3) If the national single issue cancer charities are getting it wrong, what could they do to put it right?

As awareness raising for cancer is not working it needs reviewing. Single issue cancer charities should accept there is a bigger picture and put aside turf considerations. The sector needs an objective – to improve the general awareness of cancer, not leave it to individual charities to battle and win for their bit of turf, so one or two cancers are everywhere and others are nowhere. This does not help the public.

 
1.    Audience: There is a need to step back and re-assess engagement with and understanding of the unaffected public, followed by innovation and evaluation of any interventions. More understanding of the unaffected public as a massive group of service users demands a significantly more collaborative approach from the cancer charity sector and, in time, the broader health voluntary sector too.
 
2.    A new model of awareness is needed. The agenda should stop being defined by tumour site and be defined by ‘life stage’ instead. Bundle information for young men, middle aged men and then older men. Do the same for women. A complex menu of twenty or more cancers and advice on lifestyle and screening suddenly becomes six simplified, audience defined relevant categories. The single issue cancer charities must stop feeding the public their whole cancer menu, all the time, each time, at every opportunity, then insist on  publishing polls showing just how ignorant the audience is. This may be because of the way charities do things, not because they lack funds to do more of it.
 
In the ‘life stage’ model there will be repetition of a core curriculum of awareness information across the ‘life stage’ spectrum - know your own body, notice changes (this helps reduce the symptom agenda to manageable size) and when to report them, eat fruit and vegetables, cut down or give up smoking, watch your alcohol, keep up with the exercise, lose weight.
 
To fit this new model are two concepts that need to be grasped. The first concept is that potentially modifiable lifestyle risk factors play out over many years. The second is that symptoms suggest the need for more immediate attention or action.
 
Older people will need awareness messages weighted differently from awareness messages for younger people. Older people need messages about age and symptoms emphasised whilst modifiable lifestyle factors are given a back seat.
 
Younger people need lifestyle factors emphasised, with less emphasis on all symptoms but some attention to symptoms that could be cancers that, though rare, are more likely to occur in young people.
 
If single issue charities insist on presenting the older persons’ symptom agenda to the youngest group they must also acknowledge they are trying to pass on information that has to be maintained, reinforced and supplemented by them for the next 50 years, during which time it still may not have become relevant!
 
3.    Details: The content of awareness messages has to be rationalised with firm agreement to use a core curriculum for cancer awareness. It is only the site specific cancer charities and their affected stakeholders who are hung up on the significance of the tumour site. The public do not need to guess intelligently which cancer might be causing their symptom – all they need to know is that a symptom could be from a cancer and what to do about it.
 
4.    Develop sector wide service delivery models for cancer awareness: Single issue cancer charities, like the rest of us, are facing turbulent times on income for the next decade. Now is the time to rationalise some of the sector with new insight, redesigning service delivery in awareness raising.
 
Single issue charities could band together to create voluntary sector consortia in cancer awareness, to integrate some aspects of cancer charity health promotion across the sector, using content dependent on age and gender but including common risk factors, drinking, diet, exercise, symptoms, etc. Every organisation in the consortium cross refers contacts and opportunities for awareness activity and can deliver an extended, more generic cancer awareness service. There may be the chance to develop a social enterprise business model to earn income to be ploughed back into more cancer awareness services. Cardio- and cerebro-vascular, diabetes, HIV and neurological charities, for example, might also like to join in if the ‘service’ is effective.
 
The cancer charities could collaborate and produce joint information/messaging across all cancers and enjoy economies of scale, shared learning and approaches to hard to reach groups – typically, but not exclusively, older people, BME populations, men and women at socio economic disadvantage. 
 
5.    Attitude: A little less individualism and a little more altruism is required. Single issue cancer charities should think about themselves as partners, not rivals, and think about running some of their PR on awareness in a co-ordinated fashion, keeping their eyes on the bigger prize of a well informed and cancer aware general public rather than fighting turf wars where one or other cancer comes out on top. A life spent paying attention to breast cancer messages is not much use to a women in her late sixties who missed the early symptoms of bowel cancer because she was unaware of the warning signs. Being well informed about one set of particular cancer symptoms or on a limited list of risk factors is not a measure of success. Far from it. It is a crisis of missed opportunities. If a cancer charity’s advice on healthy eating saves somebody from heart disease do they really believe they wasted their time, failed, let down their supporters or wasted donors’ money? If a breast cancer charity is invited to talk to an older women’s lunch club in the north east, who is ‘done down’ because they mentioned bowel cancer or diabetes as well as breast cancer?
 
Single issue cancer charities could be a portal to more cancer awareness in the sector. Men are, so the stereotype goes, poorer at accessing health services. If a man and a cancer charity are in contact – however tangentially this is defined - is it really not possible to nurture the contact and add value with other health information? If a single issue cancer charity works well with a ‘hard to reach’ group they should not keep this to themselves but begin to think how they could act as a Trojan Horse for Health, facilitating access to more awareness from other organisations on a range of health issues.
 
Cancer charities have to make a blunt decision. What does awareness raising mean to them? Is their interest marketing the organisation, or is it health promotion? Both are possible, both are essential, but they need to be separated more intelligently and transparently.
 
Single issue cancer charities rightly regard men and women who have been diagnosed with cancer with respect but should stop regarding 'yet to be diagnosed' men and women as fair game.
 
Awareness raising for cancer is a service to undiagnosed men and women - just like support and information is when delivered to an affected individual. It has to be ethically driven and person centred. The common cancer cliché  ‘early detection saves lives’ is now very old hat. It appears in medical literature about cancer from the first quarter of the 20th century. As we are now in the first quarter of the 21st we really should have learnt by now how to apply this. We clearly have not.
 
Single site cancer charities can contribute by thinking of new collaborations and new… yes! awareness raising projects…. Finding the right way to disseminate information is only the first step. Overcoming the barriers to action is next and the single issue cancer charities have a role there if they care to look for it. If working together to help people become confident visiting the doctor, overcoming embarrassment and fear and advising on what to do about symptoms that persist or recur isn't possible what is the explanation?  
  
It is not the type of cancer that is important in awareness raising. Neither single issue cancer charities nor 48 million adults in the UK can possibly guess which cancer might get them in the end and is, therefore, the only one to concentrate on. 48 million people need broader information. What is important is that people hear, understand and act on awareness messages and improve their chances of achieving a healthy life.  
 
There is a whole new agenda for single issue charities to work together, pooling their resources and experience to improve cancer awareness and evidence base for practice, rather than persisting with methods and messages which have not worked well so far.