Launch of VINCE

55 delegates from the length and breadth of the country came together on 17th October 2007 to launch a new network dedicated to raising awareness of the need for counselling and emotional support for those with visual loss.

Many of the delegates were already service providers, others attended hoping to gain more insight into what service models were available, and which funding streams could be tapped into. Counsellors, emotional support workers and chief executives of local societies for the visually impaired were joined by representatives of Vision 2020UK, and heard a rousing keynote speech by Don Curran, Chair of AMD Alliance International, who described to the audience the impact sudden sight loss had on his life, and how vital it is to have appropriate emotional support.

VINCE's mission statement is threefold:

• To develop collaborative working between counsellors and emotional support service providers.
• To share good practice, service developments, evaluation and research outcomes.
• To influence the development of counselling and emotional support services for adults, children and families affected by sight loss.

The day started with Anita Morrison-Fokken, Director of Low Vision Services at Birmingham Focus explaining how the idea for a network came about as a result of informal contact between Birmingham Focus, Birmingham Counselling Service for Children with Visual Impairment and their Families, Macular Disease Society Telephone Counselling Service and RNIB Emotional Support Services.

This led to a survey of local societies and national sight loss agencies, which indicated that the vast majority of agencies do not provide any formal emotional support or counselling services, despite consistent demand on services that do exist.

Mary Norowzian, RNIB Emotional Support Services, highlighted that rates of depression are at least twice as high among older visually impaired people than in the general population, and that those with depression are less likely to use any rehabilitation services.

Provision of such services is very patchy across the country, even though the need for counselling and emotional support is recognised by NICE, the Department of Health, and is recommended in the Progress in Sight National Standards of Social Care for Visually Impaired Adults as well as in the Low Vision Services Recommendations for Future Service Delivery in the UK (Standard 4.3.7).

Mary's presentation also investigated what people mean by "emotional support services". Different types of service delivery models were mentioned, and discussions later in the day also investigated the need for accredited and monitored services to protect both the providers and the service users.

A shared evidence base would help towards demonstrating the benefits of counselling and emotional support, even if most of the outcomes are currently based on anecdotal reports.

The importance of recognising that not just the service user may be in need of such services was also mentioned. The role and the needs of parents of children who are blind or partially sighted, as well as people who have a supportive role such as partners and families was acknowledged.

Dennis Lewis, Macular Disease Society (MDS) gave a personal account of his experiences at the time of his diagnosis. He shared the impact that his loss of vision had, and mentioned three recurrent themes voiced to him as a counsellor, and that he personally was no stranger to:

• "I am fraud" - although registered blind, many people still have navigational vision. The difference between registrable blindness and total lack of light perception is still not widely understood.
• "I am stupid" - I can't read and I am clumsy and knock things over
• "I am burden" - my wife is my chauffeur, I'm led on to trains, pub toilets are a nightmare...

Dennis stressed again the importance of including family and carers.

After lunch, Susan Dale, RNIB Bristol shared an audio-narrative entitled "Knitting in the dark", a collaborative research project undertaken as part of doctoral research with Bristol University. It movingly described the experiences of two ex-counselling clients who responded to the question "Is there anything you would like to share with others about your experience?" Presented in prose form, the presentation brought to life many themes - of the shock of diagnosis, the impact upon personal relationships, of Charles Bonnet hallucinations, of ambivalence towards using a white cane, and of the painful yet often enriching process of thinking about individual identity.

The afternoon finished with a session that allowed feedback from the work in the morning and focused on the way forward for the network. There was much consensus on the need to develop, promote and support VINCE and the delegates voiced clearly a need for a joint knowledge base to aid both service delivery and funding applications.

The success of the day was not just the opportunity to meet with others who are dedicated to providing this much needed service, but that Vision 2020UK offered a webpage for VINCE.

This left us in the enviable position of trying to find someone to manage the forum and develop this page. Pete Torkington from MDS rose to the challenge and offered his services. I understand discussions are well underway for the creation of the knowledge base via this website.

VINCE is not just a talking shop. It is an example of how dedication and enthusiasm can be harnessed to make real changes to the way we deliver low vision care.

• Anita Morrison-Fokken
• Mary Norowzian

Conference Report

VINCE - a developing network to raise awareness of the need for counselling and emotional support and counselling services to people affected by sight loss was launched on 17th October 2007.

Sixty representatives from local and national sight loss charities including counsellors and emotional support workers, service managers and chief executives listened to presentations from a range of speakers and participated in exploratory workshops.

Anita Morrison-Fokken, Director of Low Vision Services at Birmingham Focus introduced the day by explaining how the idea for a network came about as a result of informal contact between Birmingham Focus, Birmingham Counselling Service for Children with Visual Impairment and their Families, Macular Disease Society Telephone Counselling Service and RNIB Emotional Support Services. This led to a survey of local societies and national sight loss agencies, which indicated that the vast majority of agencies do not provide any formal emotional support or counselling services, despite consistent demand on services that do exist.

