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Help! Long-time T1D, new to NHS

caja387

Newbie
Messages
4
Type of diabetes
Type 1
Treatment type
Pump
Hi
I recently moved to London from South Africa to continue studies. I'm here long enough that I am fully eligible for NHS, thankfully- I'm just struggling working out how to navigate the system to get the care I need! I've had T1D for nearly 25 years, use an insulin pump, CGM when I can get sensors, test BG often, etc. I brought a lot of supplies over here with me when I first arrived, but obviously need to work out how to get new, regular supplies of everything- as well as the necessary appointments with doctors...

So I've registered with a GP, and am currently getting my scripts for insulin, test strips, levothyroxine (also have hypothyroidism) from there. I've had to change GP once since getting here in September last year because we moved apartment. The first GP I was registered with told me I could get whichever BG meter strips and ketone strips I preferred- seeing as I had a freestyle optium meter already, I happily went with that, and I like it because I can use it to test BG and ketones. The nurse at my new GP has told me that they are not meant to prescribe those strips because it's not an NHS "preferred" meter- but he couldn't tell me what the preferred meters were. I managed to get the regular freestyle ones for now, but need to sort this out soon. He would also only prescribe me 100 strips for a month. (I've been paying cash for extra that I need each month).
so my first two questions:
1) Can anyone confirm if the NHS has "preferred" BG meters, and if so what they are, and if they are any good (accuracy most NB, then also ease of use, compactness, memory storage, etc)?
2) 100 test strips a month is really not enough for someone using an insulin pump (or any self-monitoring PWD IMO). Is this nurse just being difficult, or this a system wide limit for monthly prescriptions?/ What is the max number of test strips we can be prescribed for a month?

I've also finally gotten the GP to write me a referral letter to an endocrinologist, because as far as I've been able to work out, I need to get insulin pump supplies via an endo/ diabetologist/ specialist clinic.. three questions here:
1) can anyone explain exactly how this system works? ie repeat prescription for pump supplies, or direct supply? regular appointments?
2) if i got pump supply scripts from here, do I get scripts for everything else (insulin, test strips etc) from them too, or does that still come from the GP?
3) Am I allowed to have a preference of where I get referred to? or is it on a catchment area basis, same as with GPs? The GP wants to send the referral to Charring Cross hospital because its the nearest to him, but not overly convenient for me as it's not that near to where I live or spend my time- I guess someplace like UCLH would be more convenient because I'm in that area for University pretty much everyday...
3.2) Lastly, if I am allowed to have a preferrence, does any one have any experience on where may be best to be referred to/ a really good reason why I should opt for the less convenient hospital?

Long post, I know, sorry! I've really not found the NHS that easy the navigate, any help and advice would be greatly appreciated!
 
1. Preferred meter very much depends on the funding body that the GP is linked to. Each has their own rules relating to blood testing strips. 100 is certainly too low, and once you have made your feelings known, they'll up the amounts. Under the rules, you should get what is required to manage your condition effectively. If they don't know what the preferred strips are, they should give you a normal amount until otherwise informed. It will be the parent group in which your GP sits that will matter though.

On your pump questions, generally the funding and prescriptions are from different sources. Essentially, the GP gets funding from the NHS and provides your prescriptions. All your scripts should come through the GP.

You have the choice for referral, and I'd personally recommend Guys and St Thomas'. It has a very strong Endo unit with strong research and a good pump clinic. If you'd like more assistance, I can provide you with the email of a DSN at the hospital who may be able to help you.
 
You need to get with a consultant at a hospital as priority.

You can phone up hospitals and speak to diabetes secretarys who can tell you whether they have a pump clinic. You can also ask the consultants name.

From there you can then google the consultants.. And look them up on the gmc website.

Get an appt asap... And ask the dsn and consultant at the hospital to wite to your gp telling him to prescribe you xxx amount of strips.

Only a consultant can sort funding out for your pump so this really needs to be a priority..

Sorry don't know of any hospitals..
 
As you are in London, Guys and St Thomas' is an excellent choice and definitely has a pump clinic. According to the website, UCLh also runs a pump clinic, but I have no experience of it.
 
Many thanks for the responses!
I'll look into who the funding body for the GP are, re the BG meter and test strips, thanks for that.
Thanks for the recommendation for St Guys' & St Thomas'- they look decent. Looking into both them and UCLH more this evening, and will get on to contacting them tomorrow. @tim2000s - can I take you up on that offer for the DSN email please?
 
Some GP's are bound by the CCG's to give away certain meters and only prescribe certain strips.

I have an accuchek combo pump and so could state my case to get the strips I wanted... However if I hadn't had this pump I would have been given the CCG's choice of meter.

Do get you choice made of hospital and ask your gp for an urgent referral so that you can get your pump supplies..
 
Thanks again for your replies...
@tim2000s if you could send me that email address for Guy's and St Thomas' that would be really helpful. I've been trawling their website and am not sure who best to contact there. Which campus does the diabetes care normally happen at- the one near Westminster or near Tower Bridge?
 
Thanks again for your replies...
@tim2000s if you could send me that email address for Guy's and St Thomas' that would be really helpful. I've been trawling their website and am not sure who best to contact there. Which campus does the diabetes care normally happen at- the one near Westminster or near Tower Bridge?
The St Thomas' campus near Westminster. The website gives the following as the contact number for the Diabetes unit at St Thomas':

St Thomas' Hospital
Diabetic day case unit
Tel: 020 7188 1981

I'd suggesting calling that first. You will need a referral from your GP.
 
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