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How to warn patients in my health area about proposals to restrict dry eye help.

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  • How to warn patients in my health area about proposals to restrict dry eye help.

    I'm in the UK - England. Clinical Commissioning Groups (CCGs) control funding of many aspects of healthcare - including NHS prescription, and I think also referrals to secondary care, i.e. NHS opthalmology.

    MY CCG is currently consulting the public on proposals to end NHS prescriptions for what they describe as minor temporary conditions that can be cheaply treated OTC. They focus on colds and coughs - clearly to persuded the public it isn't serious/ongoing conditions, but have buried further in the documents that they also include dry eye as a "mild" condition.

    I personally won't be hugely affected because I'm already under hospital care with a diagnosis of severe dry eye. But I'm furious that they want to make things more difficult for other patients - and also it's a worrying indication of how they view dry eye, which impacts on people's chances of getting treatment - or even a diagnosis in the first place. I went private (and the person I saw isn't in my local area although does work within the NHS) because they have 6 month waiting lists to see an opth on the NHS (and that's from a urgent referral - because I have complex ocular issues). I dread to think what other people are going through in my area.

    I want to warn other patients about this - because the adverts in the local papers, the posters around the area, and leaflets in GP surgeries all focus on colds, coughs, etc - and lots of people won't read the whole document so won't be aware of the other, sometimes more serious and ongoing conditions they've included, ie. dry eye is not always a minor condition).

    I plan to write to the local paper (they ran a brief advert/article about the consultation - and didn't mention dry eye) raising awareness and warning people. I also want to complain to my CCG about their dismissal of dry eye.

    I find it difficult at times to focus my mind - because my vision is so often unfocused. So I'd welcome any tips, advice, pointers on what to write, articles/research to refer to, and how to make my letters most effective (even before my eye problems, I've always struggled with editing down writing, and being succinct).

  • #2
    Hi Charlie

    Could you satisfy my courisity does your health Insurance pay drops, ointments, LipiView or more for dry eye care?
    Thanks!
    Last edited by MGD1701; 28-Aug-2017, 12:07.

    Comment


    • #3
      You could try posting on dry eye Facebook groups, there's a lot of daily activity on them so people often look there. There may also be a general group for your area.

      DryEyeTalk 2,191 members
      https://www.facebook.com/groups/dryeyetalk/

      Dry Eye, Blepharitis, MGD, Corneal Neuralgia 2,924 members
      https://www.facebook.com/groups/9471307532/

      Dry Eye Syndrome Support 2,226 members
      https://www.facebook.com/groups/dryeyesupport/

      Dry Eye 448 members
      https://www.facebook.com/groups/445958145769859/

      Sufferer due to Toxic Epidermal Necrolysis.
      Avatar art by corsariomarcio

      Comment


      • #4
        Hi - sorry for late replies. Things got pretty bad the past couple of weeks with my eyes. I'm beginning to think I need to yet again find a new opth and I'm so fed up with this!

        Thanks for the suggestion, PhoenixEyes. I'm not actually on facebook but perhaps it's worth setting-up a page for this.

        MGD1701, I'm in the UK so we get some medical treatment and prescriptions on the NHS. You have to pay for prescriptions (unless you're on a low income, a pensioner, child, and a few other exceptions) but it's a fixed price (regardless of the drug price). I get more than one bottle of eyedrops in one prescription - thankfully because I go through them quite fast.

        You are supposed to see ophalmologists (or any consultant) free on the NHS if youre doctor (or optometrist) thinks you need to and they refer you - but my area (like lots of areas in the UK) has long waiting lists to see one, and also when I have seen one on the NHS it has been massively rushed. You can wait for hours in the waiting room, which I'd understand if I got the examination I needed when I was seen, but then they rush through your appointment, often don't listen to you, or test you properly. I only found out my TBUT after seeing a prviate opth (several years after first starting to see consultants!).

        Treatments on the NHS are limited. Sometimes a postcode lottery so depends on where you live. Not sure if lipiflow is offered on the NHS. I was told about by a private opth.

        Comment


        • #5
          Being very short sighted and needing special lenses in glasses and also having dry eye and needing to wear contact lenses to achieve better vusion than my glasses supply, I spend an enormous amount of money on my eyes. I do feel that people with the sort of eye problems that I have are forgotten by the NHS. if I couldn't afford the lenses I'm not sure how I would manage. I feel for people in my position with limited finances.

