ABOUT US
OUR AIM
To improve the wellbeing of children with disabilities, of their parents and of their brothers and sisters.
WHAT WE ARE
The Golden Freeway is a new, online mutually supportive social Drop-in Centre. It is welcoming, secure, always open and free, but only to members, that is families who have a child with a disability. It helps relieve their isolation, both as families and individuals and to manage the complex array of problems these devastating conditions bring.
OUR OPERATING PRINCIPLES
We have four: Always ask customers what they want, we don’t assume we know Test before using. Evaluate progress regularly Maintain a continuous dialogue with customers to encourage feedback
THE NEED
Looking after a child with a disabling condition is very challenging. Many problems come unexpectedly, and everything takes so much longer than normal. The result is that increasingly parents become house bound, lonely, isolated from the community. Pressure mounts, sleepless nights, a broken home, inadequate support is what life holds for many families in the UK.
PRESENT SERVICES
Society seems unconcerned, offering only “Cinderella Services” as the Audit Commission described the position as recently as 2003. That said, there are several other initiatives in the field which are trying to improve things for these families. None is addressing this challenge from the same perspective as we are. In fact as we become established, we shall be able to complement several.
HOW MANY CHILDREN SUFFER FROM THESE CONDITIONS?
It is estimated that 100,000 children in the UK are affected by one of the physical conditions the major ones being; childhood cancers; cerebral palsy; cystic fibrosis; metabolic disorders; muscular dystrophies; and unintentional accidental injury. If psychological, mental and learning difficulties are then added, the total grows to around 700,000
HOW DID WE START?
Back in the early ‘90s, Professor Al Aynsley-Green, then Head of the Department of Child Health, University of Newcastle upon Tyne set up a new charity, The Children’s Foundation. Its aim was to build a new Child Health Research Institute, with the objective of increasing the range and depth of the Department’s research into childhood ailments.
His successor, Professor Sir Alan Craft initiated research into the needs of families caring for a child with a disabling condition. The study, “Families of Misfortune” was published in 1994. It revealed such a devastating picture of what these families have to face that the Department and its partner charity, The Children’s Foundation set up a team to find ways of helping these families.
In December 1999, a pilot study of the new concept of an on line support facility for 71 families each of whom had a child with Duchenne muscular dystrophy (DMD).was opened across the North of England.
The pilot was successful as evidenced by peer reviewed research summarised in
As a result, it was decided to expand, and in due course a new company and charity, The Golden Freeway was set up in 2004.