Funding and changing hospitals

[donnellysdogs]

It is important with GP that you do not over correct with your nourishment.

I do not know what level of GP you have currently but you need to try and not overly correct. You will get bigger rises and drops...


I waa encouraged to eat 6 small meals (literally a meal was 3 teaspoons of yogurt etc).... a day. My stomach and levels could not handle that.

I survived on finding the most nutritious meals x 2 a day with 6 hours in between.

I am able to eat mushy veg and fruit in a smoothy. Nothing leafy and no onions or tomatoes in anything.

I had my first full size plate of food in 5 years on Sunday.

I found a pump brilliant. Had it for 5 years but my body then started to reject cannulas.. so then had discussions reference a diaport (also with Input) but as I am also intolerant to dressings and other medical items/products it was not seen as a good option for me.

So I am back to MDI and 2 different basal insulins taken 3 times a day and 2 correction bolus's at 4am and 8am as well as the basals. Food is also a huge player with my probs.
18 months ago I was surviving on avocado and skinned cucumber with a home made smoothie...

I feel for you with complete empathy.

You need to get the best care and UCL is a good choice.

As you have GP -do your GP team and diabetes team talk? Are they both at Surrey hosp? Would you transfer care for GP to same hosp?
It is best to have both teams in same if possible..

 

[saruhbeau]

It is important with GP that you do not over correct with your nourishment.

I do not know what level of GP you have currently but you need to try and not overly correct. You will get bigger rises and drops...


I waa encouraged to eat 6 small meals (literally a meal was 3 teaspoons of yogurt etc).... a day. My stomach and levels could not handle that.

I survived on finding the most nutritious meals x 2 a day with 6 hours in between.

I am able to eat mushy veg and fruit in a smoothy. Nothing leafy and no onions or tomatoes in anything.

I had my first full size plate of food in 5 years on Sunday.

I found a pump brilliant. Had it for 5 years but my body then started to reject cannulas.. so then had discussions reference a diaport (also with Input) but as I am also intolerant to dressings and other medical items/products it was not seen as a good option for me.

So I am back to MDI and 2 different basal insulins taken 3 times a day and 2 correction bolus's at 4am and 8am as well as the basals. Food is also a huge player with my probs.
18 months ago I was surviving on avocado and skinned cucumber with a home made smoothie...

I feel for you with complete empathy.

You need to get the best care and UCL is a good choice.

As you have GP -do your GP team and diabetes team talk? Are they both at Surrey hosp? Would you transfer care for GP to same hosp?
It is best to have both teams in same if possible..

Thanks so much for the advice!

My GP isn't as bad as what you describe thankfully. I have good days (or weeks) and bad weeks.

I find eating little and often helps but that obviously means more injections too. I hate how long it takes me to raise my bg when hypo.

I haven't even had a gastric emptying study as my GP said it is too expensive! She said there is no point as it won't change how she is treating me for GP. I would obviously like a emptying study done and want to see the gastroenterologistbut I mental don't feel strong enough to fight my Doctor.

I have tried metoclopramide which I didn't agree with. I take domperidone 3 times a day now which does reduce the nausea and vomiting most of the time.

I haven't vomited in a week which is good for me. At times I can't keep water down. I have a phobia of vomiting so that makes things worse. I completely empathise with you having GP too. For me it is the worst condition I have and the worst complication of t1 ever. I have only had it 6 months but I hate it so much. It gets me extremely down and I know some people have it much worse.

It sounds like your insulin regime is very much hard work. I manage ok on twice daily levemir and humalog bolus in between for corrections and food. I think a pump would help because of the prolonged bolus function and I have also noticed spikes during the early morning.

Sarah.x

 

[saruhbeau]

As someone with a similar personality, I need to point out a few things that you may already know, but they are worth reviewing from time to time anyway.

• Sometimes a high sugar comes down to normal range by itself, particularly if it has only been 1-2 hours since your last meal bolus. This is due to insulin acting more slowly than the food you have eaten.
• If this is likely to happen, it's probably best not to correct it, as that is likely to cause delayed hypos and add extra lingering insulin to your system which complicates later meal boluses.
  
• Unfortunately it can be hard to tell whether a post-meal spike will come down by itself or not, because our body doesn't always digest meals at the same rate, moreso with gastroparesis—and insulin does not always absorb at the same rate either.

Something I would suggest: a few times a week, resist the urge to correct for 4 hours after a random meal, and just see what happens. It's important to do this several times, because the same thing won't happen every time. A high sugar may often come down on its own, and if that's the case, it's an important fact to know.