          Comment


          • #6
            I'm in a similar position (I've replied to you about this and sclerals in the scleral lenses thread). I have high myopia but much less so than you - but also have various other issues with my vision that make my prescription fairly complex. Glasses don't correct my vision properly. Neither do soft contacts. I was happy with rpgs for years - until the dry eye problems made wearing them difficult.

            Also spent a lot of (too much) money on my eyes. Which is frustrating - especially when money is tight. What makes things worse is spending hundreds of pounds on glasses that don't sufficiently correct the vision.

            I can't help feeling people like us should have a higher value voucher towards the cost of glasses or contacts. With what we have to pay £15-20 is barely worth asking for the voucher.

            Comment


            • #7
              Fight for Sight is good https://www.fightforsight.org.uk/, and their Priority Setting Partnership consultation emphasised cornea disorders http://www.sightlosspsp.org.uk/. People with dystrophies, keratoconus, uveitis, autoimmune conditions are represented here.

              Also Moorfields Biomedical Research National Institute of Health Research programme http://www.moorfields.nhs.uk/content...esearch-centre, which asks for patient input.

              RNIB are campaigning strongly on 'Avoidable sight loss' including eye inflammation. They fund the Eye Clinic Liaison Officers, and it is good to talk to them too. I wrote to RNIB twice about their unacceptable Dry Eye page, which is not according to NICE and NHS Clinical Guidelines, but it's still there misleading everyone, so good if more people tell them.

              http://www.vision2020uk.org.uk/ Vision UK is supposed to be developing strategies. Conference costs exclude patient advocacy.

              Would recommend joining local voluntary Eye Trusts and patient groups.

              And reporting to Healthwatch.

              It's been helpful going over the case history with someone with legal training, just for confidence, and Citizens Advice Bureau were good.

              Patient Liaison Service (patient services) had sensible input and cover the whole Trust, not just the hospital.

              If MECS (Minor Eye Conditions Service) is commissioned to treat eye inflammation in high-street chain Optometrists, which are unregulated, and they do not diagnose and treat to NHS standard, then we would report to the CCG Quality Committee, and involve Healthwatch and the Care Quality Commission. Same with taking advantage to pressure-sell drops and treatments. After negotiating in depth with a Public Clinic at a well-known School of Optometry, they confirmed in writing that they do not regard themselves as subject to the University policy on Vulnerable Adults, particularly while selling 'treatments' disguised as medical advice.

              I've found it's important to say 'eye inflammation' and stress 'vision' and 'cornea damage' and avoid 'dry eye', because of funding keywords. 'Eye inflammation' are keywords for prioritising or escalating treatment, and 'ocular surface disorders' are recognised as conditions that can't be neglected. No GP can treat or diagnose, and lubricant drops are on hospital advice, and are on GP budget. Meds on the local Formulary are not supposed to be refused (search on '[your region] drugs formulary' eg http://www.bucksformulary.nhs.uk/about.asp). CCG told me to make an Independent Funding Request to them just for preservative-free lubricant, but the GP then capitulated and supplied on Repeat Prescription. 'Allergy' is the keyword to get alternatives if we are reacting to ingredients like preservatives or lanolin in cheaper eyedrops in chronic use.

              Keywords like 'drug reaction' to meds has effected fast-track appointments and treatment for flare-ups.

              My experience is that where 'dry eye and inflammation' is iatrogenic, they avoid putting this in the NHS Summary Record (get copy of Medical Record from GP, also Hospital Trusts - http://www.nhs.uk/NHSEngland/thenhs/...hat_to_do.aspx), so that needs checking and changing to '... secondary to...' (caused by).

              There is National post-surgery outcomes data collection (see RCOphth website) and we need to be reported by the Ophthalmology surgical Unit with 'vision' and cornea outcomes, not 'just dry eye, use drops'. Increased eye pressure, and risk of (eg on steroid), is 'glaucoma', which effects free treatment.

              Better diagnosis has effected better-funded treatment with CCG/GPs, to meet treatment criteria. Eg changes in the basement membranes of the cornea can be categorised as a basement dystrophy. Lesions in the cornea, 'inflitrates' across the limbus indicating unmanaged inflammation, and any vision loss, effects hospital clinic treatment, according to the criteria https://cks.nice.org.uk/dry-eye-syndrome.

