Hi guys,

don't know if anyone has a medical back ground or anything but please read on and any advice would be appreciated.

My partners sister has diabetes, I don't know a thing about it but apparently it's the worst sort.

She's had it years and is now 38 she's had a number of "turns" over the years which from reading about it could be down to her diet or insulin or various factors.

More recently her partner has had to call ambulances on several occasions and as a result her condition was looked into and she saw a specialist who told her the insulin she was using was completely outdated and changed it and had her start a diary to monitor the condition. She doesn't seem to have improved and just today she has been hospitalized after collapsing after her partner left for work only being discovered when he returned. She was in a+e for approx 1 hour and they just sent her home after she had something to eat!!!

Question is, what can we do?

I don't think she is receiving adequate care or supervision, I've looked at the nhs complaints procedure which seems to be for use after things have gone wrong but what I want to do is kick them up the arse and get my sister in-law sorted out.

If you've got this far thanks for reading and any suggestions would be gratefully received

cheers, Bri

Sounds like she's not looking after herself properly. She probably had a hypo from letting her blood sugar drop too much, and if she has come round after eating then she probably didnt need to go to A and E (only if she was unconcious).

I know it sounds a bit harsh without knowing everything that went on but she needs to take charge herself – look at Diabetes UK for a local support group, and get her to see her GP to arrange an appointment with a specialist nurse.

I don't think she is receiving adequate care or supervision

Why do you think that? Do you know the reason for the collapses? is she eating properly and monitoring her blood sugar properly? Diabetes is incurable but treatable.

Question is, what can we do?

Nothing apart from gaining some insight into the illness and supporting your partners sister.

What O said but please feel free to have a good old gripe at the NHS without any insight into the illness.

What they said.

Diabetes is a tricky illness, and requires good advice and treatment, but most importantly, it requires the person with diabetes to take a great deal of responsibility for themselves.

Sounds like you are getting annoyed and looking for someone to blame and/or shout at without knowing the full facts…

People do have problems with insulin dosage and diet, and have different tolerances to changes in medication. People, being people, sometimes don't look after themselves as well as they could, which isn't really an option when you are diabetic.

It's a really tough disease to live with, have you talked to her about how she is managing?

as above really. Balancing diabetes is like finding the magic position on a singlespeed. It take loads of effort and doesn't last forever.

Diet is the key. If she's suffering severe hypos with increasing regularity then quite simply she doesn't have enough sugar to maintain her through the day. Perhaps insulin doses are too strong? it take s a lot of fiddling to get it right and it can all be thrown off by one changed circumstance. Exercise is a big one that I keep meeting at the moment. People decide to exercise more than normal and suddenly their need for sugar increases, but they are not eating to match it. Hypos during the day suggest this needs to be addressed she is clearly out of balance.

She will most likely have been assigned a diabetic nurse, who can help advise and monitor the situation, and if you or her partner have any questions, this should be your first port of call.

I once knew a guy who called his diabetes "a lifestyle choice no one would choose". It sounded stupid at the time but I see his point now. the truth is you can live a normal healthy life with diabetes, but you have to be very controlled and strict to enable this.

As an aside, many Diabetics round our way are being issued with Hypostop (glucogel) and Glucagon injections. Perhaps suggesting this if it is not already in place might help. Failing that, get some energy gels and suggest she carries them all the time, they taste a damn sight nicer than the muck the ambulance crews will give her!

Oh, I'm an insulin dependant diabetic BTW, so know how much of a pain in the arse it is to look after yourself.

And my NHS care has been ace.

Thanks for the replies,

are you speaking from experience i.e. do you or a family member suffer with diabetes?

Obviously I cannot say if she is looking after herself properly and that is what I'm trying to get to the bottom of, is it simply a case of, eat when your blood sugar dictates or you will have a hypo?

I know since starting this diary she checks her blood sugar very often and it seems to fluctuate wildly but as stated I don't know if she takes care of herself properly.

Is it difficult to manage the symptoms of diabetes or is it just a case of do as the doctors say and you'll be fine?

cheers, Bri

Mrs GrahamS here: I have diabetes and am also a diabetes doctor. If your sister-in-law is struggling and wants to email any specific problems I'd be happy to help if I can. (contact details in profile).

