Threatening letter from GP surgery

Flower said:
The most recent message from my GP was more of a great big stick to hit me with- you cannot request any further medication and must provide us with 7 day/night blood pressure readings and come in to the surgery for blood tests and follow up appointment
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That’s interesting. I get messages from my GP wanting blood pressure readings over 7 days? A nurse actually said my smartwatch would suffice. I looked into smartwatch BP readings. Looks like it can be done on mine but I’d need to calibrate with a traditional BP monitor once a month. That’s also pending on how accurate my watch actually is on this function. A little like if I was to give her my BGs from a non invasive sensor watch? I’ve not been threatened with cutting off the “air supply,” yet.
 
Have just had discussion with daughter and shown her this thread. She said the reason she didn’t question the original text is because she had just had a review at the hospital, and thought that once the GP got sent the letter from that it would cancel out the need for another appointment. Sadly that is not the case.
So the plan is we’re going to call in on the way back from college tomorrow and ask who we can speak to about it. Being as polite as we can to the receptionist because it isn’t her fault. Then we’ll try to get all the points across that I mentioned above. As the letter says that they will only start restricting prescriptions if we continue to ignore them “without explanation”, hopefully an explanation will suffice. If not, however, daughter is adamant that she isn’t going to any appointment with the GP and will contact the hospital team and get them to write to the surgery. The problem she has which makes her unable to walk also makes the feeling in her feet somewhat variable, and it isn’t anything to do with neuropathy, so she needs much more specialist knowledge than she’d get from a GP anyway for the foot checks. She recently attended a workshop with the hospital team which was all about becoming an adult with diabetes - things like driving, drugs, moving away from home etc etc, and they apparently mentioned that it’s ridiculous how often they have to write to GPs to ask them why they are threatening to kill their patients by removing their life-saving prescriptions. It usually works :rofl:
Will let you know how we get on!
 
Sally71 said:
Have just had discussion with daughter and shown her this thread. She said the reason she didn’t question the original text is because she had just had a review at the hospital, and thought that once the GP got sent the letter from that it would cancel out the need for another appointment. Sadly that is not the case.
So the plan is we’re going to call in on the way back from college tomorrow and ask who we can speak to about it. Being as polite as we can to the receptionist because it isn’t her fault. Then we’ll try to get all the points across that I mentioned above. As the letter says that they will only start restricting prescriptions if we continue to ignore them “without explanation”, hopefully an explanation will suffice. If not, however, daughter is adamant that she isn’t going to any appointment with the GP and will contact the hospital team and get them to write to the surgery. The problem she has which makes her unable to walk also makes the feeling in her feet somewhat variable, and it isn’t anything to do with neuropathy, so she needs much more specialist knowledge than she’d get from a GP anyway for the foot checks. She recently attended a workshop with the hospital team which was all about becoming an adult with diabetes - things like driving, drugs, moving away from home etc etc, and they apparently mentioned that it’s ridiculous how often they have to write to GPs to ask them why they are threatening to kill their patients by removing their life-saving prescriptions. It usually works :rofl:
Will let you know how we get on!
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If your daughter initially had text messages with links to book online with the GP surgery? You could also point out, that It is unwise to respond to unsolicited message links due to security online with “phishing scammers?” I’ve spoken with my surgery about this myself & they’ve been reasonable in the response. When i phoned them after a letter.
 
Re the medication reviews...periodically, out of nowhere, stopping me requesting my insulin is going to promote stockpiling, not stop it.

Its also rather unnecessarily unsettling and scary. And i am never really clear how you get stuff on repeat again...it seems to be a different process everytime. I think they just need me to phone my request in rather than using the app. But i tend to dig my heals in. My attitude is, you stopped my px, you can jolly well restart them! Then i end up having a phone 'review' which goes...so, not miracously cured? Ok, we'll allow you your meds

Also, with periodic shortages of late (in needles, for me) its a good idea to be a little ahead
 
Tdm said:
Re the medication reviews...periodically, out of nowhere, stopping me requesting my insulin is going to promote stockpiling, not stop it.

