Advice would be gratefully received

[JJ2026]

I went to see the diabetes team last week and what they said to me, made me feel quite scared actually and doesn't seem to make any sense at all.

6 weeks ago, I was put onto the Omnipod 5 insulin pump and frankly, it has been a game changer. I was calling 999 at least once a week due to my blood sugars crashing uncontrollably. I have had ZERO hypos in that time. I hardly ever go high. At last, I was starting to feel things were going back to 'normal' whatever that is.

When I went in, I was informed that my readings were 'too good' to justify keeping me on the pump. I couldn't speak at that point. I have put weight back on, I sleep through the night without worrying about dying in my sleep. I've got my life back. When I could finally speak I told them would this lead me back to how things were and I was informed that unfortunately, I would likely see a return to having to call emergency services 'on occasion' and that I wouldn't have the blood sugar stability that I currently have.

They mentioned that my C-Peptide readings were better in July than they were when blood was taken when I was in Intensive Care (in March) with acute pancreatitis.

They told me that based off of the July reading, they were going to put me onto Metformin tablets as I now had Type 2 Diabetes! I rang my GP up immediately about this and she closed ranks, as I now realise the NHS does. I have lost faith in the system, to be honest. They seem to want me to be unwell and treat the symptoms, than me to feel my life is my own again.

I asked if I would be given a blood test to see what my readings are now and I was refused. They may have dipped again, since July. I asked if I could pay for a private blood test and I was informed they wouldn't accept that result as it wasn't from within the NHS system. I asked if I could self-fund a pump and again, this was refused. I asked if I could pay to see a private consultant and again told that this wouldn't be recognised within the NHS. I'm at my wit's end. I don't know what to do.

Any ideas please, as to what I can do?

 

[lovinglife]

I’m sorry I can’t help or share any advice as I have no experience of insulin, pumps etc but it sounds like you’re having an awful time, have you thought about contacting PALS to see if they can help

What is PALS (Patient Advice and Liaison Service)?

Find out more about the Patient Advice and Liaison Service (PALS), which offers confidential advice, support and information on health-related matters.

www.nhs.uk

 

[JJ2026]

I’m sorry I can’t help or share any advice as I have no experience of insulin, pumps etc but it sounds like you’re having an awful time, have you thought about contacting PALS to see if they can help

PALS are not going to get involved. I spoke with a number of other patients on the day I went in and they were united in that everything about their diabetes they have had to learn themselves, as no help has really ever been given to them by the diabetes team. At least, it's not just me who's experiencing this.

I have been asking for a month or so now, how to use the pens with the cartridges and they won't show me. I have called my GP and they have referred me back to the diabetes team!

The diabetes team told me to look at the information booklet with the pens and when I informed them I was asking them because my eyesight is so bad that I can't read the booklet, their advice was to buy a magnifying glass!

 

[Antje77]

The diabetes team told me to look at the information booklet with the pens and when I informed them I was asking them because my eyesight is so bad that I can't read them booklet, their advice was to buy a magnifying glass!

This is pretty appalling advice, I'm sorry
But for practical purposes, do you happen to have a seeing friend who can look with you at the pen?
It's very straightforward and I can load a cartridge in my pen easily with my eyes closed, a run through with a seeing friend is likely all you need to be able to use a refillable pen if you can already use pens.

When I went in, I was informed that my readings were 'too good' to justify keeping me on the pump. I couldn't speak at that point. I have put weight back on, I sleep through the night without worrying about dying in my sleep. I've got my life back.

If your quality of life and diabetes control has improved this much with a pump, I think it's appalling that you are prevented from continuing to use the pump, I'm so sorry!

 

[lovinglife]

PALS are not going to get involved.

What did PALS say? Did they give a reason why?

Edited to correct spelling

 

[JJ2026]

This is pretty appalling advice, I'm sorry
But for practical purposes, do you happen to have a seeing friend who can look with you at the pen?
It's very straightforward and I can load a cartridge in my pen easily with my eyes closed, a run through with a seeing friend is likely all you need to be able to use a refillable pen if you can already use pens.

