Sense branch benefits - join us
Sense was originally the Rubella Group, founded by the late Peggy Freeman MBE and the late Margaret Brock MBE, in 1955, whose daughter and son respectively were born with congenital rubella syndrome.
More parents joined, and the group created a newsletter to share problems, ideas for solutions, and new equipment – while working to make positive change. These founding principles of mutual support and empowerment have been at the heart of Sense for 50 years.
Today, Sense branches continue this tradition by organising events that enable families and deafblind people to meet, socialise and share experiences.
Together they campaign for better services and opportunities and share information among their networks of families and individuals.
Life as a deafblind person, or being the parent, carer or family member of someone who is deafblind, can be challenging and feel isolating at times. Branches provide an excellent way for people to combat this isolation by enabling mutual support. There are currently eight Sense regional branches or groups and one national branch.
Most branches were set up by parents of a deafblind child, but the national Hearing Sight Impaired UK (HSI) branch are led by people with sensory impairments, and branches may also involve friends, volunteers and interested people. Groups can be small or large, meet monthly or yearly, or have long-standing or more recent members.
The branches’ role and activities range from tackling people’s isolation to influencing Sense policy and providing a focus for campaigns. Fun is never far away through social and fundraising activities including Saturday clubs, family weekends, quizzes, bingo, 10-pin bowling, croquet afternoons, sign and swim, pub lunches, picnics, walks, snooker games, and opera performances.
All branches are part of Sense and sign a branch agreement with the organisation. Branches have a voice within Sense and are often consulted on developments. They benefit from support and advice from Sense staff, while running themselves and fundraising for their own activities.
A problem shared
"At times of great pain and loss the group can be very supportive."
Mandie Lewis’s daughter, Jen, 26, is deafblind and now lives in a Sense home in Birmingham. Mandie became involved with the Sense Avon branch from its beginning in 1986. The branch comprised parents with young children as well as friends and professionals.
"It was a place to get support from people who understood," said Mandie. She recalls her delight when Jen, four, first stood up. "You share these outwardly minor yet absolutely phenomenal milestones - and it gives hope to people who haven’t yet reached them."
Difficult feelings are also shared and the group can help parents who have a devastating experience, such as when a child dies. "At times of great pain and loss the group can be very supportive. We all lean on one another to get through it."
And there are good times too. Mandie describes how a new parent was amazed to find the group laughing. "She said it was wonderful to hear these parents of profoundly disabled children telling jokes. It’s another form of support, and a very precious one."
Support takes many forms
The Essex branch run a monthly day club which consists of mostly older deafblind people (aged from 50-89 years) who regularly meet and talk. The club often partakes in a variety of activities such as music, aromatherapy, walks and visits.
Support takes many forms - one member brings her post to be read; for others it’s about discussing problems and sharing successes.
"People get power from being able to talk about problems. Someone will usually come up with a solution," said Peggy Keeble, who organises the day club. Three people who attend are also involved with social services planning teams, so the group has its say about local services.
"Alone it can be very hard, but together we achieve more."
Groups can also act as a springboard for going further – working for better services. Provision traditionally has been meagre, and it is grassroots energy that fuels many developments.
Sue Turner, Kent Branch Chair, said: "Personal experience gives a fuller understanding of the problems. Alone it can be very hard, but together we achieve more. Different talents come into play. One person might be a great listener, very good at empathising and giving emotional support, another might be a player in the public arena – ace at fundraising or campaigning for a new service."
This mixture of talents, harnessed to a real desire for change, has produced some impressive results. For example, families in the Kent branch lobbied for residential provision and were prime movers in the establishment of a residential unit in Maidstone. Branch members continue to push for local amenities and the best kind of housing for people with learning disabilities. They also persuaded a local volunteer bureau to include a separate category for sensory impairment.
"Small things make a difference in the end," said Sue.
Leisure and support
Over the years the South West, Devon branch has notched up results and achievements, such as organising holidays for young deafblind people, and purchasing two holiday caravans on the Devon coast as well as making a major contribution towards setting up the first residential service in Devon.
It also supported the unique Cafe 55, run by volunteers who are deafblind in Exeter. The Devon branch has recently evolved into a group - a less formal version of their formal selves - but still welcomes families and new members who are looking for mutual support opportunities in the Devon area.
The East Anglia branch set up a leisure library containing toys and activities for older as well as young deafblind people.
Sense Essex and Kent branches, supported by the Holidays and Events team, organised hugely successful family weekends in Hertfordshire in 2011 and 2012.
Deafblind young people and their siblings enjoy leisure club activities while parents and carers have a break and learn about local services and new developments in topics such as welfare benefits, Children’s Specialist Services, and available legal support.
Sense Avon formed a parents’ resource and toy library within a year of first meeting. Threatened with eviction they found a new base in Kingswood, and the combined energies of branch and the wider Sense organisation led to the formation of Woodside Family Centre which today hosts branch meetings, Saturday clubs, a toy library and other activities.
A national perspective
HSI (Hearing and Sight Impaired UK) are a national branch whose committee meets regularly to plan campaigning activities and social events. Many members of the group, although not all, have Usher syndrome.
Their campaigning activities focus on issues that affect them. The quality of hearing loops or background music on the radio are among many issues around accessibility.
Recent socials have included a trip to Westminster Abbey, the Tower of London, and Buckingham Palace.
If you are interested in finding out more about Sense branches or are interested in forming your own branch, you can contact:
Josie Bell, Family Liaison Officer
9a Birkdale Avenue, Selly Oak, Birmingham B29 6UB
Tel: 0121 415 6744
Textphone: 0121 415 2720
First published: Wednesday 30 May 2012
Updated: Tuesday 30 June 2015