The Public Facing Pathway

The Public Facing Pathway  launched on 18 September 2024, at a Collaborating for Good event in Birmingham, at the Aston University. This Public Facing Pathway will empower individuals, their family and carers to learn about the support available at each stage of a person’s sight loss journey.

Background

The Eye Care Support Pathway launched in November 2023, and is a framework developed by RNIB and partners across the sector, including Thomas Pocklington Trust, the NHS, social care organisations, the charity sector and the public, to use to support the transformation of eye care and eye services.

The framework sets out why we need to integrate non-clinical support into existing eye care pathways. The report shows what people require at every stage of their eye care journey. Both the report and framework have been co-produced with people with lived experience of sight loss, eye specialists, organisations in the third sector, the NHS and social care bodies.

From the moment someone realises that “something isn’t quite right” with their sight, through to diagnosis and being able to live confidently and independently, with their condition, people will have access to the information and support they need.

Bhavini Makwana, Campaigns and Projects Manager at Thomas Pocklington Trust and Chair of BAME Vision, chaired the Public Facing Pathway Committee, who all developed this pathway into a resource which can support by providing useful information, tips on what you can do at each stage, and whilst waiting in between appointments. It has useful resources and stories from those who can provide lived experience, reducing the feeling of isolation and hopefully providing a sense of not going through it alone.

Bhavini shared:

“Being told at age 17, that I would go blind, and that it could be in a matter of years, months or even weeks, horrified me, left me feeling devastated and like my world had collapsed around me. There was no family history of Retinitis Pigmentosa, and the diagnosis came as a complete shock to my family and I. There was no signposting, to any service, charity or peer support and I fell into a downward spiral of isolation, depression and felt there was no point being here if I was going to be a burden and dependant on my family for the rest of my life. I was just told – ‘there is no treatment or cure and there is nothing we can do. You will just have to wait to go blind as this is a deteriorating eye condition.’”

That is why a Public Facing Pathway has now been created by those with lived experience and those close to them. The Pathway can be used to self-advocate for practical, emotional and mental support, as well as to ask to be referred to support services like the Eye Care Liaison Officer, Rehabilitation Officer, for a Certificate of Vision Impairment (CVI) or to local peer support. The pathway will allow for better awareness of what can be available and the types of questions you can ask an eye care professional at different stages in your eye care journey. It is a tool which can be used by those directly living with low vision or sight loss, parents, families, carers or friends to support the individual or to help advocate on their behalf.

There are four stages to the Public Facing Pathway:

1. Having my initial appointment
2. Having my diagnosis confirmed
3. Support after my diagnosis
4. Living well with my condition

Between each stage are periods of waiting. In addition, there are three themes which apply right across the Public Facing Pathway. These are:

1. Understanding their eye care journey – what is going to happen, who they will be seeing and when.
2. Understanding their diagnosis – knowing what condition they have, how to manage it and what it might mean.
3. Accessing emotional and practical support – knowing how to get in touch with people and organisations that can help them manage to live with their condition, with confidence.

The Pathway will aim to provide not only tools which can be used to self-advocate for the right support at the righ time, but will allow individuals and their families to understand some of the professionals who can support outside the clinic, useful questions to think about and ask your eye care professional and find out more about the possibilities of living with a vision impairment or during periods of treatment, etc.

There are too many people not receiving the right support at the time it is needed, and people are not aware of what to ask, so this pathway will support with this.

“The original consultant I saw, a recognised expert in his field, delivered diagnosis and discharged me, in the same appointment: my first clinic appointment since discovering I had problems with my sight.

To learn that you are losing your sight is devastating enough in its own right, but to be told that there would not be any follow-up was incredibly distressing.  On leaving the clinic I was not told that I could be referred to a low vision specialist, nor was I signposted to local or national sight loss charities.  They didn’t even tell me that there was an ECLO downstairs that I could talk to; it was very much a case of go home, Google your condition and deal with it.” – shared Matt Harrison, East Midlands Engagement Manager.