It is appalling advice I agree,
I don't have a seeing friend, unfortunately. Not unless you count my mum, who has dementia. I would like to go through this with someone who understands diabetes.

If your quality of life and diabetes control has improved this much with a pump, I think it's appalling that you are prevented from continuing to use the pump, I'm so sorry!

I feel as if I am being railroaded. I had no say in this. Everything I asked, got shut down right away.

What did PALS say? Did they give a reason why?

PALS said it was something I needed to address with my diabetes team. I explained that had that been able to have happened, I would not be contacting them. They said they would not be replying to future messages from me.

This is sadly what I have come to expect within my local area. The diabetes team in the next county to me, is excellent. When I was in hospital there (it was a procedure that couldn't be done where I am situated) the diabetes team got in touch with me and they were uniformly excellent.

 

[Resurgam]

I can't offer any help other than the advice to record your alarms, such incidentals as your weight and any significant happenings in your treatment - if you can't see well enough to use a notebook and pen there are very useful tiny recording devices which I find very useful - I have three of them for different purposes, and a couple of times when people have been spouting nonsense I have held one up and requested that they repeat themselves - just so I can listen to them again later and try to make sense of what they said. On one occasion it resulted in an abrupt about face in attitude, and in another a hurried departure of the opposition.

The most logical way around the problem would be to move to the next county to get better care, but such things are seldom possible.

 

[lovinglife]

That’s not helpful of PALS, maybe you should now make a formal complaint about how you are being treated, not just the diabetes side of things but how they’ve been dismissive with your struggles with your eyesight etc. If you want to take it further you can make a formal complaint - it’s not through PALS but through the Integrated Care Board - there’s a link on how to complain in the info I linked for you but the info is here, each area is different

https://www.england.nhs.uk/contact-us/feedback-and-complaints/complaint/

 

[BadaBing]

I went to see the diabetes team last week and what they said to me, made me feel quite scared actually and doesn't seem to make any sense at all.

6 weeks ago, I was put onto the Omnipod 5 insulin pump and frankly, it has been a game changer. I was calling 999 at least once a week due to my blood sugars crashing uncontrollably. I have had ZERO hypos in that time. I hardly ever go high. At last, I was starting to feel things were going back to 'normal' whatever that is.

When I went in, I was informed that my readings were 'too good' to justify keeping me on the pump. I couldn't speak at that point. I have put weight back on, I sleep through the night without worrying about dying in my sleep. I've got my life back. When I could finally speak I told them would this lead me back to how things were and I was informed that unfortunately, I would likely see a return to having to call emergency services 'on occasion' and that I wouldn't have the blood sugar stability that I currently have.

They mentioned that my C-Peptide readings were better in July than they were when blood was taken when I was in Intensive Care (in March) with acute pancreatitis.

They told me that based off of the July reading, they were going to put me onto Metformin tablets as I now had Type 2 Diabetes! I rang my GP up immediately about this and she closed ranks, as I now realise the NHS does. I have lost faith in the system, to be honest. They seem to want me to be unwell and treat the symptoms, than me to feel my life is my own again.

I asked if I would be given a blood test to see what my readings are now and I was refused. They may have dipped again, since July. I asked if I could pay for a private blood test and I was informed they wouldn't accept that result as it wasn't from within the NHS system. I asked if I could self-fund a pump and again, this was refused. I asked if I could pay to see a private consultant and again told that this wouldn't be recognised within the NHS. I'm at my wit's end. I don't know what to do.

Any ideas please, as to what I can do?

Hi JJ2026

I'm sorry you're going through this. Losing something that has stopped weekly 999 calls would frighten anyone. I have a legal background, though not a medical one, and I've looked into this a little bit. Some of these points might help.

1. Ask whether "Type 2" is the right label. Diabetes linked to pancreatitis is usually called Type 3c (pancreatogenic) diabetes. It's caused by damage to the pancreas, and it's known to be frequently mislabelled as Type 2. It can cause frequent, prolonged hypos because the pancreas may also make less glucagon, the hormone that normally brings blood sugar back up. Your history of severe, frequent hypos doesn't sound like typical Type 2. It's worth asking your team directly: "Have you considered Type 3c, and if you've ruled it out, why?"