"Sugar surfing" is without a doubt the right approach for some people. But sometimes, it just gives an illusion of control while actually making sugars more unpredictable and much more stressful, because of all the random extra insulin in one's system. I was in that situation and I would not admit it to myself for a very long time.

But my diabetes was also genuinely erratic and hard to control, which just compounded the problem. My health was a ruin. To be honest I'm surprised I managed to recover from that, but I did. I had to learn a lot of things the hard way. I fought hard to get myself better tools and they were very important. My most helpful tools were my CGM, ultra-fast insulin, and pump, in that order.
If you think I have anything to offer you I'd be happy to chat.

Thanks for the advice! I will definitely try what you said and will remind myself to think before correcting if it is just a post meal spike that will drop itself. It is hard to know what is causing my bg to go up sometimes. Sometimes I get a spike many hours later which I think is due to gastroparesis which means I digest some things SO slowly.

 

[donnellysdogs]

I have same probs with hypo and time it takes to get in to system. Thats why I try to suck sugar cubes.

Personally.. I would change GP! You dont have to fight your GP, just find a different practice!
You are entitled to see a gastro person.there is a way round it if you could afford to pay privately for a one off appointment. I did just that. My gastro chap then put me back thru the nhs for all the tests as he knew I was self funding and not through medical insurance. I chose my gastro chap before speaking to GP and asking him to do a private referral letter for me. I used gogle and the GMC website and looked up the top persons in my area.... my appt 5 years ago was £160 and the best £160 I have ever spent.
Dr Anton Emanuel is meant to be superb. https://www.uclh.nhs.uk/OURSERVICES/CONSULTANTS/Pages/DrAntonEmmanuel.aspx

If I couldnt have been sorted out, then I was going to be referred to him by my consultant.

After paying for the initial private appt I was then nhs.
I phoned secretarys etc and spoke to them about private costs and availability etc.

@saruhbeau you are entitled to see a gastro person. It does not come under the GP budget... but the hospital budget to sort you out... prescriptions are different and your current GP may be injuring you further by refusing you a gastro chap..

Please consider taking some steps as you arent fighting your GP.. you are fighting for your health!!

 

[robert72]

hi @saruhbeau

I have switched hospitals in London and am currently at UCL. I just asked my GP to refer me which only took a few weeks.

Just wanted to point out that Kings is a different hospital and usually referred to as KCH not UCL (aka UCH or UCLH), so you might want to be clear about that when asking for a referral. Hope it all goes well for you.

 

[saruhbeau]

Thanks @donnellysdogs

What is the benefit of seeing a gastro specialist? Is there better treatment options if I get a diagnosis or is it just a good idea to have a firm diagnosis?

Funds are extremely tight, (I'm going to be a student in September and only manage to work part-time.) I also have a pony I have to pay for and I just ordered the dexcom g5 so need to find money to fund the sensors! So it would take me a couple of months to save up to see a gastro privately. If I can get a referral through my gp I will.

I had my clinic appt today. It went better than expected. The lead consultant wasn't in but I saw a new one who was actually very pro pump. And said it is more than reasonable for me to apply for funding. He is going to talk to my dsn.I told him I wI'll get referred to Kings if I don't get offered funding here and he said to speak with my dsn first but that kings will likely have no problem with applying for funding if not.

I did send my dsn a long email last week explaining everything like I did in my first post. I briefly saw her today and she said she had read the email and is digesting it!? She said she is happy for me to work towards applying for funding but that we need to make a few appts together as she has a few things I want to work on first. Probably DAFNE course and reducing hypo's.

Also found out my hba1c is 7.5! Only 7 weeks ago it was 8.4 and 3 months before that it was 9.7. Dr said I am doing something right.

Gastroparesis has been awful the last few days. I got sent home from work as I couldn't stop vomiting. Spent all evening over the toilet bowl and now my tummy is just very bloated. Teaches me for trying to eat salad and coleslaw.

Eta thanks @robert72 yes I got a little confused about the two hospitals. Are you on a pump?

 

[donnellysdogs]

The point of seeing a gastro specialist is for both the confirmed diagnosis AND because they specialise in gastro problems day in / day out etc they can actually give and start you off on meds that Doctors cant. For instance Lubiprostone for me coukd only be authorised by a consultant. It officially could only be given for 2 weeks or a max of 4 weeks, even by a consultant. However he kept me on it for a year and it was the best thing ever for me. Its consuktants tgat can arrange tube feeding etc if it worsens.. you need to stop things getting worse if you can.. your GP is not allowed to stop a referral in basis of costs.
You are not fighting her, you are fighting for your health. There is a big difference and she may understand if explained that way.. also a consultant would be able to try and fibd you the right treatment to give you the best quality of life. The costs go through the hospital funds not the GP...