Its also rather unnecessarily unsettling and scary. And i am never really clear how you get stuff on repeat again...it seems to be a different process everytime. I think they just need me to phone my request in rather than using the app. But i tend to dig my heals in. My attitude is, you stopped my px, you can jolly well restart them! Then i end up having a phone 'review' which goes...so, not miracously cured? Ok, we'll allow you your meds

Also, with periodic shortages of late (in needles, for me) its a good idea to be a little ahead
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The amount of insulin set on a single prescription can last me a 4 months. Yet the sensors & test strips every 4 weeks. A couple of times I’ve had issue ordering insulin. When I phone they say. “Yes, I can see you are in very good control. Your recent HbA1c is great.” It’s getting that obtaining the peripherals are easy? But the “controlled substances” are the issue without a detailed account on how it’s used. Yet I attend the appointments & have a good “track record.” I’ve always ordered well in advance, even when I was a kid. (May not have been so well managed back then, but I always knew which side the bread was buttered.)
 
Sally71 said:
(she’s hoping to go to uni but we’d have to make sure we could get appropriate support in place). So this is just one more thing… grrr. Sorry, I’m ranting again. Hopefully we can get it sorted this week!
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check out the uni s disability support team and what help they offer Also think of the disabled students allowance Do it well in advance
hope u dont mind me diverting tread a bit and by the way you are not ranting t all. wots she hoping to study?
 
Sally71 said:
My daughter is under hospital care for her diabetes, has been ever since she was diagnosed, and has just transferred from the paediatric team to the young adults team. They see her every 3 months and always send a letter to the GP summarising what happened at each meeting so that it can be put in her notes.

Recently she’s started getting text messages from the GP saying that she needs to book a diabetic review. Why, they are done at the hospital. She was a bit confused and has been ignoring the messages. Today she received the following letter:

“FINAL REMINDER
You are now overdue for your annual Diabetic review. Please contact the reception team and book a morning appointment with a NURSE as soon as possible.
Please also bring a urine sample with you to this appointment (sample bottles can be obtained from the reception desk).
Chronic condition reviews are essential for us to monitor your condition and ensure you are being prescribed the most appropriate medication and dose.
Should you continually refuse to attend for this appointment without contacting the surgery then we shall begin the process of reducing the quantity of medication that you receive on your repeat prescription.
All patients that continuously refuse to attend for monitoring appointments without explanation, despite reminders, may be removed from the practice register.”

The letter isn’t even signed!
In 12 years of having diabetes she has never had any sort of check up at the GP so I don’t know why they suddenly think she should start now, I don’t know if it’s got something to do with her turning 18, I think that’s about when the messages started. And I don’t think threatening to kill her, which is what would happen if they refuse to prescribe her any more insulin, is the way to go about it!

Sigh. Hopefully it’s just a case of bureaucracy gone mad and people not using their brains to join the dots, and will only take one conversation to sort out, but why the bloody hell should we have to? That’s just another annoying little job that we’ve got to find time for. I’m wondering whether to use the online appointment booking form to explain rather bluntly why we don’t need an appointment, or whether it would be better to go in there and demand to speak to someone. Daughter will have to come with me as she’s legally an adult now, but hopefully she will be OK about arguing the case herself!

Rant over
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It's a computer generated letter, which they will keep sending out until you or your daughter sign an opt out letter/form. It's in their interests to make your daughter go because they get paid extra money when she does.
Just write/email and say under hospital care seen every 3 months etc.... so thank you for your concern but I would like to opt out of the GP review.
Obviously you will have yet another letter next year and so on.
The letter they sent is actually illegal they can not remove/restrict her life saving medication.
 