2. Question the C-peptide comparison. C-peptide should be measured alongside a glucose reading taken at the same time. My understanding is that its value for deciding the type of diabetes is generally greatest several years after diagnosis, not months. Comparing a sample taken in intensive care during acute pancreatitis with one taken a few months into recovery seems a shaky basis for changing your diagnosis. Ask for both results, the glucose readings taken with them, and whether antibody tests were done.

3. Understand the funding rules. The National Institute for Health and Care Excellence (“NICE”) guidance on automated insulin delivery/hybrid closed loop systems (TA943) only covers Type 1 diabetes. NHS England's rollout plan for these systems says the NHS should only buy these systems in line with that guidance. So your team may genuinely be restricted if they don't consider you Type 1. That's not the same as your results being "too good": nothing in the guidance says good control on the pump is a reason to stop it. The route for someone outside the guidance is usually an “Individual Funding Request” (sometimes called an “Exceptional Funding Request”) to your Integrated Care Board. You can't apply yourself; your diabetic consultant has to make it on your behalf, showing your circumstances are exceptional. Weekly 999 calls before the pump and none since is exactly the kind of evidence that should go in it. Ask your team whether they will submit one, and if not, why not.

4. Get everything in writing. Ask for a clinic letter setting out:

• your diagnosis and how they reached it;
• the test results they relied on;
• the policy they're applying;
• their plan for keeping you safe from hypos once the pump goes.

You can also request a copy of your records free of charge (a "subject access request"). Organisations usually have to respond within one month to such requests.

5. Ask your GP about a second opinion. You've had a good experience with the neighbouring county's diabetes team. You don't have an automatic right to be referred there while you're under your current team, but you can ask your GP to refer you for a second opinion. If that team supports the pump, they may be able to back an Individual Funding Request.

6. Make a formal complaint rather than relying on PALS. PALS isn't the formal complaints process. You can complain formally to the hospital trust or to your Integrated Care Board. If you're still unhappy after their final response, you can go to the Parliamentary and Health Service Ombudsman. Local councils in England have a legal duty to arrange a free NHS complaints advocacy service. It’s separate from PALS and independent of the hospital, and it can help you make your complaint. Search “NHS complaints advocacy” plus your area to find yours.

Include the eyesight issue. "Buy a magnifying glass" isn't good enough: NHS services have a legal duty to make reasonable adjustments for disabled people, including providing information in a format you can use. Ask for face-to-face training on the cartridge pens.

7. Consider contacting Professor Partha Kar. He has long been a strong advocate for people with diabetes in England. He isn't your clinician and can't overrule your team, and his national work has focused on Type 1. But a short, factual message asking what options exist for someone in your position might get you useful advice.

Keep a log of hypos, ambulance call-outs, weight and sleep, and download your pump data now. It's your best evidence that the pump works for you.

Please don't give up.

 

[JAT1]

What a bunch of completely inconsiderate, rude, idiots you're having to deal with. Perhaps keeping track of your bloodsugar with a meter/pinprick test would help you avoid the lows alongside relating your bloodsugar response to the food you eat. You can buy a meter and the test strips independently.

 

[EllieM]

I would definitely follow @BadaBing 's suggestions in your position, as funding a pump privately is difficult and quite expensive.

However, if all else fails, it's not impossible to fund a pump privately if you have the financial resources, but you'd need to see a private endocrinologist and fund the pump and consumables yourself.
eg (and I haven't used them so have no idea whether they are any good)

Where Can You Buy Insulin Pumps? | Type 1 | London Diabetes

Although pump technology is improving, you still can't pop into a pharmacy and browse for the best pump. So, where can you buy insulin pumps in the UK?

londondiabetes.com

You could contact omnipod directly to get an idea of the costs and see whether they have any advice?

You have my immense sympathy. I was put on a pump by my team in New Zealand just because I got too many hypos, the thought of a once a week ambulance inducing hypo fills me with horror.

Good luck with your situation, I hope you manage to get the help you need.