Please explain to GP and explain it all on grounds of fear and scared for your future and your quality of life. You want to be able to contribute to society and not be a burden on it or the NHS.. etc etc.

Salad is a no no for most GP/colon probs especially leafy foods or hard foods like coleslaw as our stomachs and colons cant push the food through...

My gastro chap was also superb at recommending foods to me and which foods not to eat. Ie the dietitan saidto have condensed milk! He said "no way!!" Too much fat. He did say for me to have as much mushy veg as possible. Nothing with skins.. smoothies a yes.
Deffinitely no onion... which is in coleslaw... no tomatoes.. only avacado and skinned cucumber from a salad.. to have smoothies with spinach/kale.

So glad DSN is at least reading your email. Well done and you got a more positive response to a pump. That all very positive. Well done on getting hba1c down.

 

[robert72]

Eta thanks @robert72 yes I got a little confused about the two hospitals. Are you on a pump?

Ah, no I'm still on MDI. I did ask my consultant yesterday what my chances were and he said I was too well controlled and that saying I had a dip at 3am was not the right language

Sounds like you are at least making some progress and well done with the A1c.

 

[saruhbeau]

@donnellysdogs THANK YOU you have taught me so much. Seriously.

I'd never heard of that medication, and I worked as a pharmacy technician for 9 years! I just Google and it sounds interesting. Does it help with digestion/nausea or mainly constipation? I have awful constipation too. Domperidone helps a bit. It sounds like I definitely need to get seen by a specialist. I made an appointment with my GP today which is over a month away. It was the earliest available

I need to learn more about what foods are safer because at the min I eat little and often but have not restricted what foods I am eating. Obviously salad etc is not agreeing with me so I will cut that out for now. What foods do you find you can eat? I am sick of the agony I end up in after eating. Like I said in my first post, I am about 2 yrs in recovery from an eating disorder and the gastroparesis is really testing me. As in, I begin telling myself what is the point in eating and trying to be healthy when I end up vomiting and in pain. It can't be healthy to be vomiting and in pain so I should just not eat. I find quinoa doesn't cause me pain, but I find it filling so only have a very small portion.

. And thank you it has been hard getting the a1c down. I am feeling a bit disheartened about it today as my dsn basically said the only reason my a1c is down is due to excessive hypo's and she would rather it was back up to 8.5 without the hypo's. Thing is I am trying to prevent the hypo's but like today I ate a small dinner, bolused and then dropped as digesting takes so long. I didn't do my insulin until after eating and I am working so have to really inject in my dinner break. It's frustrating having hypo's that are not in my control.

Anyway I am off to bed. I hope you have had a good day GP wise and I am glad you have found a medication that helps

 

[saruhbeau]

@donnellysdogs this is today. As you see I dropped in the evening an hr after eating. It was actually quite a bad low but libre wasn't being accurate. It came up fast with glucojuce though.. Not a bad day for me overall. Can't wait for dexcom to arrive it is on its way!!

And thanks @robert72. Would you like a pump? It is frustrating that clinic say your control is too good for one. Doesn't that show you are just working extremely hard!? If you fit any nice/abcd guidelines I would argue my case if I were you that is if you want a pump obviously.

 

[donnellysdogs]

@saruhbeau

First off well done all round.

My journey been difficult because I also took morphine patches and diazepam for a while because of pain and this put my stomach/colon to complete paralysis. So, also you need to be aware that pain medications will also affect your insides. Ie for my recent op in recovery I agreed to an intravenous morphine..but I knew ways to handle it... but even though ward nurse said I would not be discharged without pain meds... the professor didnt prescribe and when I said I wouldnt take anything anyway he was happy that I knew the pain and discomfort from my stomach would be worse.
So, anyhow it is great to hear that you are going to listen more to your body and also not to avoid food but to find things that are more suitable.

Lubiprostone (amitiza) was used for constipation. I had numerous occasions of needing ambulancemen and morphine to get me off the loo and into hospital.. excuse the detail.. but what came out of me was weighed and measured on occasion and it weighed 6lb.. more than some babies! And our bums arent made to contract for this size lodged and going no where!! Lubiprostone for me has been superb with dulcolax liquid sugar free.