I would also second the above advice to use Diabetes Uk. They are excellent!!

My experience is that diabetes is difficult after 38 yrs, and there may be good reasons she's struggling. Old insulins would suggest either she's maybe been out of touch, or unwilling to try newer treatments, so there may be a few issues ongoing.

It's nice of you to want to help though, but I'm afraid diabetes hangs on self management.

Sorry posted that reply after a lot of the other replies above

a specialist who told her the insulin she was using was completely outdated

Methods of delivering insulin have changed but as I understand it from dozens of conferences there has not been a single improvement in the actual performance of drugs. What has changed is that new developments have made it easier to control insulin levels in the body but ultimately the person using the oldest methods and properly monitoring their levels will do far better than someone using the newest who is not monitoring properly. Patient input in treating diabetes is probably more important than any other disease excluding such things as alcoholism drug addiction and obesity. On one conference the guest speaker was young lad who was both diabetic and a junior triathlon champion who competed at world level. He constantly monitored his blood sugar and thus was able to control it very well. The majority of patients though don't seem to do a very good job of it.

I recall being taught about diabetes when doing my nurse training 20 odd years ago and thinking 'jesus, that's something I really wouldn't like to live with'…

I think, and I'm sure you diabetic folk will laugh at my lack of insight, that it is one of the hardest diseases to live with; it must be like walking a tightrope everyday. I'm sure you get really really good at it, but it must be so hard. I have the greatest sympathy for those diagnosed young; I see a number of teenage girls, some repeat offenders, who end up on my ITU after ignoring/pretending/just not getting the idea that they've got this for life and they have to get to grips with it, and do it now.

I'm a pretty tough old bird, especially at work, but one girl who was losing her sight, in chronic pain with neuropathy, left me in tears; I woke her up after a suicide attempt and she told me how shit her life was.

She was 19.

Shitty disease.

What O said but please feel free to have a good old gripe at the NHS without any insight into the illness.

Sounds like you are getting annoyed and looking for someone to blame and/or shout at without knowing the full facts…

Guys, that is why I'm posting here , to gain some insight, experience and facts from people who live with this, I don't want to gripe or shout I just want to know why this is happening if it's just because she's not managing herself properly, fine I'll try and address that.

I don't think she is receiving adequate care or supervision, I've looked at the nhs complaints procedure which seems to be for use after things have gone wrong but what I want to do is kick them up the arse and get my sister in-law sorted out.

Actually, that looks like trying to blame someone rather than expecting your sister to take responsibility for managing her condition herself. That, IMHO is where you should start trying to help, not by kicking off at the ombudsman

try looking here for more relevant info than you're likely to find on a mountain bike chat forum

Also, it may be Type 2 diabetes, there's some info on the linked you might want to look at

The people I know who've gotten into trouble with their diabetes (often, rather than the occasional misfortune or oversight on food or medication) have done so simply because they've gotten bored with the rigor needed in terms of eating and medicating. They get resentful of it all and let things go wrong almost as a way of having time off from being continually observant.

If she's managed to stay on top of the condition in the past then maybe your partner's sister simply needs cheering up or motivating. If thats not the case then maybe there is a clash between her work/circumstances/ lifestyle and the action she needs to take to manage her condition

As above – treatment for type 1 diabetes (i.e. insulin) has barely changed over the years, only the method of administration. If she's a type II then there are newer therapies, but the most effective has (and probably always will be) diet and weight loss.

Of the diabetics I know some watch their glucose like a hawk and never have any problems, others don't worry about it too much and frequently go a bit nuts (hyper/hypo). No offence to you or her but it's probably her own fault.

BTW I'm a scientist researching diabetes and recurrent hypoglycemia in type I diabetes patients with type I diabetes 8)

I don't have diabetes, but I am a diabetes doctor.

I would back up what has been said, particularly the pointers to the Tayside website and Diabetes UK as well as the usefulness of Diabetes Specialist Nurses although I suspect that your partner's sister is aware of most of this.