              It's important we seek out and work with the specialist doctors and researchers who are pressuring for funding and better treatment programmes. I think showing them what other centres are doing as a 'benchmark' to improve service has been effective.

              'articles/research to refer to' suggestions:

              Neuropathic pain http://bjo.bmj.com/content/100/1/128 Rosenthal P, Borsook D Ocular neuropathic pain British Journal of Ophthalmology 2016;100:128-134.

              Child blepharitis dry eye
              http://bjo.bmj.com/content/89/4/400.full - Viswalingam M, Rauz S, Morlet N, et al Blepharokeratoconjunctivitis in children: diagnosis and treatment British Journal of Ophthalmology 2005;89:400-403.
              and http://bjo.bmj.com/content/96/7/949.long Hamada S, Khan I, Denniston AK, et al Childhood blepharokeratoconjunctivitis: characterising a severe phenotype in white adolescents British Journal of Ophthalmology 2012;96:949-955.

              More refs at the end of these articles, especially 'Vicious Cycle' work of Charles Baodouin on untreated eye inflammation

              Searches in PubMed for unmanaged cases

              NICE Clinical Guidelines https://cks.nice.org.uk/dry-eye-syndrome#!scenario
              NHS website
              American Academy of Ophthalmology treatment guidelines https://www.aao.org/preferred-practi...rome-ppp--2013 'About 10% of patients with clinically significant aqueous deficient dry eye have an underlying primary Sjӧgren syndrome'

              Tear Film and Ocular Surface Society Dry Eye Workshop Report II http://www.tearfilm.org/ summarises latest research and treatments. I do think the log-in discourages medics from skimming it now we all avoid email spam.

              Short paragraphs are most effective. So the eye picks out main points when it skims the page. Also short summary at start and end. Some medicolegal-ish words that hint neglect or misdiagnosis are useful eg 'overlook', 'unfortunately... progressed...', 'treat according to clinical standards'.
              Last edited by littlemermaid; 10-Sep-2017, 09:49.
              Paediatric ocular rosacea ~ primum non nocere

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              • #8
                Having a major flare-up and so can't be on here long - but just wanted to thank you for all the info/tips/advice above. All so much appreciated.

                Comment


                • #9
                  https://www.surveymonkey.co.uk/r/APPG-Inquiry UK All-Party Parliamentary Group Inquiry 2017 into NHS England eye care services (please complete 15 minute survey for Vision2020UK submission).
                  Paediatric ocular rosacea ~ primum non nocere

                  Comment


                  • #10
                    Thanks for the link. I hope enough patients (including those of us with dry eye disease) complete it - and hope the feedback is heeded and acted on.

                    Noticed RNIB are involved/mentioned. I don't want to knock them because they do such wonderful work (they were incredibly supportive for a family member who is now legally blind) - but I was a bit upset and shocked to see their description of dry eye. They don't seem aware that dry eye can have serious complications for some people - including sight loss, nor how disabling it can be. It's misleading and might encourage some doctors to dismiss people suffering from more severe forms of dry eye disease.

                    Comment


                    • #11
                      Originally posted by CharlieGreenEyes View Post
                      Noticed RNIB are involved/mentioned. I don't want to knock them because they do such wonderful work (they were incredibly supportive for a family member who is now legally blind) - but I was a bit upset and shocked to see their description of dry eye. They don't seem aware that dry eye can have serious complications for some people - including sight loss, nor how disabling it can be. It's misleading and might encourage some doctors to dismiss people suffering from more severe forms of dry eye disease.
                      Yep, it gives a very simplistic explanation of dry eye, although they explain there are three layers to the tear film, it doesn't go into how each layer can be impacted differently. So no mention of meibomian gland dysfunction (oil / lipid layer) or goblet cell deficiency (mucin layer), just "you don't have enough tears or they're poor quality."
                      Sufferer due to Toxic Epidermal Necrolysis.
                      Avatar art by corsariomarcio

                      Comment


                      • #12
                        Guidelines for Pharmacists: 'Therefore, pharmacists and pharmacy teams have a role, prior to establishing the diagnosis, to ensure that more serious ocular pathologies, which might include some of the symptoms of dry eye disease, are not masked by inappropriate temporary relief of symptoms such as using artificial tears.

