NICE Clinical Guidelines FAQs for patients

The National Institute for Health and Care Excellence (NICE) has spent three years reviewing how AMD is diagnosed, treated and monitored, and what information and support should be provided to people with AMD. The result is best-practice guidance which should apply to everyone. As part of that process they’ve looked at the evidence behind each recommendation – things like whether one drug is better value for money than another, or whether people are more likely to lose their sight if treatment is delayed for longer than two weeks. The Guideline should end some differences in treatment between eye units and other healthcare professionals about when and how people should be treated for AMD, meaning that treatment is more consistent.

  • Where in the UK does it apply?

NICE Clinical Guidelines only apply across England and Wales but are usually adopted in Northern Ireland as well. In Scotland, a different body, the Scottish Intercollegiate Guidance Network (SIGN), creates similar Guidelines. SIGN may be influenced by decisions in NICE Guidelines but the NHS in Scotland has no obligation to follow them.

  • If my vision is better than 6/12, will I be treated?

The new Guideline states that anti-VEGF treatment for eyes with wet AMD is clinically effective even before your visual acuity drops below 6/12, the level at which you must stop driving. Depending on which drug is used, it may also be cost-effective.

The guideline does not say you should receive anti-VEGF treatment if your vision is better than 6/12 and does not approve or recommend the use of Avastin to treat wet AMD. So it opens the way to treating these patients but does not guarantee treatment, or change the status of Avastin.

  • If my vision is worse than 6/96, will I be treated?

In the past we have heard of people being refused treatment because their visual acuity is worse than 6/96. The new Guideline says that doctors should consider stopping treatment if it isn’t working and you continue to develop “severe, progressive loss of visual acuity” or there is no prospect of your sight improving. But it also states that doctors should consider treating eyes worse than 6/96 if it could help your overall visual function – for example, if it’s the better-seeing of your two eyes.

  • Can my doctor change or stop my treatment without consulting me?

The Guidance is clear: Doctors should “ensure that patients are actively involved in all decisions about the stopping or switching of treatment” – so if you don’t understand why a decision has been made, do ask.

  • Can I ask to be changed from Lucentis to Eylea (for example)?

In developing the Guideline, the authors looked at the clinical effectiveness and safety of the anti-VEGF drugs available at the moment and found that there was no significant difference between them. However, doctors are told to consider switching anti-VEGF drugs if there are practical reasons for doing so – for example, if it can be given less often and that makes it easier for you to attend appointments.

Doctors should also “ensure that patients are actively involved in all decisions about the stopping or switching of treatment” – so if you don’t understand why a decision has been made, ask.

  • Is there any point registering as SI/SSI if I am still having treatment?

The Guideline recommends that doctors offer certification of visual impairment as soon as you become eligible, even if you are still having active treatment.

  • Can I get other treatments apart from anti-VEGF injections?
    • Thermal laser therapy for dry AMD is no longer recommended as it can cause sight loss.
    • Photodynamic therapy is no longer recommended for treating wet AMD on its own, or alongside anti-VEGF treatment except as part of a clinical trial.
    • Pegaptanib (Macugen) is no longer recommended as a new treatment for AMD – but if you are currently receiving it, you should be able to continue until you and your doctor agree to change or stop.
    • Injections into your eye of corticosteroids also shouldn’t be used alongside anti-VEGF injections.
  • What should I ask my doctor when I see them?

The Guideline states that you should be given information in accessible format at your first appointment, and whenever you ask for it after that. It should cover:

  • Information about AMD and likely timescales
  • Who to contact if you need to change your appointment
  • What to do if your vision gets worse
  • Other support you are entitled to, like support groups, parking permits or helplines

They should also discuss with you:

  • What AMD is, what type you have and what causes it
  • Things you can do to slow its progression
  • Possible complications like Charles Bonnet syndrome
  • What you need to know about driving
  • Treatment options, including possible benefits and risks
  • Who to contact for practical and emotional support
  • Where your appointments will be and how long you’re likely to wait
  • How to register as sight impaired (and why you might want to)

Take this list with you to your next appointment to help you remember anything you want to ask.

  • Was the Macular Society involved in developing the guideline?

Yes, Cathy Yelf, Macular Society chief executive, was on committee which developed the guideline.

  • Did the Macular Society comment on the draft guidelines?

Yes, when the draft guideline was put out to consultation, we put together a group of staff and members to develop comments.

  • When do hospitals have to adopt the recommendations?

NICE provides advice and support to help local organisations put the recommendations into practice. There is no specific deadline for implementation and it can take many months.

  • What if I find the recommendations are not being followed?  

NICE clinical guidelines inform what health professionals do but they don't dictate it. If you feel that the guidelines are not being followed, we would suggest first taking this up with the optician or ophthalmologist to enable them to explain their reasons for not following the guideline recommendations.

You can always call the Helpline to access our advocacy service who can help you get access to treatments to which you are entitled.

Background

Once NICE guidance is published, health professionals are expected to take it fully into account when exercising their clinical judgment. However, NICE guidance does not override the individual responsibility of health professionals to make appropriate decisions according to the circumstances of the individual patient, in consultation with the patient and/or their guardian/carer.

A court ruled in 2014 that CCGs are under an obligation in public law to have regard for the NICE guidance and to provide clear reasons for any general policy that does not follow NICE guidance. Where treatment is given outside of the guidelines, healthcare professionals must fully document the reasons for non-compliance in the patient’s medical records.