Cataracts Toolkit - RNIB - See differently



Cataracts Toolkit Helping you access cataract surgery in EnglandContents TOC \h \z \t "Heading 2,1,Heading 3,2,Title,1" Introduction PAGEREF _Toc523907445 \h 2What’s happening now? PAGEREF _Toc523907446 \h 2What should be happening? PAGEREF _Toc523907447 \h 3Getting the most from your hospital appointment PAGEREF _Toc523907448 \h 4Take action PAGEREF _Toc523907449 \h 5Contact your optometrist, GP or ophthalmologist PAGEREF _Toc523907450 \h 5Organisations that can help with a complaint PAGEREF _Toc523907451 \h 6Contact the Parliamentary and Health Service Ombudsman (PHSO) PAGEREF _Toc523907452 \h 7Other ways of raising the issue of cataract surgery PAGEREF _Toc523907453 \h 8How RNIB can help PAGEREF _Toc523907454 \h 9IntroductionAre you currently finding it difficult to get cataract surgery in England? Or have you had problems in the past? This toolkit is for you! It provides practical steps to help you access first or second eye cataract surgery. There’s advice about getting the most out of your appointments, and steps to take if your surgery is significantly delayed.Although sometimes your ophthalmologist (hospital eye surgeon) may want to delay surgery for clinical reasons, for example if you have another medical or eye condition, we want to make sure that anyone who would benefit from cataract surgery doesn’t have to face long waiting times or restrictions. You shouldn’t have to wait for your sight to get so bad that you struggle with everyday tasks before you get surgery. We want you to stay independent and to avoid having sight problems for longer than you have to.If you have any questions about your eye health, please contact our Eye Health Information Service: call 0303 123 9999 or email adviceservice@.ukRNIB also has an “Understanding Cataracts” guide () which explains the condition and what you should expect during surgery.Don’t forget to share this toolkit with your family and friends who have cataracts!What’s happening now?Across England, wide variations exist in cataract commissioning policies, which are the guidelines used to decide who gets cataract surgery. This is resulting in surgery being unfairly restricted in some areas of the country, creating a “postcode lottery”.Clinical Commissioning Groups (CCGs) are local organisations responsible for making decisions about the health services provided in your area. They commission services – which means deciding what health services should be provided, who will provide them, and how much should be spent on Gs are under pressure to cut their spending and worryingly, one way they’re doing this is by providing fewer cataract surgeries. Guidance issued by the National Institute for Health and Care Excellence (NICE) in 2017 say that someone’s visual acuity – how well they can see signs and symbols, usually tested by an optometrist (person who examines eyes to detect problems in vision, sometimes also called an optician) – should not be used to restrict access to cataract surgery. However, two-thirds of CCGs are still denying patients access to treatment, by saying that people’s visual acuity needs to be at a certain level before they can have surgery.Hospitals have also been known to delay or cancel operations during busy periods – in January 2018, 15,231 non-urgent operations, including cataract operations, were cancelled, after orders from NHS England, when they were short of bed space. Current waiting times for cataract operations vary across the country.What should be happening?Cataract surgery is proven to be a safe and cost-effective treatment for both eyes.The operation to remove your cataracts can be performed at any stage of their development. However, because any surgery involves some risk, it’s worth waiting until there is some change in your vision before removing the cataract, unless your optometrist or ophthalmologist advises otherwise.NICE guidance (NG77, October 2017) – “Cataracts in adults: management” section 1.2.2 () – states that visual acuity shouldn’t be the only issue in deciding whether cataract surgery is needed. Other matters, such as how your vision and quality of life is affected, must be taken into account, as measuring someone’s visual acuity doesn’t take into account the day-to-day problems a cataract can cause, for example problems with glare and bright lights or judging depths. The NICE guidance has been adopted by the Royal College of Ophthalmologists (the professional body for hospital eye surgeons).So, if you’re having problems in bright light, driving at night, recognising faces, or finding reading, getting out and about, and cooking increasingly difficult, then it may be time to consider having your cataracts removed.Getting the most from your hospital appointmentIf you are visiting your optometrist (high street optician) regularly, they will be able to detect a cataract developing, sometimes before you are even aware of it. You can also arrange an appointment if you suspect you have a cataract. In either case, you can tell your optometrist how your cataract is affecting your everyday life and ask for a referral to an ophthalmologist. Your GP, or an ophthalmic medical practitioner can also refer you for treatment.After being referred to the hospital for cataract surgery, you will be given an appointment to meet with an ophthalmologist in your local hospital to discuss your surgery.You need to make clear to the ophthalmologist any visual symptoms you may be having and how your cataracts are affecting your day-to-day life. If you sound unsure or hesitant about the surgery, then this might be used as a reason to put off surgery, or even not to treat you!Common experiences to relate to them are:your vision has become cloudy or more washed out;colours look duller;edges of stairs or kerbs have become more difficult to see;you feel you need a lot more light to read smaller print;lights seem to glare;you don’t feel safe to drive;car headlights or low sun dazzle you more than they used to;you have difficulty recognising peoples’ faces;activities that you do day to day, such as working, cooking and sewing become more difficult to do because of your vision, even with the correct prescription glasses.You also need to discuss the risks of surgery, and what your vision should be like afterwards with your ophthalmologist. Cataract surgery will not correct other vision problems you have, so if you needed to wear glasses before, you will still need them afterwards.Sometimes cataract surgery will not be offered for medical reasons, for instance:if you are unable to lie flat for more than 20 minutes or would be too unwell for general surgery;if you have another serious eye condition, such as age-related macular degeneration (AMD) or Fuchs’ dystrophy, which increases the risk of complication or means that you would only get minimal improvement in your sight;if you are currently taking a medication that increases the risk of complications;if you are generally at a higher risk of post-operative complications.Take actionIf you’re still having problems getting cataract