Initially GP had given me stupud ineffective yuchy movicols etc. And pathetic small 5ml enemas to use.
Consultant changed it to phospate 125ml enemas (as a back up, rather than having to have A&E) and also picolax sachets.. these normally used for patients having stomach emptying tests at hospital. These have kept me out of hosp now for 9 months. Horrible using them, but so is 4 ambulancemen stood over you in toilet!!

The worst things are the crashes before the food digests thru your stomach... so it is better to inject after...

To be honest at one point all I could eat was skinned cucumber and avocado with a teaspoon of salmon or tuna with lashings if olive oil. The only cereal was rice crispies.
Veg wise I am good with roasted butternut squash, mashed parsnip, mashed potato, cauliflower rice roasted in oven or pulped.
Nothing stringy like runner beans, no peas or or beans with shells.
I have a lovely corned beef hash now.. cooks good and freezes well. Portions have been up to a teaplate and I have tried a small dinner plate but it was too much afterwards!

Smoothies are good nutritionally and go in glasses prepared in fridge for 3 days. I add in coconut milk, any fruit juice, spinach or kale/ tinned peaches/ apple/pear/melon/kiwi and also avocado (frozen ones from Tesco-cheaper and dont go off). Anything I fancy really. The only trouble is they are hard to calculate for. Mine worked out at 17g per glass but because of the fat from coconut milk and unknown sweetness I had to bolus for 28g in the end. I out in any fruit as it was all pulverised and dont need to worry about leafy spinach.

Also at one point I had jarred baby food!! Hated them. But was a quick emergency food. Tge best was the puddings!!

Soup was ok but then discovered from my gastro chap that onions and tomatos were big no,nos. he was right. So as 99% of recipes have this in, then I dont bother.

However, if I go out (hubbys 50th) I phoned restaurant and asked for melon for starter, soup for main course and sorbet for pud.
It meant I could still go out which I had avoided for years...

I have the guardian connect sensor that works to my iphone and love it. Tge longest it has been extended for is 13days though. Mine is done via funding at a hospital though. You should be able to get funding if you can give full account if how it can help you. I print off graphs every week of each days trends, my food, how it helped bowel/bloods etc. I do lig my food and effects of it daily. A bit OTT to be honest, but it has enabled me to gain funding.

My hospital have access 24/7 that I granted for them to look at my data too.. I want them to know how I struggle. I hide nothing. Doing this has helped enormously.

There is a good facebook page for people with gastro intestenal failure uk... giftuk??? Its good. Diabetic T1's and GP'ers. And POTS, GERD etc.

I would advise you to use the next month before appt (appalling!!) to log down what you ned to say to GP for referral requests.
Find out name of consultant and hospital that you can get to and happy with... you are entitled to go to hosp of your choice.

Also add in that you appreciate GP help enormously but you know tgat a GP cannot sanction certain medications etc and therefore request that as your care is changed to a person that can give tertiary care....as this disease is rare, and you would like some quality of life and to be able to contribute to society... if you lose your job (add this in..) due to illness then you will be a drain.... lay it on thick... that you are trying to positively help yourself but need their commitment too.

You would find a pump so much easier as you would be able to do dual wave bolus that would allow for delays in your stomach emptying, and vomiting.. you could cancel the bolus if necessary. You cant do that on mdi, that needs to be pointed out...

I am so glad that you have found some help from my experience. Your post gave me tears, as I dont think people really know how bad stomach and colon can affect us. People think of stomach ache/occasional sickness/mild constipation but not just how serious and debilitating life with really severe chronic day in day out problems are.

 

[donnellysdogs]

I can also handle eggs... like omelette or soft boiled.. and courgette (skinned) fried in butter... poached eggs too..

 

[CathytheChef]

I have a similar DSN, and actually all the clinic staff at my hospital are fairly awful. Definitely change hospital if you can. It's not only about getting the funding - I've been using a pump for about 10 years but with no support from clinic it's never really significantly improved my blood glucose or quality of life. In fact worse than that it's meant I have to see one specific consultant who is of the opinion I'm a "bad diabetic" and I'm not trying hard enough - he actually once said "maybe it's my fault I haven't scared you enough into doing it right yet" ... omfg - it would be nice if he could tell me how to "do it right" rather than trying to bully me into doing something I don't know how to do!! Anyway ... point is if your clinic team are unsupportive of funding they will be unsupportive in general - if you have any opportunity to move definitely do it! I wish I could. Well done for fighting the ED-T1DM - sounds like you're doing great - hope you get your pump soon xox

 

[robert72]

And thanks @robert72. Would you like a pump? It is frustrating that clinic say your control is too good for one. Doesn't that show you are just working extremely hard!? If you fit any nice/abcd guidelines I would argue my case if I were you that is if you want a pump obviously.

