How the Acquired Deafblindness Forum brings deafblind people together

From small beginnings in 2002, a flourishing network of forums are bringing older deafblind people together for friendship and support, to share information and to make sure they receive the help they are entitled to. Here’s how it happened:

During 2002 staff in the outreach team at Sense had begun to identify and work with a number of people with acquired deafblindness across our region, especially in Lincolnshire and East Anglia. We asked these people what help they would like from us and many said they would like Sense to support them to meet up with other deafblind people.     

It was clear that many people felt very lonely and isolated because of their dual sensory loss. Imagine how long each day must seem when you cannot read a newspaper, watch the television or telephone a friend, especially if you live on your own or your partner is only home in the evenings.

There were various clubs which people could join, like groups for pensioners, or clubs for people with a visual or hearing impairment. But even if they could physically get there, they couldn’t join in because of their communication difficulties.  

We didn’t have any funding for a forum at this time, but there was obviously such a strong need for people to get together that we just had to get creative. We used small amounts of funding we had raised locally to hold ‘pilot’ forums twice a year in Lincolnshire, Peterborough, Cambridgeshire and East Anglia. They met in all sorts of places: village halls, town centres, gardens, coffee shops and shopping centres – you name it.

Each deafblind person who came along was offered communication support so they could fully participate. In the first part of the day, information was provided on things like how to get an assessment under the deafblind guidance, or safety advice from the Fire Service. There were also demonstrations of equipment related to sight and hearing loss with the opportunity to try things out.

This was followed by lunch and a social activity in the afternoon. This part of the session was equally important because it gave deafblind people the chance to socialise with one another and make links which they could then pursue between forums, for example by exchanging emails.

When we evaluated these pilot forums we received very positive feedback from the people who attended them. This gave us the evidence and momentum we needed to work with John Trevelyan from Sense fundraising  and Liz Duncan, Head of Acquired Deafblindness, to make a bid for funding in 2006 from the Department of Health under their section 64 grants programme.

We were hugely excited to hear that the bid had been successful, which enabled us to appoint two part-time co-ordinators for three years until June 2010, one for Lincolnshire, the other for East Anglia. We could offer nine forums each year in each area, to be attended by up to twelve deafblind people.

We recognised that the forums would generally support older people with acquired deafblindness. It was also important that we provided people with information from a whole range of sources so that they could advocate for themselves for an assessment of their needs and for appropriate services. This would reduce their social exclusion and help them to keep their independence.

It was equally important that individuals could receive support from other deafblind people who were in the same position as them. Getting out, meeting other people and having an enjoyable time are vital for people with acquired deafblindness. The social events have included sensory experiences such as an interactive talk on the scent of roses and a jam and honey tasting session. We have had sensory quizzes and a reminiscence event.

The forum members have been able to socialise, talk about their lives and exchange information on equipment that they have found helpful. For example:

• Jane showed us her colour detector that she finds useful when shopping for clothes.
• Peter gave us a moving account of how he has been affected by changes in his eyesight and how this has limited his access to information and news from the outside world. 
• More than eight years had passed before Ethel had been able to cash in her Marks and Spencer’s Voucher. At a local shopping forum and with the help of a Sense volunteer she was finally able to get to Marks and Spencers and spend her voucher.

Not everyone feels happy about speaking out around the table but at a recent communication forum we practised deafblind manual. Everyone joined in and by the end of the session felt confident to use these skills to meet new people and share information about themselves.

There have been many positives

• 115 older deafblind people now attend the forums
• It has been highly beneficial to their confidence and self-esteem to have an enjoyable time in the company of people facing similar difficulties, with appropriate communication and human support.
• People have made new contacts and friendships from meeting at the forums and now offer each other support between meetings, especially by email.
• Many people have now had specialist assessments under the Deafblind Guidance, and now receive appropriate services and have been provided with assistive technology.
• They have had access to specialist resources such as large print books, audio tapes, computer software and speech-to-text. These can be invaluable tools in helping people to reduce their sense of isolation. Individual sessions have been arranged to help people to use their assistive technology.
• People have had practical help with their hearing aids, such as having them re-tubed.

And one negative…

• It hasn’t always been easy attracting sufficient volunteers to help with the forums, particularly in Lincolnshire.

The feedback we have received from the older people strongly demonstrates the value of forums and that the need for them is ongoing, so we will be exploring every funding avenue to enable them to continue and develop into other areas of our region from 2010!

Authors

Just like the forums, this article is a team effort. It was written by Christopher Farrow who is a forum member; Sue Davies, Sense East Deputy Regional Director (Outreach); Megan Mann, Practice development Worker (Older People); and Diane Lambert, Forum Co-ordinator for East Anglia.

What the forum means to me

“I have attended Sense forums over the last two years and have really grown to enjoy the experience. Before having this opportunity I was unable to share my thoughts and feelings with others who had the same dual sensory loss and experienced similar difficulties. Now I see quite a lot of the members outside the forums as friends. We email each other regularly.

The forums take different formats. We have information sessions about technology or medical issues or we can choose a topic to discuss. The social part of the forum is just as important, as we relax in each other’s company. Sometimes we enjoy a meal together or entertainment is arranged.  As the forums continue the feeling gets stronger and as a group we have bonded, so now we are all friends helping each other along.

Some of the group have visited me at home. We have a bite to eat and then I show them some of my equipment that helps with deafblindness and we talk about our daily struggles. As a result of the forums, life for me is much better. 

Having forums benefits both Sense and deafblind people. Attending a variety of venues means that we have to cope with things like eating out and going to the loo in unfamiliar places. Sense staff are there to support us and it means that we can grow in confidence as we go out and about doing normal activities. It also means that Sense staff have a true picture of life with deafblindness from the perspective of those attending. I am looking forward to another year of the forums so Sense, please keep up the good work.”

Christopher Farrow  

Good practice in running a forum

The forums are a way for older deafblind people to receive the latest information, to be consulted and express their views. They should be responsive to the needs and requests of those who attend, and create a safe environment for consultation, decision making and action. 

The forum members:

• Shape the format of the forum
• Decide the pace of the meeting
• Have clear communication systems that meet their needs
• Support each other emotionally
• Share practical information relating to deafblindness
• Form their own support networks.

Sense staff

• Should audit venues to make sure they are accessible
• Practice good communication techniques
• Apply guiding skills in a variety of settings
• Listen to the needs of the deafblind people
• Listen and learn about the personal experiences of deafblind people
• Facilitate learning opportunities
• Evaluate the effectiveness of the forums
• Respond to specific needs that have been identified. For example, setting up a communication sub-group.
• Respond to individual’s specific needs as identified at the forums. For example, applying for funding for equipment.