I've not met my hospital DSN yet although I have had an appointment with a consultant with the next one already in the diary. The hospital appointment was just about the numbers and no mention of the practicalities of diabetes such as the foot tickle - I do like that phrase - or adjusting doses.

Weirdly at my flu jab at the GP the nurse said you're too young why are you here? I said diabetes and turns out that although they issue my medication I'm not on the diabetes list or vulnerable register. The GP has their own DSN and she'll now be in touch. That actually works out well for me - a named person and much more local. I suspect she won't have much knowledge of 3c but at the moment I still find it reassuring rather than ringing a 'communications hub' for the hospital DSN.

It may be my hospital check ups are different to other health boards/trusts but they certainly didn't cover everything I expected them to so. I appreciate the tone and content of the original communication was completely unacceptable but I'm struggling to see why so much reluctance to go to the GPs?
 
Because my daughter has multiple medical conditions as well as diabetes and we have one appointment after another sometimes and we don’t need another one, especially if all they are going to do is the same tests that have just been done at the hospital just 3 weeks ago, it’s a waste of everyone’s time. Plus we’ve never needed it for 12 years so why now! I will ask if she would get anything that they don’t do at the hospital, but she seems to have made her mind up and as she’s an adult now I can’t overrule her. Hopefully a polite conversation tomorrow will sort it all out. I will be finding out who to complain to about the tone of the letter though!
 
Just to add in case anyone else thinks we are overreacting, yes if it was me I would probably just go to the appointment to keep the peace; my daughter is a completely different kettle of fish however. I can’t go into all her health problems here without her permission, but she has had mental health issues, finds all appointments extremely stressful, and does not have the energy (either mentally or otherwise) to be doing anything that isn’t absolutely essential. She said this morning she barely has the energy to go to the essential ones! So repeating any tests when they aren’t due to be redone yet is not happening as far as she’s concerned. Apart from which, the whole tone of the letter is completely off putting, they are trying to bully her into going to an appointment that she’s never needed before and it must be in her notes that she’s still under hospital care. So we shall see what happens this afternoon, the letter does imply that if we can provide an explanation why she doesn’t want to go to the appointment that they will accept that, so fingers crossed it can be easily resolved. The plan is that we shall call in on the way back from college this afternoon and find out who we should be contacting.
 
I think I would e-mail the practice manager with a feedback style response.

Open by saying that you understand why for some patients they have to send stern reminders but unless they take care over designing their mailing lists they will send them to patients for whom the letters are in quite inappropriate.

Explain that Your daughter is a case in point. She is under care of the hospital and been regularly seen. You are not aware of any plans to transfer her care to the GP having turned 18 but if that is so then it needs to be handled in a planned manner. Sending "Final Notices" with threats of removing medication are not appropriate. They must be aware that her insulin is life sustaining and removal of it would have profound consequences. They must be aware of the effect that messages of this sort would have on somebody with her other conditions.

Finish up by asking for her name to be removed from the mailing list for this message and suggest they look carefully to ensure that there are no others who have received it in error. Also suggest it would be helpful if your daughter could be sent a message saying that previous messages were sent in error and she would not be sent any more.

Take the line.... you clearly have a problem with your system and I want to help you to get it right ..... rather than shouting and hollering about their incompetence.
 
Standup said:
The GP has their own DSN and she'll now be in touch.
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It is extremely unlikely that the GP practice will have a DSN. They will be what we call a DN or Diabetes Nurse. She is a practice nurse who has been given some inhouse training usually by a DSN and there is sometimes a DSN who attends the surgery one day a month to help with more complex cases and further that inhouse training. Generally these DNs are not knowledgeable enough to support Type 1s let alone Type 3c s, so do beware of any advice from such a nurse. Some are well aware of their limited knowledge and would seek guidance from a DSN on anything they are unsure of but some can think they know more than they actually do and could offer inappropriate advice.
 