Hi @saruhbeau - I am actually not sure that I want a pump, but would really like to know what I am missing. I'm sure I could build a case if I was really determined On another note, why don't you come along to one of our T1D London meet ups? Plenty of us come in from the home counties and there is nothing quite like the peer support from being with a bunch of people who really get it.

 

[catapillar]

.I told him I wI'll get referred to Kings if I don't get offered funding here and he said to speak with my dsn first but that kings will likely have no problem with applying for funding if not.

Kings certainly seem very pro pump. I had an appointment there last week and I think everyone in the waiting room had a Medtronic on.

But I think Kings (or really any hospital) will want you to have completed DAFNE before starting a pump. Prof Amiel, one of their consultants, is chair of the DAFNE executive board. And you do need to be confident in carb counting and adjusting basal and bolus doses to use a pump, DAFNE will make sure you are.

 

[donnellysdogs]

Forgot to add @saruhbeau I add in whey powder for protein and yogurt to the smoothies as well. I was under weight at one point and lost all my muscle. I was just skin on a skeleton. Adding protein powder in was good.

I still do smoothies by tge way.. I dont know why I write everything in past tense..

My stomach not cope with any meat as its to solid a mass, although corned beef is the exception in a hash.
No bread, pasta or rice as it just sticks and doesnt break fown or move. Cauli rice is good roasted with homemade curry sauce made without onion...can tolerate that. Hubby has chicken and I have broccoli with the curry sauce.

Also pretty much everything that goes in smoothies is bought frozen except juice bananas and kiwi/melon. I buy cheap fruits sometimes like over ripe bananas and just cut up and freeze them.

You will find your own foods you can and cannot tolerate. There are so many of us that are so different.

Never give up...

 

[AndBreathe]

@saruhbeau - I'm not a T1, never mind a pumper, but I have recently had my Endo care (for something else) changed by my GP. I was speaking with her about the results of some tests I had had done privately and she asked if I would like my NHS care transferred to the private Endo, rather than go back to someone I felt wasn't too enthusiastic about my predicament. (My private medical insurers are playing silly devils on this one, but that's a different battle. I'll spare you the detail!).

In essence, I was surprised to be told that not only was a patient entitled to a second opinion on anything (provided they had a valid reason), they were entitled to a named referral; to a consultant of their choosing.

I think perhaps what I am saying is that as well as doing your homework on the hospital itself, it could be useful to try to learn of anyone's experience at your chosen hospital to see if there as anyone there who is considered "stand out". In for a penny, in for a pound as they say.

My GP is a keeper.

 

[donnellysdogs]

Dr Google and the GMC Website is a good source of info.

You can go on to hospital websites, find out endo names and google and do GMC checks about their specialities and where trained etc.

I soent xmas day writing to a Professor at a hospital where I had mo named surgeon or consultant or nurse and sent him a huge document asking him to look at my request I had battled 18months to get...
I googled him thoroughly.. best thing I did. He agreed to surgery and did a superb job and fortunately I was right to have requested ut as abnormal cells were found... and taken away..

All patients should know they do not have to go to their nearest hospital or any consultant. You can even phone up and ask to speak to secretary if you have any questions..

The GP has absolutely no right at all to refuse you a specialist referral for a very specialist illness.

All patients should be aware of their rights. I have also had to ask for 2nd opinions.

None of my "requests" have ever been refused and I have never had any awkwardness...

 

[CJOtter]

With the gastroparesis being as a result of your T1 the endos could refer.

 

[andi140373]

The fact that you want to plan a pregnancy should get you a pump. My HbA1C was 6.1% and I wanted to have an easier pregnancy with my second child (first born at 34 weeks due to polyhydramnious). As soon as I said I wanted to plan a pregnancy, I qualified for a pump without any application for funding etc and I breast fed for 2 years after that so I could keep it. By the time I stopped, I had been pumping for 3 years and then had to apply for the funding, but as it had been my 'treatment method' for so long the consultant said that their was no way they would ask me to give it up. My youngest is 5 next week so I've now been pumping for 6 years and would never ever go back. At my last check up I asked if it was now easier to get a pump and was told that the majority of people who request one are now approved as the long term benefits are cost effective to the PCT's.
Try the pregnancy route and see what response you get - Good luck x