Anita then outlined the aims of the establishing a broader network which are to:

• Develop collaborative working between counsellors and emotional support service providers.
• Share service good practice, service developments, evaluation and research outcomes.
• Influence the development of counselling and emotional support services for adults, children and families affected by sight loss.

Don Curran, Chair of AMD Alliance International, the keynote speaker for the conference gave a powerful presentation about his personal experience of diagnosis and the impact that bilateral wet AMD had on his life. He outlined the process of recovery from a period of depression and stressed that many people do not have access to appropriate support. Don explained how important it is to have the right kind of therapeutic support, which takes account of the process of sight loss and welcomed VINCE as a voice to support the development of more services.

Mary Norowzian, Senior Manager of RNIB Emotional Support Services, then outlined key evidence regarding the psychological impact of sight loss. This indicates the incidence of depression is twice as high among older visually impaired people than in the general population, yet availability of accessible counselling and emotional support both within primary care and specialist sight loss services is very poor. This is despite a range of policies and guidelines:

• NICE Guidelines for the management of Depression in Primary and Secondary Care recommending psychological therapies such as counselling as one of a range of interventions for depression.
• DH Clinical Guidelines for Treatment Choice in Psychological Therapies and Counselling stating that patients who are adjusting to life events, illnesses, disabilities or losses may benefit from brief therapies such as counselling.
• Progress in Sight National Standards of Social Care for Visually Impaired Adults Standard recommending counselling and emotional support is provided from the point at which a person is told they have a visual impairment.
• Low Vision Services - Recommendations for Future Service Delivery in the UK.

The challenges of defining what is meant by "emotional support services" were considered as was the need for services designed meet the needs of children and young people as well as adults, of parents of children who are blind or partially sighted, and of partners and families.

Dennis Lewis, Manager of the Macular Disease Society (MDS) Telephone Counselling Service, then gave a personal account of his experiences at the time of his diagnosis. He shared how he was told he "will not go completely blind" and how incomprehensible this unexpected news was, without any apparent acknowledgment from the professionals of the impact upon his life.

Dennis explored some of the issues that clients often wish to bring to counselling and in particular described three recurrent themes that are consistently voiced to him in his role as a counsellor, and that he personally was no stranger to:

• "I am fraud" - although registered blind, many people still have navigational vision. The difference between registerable blindness and total lack of light perception is still not widely understood by the general public, and this often contributes to a lack of confidence in using a white cane.
• "I am stupid" - 'I can't read and I am clumsy and knock things over'. Feelings of humiliation and shame are commonly voiced by clients facing the challenge of the day to day in a 'sighted' society.
• "I am burden" - my wife is my chauffeur, I'm led on to trains, pub toilets are a nightmare...issues of dependency and the impact upon partnerships and family relationships are significant and Dennis stressed again the importance of acknowledging the needs of family and carers when developing services.

Following the presentations, a workshop for counsellors and emotional support workers offered an opportunity to identify how a network might assist in the sharing of good practice and in providing peer support to people often working in isolation. A parallel workshop for service managers and executives explored the barriers to setting up and running services and again identified how sharing of knowledge and good practice especially re funding streams can support service development.

After an excellent lunch provided by Concept (an emerging social firm within RNIB that provides work experience for blind and partially sighted trainees) Susan Dale, Senior Counsellor at RNIB Bristol Counselling Service, then presented 'Knitting in the Dark' a collaborative research project undertaken as part of doctoral research with Bristol University. As part of her research Sue invited two ex-counselling clients to respond to the question "Is there anything you would like to share with others about your experience?"

The resulting accounts included excerpts from audio journals the clients and counsellor had kept during the course of counselling. Presented in prose form, the presentation brought to life many themes - of the shock of diagnosis, the impact upon personal relationships, of Charles Bonnet hallucinations, of ambivalence towards using a white cane, and of the painful yet often enriching process of thinking about individual identity.

Positive feedback from the audience demonstrated how powerfully the stories of lived experience can raise awareness amongst service providers and how important it is that these stories are shared and heard.

The final plenary session included feedback from the workshops and focused on the way forward for VINCE, given it is currently 'virtual' without dedicated staffing. There was consensus on the benefits of networking and the need to develop, promote and support VINCE. Delegates voiced clearly a need for a joint knowledge base to aid both service delivery and funding applications and of the need for evidence based accredited and monitored services to protect both the providers and the service users.

Vision 2020UK demonstrated its active support by offering to host a VINCE special interest group on its website, which will soon be available. In their evaluation and feedback many participants offered a number of suggestions and support for taking VINCE forward. A summary of the day and outcomes of the workshops are being collated and will shortly be available to VINCE members along with a delegates contact list.

For further information about the launch of VINCE or to be added to the contact list please contact Dennis Lewis at
Denjohnlewis@aol.com