ABOUT US

OUR AIM

Our aim is to improve the wellbeing of children with disabilities, of their parents and of their brothers and sisters. Our way of doing this is to help them help themselves. We will provide the information, insights, advice, and other 'tools' they might need to do things for themselves. This will help build self confidence and self reliance, so encouraging them to stay positive and in control

WHAT WE ARE

The Golden Freeway 'Village-on-the-Net' is an on line, friendly, mutually supportive community of families, all sharing the same experience of caring for a child with a disability. It is welcoming, secure, always open and free, but only to members, that is families who have a child with a disability. It offers companionship, to help relieve isolation, both as families and individuals, as well as practical guidance to help manage the complex array of problems these devastating conditions bring.

The Idea

The idea of a 'Village-on-the-Net' as a way of helping disabled children and their families is new. Its novelty comes from combining two approaches, namely:-

  • treating both children and families not as patients, but as ordinary people with special needs, in effect as customers. And as customers, we must always ask them what they want, never assume we know
  • using the reach and versatility of both the Internet and Information Technology imaginatively to deliver individually tailored help to a large number of individuals, all in great need.

Our Services

Our services are designed to help all the children, both ill and well, and their mothers and fathers as well as extended family members where appropriate. They are of two main types of service,

  • those which work when people are together in groups, in twos or tens
    most work equally well with either children or adults or both, eg
    • chatting and messaging, open to any member or restricted to a particular group eg boys 11/12 only or mothers only;
    • discussion groups,
    • on general matters, also open or restricted,
    • or on special matters, sometimes led by professional experts, sometimes by expert parents, covering any subject asked for, practical, medical, psychological, or whatever. These are more likely to be restricted but not necessarily;
    • peer group mentoring;
    • an on line monthly magazine for parents;
    • 'Children's and Young People's Clubs';
    • an on line monthly magazine for children;
  • those designed to help individuals,
    • both for adults, such as
      • 'expert over your shoulder' inter-active 'virtual guides'
      • helping with benefit applications;
      • advising about negotiating with employers, eg flexible
      • working;
      • advising how to manage a tight budget;
      • specially designed programmes, such as
      • 'Signposts', Denise Robertson's 'early warning
      • system, which helps plan for the future.
      • The Golden Fleabay, our second-hand swap shop;
      • a secure family appointments diary, which helps a family manage the many professionals trying to see them, thus staying in control.
      • a wide range of information, general and specific including lay language summaries of the latest Medical Advances, by condition;
    • and for children, such as,
      • Michael Heppell has adapted his successful personal development course "How to be Brilliant", as a 'Virtual Guide' for our children

Our Operating Principles

We have four:

  • Asking customers what they want, never assuming we know.
  • Test before using.
  • Evaluate progress regularly.
  • Maintain a continuous feed back dialogue with customers.

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 110,000 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 770,000

How did we Start?

Back in the early '90s, Professor Sir 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. Under the campaigning slogan, "Help put children on the Yellow Brick Road to Health" 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 The Children's Foundation, together set up a team to find ways of helping them.
In December 1999, a pilot study was opened across the North of England. This was to test the new concept of an on line support facility for 71 families each of whom had a child with Duchenne muscular dystrophy (DMD).
The pilot was successful as evidenced by peer reviewed research reported in Health & Social Care in the Community (2004) 12: 25-33
As a result, it was decided to expand, and in due course a new company and charity, The Golden Freeway was set up.