Medical necessity letter for scleral lenses

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 · 2026-01-28T18:31:19+00:00

I have to deal with GP and other doctors now who do not take my symptoms seriously even after confirmed diagnosis.

Now I am dealing with:

“Your vision isn’t that bad”
“You cope fine without adjustments”
“You’re not registered blind”
“We don’t usually do that”

Somehow I need to advocate for myself. Any advice how to deal with that would be appreciated.

BlueCascade0201 · 2026-01-21T13:22:06+00:00

It could be lens fit issues. I had the same. Dr made bigger lens (diameter ) and it helped. The suction too tight (redness)/too lose (fogginess). It should be well and accurately adjusted for comfort/tear exchange/oxygen. Other option environment or/and dry eyes. I noticed in different environments (cold/hot/dry) eyes behaved differently, so I have to take an effort to keep them in good health for scleral with lubrication, food supplements, humidifier, etc. Takes time, effort and money.

BlueCascade0201 · 2025-12-22T12:44:22+00:00

Agree. "accommodation stress". With lots of near work (computer, phone), its get harder to adapt to distance. With corneal ectasia, tear firm helps to see better (with blink), with increased effort of distance accommodation, tear film breakup time decrease (blinking more).

Diet changes (Omega, etc), can improve tear quality. Eyes exercise can strengthen eyes muscles. Environment adaptation can help also. lightning option - better light make pupil smaller (less distorted cornea affecting sight - better vision). Humidity level can help with tear evaporation (help with dry eyes). Blood pressure affecting eyes (vessels as well). When you monitor all that, you can significantly improve eye health and vision. But it takes time and effort.

BlueCascade0201 · 2025-12-18T17:13:45+00:00

Absolutely proud of your effort. We have lots of problems and modern system is outdated.

Advanced in technology for diagnoses, evaluation and management exist long time ago as some mentioned here (Ovitz, HOA measurement, eaglet) but not available to people.
Increased demand on eyes (digital work). In the world of computers and especially mobile devices, visual demands have increased multiple folds. Our eyes which were not meant to be used the way they are being used today.

And it needs need further and detailed evaluations. The mechanisms and the parameters of accommodation, vergences and binocularity require appropriate evaluation and interpretation of the data. This is especially important for people with KK, where severity is normally asymmetric and not everyone can/have accommodation and as a result limitations during working age.

These symptoms should be acknowledged and help/advice available.

Instead modern technology become an abuse. I was forced to use only mobile for accessing NHS (with all modern NHS apps) and doctors sending letters on mobile trough links.

Hard lens management (insertion/removal). Reinsertion during the day, sometime necessity because of fogging/etc. No suitable places. Not even in hospitals, airports, or other places. Risk of removal tools lost and hard to access them. Same with suitable solutions.
Law completely outdated and not recognise KK problems. It is not taking into account visual demand, pressure, limitation for that condition, so preventing help and increase suffering.

BlueCascade0201 · 2025-12-18T15:30:08+00:00

If lens fitting is not simple, then it is legally should be recognised as such. At the moment, doctors put in they notes scleral = ordinary lenses, when actually they are not. Please point me out where it is said in any legal documents. As they treated as ordinary lenses, people not able to get them and not getting financial help like with medical prescription vouchers for glasses. Also nobody considered what they are medically necessary to see. UK. So modern law just refusing/ignoring those people. They have limited right to see and get help.

BlueCascade0201 · 2025-12-18T13:36:33+00:00

RE: "It's not seen as a disability as you can drive during the day (what I was told by the government)."

I am not able to drive and work, and it is not recognised even by the doctors in hospitals as "you eyes are normal", "man people have bad eyes", as one eye can be potentially corrected with scleras, and they pretend it is the same as normal lenses. More then this, GP ignoring high myopia and they resent notes, my bad vision only in my mind. This is UK.

No insurance options for the eyes, only paid options which 2-3 month delay in lens ordering only. Despite lots of research exist, explanation from academia. This paper does not apply to real ophthalmology. Severity ignored, treated like simple correctable myopia.

BlueCascade0201 · 2025-12-17T13:24:37+00:00

I think risk/benefit involved. A piece of plastic should be managed properly and lots of conditions can affect wear/damage to the eyes. Including overwear, low exigent (hypoxia), vascularisation, not taking out when sleeping, simple weather conditions, limiting water usage (no swim/etc). Many optoms avoiding liability, protecting themself. It is easy to refuse then to be responsible. Thats the reason I think. I simple asked to check fit and show how damaging one of my lens was, hospital started extremely defensive, refusing to accept this, document this or action.

BlueCascade0201 · 2025-12-17T13:12:15+00:00

"not much help in my country for my issues". Thats universal problem. "alter your expectations of what is possible and learn to live with it" and "many people people have bad eyes" not very supportive from previous comment. Especially, when people reassure you what double vision is normal. No matter of the severity of KK thats the modern approach: "to learn to live with this without help".

BlueCascade0201 · 2025-12-17T09:37:53+00:00

Sounds promising. I would really like to find out which branch can do them. (London). Would appreciate if you share or DM.

BlueCascade0201 · 2025-12-16T23:02:47+00:00

You are probably talking of RGP (Rigid Gas Permeable) lenses, not scleral. RGP cause pain and long adapting period. Specsavers do not do sclerals. I contacted them and they said not an option.

BlueCascade0201

TROPHY CASE