and thanks to the knowledge I had gained over those years I had some idea of what was happening and how to keep myself alive, although there was a point - when the pharmacist told me that there were no pills - when I didn't just feel like I was dying, I actually wanted to die, I was so desperate Without that knowledge I probably wouldn't be writing this now I knew what DKA was like, because I had it when I was diagnosed in 2008 - on that occasion I had called 999 and got a fast response car inside 5 minutes and an ambulance 5 minutes later. Move the calendar on a few years and I got nothing

 

[Lucy Honeychurch]

That's shocking

 

[Owen]

You have hit the problem on the head. Diabetes on its own is not a priority. This can be correct but also inhibiting.

The priorities are;
Airway-is the airway clear. More complex than this first appears. If it is not (unlikely in most glycaemic emergencies) then everything else is irrelevant.
Breathing-rate is normally 12-20 breaths per minute. If you're airway is blocked then you are not breathing. If you are breathing to fast (common in both low and high blood sugar problems), then oxygen is needed along with ventilation depending on the severity. Effort-how much effort is needed effects the morbidity of the situation. Depth-shallow or deep?. Colour of the person, are they unusually white or blue. Saturation, how much oxygen is being utilised.
Circulation-pulse, colour, haemorrhage, pressure, strength and rythum. Capillary refill.

Only after all these checks do we get to blood glucose. There is no point in correcting blood glucose to a patient that is clinically dead. This has to be sorted first.

You cannot put sweets and sugary drinks into someone that has an occluded airway.

So diabetes is not always the priority. But then needs urgent attention once the basics are sorted.

The only pre-hospital remedies are, glucose in liquid or IV format or glucagon. Glucagon is not always effective dependent on the current metabolic status of the individual.

Therefore quite often urgent patient transfer is the only available option.

This was failed in this case. The GP if they had attended would have had more scope clinically, but less experience. Perhaps this is an area for change. The treatment for DKA and HSS is clinically beyond the scope of paramedics and needs urgent transfer, or a doctor on scene trained and experienced to take the correct measures.

Thankfully most people get the urgent transfer required. In your case you did not, this is unforgivable. I would personally retire if I were the person responsible for not getting you the correct treatment.

I have recently attended a hypoglycemia case that turned out to be DKA, before transfer, several steps needed to be sorted first, respiratory arrest, ventilation and oxygen. All completed in less than a minute. BM checked then packaged and transferred. This is how it should happen.

 

[Owen]

I fell very ill a couple of years ago - some sort of virus. It started on Boxing Day and continued through the New Year, so just about the worst time to get ill. I was unable to keep down any food or drink - literally even a sip of water would result in me losing more liquid than I could consume 😱 I struggled on for a while, giving myself small corrections of insulin, but reached a point where I knew I was in danger - I was severely dehydrated, I lost over a stone in weight, I was terrified of overcorrecting because I would not have been able to keep any hypo treatment down, so my BG was between 12-20 most of the time. My ketones went up to 6.4 and so I called 999. I live alone and knew that if I fell unconscious no-one would find me. I explained everything to the call handler who passed me along to the ambulance service nurse. She told me to contact my DSN. The DSN could not have told me anything that I didn't already know and wasn't already attempting to do for myself, but they were insistent that was my only option, so I contacted her. She suggested seeing my GP! I managed to get an emergency appointment and the GP prescribed me some anti-sickness pills. I queued at the pharmacy next door, which was packed, and when it finally came to my turn the pharmacist told me that the prescribed medication had supply problems and they didn't have any 😱 I immediately went back into the surgery and was fortunate to catch the GP I'd just seen as she was on her way out. She took me back into the room and gave me an anti-sickness injection.

The injection did seem to help a little and I was able to sip water, sometimes without bringing it back up. I also managed to nibble on a few crisps and this helped to reduce my ketones (mostly dietary ketones, due to starvation). I managed to get some of the pills a couple of days later and gradually recovered over the following week to 10 days. I had not eaten properly for 4 weeks and not drunk anything for about three weeks - something I didn't think possible. When I told my consultant about it a couple of months later he was horrified at the fact they had not sent an ambulance, given all my circumstances

This was about 5 years after I was diagnosed, and thanks to the knowledge I had gained over those years I had some idea of what was happening and how to keep myself alive, although there was a point - when the pharmacist told me that there were no pills - when I didn't just feel like I was dying, I actually wanted to die, I was so desperate Without that knowledge I probably wouldn't be writing this now I knew what DKA was like, because I had it when I was diagnosed in 2008 - on that occasion I had called 999 and got a fast response car inside 5 minutes and an ambulance 5 minutes later. Move the calendar on a few years and I got nothing

But in all of this story you knew you were ill way before the need for an ambulance. You needed treatment and this was ignored.
Perhaps we as individuals need to be more proactive, I don't really know. But at the moment it but to the point that you needed an ambulance, you were already very ill. Hyperglycaemia builds up hypoglycemia is sudden.

 

[Lucy Honeychurch]

Luckily I live very close to my local hospital and took myself to A&E after I put my symptoms into the NHS health checker and it suggested I had T1, my breathing was very odd, the advice was that I needed immediate medical attention so my partner drove me straight there. I shudder to think what might have happened if I'd ignored this advice. Wait times in my area for ambulances are very high, a chap I know was hit by a car and waited 45 minutes for an ambulance

 

[Owen]

Luckily I live very close to my local hospital and took myself to A&E after I put my symptoms into the NHS health checker and it suggested I had T1, my breathing was very odd, the advice was that I needed immediate medical attention so my partner drove me straight there. I shudder to think what might have happened if I'd ignored this advice. Wait times in my area for ambulances are very high, a chap I know was hit by a car and waited 45 minutes for an ambulance

This is the correct thing to do. If you had waited for an ambulance, the only option in the end would be patient transfer. This is still the national guidelines for DKA and HSS.