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The Big Lottery Reaching Communities Programme Success!!
Family Care and Interactive Support Service
The Niemann-Pick Disease Group (UK) is delighted to announce that our work is to be supported by a grant from the Big Lottery Fund Reaching Communities Programme over the next three years. We would like to thank the Big Lottery Fund for choosing to support our organisation with the grant, for the amount of 172,601, which has given us the fantastic opportunity to enhance our current support service with a new project, entitled the Family Care and Interactive Support Service.
The overall aim of the project is to improve outcomes for families with Niemann-Pick diseases, through the use of interactive technology that will enhance access to support and information services. The symptoms of NPD can often appear, or change, suddenly, as the disease progresses; in consultation with families and healthcare providers, the NPDG (UK) learnt that, although families do get to see, and feel supported by, their local GP or Consultant when they have concerns, it is not always possible to describe or replicate the symptoms or behaviour that was displayed in the home environment. Using appropriate interactive technology, such as webcams and media links, families will have increased access to expert care and advice provided by NPDG (UK)s Clinical Nurse Specialist for Niemann-Pick Disease, Jackie Imrie, enabling them to achieve a more timely response to their questions and concerns.
This project will provide specialist care and support that will assist families in coping with the challenging symptoms of the disease, enable them to communicate more effectively with their health care team, and will tackle the issues of isolation and despair, that can so often accompany a diagnosis of a rare disease, by creating links with other affected families.
The project will start in May 2010 with a pilot scheme lasting six months. We will shortly be seeking five families who would be willing to participate in the pilot scheme, which will help us to determine the potential benefits of this enhanced support service, plus the most effective methods of communication and appropriate equipment. Following the pilot scheme we aim to make this project accessible to all those who wish to participate.
It is our hope that the innovative use of technology at the heart of this project will enable more effective and efficient communication between families and our Clinical Nurse Specialist, and will lead to an improved quality of life for those affected by Niemann-Pick Disease and their families.
If you would like to know more about this project, or if you would be interested in participating, please contact Toni Mathieson at the NPDG (UK) Central Office by telephone 0191 415 0693 or email HYPERLINK "mailto:niemann-pick@tiscali.co.uk" niemann-pick@tiscali.co.uk
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