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Diabetes T2 In Remission - Continued Ed Prescriptions?

R

Rich2222

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6
I was diagnosed as T2 Diabetic 5 years ago, which I managed through diet. 18 months ago, blood sugar levels started to rise and I started to take Metformin, which brought blood sugars down. I decided to change my diet and went ‘low carb’, resulting in the required weight loss, and further reduction in blood sugar levels.
I have had Erectile Dysfunction for about 6 years. Because of a minor heart condition, I was initially referred to the local Urology specialist team at Hospital. As a non responder to Sildenafil and Verdenafil, I was prescribed with Cialis which worked quite well until about 9 months ago.
When Cialis ceased to be effective (coincidentally at about the same time as my Diabetes was coming under control!), I went back to Urology. Eventually I started inter-cavernous injections (Caverject). After 3 months of pain, the Consultant recommended a trial of a Invicorp (another injection). This was successful, and he wrote back to my GP recommending two treatments per week. This is supplied free as I am over 60.
My diabetic nurse is now talking about stopping the Metformin, and taking me off the Diabetic register.

My ED is still quite chronic and my question is over my continued eligibility for the ED medication, if my GP service says I am no longer Diabetic (although I believe the preferred term is ‘in remission’).

The injections are quite expensive (about £20 per week) and I wouldn’t be able to continue these on a private prescription.
It has been a long and stressful journey to get to this point- I am now very concerned about the future of my sex life!

Can anyone tell what happens to ED prescriptions if your Diabetes goes into remission?
 
Welcome to the forum @Rich2222

Prescriptions are free for the over 60's so I would not have thought being taken off the Diabetic register would make any difference. You could always ask your nurse to clarify the situation
 
Just to clarify my point:-
The issue isn’t about whether I have to pay for NHS prescriptions (I don’t).

Generic sildenafil is the only erectile dysfunction treatment you can get on the NHS, unless your ED is associated with another condition from a specified list (which includes Diabetes).
Other medications (such as Tadlafil) are only offered by private prescription.
Previously I was given an NHS prescription for the alternative medications because Diabetes was one of my listed conditions.

My concern is that I will now fall back into the sector of people who don’t have one of the listed conditions, and who don’t respond to Sildenafil, and therefore have to fund the alternative by Private Prescription.
 
Ok so it's definitely your nurse you need to talk to. My last 5 Hba1c results have been in the non diabetic range and it's been 2 years since I took any T2 meds. I may be in remission or well controlled, call it whatever you like but I still have T2 and I'm still on the diabetic register
 
I think the crux of the issue may well rest with where the prescription was initiated. The fact that yours was initiated (interpreting your post) in secondary care may well prove in your favour.
What isn't clear from your post, to me, is if the ED is attributed to diabetes? With ED diagnosis preceding diabetes by one year. This could be important in decision-making process.
I think you may well be OK to receive prescriptions regardless of whether you're taken off the diabetic register.
 
Yes, it was initiated by a Consultant in secondary care. He wrote to GP asking them to continue prescription after clinic trials.
With regard to the diagnosis, there is correspondence from secondary care which mentions the Diabetes and the link has always been there, but you make a good point and I will need to check the dates.
Is there a particular reason why you think it should be OK regardless? Is it because of this original link?
 
Being initiated in secondary care - by a consultant, is very powerful in the context of GP ongoing prescriptions.
Have you checked here - part XVIIIB of the Drug Tariff - to see if it gives clarification?
There may be another section specifically for the preparation that you use. Good luck!
 

Nothing in the Tariff about Invicorp (it is a second or third-line option for non-responders to Alprostadil / Caverject, only initaiated in Secondary care). Maybe that’s why it is not mentioned in the Tariff, although it does appear in my local CCG Formulary so GP can prescribe when requested by Secondary care.

My GP hasn’t been particularly supportive (cost, I presume) so my concern is that he will want to say that if I am no longer Diabetic, I don’t have a qualifying illness for which he has to prescribe an NHS prescription under NHS guidelines. He would, of course, be obliged to supply a Private Prescription, but then I would have the cost issue.

Hopefully, there are people out there with a similar history to give me some hope.
 
@Rich2222 - From observation in here, the number of GPs who declare T2s to be in remission / resolved / cured / gone away* - *select term of your choosing - are few and far between. In your shoes, I would worry about that if he mentions applying an amended flag to your rercords.

If he does want to do that, I would bet he'd be disinclined to change a Consultant drriven treatment rergime without at least first consulting with him. If this was being floated with you, you could write to your Consultant, if you couldn't get a timely appointment see him face-to-face.

Good luck with it all.
 
I agree with the above suggestion, of writing to your Consultant about it, whether now or once you have the issue placed in front of you by your GP. Always good to have a paper trail, and you can better ensure the specific facts of your case are considered when it's in writing.

I've had long and complex journeys for most of my >10 ongoing medical conditions, so your conundrum sounds very familiar to me. To finally find a safe and effective treatment is such a great thing, and to lose it because of some minor bureaucratic issue would be unjust. I am quietly confident you will retain your access to it one way or another.

