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Over the last few weeks people from the West of England AHSN have been doing in depth telephone interviews with patients or their carers who have used cancer or rare diseases services across the region. Most of these people contacted us after receiving a newsletter or email from their local Health Watch.

We asked people about their experience of services and asked them how they would respond to an offer of genetic testing  as part of the 100,000 Genome Project, as part of which we will be starting to offer testing in the West of England soon.

These were very inspiring conversations in which people talked freely about their experiences, reflecting on the shock of getting a diagnosis of cancer and the experience of cancer treatment or of living with a rare disease. People who had rare diseases themselves had often also experienced genetic testing of family members, and the anxiety that accompanies this.

We were able to gather views about how and when we should ask people awaiting a cancer diagnosis about whether they might volunteer for genetic testing, and how the consent interviews might fit in with travelling to hospital for treatment or tests.

Our contributors spoke of the importance of people having as much information as possible and the value of having a trusted professional to whom they could turn for advice and counsel.

As we now finalise our clinical pathways and start the new services here in the West of England, we will build all this intelligence and experience into our service design. The next steps are that we will invite all these public contributors to join an advisory group to ensure the services have a good start over the coming months.

Very sincere thanks to all who have helped us so far.

Posted on November 10, 2015

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