Ten families come together to fight for their children
Two mothers - Peggy Freeman and Margaret Brock - catch rubella while pregnant and their children are born deafblind. They are desperate for support and information.
They contact 10 other families with rubella children and the Rubella Group is born. They have assets of £2.5s.0d (£48 today). Today Sense has an annual turnover of £58 million.
The families share news about their children's development through a newsletter – still going strong as our magazine Talking Sense.
The group start to campaign for help. There is little understanding of the impact of deafblindness and no provision for pre-school children.
They establish links with the then Ministry of Health. Health visitors and welfare clinics start to receive training in the needs of deafblind children.
Word spreads slowly and the rubella epidemics continue
Throughout the sixties, this growing band of families continued to battle for their children. Gradually their voices were heard and the first services for deafblind children appeared.
Many deafblind children and adults are living in bleak long-stay hospitals following rubella epidemics. There are a number of rubella epidemics in the sixties, leaving many families devastated.
Parents and professionals attend the Rubella Group's first conference which does much to raise awareness. The founders visit schools around the country, hoping to encourage special units for children.
A day unit for deafblind children is set up at Hither Green Hospital, south-east London, and another pre-school group is launched in Birmingham by Jessica Hills. Jessica goes on to become an inspirational Chair of Sense for many years.
All through the sixties the organisation campaigns to persuade education authorities to recognise the special needs of deafblind children – and to provide suitable education for them.
Progress on rubella, but the battle continues
As rubella immunisation began, the epidemics became a thing of the past. But the challenges for deafblind people and their families remained ever-present.
The Education Act paves the way for special units for deafblind children to be set up, mainly in residential schools.
The first Sense holiday takes place, led by the Brown family – parents of a deafblind young man. Today 130 deafblind children and adults go on a sense holiday each year.
The first head office is set up in Coventry.
We begin to lobby for suitable education, training and housing for young adults who are deafblind.
The rubella children are now adults. How will they live?
Those first deafblind children from The Rubella Group were now growing up. How would they spend their lives, where would they live? The next stage of Sense’s journey was gathering pace.
We begin discussions with the Government about the release of deafblind people from mental hospitals, where many have been living.
The Ealing Family Centre opens to offer specialist assessments for young children and to support parents.
We begin to provide services to people with acquired deafblindness, including Usher syndrome.
Services begin in Scotland.
The first Sense home – where a group of deafblind adults are supported to live together - opens in Market Deeping, Peterborough.
The Overbridge Continuing Education Centre opens in Glasgow.
Sense's income tops £1 million for the first time.
After years of Sense campaigns, the Government publishes the first guidelines on the education of deafblind children.
HRH The Princess Royal becomes Sense's patron.
Sense takes off
With the Government closing long-stay hospitals as a result of Care in the Community, the nineties sees a huge explosion of our housing provision – as well as other services across the UK. By the end of the decade Sense has 73 group homes providing supported housing and further education for 314 deafblind people.
Sense is established in Northern Ireland.
The Glasgow Family Resource Centre opens.
The first intervenor service begins in Lincolnshire, providing weekly support to families at home. The Advocacy project is launched, helping deafblind people to express their views.
Sense Cymru is launched in Wales.
The Woodside Family Resource Centre in Bristol opens its doors.
Communicator-guide services are set up, providing regular one-to-one support for mainly elderly people.
Sense International is set up to support the development of services for deafblind people in some of the poorest parts of the world.
Sense organises its first mass lobby of Parliament at which over 200 deafblind people and their supporters argue for more support under the banner Yes to Access.
New century, new goals - same values
The new century brings fresh opportunities and services – although the challenges for deafblind people and their families often remain daunting.
Success for the Yes to Access campaign, with the introduction of the Deafblind Guidance. This requires local authorities to assess deafblind people's needs and provide appropriate services.
Sense sets up two new Saturday Clubs for deafblind children and their families in Barnet and near Leeds, as well as new summer play schemes in Sense Northern Ireland and Scotland.
Sense plays a key role in the Early Support Pilot Programme, a government initiative to improve services for families with disabled children under three.
We launch the National Collaborative Usher Study with the Institute of Child Health and the Institute of Ophthalmology. This explores the genetic roots of different types of Usher.
We celebrate our 50th anniversary with a hugely successful family weekend and conference.
Our Fill in the Gaps campaign raises awareness of the needs of older people and how they can be supported.
A new children's service is launched in the North working with 42 children, young people and their families.
Sense hosts the Deafblind International Co-Creating Communication with Persons with Congenital Deafblindness Conference in Leeds. Speakers and delegates came from all over the world to share expertise and innovative practice.
Tough times, great response
With all the financial difficulties and uncertainties these have been challenging times for many disabled people and charities. Despite this Sense continues to push forward.
Gill Morbey, OBE, formerly Chief Executive of Sense Scotland becomes Sense's Chief Executive.
New research commissioned by Sense estimates that there are currently around 250,000 deafblind people in the UK. This number will grow significantly in the next 20 years.
With huge changes coming to the world of social care Sense has been lobbying hard for the needs of deafblind people and their families to be recognised.
Sense International (Romania) celebrated ten years of improving the lives of deafblind people, including 27,000 babies receiving vision and hearing assessments.
Deafblind writers and artists celebrated their work with a series of successful events.
A new Sense report – Belonging and Participation – spearheads a number of projects, including 16 forums for deafblind people around the country.
An international Sense conference about CHARGE syndrome brings together people with CHARGE, their families and some of the top professionals in the field to share experiences, support each other and hear about the latest research and information.
Sense's Children's Specialist Services introduced a new core offer for children with multi-sensory impairments in 2011. The team of staff has grown and we are now able to offer an equal service to families in different parts of the country.
Concerns about proposed government changes and cuts to funding and services found powerful expression in the Hardest Hit protests - as thousands of disabled people and a coalition of UK charities marched past the Houses of Parliament on the Hardest Hit march.
Peggy Freeman MBE passed away in a Nottingham hospital on 15 September 2012, following a short illness. Aged 94, Peggy was one of the parents who co-founded the National Deafblind and Rubella Association in 1955, the organisation which later became Sense.
Supporting deafblind people to participate in arts and wellbeing activities becomes a strategic priority – with a myriad of stimulating, engaging and inclusive activities taking place across the country.
Following a survey of parents, Sense creates the CHARGE Information Pack which contains 28 detailed, authoritative factsheets about this challenging condition.
Deafblind people and families receive extra support and guidance to use the latest technology.
The Sense Service Users Group (SURG) - a group of individuals who use our services and are influencing how they develop – celebrated its first birthday.
First published: Monday 14 May 2012
Updated: Friday 4 April 2014