How and why to move from primary to secondary care?

[LittleGreyCat]

So far, with two different surgeries, I have had all my diabetes care through my GPs, and generally had a very good and supportive service.

I know, however, from PPG meetings and other discussions, that some people with diabetes have their care through the diabetes (endocrinology) clinic at the local hospital.

This can cause some confusion because of the overlap of responsibilities between primary and secondary care, including your 15 annual diabetes checks. Sometimes checks are missed and other times they are duplicated.

The GP surgery also loses some funding that they would otherwise get for the patient's diabetes care.

I have now reached the stage in my diabetes where I might benefit from a consultation (or two) with an endocrinologist to look in more detail at my various symptoms, including results from self funding Libre.

My GP surgery is unwilling to fund this as I am "well controlled".

I could pay for a private consultation.

Alternatively I could switch my diabetes care to the specialist clinic at the local hospital (which would be less convenient but should avoid the need to pay for a private consultation).

Has anyone been down this route already?
If so, how did you do it?

For those already in secondary care, how did you end up there?
Allocated on diagnosis, moved because of other conditions, or what?

 

[DCUKMod]

@LittleGreyCat - I don't think it's as simple as anyone deciding they'll transfer to secondary care. I'm pretty certain you would need to be referred there by your primary care team.

In my local Diabetes UK group, we have a real mish-mash of who receives care from whom. We have T2s being seen in the hospital clinic. We have T1s under their GP's primary care, through to those who have never, ever seen a doctor relating to their diabetes, never mind a specialist team.

Personally, if asked where I am "looked after" for my diabetes care, I'd most likely answer, my own house. In about 10 days, I will have been diagnosed 6 years, but have had exactly one diabetes review, about 4 months after diagnosis. Every single interaction I have had, I have driven it. I ensure I have my annual bloods done. I check my own feet. I attend my annual eye screening, and that's about it.

That said, I've had a pretty straightforward journey with my T2.

If you want a consultation with an Endo, or to be seen by a specialist diabetes nurse (as in a nurse who has a higher qualification than most surgery nurses), then you would need to build your case, outlining the reasons, and why that can't be delivered in primary care, or as you suggest, go privately.

Depending on the specific Endo you see, if they understand you are self-funding, then they may ask your GP to do whatever tests they would like to have done, and if he sees a need, he may ask your GP to refer you to him. That said, you would still be going through the standard referral process.

Should you decide to self-fund, choose your Endo carefully, to ensure they have the experience and interest you want and need..

Good luck with it all. I do hope you find a way to move forward.

 

[Daibell]

Hi. My general understanding is that those diagnosed as T2 will be managed by the local surgery and those diagnosed as T1 will be referred to the hospital clinic. This is fine (generally) if the diagnosis is clear but in cases like mine with slow onset LADA you can end up in either camp. I am still listed as T2 and managed by my surgery DN who is very good and deals with insulin. Others have poor GP surgery support and may get the wrong treatment. Form posts over the years there can be confusion between who manages what when the patient attends the hospital clinic as the NHS still isn't joined up well

 

[SB.25]

So far, with two different surgeries, I have had all my diabetes care through my GPs, and generally had a very good and supportive service.

I know, however, from PPG meetings and other discussions, that some people with diabetes have their care through the diabetes (endocrinology) clinic at the local hospital.

This can cause some confusion because of the overlap of responsibilities between primary and secondary care, including your 15 annual diabetes checks. Sometimes checks are missed and other times they are duplicated.

The GP surgery also loses some funding that they would otherwise get for the patient's diabetes care.

I have now reached the stage in my diabetes where I might benefit from a consultation (or two) with an endocrinologist to look in more detail at my various symptoms, including results from self funding Libre.

My GP surgery is unwilling to fund this as I am "well controlled".

I could pay for a private consultation.

Alternatively I could switch my diabetes care to the specialist clinic at the local hospital (which would be less convenient but should avoid the need to pay for a private consultation).

Has anyone been down this route already?
If so, how did you do it?

For those already in secondary care, how did you end up there?
Allocated on diagnosis, moved because of other conditions, or what?

I’ve recently moved areas - so I’m not sure what will happen now... but in my old area I was under care of a separate diabetes service (which I preferred as I saw a consultant every 3/4 months.

I was referred there immediately due to the go suspecting I was T1. Prior to leaving the area my consultant said I need to be under the care of a specialist team and that the GP in my new area shouldn’t look after my diabetes.... let’s see who decides to look after me now that I have moved!

 

[LittleGreyCat]

@DCUKMod I am under the care of a DSN who knows far more (I assume) than your average nurse or nurse practitioner. I have no complaints.
However I feel that my questions are now moving beyond their level of detailed knowledge, and that of the GP within the surgery who has special responsibility for diabetes care.