I think just contacting the GP surgery to say all is being monitored at the hospital will help and set the surgery and your daughter's mind at rest. The thing is your Surgery will be instructed by the hospital consultant about the prescription drugs required and it may be worth telephoning the consultant too to ask for a copy of the letter sent to the surgery or ask the surgery for a copy of this letter. I think the surgery is duty bound to annually monitor diabetics regardless of medication.
 
Gosh
I suspect – at least I hope – that many of those awful letters are sent by admin / practice management staff with minimal review from the docs themselves. At the very least they must learn to moderate their language – and definitely avoid making threats.
I'm sure everyone here hopes that you and your daughter find a solution.

Reading all the above makes me realise how lucky I am with my medical care [T2, cardiac probs, knee replacements etc etc]. But I'm in a big city – Liverpool – in the care of a big inner-city GP team which covers several sites including a large student health centre.
The practice has a full-time, highly knowledgeable DN, plus a wide range of support and specialist staff, with senior medics who know the key consultants personally. Then there are two major university hospitals a short ambulance ride away when needed [for cardiac matters rather than any diabetic probs].
I talk to the DN every 3 or 4 weeks on the phone or in person. She checks the data from my Libre sensor at least once a week and calls if there's anything to discuss. Bloods and feet are outsourced to community health service, with results / reports back to the practice in 3–4 days.
This is how the NHS is supposed to work.

KenW
 
Docb said:
I think I would e-mail the practice manager with a feedback style response.

Open by saying that you understand why for some patients they have to send stern reminders but unless they take care over designing their mailing lists they will send them to patients for whom the letters are in quite inappropriate.

Explain that Your daughter is a case in point. She is under care of the hospital and been regularly seen. You are not aware of any plans to transfer her care to the GP having turned 18 but if that is so then it needs to be handled in a planned manner. Sending "Final Notices" with threats of removing medication are not appropriate. They must be aware that her insulin is life sustaining and removal of it would have profound consequences. They must be aware of the effect that messages of this sort would have on somebody with her other conditions.

Finish up by asking for her name to be removed from the mailing list for this message and suggest they look carefully to ensure that there are no others who have received it in error. Also suggest it would be helpful if your daughter could be sent a message saying that previous messages were sent in error and she would not be sent any more.

Take the line.... you clearly have a problem with your system and I want to help you to get it right ..... rather than shouting and hollering about their incompetence.
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Thank you, I was thinking of something like that, they are much more likely to take notice if it’s constructive criticism rather than just a rant. I want to get across that I’m aware that there are people with less life-threatening conditions who are stockpiling medications that they no longer need, and there may be some people who need many reminders to get checks that they need. But when the medication in question is life-sustaining, and removing it would cause certain death, then there is never going to be a time when they don’t need it, and threatening to remove it is not an appropriate way to go about things! I will mention my daughter’s mental health, thankfully at the moment she’s in a much better place than she was a few years ago, but if she wasn’t, or didn’t have support in place, I dread to think what such a nasty letter could do to her.
Then I want to mention the following. My daughter has been under hospital care since she was diagnosed at 6 years old, and up to now the GPs have been quite happy to just let the hospital get on with it. Why should this change just because she’s an adult? If they need to tick a box somewhere to prove that the relevant checks have been done, can’t they just use the hospital letters as evidence of this? If the hospital were planning on discharging her back to GP care then they would write to the GP and tell them, but that isn’t going to happen because she’s on pump therapy which requires specialist support. I will include what you said about can’t they have a marker for anyone who is on a medication that is life-sustaining, that a softer approach is more appropriate. And while we’re at it, can we stop the pointless need for having to phone them to request that repeat prescriptions be reinstated after 12 times for such medications. Yes it only takes a phone call to sort it out, but again it’s time taken that shouldn’t be necessary!

