Where to start?

[DJTT1]

25 years+ of MDI regime with HbA1c
of over 58mmol/mol for past 5 years and frankly am struggling even with CGM. I want to switch to pump/HCL therapy to improve control but have been unable to get an appointment to discuss with a consultant at local diabetes centre for nearly 18 months due to NHS backlogs. Would appreciate recommendations anyone may have for a pump/HCL positive clinic accessible from West Kent. Thanks.

 

[Juicyj]

Hello @DJTT1

Different approach - try your Diabetes Nurse instead, start there and see what the process is for approval, I find it difficult to get through to consultants but a nurse is the best starting point, can you call or email them ?

 

[Jaylee]

Hi,

I saw my endo yesterday.
I upfront pushed for a pump.
I was told that the funding is pretty much there in my area….. However, they don’t have the trained HCPs to oversee it?
For once from the endo’s demeanour I thought I’d pushed my case…

 

[KennyA]

25 years+ of MDI regime with HbA1c
of over 58mmol/mol for past 5 years and frankly am struggling even with CGM. I want to switch to pump/HCL therapy to improve control but have been unable to get an appointment to discuss with a consultant at local diabetes centre for nearly 18 months due to NHS backlogs. Would appreciate recommendations anyone may have for a pump/HCL positive clinic accessible from West Kent. Thanks.

Hi DJTT1 and welcome to the forums. I hope you find what you're looking for. I'd just want to caution you and other members about asking for and recommending named clinical individuals - it's one of the things that isn't permitted on the forum. People are OK to recount their personal experiences, of course.

 

[oldgreymare]

Hello @DJTT1

Different approach - try your Diabetes Nurse instead, start there and see what the process is for approval, I find it difficult to get through to consultants but a nurse is the best starting point, can you call or email them ?

Hi @DJTT1,

I second what @Juicyj says above. I assume you're a long term T1 so under your local endo hospital unit. The pump approval process at mine involved various requirements -
a) completion of a DAFNE course - I did mine online during covid.
b) sharing of CGM data with the endo clinic for at least a year. My CGM was self funded for 2+ years and I still self fund it but recently have been given a NHS pump (not HCL).
c) showing the necessary commitment to be able to take the time to maximise the benefits of a pump, but also being seen capable of dealing with the data and complexity overload this can create. This is where an ongoing relationship with your diabetes team is important.
d) expressed strong interest to endo to be considered for a pump and followed up discussion.
e) pump specialist DSN consultation - she prepared pump application
f) Clinic pump approval committee review approved me for a pump. This was 11 mths after the initial application.

HCL is under a 5 year implementation plan. If I cope well with my new stand alone pump, I can expect to be offered an HCL in about 4 years.

Perhaps your more urgent issue is getting regular reviews? 18 months IMHO is too long for a specialist review if you are T1 and not well controlled. (that said, having been given a pump I'm now on annual as opposed to semi annual clinic reviews, though the latter were always only about every 8 months and often online). The specialist nurses' opinions can be key and you should contact them (there should be a helpline) asap to express your concern about the lack of your review status. When was your last blood panel done?

Sadly, the NHS postcode lottery does exist, but do keep engaging with your local healthcare resources.

 

[In Response]

Bear in mind that an insulin pump is just another way of dispensing insulin.
You still need to carb count, calculate and take your insulin.
@DJTT1 I do not know what the reason is for for your higher HBA1C but if you want a pump (and can get an appointment) may need more justification than "my HBA1C is higher than I'd like" and possibly need to convince your DSN/endo that you are willing and able to put the effort into learning and managing a pump.

I agree with @oldgreymare that your immediate problem is getting an appointment if you have not had any support for 18 months.
If you have not been on a DAFNE course (or not recently) this may be a good place to start with your care. It is often a prerequisite for a pump anyway.

 

[oldgreymare]

Hi,

I saw my endo yesterday.
I upfront pushed for a pump.
I was told that the funding is pretty much there in my area….. However, they don’t have the trained HCPs to oversee it?
For once from the endo’s demeanour I thought I’d pushed my case…

hi @Jaylee ,

From what I can tell you've hit the nail on the head, funding is always an issue but the lack of properly trained specialist pump nurses is an even more critical problem now. This impacts both standalone pumps and HCL approvals. But don't lose hope and keep actively engaging with your team.

 

[Jaylee]

hi @Jaylee ,

From what I can tell you've hit the nail on the head, funding is always an issue but the lack of properly trained specialist pump nurses is an even more critical problem now. This impacts both standalone pumps and HCL approvals. But don't lose hope and keep actively engaging with your team.

Hi,

Yep, that’s basically all I can do…
I see my lot once a year & this is the first time I’ve seen this consultant come round to my way of thinking on what is required.

But now it seems there is another “barrier ..”