We were an early adopter of the DAFNE patient education course for Type 1 diabetes which as some of you will be aware is all about getting patients to self manage. Newer insulins do have different characteristics which may be helpful and different ways of delivering insulin particularly pens and pumps have become available over the last 20 years as have newer agents for Type 2, but they are all tools for the job rather than being some form of instant or magical solution by themselves.

There are a number of reasons why patients' blood sugar levels can start to fluctuate more and they become more prone to low blood sugar events or hypos but if your sister has seen a specialist then he or she should be well aware of those reasons and have checked them out.

Finally, I agree that diagnosis by mountain bike forum is not appropriate and although you yourself can get background knowledge and hopefully a better understanding from the pointers provided, only specialists who are directly involved with your sister's care can properly advise her.

in type I diabetes patients with type I diabetes

At least you didn't say "diabetics"

Have to say, there's just a lack of good information here, so time for some kneejerk reactions… if she's been diabetic for years she shouldn't be having problems like this suddenly and tbh 9/10 times, the patient is the cause of the problem. I know if I have a serious hypo, it's either because I'm suffering some other illness or because I've screwed up. If she's had a change in her condition she must have sought advice?

(And yes I will say diabetics, I'm entitled)

"She was in a+e for approx 1 hour and they just sent her home after she had something to eat!!!"

Well, that's the treatment for everything other than very severe hypos. Basically, if your conscious, you get filled with sugar. In fact usually you do it yourself. This is definately at the risk of causing offence, but I can't help but think that if she was fit to leave an hour later, especially if all the hospital did was fill her with sugar- obviously I don't have all the facts- but my Official Singletrack Kneejerk Reaction is that this was a waste of an ambulance trip, and could have been dealt with at home…If not by her- hypos can cause infantilism and loss of judgement so sometimes even when the patient ought to be physically capable of treating it, they're not mentally able – then by the husband. Did the hospital do anything he couldn't have done?

So, again at the risk of causing offence, you maybe should consider the possibility that the cause of the problem isn't relaly diabetes at all, and the the hypos are a symptom of another problem… Could be attention seeking, could be self-harming. Hopefully not.

All in all can't argue with teh comments about diagnosis by internet but this to me jumps out. My own experience of NHS diabetic cover is just fantastic tbh.

Guys, that is why I'm posting here , to gain some insight, experience and facts from people who live with this, I don't want to gripe or shout I just want to know why this is happening if it's just because she's not managing herself properly, fine I'll try and address that.

Then this bit was unnecessary.

I don't think she is receiving adequate care or supervision, I've looked at the nhs complaints procedure which seems to be for use after things have gone wrong but what I want to do is kick them up the arse and get my sister in-law sorted out.

Right.

The A+E will help her out when she's having a hypo which is what they did. She needs to bring these problems of more regular hypos to the attention of her GP or diabetic Nurse, they can't help if they're not informed and that's her job.

Give her support where you can some get very annoyed, frustrated and even embarrassed about their condition.

Another Dr involved heavily in providing Diabetes care and who spent a few years trying to improve services across half a county. A slightly different perspective perhaps…

Yes – by far the most common issue we see in people with poorly controlled type 1 or 2 (or even type 1 1/2 … don't ask… ) is failure of the patient to develop "an internalised locus of health control" – in other words to understand that only by them taking control and responsibility for lifestyle factors, insulin adjustment etc etc will things improve. Checking that your partner's sister has made that step is priority number 1. Without that everyone is doomed to fail.

However:
1) Approaches such as DAFNE can be evry helpful and there is now better evidence that they can help achieve tighter control. But they are not universally available.
2) There is beginning to be better evidence for Insulin pumps.
3) Diabetes Specialist Nurses (DSNs) are often stretched very thinly, and not always targetted at the patients who need them most.
4) Sometimes people with type 1 diabetes escape without top-up education, or adjustement/modernisation of their threapy for years – and this is particularly likely in my experience when patients are attending hospital clinics where they see a different junior Dr each attendance, there may not be a proper database system, and there are tight time constraints.
5) Non- Diabetes hospital teams in A&E and as inpatients often really mismanage Diabetes, and do not identify where change/education is needed.

