The Royal National Institute of the Blind

Summer 2012 – Spring 2013

The challenge

Despite being a treatable condition, wet age-related macular degeneration (wet AMD) is still one of the biggest causes of sight loss in the UK and demand for services is rising with the ageing population.

As the leading charity supporting two million people with sight loss, RNIB commissioned The Campaign Company to explore various perspectives of the wet AMD patient journey and to understand why people are still losing their sight to this treatable condition.

We conducted research with patients, carers, clinicians and commissioners across the UK so that nuances in service provision could be highlighted and best practice identified.

How we approached it

Initial desk research was undertaken to understand the condition and its treatment in the UK. Various experts were consulted to provide insights and inform the qualitative research.

In-depth telephone interviews, comprising a mix of open and closed questions, were then conducted with 163 people across the UK including patients, carers, commissioners, clinicians and other who work in the clinical environment.

Patients and carers who took part either responded to national advertisements or were identified through local branches of the Macular Society. All clinical staff, commissioners and other health professionals were contacted independently by TCC. All participants took part voluntarily and anonymously. All interviews were transcribed and uploaded onto NVivo and the responses to closed questions placed into a data framework.

What happened

Our study showed six main reasons why patients are still losing their sight due to wet AMD:

  • Patients’ lack of awareness of signs and symptoms
  • Patients’ lack of awareness of the treatment pathway
  • Delayed diagnosis and ineffective referral pathways
  • Insufficient capacity in eye clinics
  • Insufficient support during the patient journey
  • Weaknesses in commissioning

The conclusions and recommendations from our research directly informed the RNIB’s Save Our Sight (SOS) campaign.

Our study was published as a publicly available report: Don’t lose sight! Don’t delay! Perspectives on the wet age-related macular degeneration (wet AMD) patient journey.