The only way to contact my surgery is now through the Ask my GP website.
I do self inject weekly with b12 I using my own supplies which I haven’t told them about. I have also been receiving b12 for self injecting from the surgery at an ever decreasing amount as they keep saying I only need to have one every 3 months. They are now insisting that I only have 3 monthly injections, I emailed to ask for supplies/injections more often, requesting at least monthly injections.
I received a reply from the practice nurse saying that as requested twice before (by a GP I've never even met) that before I can have any more injections I have to have a blood test to determine my b12 levels.
I have a very clear diagnosis of pernicious anaemia and am still left with many neurological problems because of not being diagnosed before the damage was done and then struggling for now nearly three years trying and failing to get the correct treatment following loading doses.
It's a good job I found this site or I dread to think what state I'd be in!
I have emailed back with a very strong reply including stating the NICE guidelines and am still waiting for a reply from the surgery.
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Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists but keep them short.
Thank you for your excellent advice. I’ve had a reply from my own GP that he will look at my records and contact me further afterwards. Taking screenshots of correspondence on the app is a very good idea as I don’t know if any of the comments on there are kept so I will do that.
Another thing to consider is asking permission to record appointments/consultations.
Most doctors are likely to be reluctant to consider this but patients with memory issues, concentration issues, fatigue etc should be able to argue their case for recording appointments on disability grounds. Asking to record an appointment may affect GP/specialist/patient relationship.
Probably best to seek permission in advance of any appointment rather than asking at time of appointment.
I often found when my symptoms were at their worst, I couldn't remember what the GP had said.
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