So in answer to the OP – complaining at this stage is clearly totally out of order, but the first step is for your relative to join DUK and to get an idea of what she should be repsonsible for, and what her expectations of her local diabetes services should be.

I watched this programme once about blind people I think – don't recall the rest of the programme but the thing that stood out was a girl of 16 or 17. She'd had diabetes for a few years and never bothered to look after herself, not caring about her blood sugar much in a kind of teenage self-destructive way.

Then one day her sight faded and that was that – blind.

I'm a diabetic and most of the time well controlled, but sometimes it goes a bit haywire. i can get to be a right drag, but you just have to get on with it. Simple things like a spontaneous pint after work can be a PITA if you haven't got all your gear with you. Other people, can be a challenge as well. As a diabetic you know full well that skipping meals is a no – no, but peer pressure can get to you, especially when everyone wants to move onto the nect pub, but you have to eat something.

Anyway, as everyone else has said, it really is something that the individual has to take charge of. No amount of NHS or otherwise provided care can help if the person who has it doesn't take control themselves.

teambpl – Member
Hi guys,

don't know if anyone has a medical back ground or anything but please read on and any advice would be appreciated.

My partners sister has diabetes, I don't know a thing about it but apparently it's the worst sort. I assume you mean Type 1 diabetes?

She's had it years and is now 38 she's had a number of "turns" over the years which from reading about it could be down to her diet or insulin or various factors.

More recently her partner has had to call ambulances on several occasions and as a result her condition was looked into and she saw a specialist who told her the insulin she was using was completely outdated and changed it and had her start a diary to monitor the condition. She doesn't seem to have improved and just today she has been hospitalized after collapsing after her partner left for work only being discovered when he returned. She was in a+e for approx 1 hour and they just sent her home after she had something to eat!!! Hypo treatment in a conscious patient = food/glucose.

Question is, what can we do?

I don't think she is receiving adequate care or supervision, I've looked at the nhs complaints procedure which seems to be for use after things have gone wrong but what I want to do is kick them up the arse and get my sister in-law sorted out. Care or supervision from whom? Clinical staff or partner?

If you've got this far thanks for reading and any suggestions would be gratefully received

cheers, Bri

Hi Bri, I'm a diabetes nurse specialist working with kids aged 0 to 18. Overall do you know how well your sisters diabetes is controlled, in a numerical value (HbA1c test)?

I'd agree with Dr Stoat above who has suggested that your sisters partner receives appropriate education to help her manage her condition – common example in general public is that all carbohydrates are "bad" for diabetics, so is you sister following some extreme low carb diet, when it is actually the balance of insulin vs carb intake vs exercise (plus other variables, illness, stress, hormonal inluences etc) and does her partner not know what constitutes a healthy diet for a person with diabetes?

As Dr S mentions above there is increasing evidence supporting use of insulin pump therapy (Continuous subcutaneous insulin infusion or CSII therapy) which some diabetes centres can offer to people with T1DM as a further way of controlling their condition.

Your sister probably doesn't see this as being the problem you do, and it may not even cause her as much stress as it does to you. there is always the possibility that she is in a lot more control than you or others give her credit for(!) so it may not be a physical change in her diabetes management that she needs, but possibly psychological support to allow her to maximise her skills. This is how a lot of teenagers choose to manage their diabetes, in a manner that means they are not well cntrolled enough to cause too many hypos, but are not running high enough to cause excessive symptoms of high blood glucose or a significant risk of diabetic ketoacidosis. Such young people often need the appropriate education & support to get them to realign their own targets & beliefs through appropriate emotional support.

Your sister probably doesn't see this as being the problem you do, and it may not even cause her as much stress as it does to you. there is always the possibility that she is in a lot more control than you or others give her credit for(!) so it may not be a physical change in her diabetes management that she needs, but possibly psychological support to allow her to maximise her skills.

A very good and well put across point.

forgive me if i am wrong here – I am not diabetic but an ex of mine was so i'm fairly well informed.

had her start a diary to monitor the condition.

the diary should allow her to record what foods make her go high and what are more stable by paying proper attention to the diary she should be able to know how to dose insulin after particular foods. – for example cabs turn to sugar so big pasta meals need more insulin etc – this should allow her with time to stay steady which is the first aim.

girl i was with was pretty reckless; drinking spirits by the bottle and then passing out etc. ran her sugars really quite high – fear of going low – with no thought for the long term. she is still a friend of mine and it is heartbreaking to see the ignorance of what she could be doing to herself.