                        The key questions for pharmacists to ask as part of their differential diagnosis have been identified by the TFOS DEWS II Diagnostic Methodology Committee and are presented in Table 2 [in link]. If any of these questions identify a non-standard dry eye disease response, a semi-urgent referral to an optometrist or ophthalmologist is warranted to exclude other pathology.'

                        http://www.pharmaceutical-journal.co...203352.article

                        It was a Pharmacist and a lady doing temporary work on a cosmetics counter who correctly diagnosed my daughter first. So grateful for kind help from surprising places.
                        Paediatric ocular rosacea ~ primum non nocere

                        Comment


                        • #13
                          Healthwatch England:

                          'The consultation, which started in the summer, will see Clinical Commissioning Groups, which advise local GPs and other services, recommending what should and shouldn’t be prescribed.

                          The consultation is focusing on medicines deemed to be a low priority for NHS funding, and could see items currently available on prescription no longer offered in this way.

                          3,200 items are being reviewed, including products such as sunscreen, laxatives, eye drops and eczema cream. In the future, people may have to buy such things over the counter.

                          The outcomes of this consultation could have a big impact on people who rely on items being made available on prescription. Have your say


                          We’ve created a short survey for you to complete to let us know what you think. We will pass on your responses to NHS England to inform the consultation. You have until Saturday 21 October to complete it.'

                          Complete the survey

                          Paediatric ocular rosacea ~ primum non nocere

                          Comment


                          • #14
                            I still feel so shocked to see eye drops included in the list of "low priority" items. Although I shouldn't be surprised really because my experiences so far have shown that many doctors - including opthalmologists do indeed view dry eye as low priority (regardless of the severity and impact on patient's life).

                            It's more than whether or not the eye drops are available on prescription. It's about the general (dismissive) attitude toward dry eye disease amongst doctors. Which doesn't bode well for getting effective treatment. The constant battle for any kind of treatment is so wearing (it took me 3 years to even get some sort of official diagnosis - and that was only after going private, and even then the 1st private doctor I saw was useless).

                            To be honest I can imagine some patients with other conditions included will also feel horror. I don't know much about eczema but think it can be quite severe for some people - perhaps similar to dry eye with varying levels of severity, and whilst I wasn't actually aware sunscreen was available on prescription I would have thought prescribing it (presumably this is to people on very low incomes and/or with increased cancer risks?) would be far cheaper than providing cancer treatment.

                            I just hope enough patients this will impact on complete the survey and consultations - and hope their feedback is actually taken into account.

                            Originally posted by littlemermaid View Post
                            Healthwatch England:

                            'The consultation, which started in the summer, will see Clinical Commissioning Groups, which advise local GPs and other services, recommending what should and shouldn’t be prescribed.

                            The consultation is focusing on medicines deemed to be a low priority for NHS funding, and could see items currently available on prescription no longer offered in this way.

                            3,200 items are being reviewed, including products such as sunscreen, laxatives, eye drops and eczema cream. In the future, people may have to buy such things over the counter.

                            The outcomes of this consultation could have a big impact on people who rely on items being made available on prescription. Have your say


                            We’ve created a short survey for you to complete to let us know what you think. We will pass on your responses to NHS England to inform the consultation. You have until Saturday 21 October to complete it.'

                            Complete the survey

                            Comment


                            • #15
                              To add to my previous post. You could be forgiven for wondering whether the NHS is deliberately trying to make people it's only temporary and less serious (for most people) conditions such as colds, coughs, nappy rash, mouth ulcers, and insect bites (see list below from the survey). The survey's first question asks whether you or your family have ever suffered from these conditions.

                              NHS England has provided a list of the kind of conditions that these medicines treat:
                              • Constipation
                              • Teething
                              • Acute Pain
                              • Nappy rash
                              • Athlete’s foot
                              • Mouth ulcers
                              • Fever
                              • Haemorrhoids
                              • Oral and vaginal thrush
                              • Ear wax
                              • Head lice
                              • Warts and verrucae
                              • Insect bites and stings
                              • Joint injury
                              • Eye infection
                              • Contact dermatitis
                              • Scabies
                              • Sore throat
                              • Ring worm
                              • Headache
                              • Mild acne
                              • Indigestion and heartburn
                              • Minor burns and scalds

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