surgery when you need it, here are some tips on what action you can take.Contact your optometrist, GP or ophthalmologistIf your optometrist or GP doesn’t refer you to an ophthalmologist for cataract surgery, or your ophthalmologist isn’t offering the option of cataract surgery, first ask them to confirm the reasons in writing, letting them know the impact that the cataract is having on your day to day life. As per the NICE 2017 guidance, access to cataract surgery should not be made on the basis of visual acuity alone. If the reason they give is that you’ve already had surgery to one eye, and must wait for surgery to the other, then this is contrary to section 1.6.2 of the NICE guidance, which states that second-eye surgery should be offered using the same criteria as for the first. In either case, this should be pointed out to them.They should be willing to refer or treat you based on the impact that the cataract is having on your day to day life and vision, unless there is a good clinical reason why cataract surgery isn’t suitable.If they still won’t agree to a referral or treatment, you should consider making a complaint about the decision. You should also complain if you think the reason given is wrong, or if you’re unhappy with how you’re being anisations that can help with a complaintAny of the following organisations will be able to help you in making a complaint about a decision that stops you for getting cataract surgery, if you have been waiting a long time for treatment, or had cancelled appointments.Patient Advice and Liaison Service (PALS)It can be helpful to talk to someone who understands the NHS complaints service, and to make sure that you’re taking up your issue with the right organisation. PALS can provide confidential advice, support and information, and can help you to make a complaint. You can find PALS in your local hospital, ask your GP surgery for information, phone NHS 111 or visit the NHS PALS search web page () to find out their contact details.NHS Complaints AdvocacyThis service is independent of the NHS, and they can provide you with advice on making complaints and what your options are. Their advocates are specially trained to assist people with sensory impairments, and can help you make your complaint, should you want them to.To contact them, you can phone their helpline on 0300 330 5454, browse the NHS Complaints Advocacy website () for more information or you can email them at nhscomplaints@.Your Member of Parliament (MP)Although your MP isn’t the person making the decision about when people can access cataract surgery in your local area, they can help make your case and represent your complaint to the relevant body.You can email, phone or write a letter to your MP, either outlining your problem or to request a meeting with them. Meeting face-to-face is usually best to explain more complex issues. All MPs will hold advice surgeries for their constituents, for which you may need to book an appointment in advance. You can let your MP know about your experience and what assistance you need, and they will be able to tell you what they’ll try to do for you.You can find out who your local MP is, and their contact details, by visiting the Houses of Parliament MP search page () and entering your postcode. You can also check in your local public library, or at your local town hall.Contact the Parliamentary and Health Service Ombudsman (PHSO)If, after raising a complaint through one of the organisations above, you still haven’t been able to resolve your problem, you can contact the PHSO, who has the final say. You can also contact their office if you’ve been waiting more than six months for an explanation of how your complaint has been investigated, and information about what’s being done as a result.The PHSO will only get involved if you have been through all the proper complaints process for the organisation responsible. You can phone the Ombudsman on 0345 015 4033, get them to call you back by texting your name and phone number to 07624 813005, or find out more about their services at the PHSO website ().Other ways of raising the issue of cataract surgeryAs well as raising a complaint, there are other things you can do to raise awareness of the problems with delays in treatment for people with cataracts.Your local HealthwatchHealthwatch listens to the views of local people and makes recommendations and reports on health and social care services to drive improvements locally. By contacting your local Healthwatch and sharing your story about accessing cataract surgery in your community, you can help get cataracts on their agenda. You can find your local Healthwatch () by visiting their website and entering your postcode.Write to your local newspaperWherever you live, your local paper is there to report on the issues that matter to local residents like you.One easy way of raising awareness about problems you are having accessing cataract surgery is by writing a letter to the editor of your local paper. Local papers have a ‘letters to editors’ section where letters from readers are published. You can choose whether you want your letter published with your name or anonymously.The Hold the Front Page website lists all of the UK’s daily and weekly newspapers () – remember that space is usually limited, so try to keep your letter to the point, to give it the best chance of being used.If your local paper thinks yours is an interesting story, for example because of the time you’ve had to wait or the impact cataracts are having on your quality of life, they may even contact you to write an article on your situation, which can help raise awareness still further.How RNIB can helpThe RNIB Helpline has a team of helpful experts who will point you to any support or services you need to continue living life to the full, and is available from 8am – 8pm weekdays and 9am – 1pm on Saturday on 0303 123 9999, or via email on helpline@.uk.Our Helpline Advisors can also help if you’d like advice about what to do if you’re having problems getting surgery.If you’d like to speak to someone about your eye condition, contact our Eye Health Information Service through the RNIB Helpline or email adviceservice@.ukIf your local area is restricting cataract surgery, let our campaigns team know – again, just contact us through the RNIB Helpline or via email at campaigns@.uk. Your feedback helps inform our campaigning work to ensure people can get cataract surgery when they need it. We’d also love to hear your experience of using this toolkit, or if you’d like to receive it in an alternative format.Document control tableDocument titleAccess to treatment – cataract surgery in EnglandVersion number2.0Document controller and author(s) (name, job title and department)John Dixon, Eye Health Campaigns Officer, Social ChangeDate approved12 September 2018Approved by (name, job title and department)Helen Lee, Policy and Campaigns Manager, Social ChangeSignature of approverEffective date12 September 2018Date of next review12 September 2019 ................
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