Bit of a horror story re poor management in the Daily Mail – enough to scare anyone into more careful care of themselves I should think.

http://www.dailymail.co.uk/health/article-1309609/The-cruel-cost-ignoring-diabetes-Jane-lost-arm-legs-disease-like-didnt-seriously.html

Sadly such horror stories do little to change an individuals perspective of their own condition, I often get parents asking for their teenager with diabetes to meet people with complications, but experience tells me that the teenager just knows it won't happen to them………

Every vascular surgery ward has a smoking diabetic outside it who is missing one or both legs. 🙁

Stoatsbrother – Member
Every vascular surgery ward has a smoking diabetic outside it who is missing one or both legs

Sadly, true, I recall a patient on my first medical ward as a student nurse, bilateral lower leg amputee, one arm missing, and the guy then CVA'd as well. He'd had T2DM for donkeys, and never treated it seriously, had a job working for a brewery and by all accounts had almost drunk the brewery dry during his time there. Smoked like a chimney before his CVA robbed him of the use of his remaining arm as well.

Having had Type 1 diabetes for 34 years I can honestly say one thing – diabetes is sh!t, I wouldn't wish it on my worst enemy. however I can also say that apart from a few things such as driving HGV's, serving in the military, it doesn't stop you doing anything.

Being positive and proactive are soooooo important. It is a disease that will catch ALL sufferers out at some point no matter how well you monitor/control etc, after all you are trying to do the same job manually as your pancreas does naturally.

Something that is rarely looked in to or discussed is the psychological effect of diabetes, my son was diagnosed with type 1 2 years ago, he, my wife and I were devastated and it has taken over 12 months to get things in to perspective and allow him to accept his condition and hence enable him to take care of his control, something that has been greatly improved by him starting on an insulin pump (I started on a pump 2.5 years ago and it has completely transformed my life). Doing injections never bothered me but having to inject does make you feel 'different' and my son felt very alienated at school by having to go and inject after his lunch.

Be supportive to your sister-in-law, talk to her to find out all the things people have said above, there may be a simple reason for the issues mentioned in your post. only when you source the problem can you find the solution.

Good Luck

Mark

Mark, nationally Diabetes UK recognise that good psychological support is essential for children, teenagers & their families, but that a figure in the region of 85% of teams have no access to the appropriate support, and often if they do it can be a long wait, as well as the right person sitting in a child & adolescent mental health team (CAMHS team). Great to hear that he has preogressed onto a pump, as 4 or 5 insulin injections per day can't mimic the fine changes that kids bodies require. If emotional support needed for your son, then GP or his care team can refer to appropriate service.

" the insulin she was using was completely outdated and changed it "

Same thing happened to my mum. I theorised that either there is variation in the speed the body metabolises different types, or you get used to one type and react differently to another. It takes time to adapt biologically or lifestyle/routine I think.

I don't expect there much research into adverse affects of changing from one type to an "identical" type which is made more cheaply.

" the insulin she was using was completely outdated and changed it "

Ah, I forgot to mention that. I only changed off my old 2-a-day insulin regime because they discontinued one of the insulins. That's probably the only criticism I have of all my diabetic care to date, that should have been reviewed probably a decade before as I'd have been better on a pen. There's maybe a wee bit of an "if it ain't broke don't fix it" approach and a settling for "good enough". But then even on the antiquated 2-a-day regime I was still better controlled than most so I suppose I shouldn't grumble.

(And yes I will say diabetics, I'm entitled)

You are indeed, and I would have bedecked my original comment with emoticons if I could have been bothered/been sure of not using the wrong one.

Your sister probably doesn't see this as being the problem you do etc

Also a very fair point – like missingfrontallobe I also see lots of patients who choose to run their diabetes in a way that they feel causes them least hassle in the short to medium term. If its an informed decision then I may not agree but that's their right and mine

I can honestly say one thing – diabetes is sh!t

Yep.