Accessing Idebenone for LHON on the NHS in England

We’re pleased to share an important update for people affected by Leber’s Hereditary Optic Neuropathy (LHON) in England.

Idebenone (Raxone) is now available on the NHS in England, following its recent approval. Patients in Scotland, Wales and Northern Ireland have had access for some time under their own arrangements.

For many families, the key question has been not just ‘Is treatment available?’ but ‘How do I access idebenone on the NHS?’ This guide is designed to make that process clearer.

Where can I access idebenone in England?

Idebenone is prescribed through NHS England-designated neuro-ophthalmology centres at the following NHS Trusts:

• Moorfields Eye Hospital
• University College London (UCL)
• Addenbrooke’s Hospital (Cambridge)
• Oxford University Hospitals
• Bristol Eye Hospital
• University Hospitals Birmingham
• Manchester Royal Eye Hospital
• Royal Victoria Infirmary (Newcastle)

To be considered for idebenone treatment on the NHS in England, you must be assessed at one of these specialist centres.

If you’re already under the care of a specialist mitochondrial or neuro-ophthalmology service, please speak to your clinical team. They can guide you through accessing idebenone and arrange a referral if needed.

How can I access idebenone if I’m not under a specialist?

Not everyone diagnosed with LHON is currently under specialist follow-up. If that applies to you, you can still access treatment as follows:

1. Contact your GP or local ophthalmologist
2. Explain that idebenone has been approved by NICE for LHON in England
3. Request a referral to one of the specialist neuro-ophthalmology centres listed above

You’re not limited to your nearest centre. You can request a referral to the hospital that best suits your needs.

Once referred, a specialist team will assess your eligibility and discuss next steps.

How is eligibility for idebenone decided?

Access to idebenone is based on an individual clinical assessment.

Specialists will consider:

• Your genetic diagnosis of LHON
• Stage and progression of vision loss
• Your overall health and personal circumstances

Because LHON varies from person to person, not everyone will be suitable for idebenone treatment. However, a referral ensures you can have a fully informed discussion about your options.

Support with accessing treatment

We understand that navigating referrals and specialist services can feel overwhelming, particularly whilst adjusting to sight loss.

If you need help understanding the process, preparing for appointments or accessing support, The Lily Foundation are here for you.