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CANCER JOURNEY

Background:
There are 650 new diagnoses of cancer in Mid Sussex but despite national research on the need for, and benefit of, information and support there are no Cancer Information Centres in either Sussex or Kent. Information provision across the county is at best patchy and in some cases non-existent especially for carers and families of cancer sufferers.

The Service:
Cancer Journey will act as a central information point for all people affected by cancer. We will provide information in three ways- a purpose built mobile information unit initially covering Mid Sussex, a website and a telephone helpline available to all areas. The aim of the mobile unit is to take information direct to those who need it, spending one day each week in the local communities. Particular focus will be on older people as they do not access mainstream services as easily as other groups. Using a mobile unit offers a flexible approach ensuring that the service can be modified if required.

The service will be run by a full time Information Manager and a team of volunteers all of whom will undertake relevant training in listening skills, dealing with conflict and confidentiality issues. This training will be provided by Macmillan Cancer Support free of charge.

Information groups.
As a result of a wide consultation process with local healthcare professionals in both the primary and secondary care sectors we have classified the information needs under four headings.

Cancer care - e.g. cancer treatment, coping with possible side effects, lifestyle issues such as nutrition.

Carers information - how to cope, their rights and entitlements, how they can access local services

Financial advice - many cancer patients and carers are not aware that they can apply for non means tested benefits especially the elderly and those with young children.

Cancer prevention - information about prevention, screening and advice for high risk families.

Collaborative working
Cancer Journey is working in collaboration with local healthcare providers and the major cancer charities e.g. Macmillan Cancer Support and the Prostate Cancer Charity to ensure we are meeting the need and that the information that we will provide is of a high quality, is up to date and accurate.

Target Audience
Primary users of this service will be cancer patients and their carers, their families and friends and people who have had cancer, however we also expect to attract people who have symptoms they suspect may be caused by cancer and those who want to reduce their risk of developing cancer. Statistically 1 in 3 people will be diagnosed with cancer in their lifetime; there is a rising incidence of cancer especially in the older population. In Mid Sussex 23% of the population is over 60 years of age and they account for 75% of all new cancer diagnoses.(Thames Cancer Registry), we therefore anticipate that the main users of this service will be in the older age ranges.

Service Usage
This is an innovative service we can only estimate demand– visitors to a national mobile cancer information unit averaged 45 per day when it visited the local area. This is in contrast to the average number of visitors to a static cancer information centre in central London where the daily average was 10 visitors.

As we have been advised that, in addition to our planned direct advertising, the specialist nurses in the local NHS organisations will make direct referrals we have set a target of reaching 3000 people with the mobile unit in the first year of operation, however it should be remembered that in cancer information it is not only the number of contacts that should be measured, the impact of the contact must be taken into account.