IMHO, whether male or female, if there is a medical issue causing an issue like ED, then it should be treated like any other medical issue that takes away a normal and expected part of life. We are entitled to appropriate medical care, even if that costs a lot for the GP practice. They would be scorned for expressing their dislike of funding something needed for another part of life, such as a child having a rare genetic condition needing expensive treatment. Their funding process is like a lottery and IMO patients should never be made to feel wrong about a needed treatment just because it is a 3rd line treatment due to cost. Patients can't control this.

Such sentiments probably stem from a lack of understanding of this area of healthcare. I imagine a Consultant urologist would understand it very well, along with understanding what a long and complex health journey is like for the patient.

FWIW, it's possible that even if your ED diagnosis was before your diabetes diagnosis, there was still some degree of causal link, because we are all different and you may have had high BGs for some time before diagnosis.

I've found that even when my A1cs were in the 30s and my BMI was 26, I still had difficulty with infections and delayed healing. So this suggests to me that being in remission may not necessarily remove all risks associated with diabetes. Just something to ponder, I guess.
 
Thanks to all for support and helpful comments.

Here’s an update

After digging out my medical file, I have been able to establish that my diagnosis of T2 in December 2012 pre-dates my referral to the ED clinic in August 2013. Unfortunately there is no mention of Diabetes on letters from the Nurse Specialist to my GP at the time.

However, I remembered that when we moved to a different area 4 years ago, we had to register with our current GP practice. I had problems at the time getting my repeat ED medication sorted out with 2 different locum GPs - both of who said that as I wasn’t on Diabetes medication (at that time) then I didn’t have Diabetes, and they couldn’t prescribe under NHS rules. In any case, they said wouldn’t have prescribed the quantities that were on my prescriptions from the previous practice.

I then wrote a letter to the senior GP with copies of relevant letters and prescriptions, asking for the source of the information that these GPs were using, and for a clarification of his Practice’s policies regarding ED prescriptions requested in Secondary care. I received a rather grudging letter from him accepting that Diabetes is recognised regardless of whether medication is necessary, and that the Practice would supply the repeat prescriptions. There was, of course, no explanation of why the locum GPs had given incorrect information and no apology from him on behalf of the Practice.

I had another issue with this senior GP earlier this year after the Urology Consultant requested that the Practice should move me on to Invicorp, which is not widely used but can be initiated for people who are non-responders to Alprostadil (Caverject / Viridal). He wasn’t keen to initiate the prescription, and I had to contact Urology to get him to write a second letter which does actually mention Diabetes.

So here's where I am:-

1. I can make the historical link between Diabetes in 2012 and Erectile Dysfunction in 2103 (although I have nothing to say that this is a 'causal' link).

2. I have my current senior GP at the practice accepting this in 2014.

3. I have 2 specialists in the last 2 months saying that I need a specific ED treatment (although at the time they would have thought that I had a ‘current’ diagnosis of Diabetes).

4. However, it is only the GP who has the responsibility under Schedule 2 of issuing prescriptions for Erectile Dysfunction (other than Sildenafil).

5. My feeling is that, based on previous issues, my GP is likely to look at the letter of the Schedule (“You don’t currently have Diabetes, so I am not obliged to issue you with a Prescription”) rather than the spirit (“There is a causal link between your history of Diabetes and your Erectile Dysfunction”), if indeed he has this latitude.


I don’t want to raise the issue at my practice yet (either with my GP or the Diabetic Nurse) as it might actually bring the issue to their notice.


Any new thoughts welcomed.
 

I'm a very proactive person, but I would suggest you minimise the chances of you becoming or creating an issue by bringing it up. So many repeat prescriptions seem to be done automatically, and signed by whomever is on that duty the day they're raised.

If the potential issue becomes a reality, is write to my Consultant and try to get him onboard with your a case. He at least would understand your journey to reaching the need for this medication.

When all is said and done, medics can go "off-piste" with prescribing, where they see a clinical need, and especially where you have had success.

Best of luck, but please don't lose sleep over this, until you really have to.
 

I hear what you say...
I am, however, a worrier by nature, and the way I usually cope is by addressing a problem quickly rather than leaving it.
However, I had already come to the conclusion that I wasn’t going to raise this with the GP until I had to.

I am not sure what the consultant can do in this case. The responsibility for ongoing prescriptions lies in Primary Care.
If the GP takes the view that I am no longer eligible under schedule 2, the consultant can’t over-rule him....
I am seeing the consultant in August, and he is fairly approachable. What do you suggest I should ask him to say to the GP?
 

So, yourr nurse is considering stoppong your Metformin and rrmoving you fom the diabetes register, well you could finght that for starters.

I amoff the register. I didn't ask for it to happen, but I wasn't upset by it, as i still pretty much get the same checks ow as before. YOu could suggest you worry about a regression and per haps your ability to remain on-track without the benefits of being on the regiister, perhaps.

Pressumably, you will have had one or more prescriptions before you see him? Why not see if there is any resistance to prescribining in the interim.

I wouldn't raise the issue. I don't know how bold and confident your GP is, but most won't go against a Consultant.
 
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