 

[Brunneria]

I go to an endocrinology clinic twice a year or so for non D related stuff (prolactinoma), and the consultants have always made it very clear that they won't discuss other endo stuff (blood glucose dysregulation) without a referral for that, but they are happy to discuss the subject (prolactinoma) which they have already rec'd a referral for.

So yes, basically you either have to wrangle a referral from your current surgery, or you will need to pay privately. The bit I am not 100% clear about is whether you still need your doc to refer you for a private consult, or whether you can just arrange that yourself.

 

[becca59]

http://www.diabetologists-abcd.org.uk/Position_Papers/Type_1_standards_of_care.pdf
You may find this interesting re consultant care.paragraph 3

 

[DCUKMod]

@Brunneria a referral is still required, although I have never had issues in that regard. Private GPs can also do private referrals.

Most BUPA/Nuffield hospitals have private GPs in situ.

 

[kazam401]

I was under my doctors surgery for my type 1 care but unfortunately felt I was not getting much "care" at all. In the 4 years I was under the my GP surgery I had 4 diabetic check up with 4 different nurses, who I though - I know more about this than you do (type 1 for 38 years now) on more than 1 occasion.

I had a bit of a rough time about 15 months ago bloods all over the place and I asked to see a consultant at my local hospital.

This took me 6 months to get an appointment. The consultant had me change a few things and asked to see me again in 4 months time.

That was in April 2019, I now have my next appointment July 2020 - absolutely disgusted with my local health authority.

So my advice would be stick where you are now as any change might leave you like me with no support whatsoever!

My local health authority is Blackpool by the way - which has the 2nd lowest life expectancy ages for males in the UK.

 

[MeiChanski]

I think it’s always your GP that can refer you to see specialists for illnesses etc. I don’t think it’s as easy as referring yourself to see a specialist. When I moved here with my bf, I registered at my new GP surgery and within a few appointments, I asked my GP to refer ne to see a consultant. I saw my new consultant some time in April, from there he offered me different insulins etc. Few weeks on, he referred me to the hospital diabetes care team and nurses and got further support from them. If I hadn’t asked I don’t think I would have seen anyone from my hospital.

 

[Norfolkmell]

Hi
Diagnosed three years ago GP told me about LCHF and diet doctor and this web site. Now down to blood tests 6 monthly and annual review with practice nurses who don't know about LCHF. GP appointments about every two or three months normally about all my other problems. Never seen in hospital about diabetes.
However, I am about to move about 16 miles away to the North Norfolk coast and new GP. My Present GP has put (bless him) full notes on all conditions and medication on my electronic record in case I have problems with the new surgery. New surgery, same health authority, does not have a good reputation. I'm not so worried about diabetic care but it's all the other numerous conditions and why I have to take conflicting medications. My GP worked hard to get me on a as good as possible regime with the ability for me to up and mix and match my pain medication day to day. I am really worried now about the new surgery not agreeing with them.

 

[JudiP]

So far, with two different surgeries, I have had all my diabetes care through my GPs, and generally had a very good and supportive service.

I know, however, from PPG meetings and other discussions, that some people with diabetes have their care through the diabetes (endocrinology) clinic at the local hospital.

This can cause some confusion because of the overlap of responsibilities between primary and secondary care, including your 15 annual diabetes checks. Sometimes checks are missed and other times they are duplicated.

The GP surgery also loses some funding that they would otherwise get for the patient's diabetes care.

I have now reached the stage in my diabetes where I might benefit from a consultation (or two) with an endocrinologist to look in more detail at my various symptoms, including results from self funding Libre.

My GP surgery is unwilling to fund this as I am "well controlled".

I could pay for a private consultation.

Alternatively I could switch my diabetes care to the specialist clinic at the local hospital (which would be less convenient but should avoid the need to pay for a private consultation).

Has anyone been down this route already?
If so, how did you do it?

For those already in secondary care, how did you end up there?
Allocated on diagnosis, moved because of other conditions, or what?

I was put on to the hospital diabetic clinic as soon as it was decided I should go on to insulin. I’m still called for regular 6 monthly checks by my GP and these used to fit in with alternate 6 month checks at the hospital. However it got out of phase so sometimes the two are close together. My GP surgery still insist I should go there - probably due to their retaining funding.

 

[LittleGreyCat]

Insulin seems to be the common thread here.
This seems to be the crossover point between primary and secondary care.

 

[LittleGreyCat]

http://www.diabetologists-abcd.org.uk/Position_Papers/Type_1_standards_of_care.pdf
You may find this interesting re consultant care.paragraph 3

Thank you.
That is a very detailed and informative paper.