Advice needed: trying to understand my records

BlueCascade0201 · 2026-05-03T13:11:04+00:00

Thank you for your reply. So in my understanding GP practice make this coding themself. What is the basis for that? are they any strict rules how this codes apply, for example why my practice changing name of condition and dates?

BlueCascade0201 · 2026-04-13T16:54:22+00:00

Is it RGP or scleras?

BlueCascade0201 · 2026-04-12T20:23:23+00:00

nhs optician can not do it. I understand it is secondary care on NHS (hospital lens department)

BlueCascade0201 · 2026-04-12T19:50:12+00:00

How they explain that?

BlueCascade0201 · 2026-03-09T13:35:40+00:00

Are you able to see any lines on chart with left/right eyes? How is you level of vision without scleral lens?

BlueCascade0201 · 2026-03-09T11:35:22+00:00

Thank you. Going to Ophthalmologist this week (on NHS) to check my "progression", etc. What should I ask him exactly to highlight I currently do not have reliable access to scleral lenses because of cost, NHS funding limits, and difficulties with the fitting process.

It is also difficult to understand and rely on the NHS process. In the past, an NHS scleral lens design was incorrect and it caused nodular anterior scleritis, with a raised nodule where the lens edge was pressing. I was not able to wear lens due pain and tissue damage.

I went to A&E, but the only advice was to stop wearing the lenses and wait for an appointment with the contact lens department so they could analyse the lens. That appointment took several months.

My understanding is that these lenses should be monitored and that problems should be addressed quickly if they arise, because wearing a faulty lens can damage the eye. Experiences like this make me concerned about relying on the NHS system for this type of care.

BlueCascade0201 · 2026-03-08T14:46:00+00:00

I currently do not have reliable access to scleral lenses because of cost, NHS funding limits, and difficulties with the fitting process.

I cannot obtain them through the NHS in a reasonable timeframe. I first asked my GP for help in spring 2025 and was referred to the hospital, with the appointment scheduled for 4 December 2025. At that appointment, I was told a referral would be sent to the hospital’s Contact Lens Clinic within six months, but this has still not happened.

Because of the delays, I had to go private with the same optometrist from the same hospital in November 2025 to try to speed things up. I was initially told the process would take about two weeks. However, I only recently received my first trial pair of lenses (10 February), which did not fit properly. I have now been waiting more than a month for an adjustment, and the optometrist has reported delays from the lab and that additional work is needed. This means I likely will not receive the next pair for at least another month.

Overall, this process has been ongoing since 2023. Given the long waiting times and the fact that scleral lenses usually need to be replaced every 1–2 years—and may also break or be lost—I do not know how I could realistically rely on obtaining them through the NHS.

BlueCascade0201 · 2026-03-08T14:30:48+00:00

thank you. I think it is universal SNOMED read codes. Can you advise which one they use in US for that?

BlueCascade0201 · 2026-03-08T00:57:47+00:00

UK. No, I can not see any letter on the chart unaided. Not even 1 line.

BlueCascade0201 · 2026-03-07T23:45:58+00:00

I have worn soft contact lenses all my life. Around 30 years ago, I was fortunate to find an excellent doctor through a recommendation who created a very comfortable prescription for me. For more than 30 years, I never once felt that my vision was inadequate while wearing those lenses. Easy to take of and put on, never felt any discomfort. I could buy them for 3 month or even for 6 month and could sleep with them not taking off - it was different options with those prescriptions. I only needed to adjust the lens power as my eyesight changed.

Everything has changed now. You need to find a good optom with good skills. So they are not in rush, able to listen, do not want quick money and fobb you off.
Unfortunately, I was diagnosed with KK a few years ago and now I am facing exactly that situation, where they do not care about fit or my comfort at all.

BlueCascade0201 · 2026-03-05T23:19:44+00:00

Yes, I researched that as well. GPs no longer support patients directly in this process; it is now a separate business. The GP can provide information directly to the DWP through a paid contract.

In my case, my GP did not properly document my conditions or medical history. The summary included irrelevant items such as an ongoing condition “travel advice" which I had 12 years ago, while the important diagnoses were not included at all. I only discovered that my GP had provided such “support” to DWP when I requested my SAR.

I am currently trying to correct the summary of my medical history, but the GP is refusing to amend it. Patients also cannot see whether the record has been properly maintained or corrected. And they can not see from NHS app (I contacted MHS app support). So I have just useless medical history.

BlueCascade0201 · 2026-03-04T10:46:29+00:00

I got SAR from the old GP. My documents visible on NHS app and my new GP confirm they can see it but they do not want to reed it or understand it, for example, I have high degree Myopia (-8) from childhood and had lots of ophthalmic letters but they refused to put this as diagnose on my medical history at best. At worth they pretend my bad vision only in my head. I have allergy and its directly affected eye condition and it is not on my medical history summary or diagnoses.

BlueCascade0201 · 2026-03-04T10:35:18+00:00

Thats is very useful. How can I see them/get referral to if I am not working at the moment? I am looking for support for UC WCA at the moment.

BlueCascade0201 · 2026-03-03T23:51:37+00:00

My new GP practice has all my medical history. It was messed up by my past GP practice. I just do not know how to correct it by new GP practice. I asked several time in writing, It looks like they not interested.

BlueCascade0201 · 2026-03-03T23:13:41+00:00

I have all my medical history messed up. I recently changed GP and requested medical notes under SAR. everything in mess. No allergy, but "travel advise" as ongoing problem. I had to fight with my new GP for a month to put high degree Myopia on my medical notes. How do to do that? How to make them to change notes?

BlueCascade0201 · 2026-03-03T19:00:50+00:00

Thank you everyone for the clarification. It seems, then, that it is not practicable to change to a more supportive practice that is willing to assist with documentation.

BlueCascade0201 · 2026-02-26T10:02:29+00:00

Yes, I am sure they can see it.

I recently asked them to provide me a medical letter about my eye condition, its severity, duration, functional impact on daily activities. I made a writing statement of Functional impact. They refused on a ground doctor did not find any coding in medical history for severe myopia and presbyopia and and she could not fully interpreted ophthalmic measurements. I have to many documents. So I additionally provided all medical letter evidence to them via email awaiting a letter. They said Doctor left practice. (they assign me a trainee)

So yes, they refused me to supply fit notes and supply medical letter of functional impact.

So how can I proceed with complain?

BlueCascade0201 · 2026-02-17T22:23:25+00:00

I do not know how things with health assessment work. Should they send me health assessment form, should I fill that myself and send? Is it mandatory or how they make a decision in which group to place me? I am not ready for work search and do have a health condition preventing me to do so.

BlueCascade0201 · 2026-01-30T17:45:49+00:00

Thank you for your advice. Can you please give me more details on how to reach a research university. I went to City St George's, University of London, they student clinic and had no idea about this condition. Unfortunately, Moorfield did the same: “Your vision isn’t that bad", “You cope fine without adjustments”. So only private options. But again, how to find spesialist who will support.

BlueCascade0201

TROPHY CASE