I’m aware that’s a bit jumbled and some of the wording not quite right but I’ll work on it before I send it. Thanks again to everyone who has commented 🙂
 
I think the problem with my surgery and accepting what is in the letter from the diabetes clinic is that they don't just get money for doing the tests but also for the results of the test - I think they get more for patients in control (with lower HBA1c). Therefore, they need to complete a field in a form with the results to get this money. This is easy if they request the tests. A non-medical admin person can be taught which numbers they are looking for in a standard letter which they see every day.
However, when the tests are done at the diabetes clinic, all they receive is a non-standard letter which may include the results somewhere or might be about something completely different. It requires someone to read and understand the letter and fill in the relevant field about the test results in my GP records.
It seems ridiculous that the way to "simplify" this process is to make everyone generic and invite us in for more tests and reviews. It simplifies the process for them and their admin team who do not understand letters from endocrinologists. But it make it a real pain for their patients.

It reminds me of the old process my diabetes clinic had of arranging blood tests. These had to be scheduled by me to be done at the GP surgery 2 weeks before my next appointment. I needed a form which listed which tests to be done so I was given the form the last time I saw the diabetes consultant: usually more than a year before is was needed.
Once, I mentioned how smug I felt that I had not lost this form and was told my smugness was justified because most patients lose or forget their forms. For decades, no one had stopped to think that their process was broken if it didn't work - it was the patients' faults not theirs.
 
helli said:
I think the problem with my surgery and accepting what is in the letter from the diabetes clinic is that they don't just get money for doing the tests but also for the results of the test - I think they get more for patients in control (with lower HBA1c). Therefore, they need to complete a field in a form with the results to get this money. This is easy if they request the tests. A non-medical admin person can be taught which numbers they are looking for in a standard letter which they see every day.
However, when the tests are done at the diabetes clinic, all they receive is a non-standard letter which may include the results somewhere or might be about something completely different. It requires someone to read and understand the letter and fill in the relevant field about the test results in my GP records.
It seems ridiculous that the way to "simplify" this process is to make everyone generic and invite us in for more tests and reviews. It simplifies the process for them and their admin team who do not understand letters from endocrinologists. But it make it a real pain for their patients.

It reminds me of the old process my diabetes clinic had of arranging blood tests. These had to be scheduled by me to be done at the GP surgery 2 weeks before my next appointment. I needed a form which listed which tests to be done so I was given the form the last time I saw the diabetes consultant: usually more than a year before is was needed.
Once, I mentioned how smug I felt that I had not lost this form and was told my smugness was justified because most patients lose or forget their forms. For decades, no one had stopped to think that their process was broken if it didn't work - it was the patients' faults not theirs.
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The blood test forms we are now given have printed on them 'Hand written tests will not be accepted' so I wonder if they had people adding things onto the form.
My GP had 3 goes at a form as he kept thinking of extra stuff so had to keep reprinting it .
 
Leadinglights said:
The blood test forms we are now given have printed on them 'Hand written tests will not be accepted' so I wonder if they had people adding things onto the form.
My GP had 3 goes at a form as he kept thinking of extra stuff so had to keep reprinting it .
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Thankfully, my blood test requests are now sent electronically so there is nothing to print and another tree is saved.
And, more importantly, no pieces of paper to forget/lose.
 
Hello All

So we’ve been to the practice, receptionist was very helpful. She said the letter came from a “recall team” which my daughter has presumably been added onto automatically when she reached 18. She understood exactly what the issue is and has sent an email to them asking for my daughter to be removed from the list and explaining that we have all the checks done at the hospital. I had a copy of the next appointment letter with all the details of which clinic she’s under and the lady took note of that too. No guarantee that it will work, but we’ve tried. She also gave me the email address for the practice manager to write to about the letter and agreed with what I said about it being too harsh. So now I’ve got to draft up the email, trying to get all my points in without waffling on too much! I shall do a first draft, see if daughter wants to add or change anything, and then send it when we’re both happy. Thanks for all the tips everyone 🙂
 
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