iFAQ’s [inFrequently Asked Questions] for cancer charities about their services for elderly people.
Let’s start with this really big overarching far too iFAQ. How should the cancer charity sector develop its role in support, information and campaigning on behalf of elderly men and women, to both augment and challenge the current cancer policy agenda?
First, cancer charities, make sure you can answer the following questions. If you can’t, off top of your head, that’s the evidence that you have a problem ‘seeing’ old people. If you haven’t counted them they haven’t gone anywhere. They do still count.
Data mining in the office
- How many men and women aged 75 and over are diagnosed each year with [insert your cancer here]?
- How many men and women aged 75 and over die each year with [insert your cancer here]?
- How many people do you estimate experience a recurrence of a previously diagnosed [insert your cancer here], once aged 75 or over?
- What is the approximate UK prevalence of [insert your cancer here] in men and women aged 75 and over? The NCIN will have a clue or can help you with a best guess.
- To what extent and which of your support and information services, are used by men and women aged 75 and over?
- How does 5 relate to what you have found answering 1-4?
- To what extent and which of your support and information services, are used by third parties on behalf of men and women aged 75 and over?
- What does your organisation know how to market services directly to this population and indirectly through third parties? What do you know about either groups’ preferences and needs on format, content and nature of communications?
- Do you now think you need a needs analysis, some hypotheses about non-users, and user evaluation in this age group?
I move on, to
People at risk
- What is the state of general cancer awareness, symptom recognition and understanding of actions to take, in men and women aged 75 and over, without cancer?
- What are the lay beliefs about cancer or [insert your cancer here] in men, in women, of differing ethnicities in their late 70s, 80s and 90s?
- How might these lay beliefs influence their actions should they a) ever get symptoms that could be cancer or b) their expectations, if ever diagnosed?
- What context specific awareness ‘content’ should your cancer charity present, to address these?
Points to ponder: How do you assess what the ‘at risk’ elderly population needs to know about [insert your cancer here] and the barriers to them knowing it? How do you TAILOR your message accordingly, to optimise awareness in a way that fits the likely complexity in their health, remembering they have to assimilate similar information on all the other cancers and conditions they haven’t got, in among the conditions they and their partners may already have?
Information and support
- What styling and formats best suit this group?
- How and where should these new services be promoted?
- Assess access, usability and availability of your cancer information and support services. What are the solutions? Quick fix or major rethink? Design and pilot the answers.
Researching ‘diagnosis’ in the elderly
- How many men and women aged 75 and over are only diagnosed when their cancer is advanced? How does this compare to men and women under 75? Are these patient, doctor or system generated delays? Or a combination?
- What is the evidence on late presentation with tardily reported symptoms in the over 75s? What symptoms are they? Is the delay based in fear of the answer, or because they have no idea it might be cancer, or expect so little from the health services?
- When cancer recurs how long had new symptoms been occurring? Was the elderly person adequately followed up and recurrence promptly identified? Were they well informed about what to look for, or what to report, when and to whom?
Access to NHS services
- We already know older patients are less likely to have access to clinical nurse specialists. Find out why and tackle it.
Points to ponder: Is this a failure of systems and processes, referrals, or God forbid, old age aversion in CNS’s themselves? What can you do to advise to commissioners, charity liveried CNS’s and Trust employees and service managers to improve this?
- Aannnnnnnddddd then repeat. See if things are better.
NHS Processes – leads to a campaigning agenda
- Are older patients (>75) more likely to be affected by breaches of waiting times etc. than younger patients? If so, why?
- Are patients aged 75 and over discussed at MDTs? In the same amount of detail, for a similar amount of time?
- Do older patients with cancer have shorter/fewer/more junior consultations than those under 75 during their cancer journey? If so, why, given that their cases are often medically considerably more complex?
- How often is an older person with cancer managed entirely in the primary care setting – when does this happen and what are the outcomes, good or bad? Do they miss out on MDT input, to their detriment?
- Is there a drop off in access to services and specialist supervision when dealing with recurrences rather than initial diagnosis. Is this the same or worse in younger patients?
- Just how well is complex case management of a elderly person with cancer AND multiple co-morbidities working? What is the entire health voluntary sector role in this?
- How well does the NICE guideline on referring cases of suspected cancer work for men and women over 75?
- How many elderly men and women get a clinical diagnosis of cancer rather than a histological one and does this matter? If so, in what way?
- What is the data on how often ‘palliative care only’ is offered to men and women over 75? Is there data that suggests this is a decision taken far too soon? Clearly, sometimes, it would be a totally appropriate decision.
- Is there such a thing as an Oncogeriatric Clinical Nurse Specialist or advisor, cancer specialists in the ‘whole person with cancer’ rather than in their tumours? If not, why not?
Post diagnosis rehabilitation and care
- What is the picture in access, provision and use of all rehabilitation and support services in post-diagnosis and post-treatment phase?
- Ditto at recurrence.
- How good are all cancer services in giving older patients – more likely to be frail or with impairments of ageing - enough time, and all privacy and dignity?
- What effects do travel and distance have on cancer treatment, care and choice in the elderly?
- What is carer experience for older men and women with cancer?
- How much cancer care in the elderly is not delivered within specialist cancer services? Does this disadvantage old people? If so, why, how and how should this be changed?
- Is the number of people over 75 getting recruited to cancer trials a) improving and b) at what rate?
- What is the evidence on communicating and optimising ‘supportive care only’ in this age group?
- What do we know about patient experience in people in their eighties and nineties with cancer? The National Audit Office report of 2005 ‘Tackling Cancer: Improving the Patient Journey’ was indirectly age discriminatory. 22% of people newly diagnosed with cancer are over 80. The report included 4092 responses but only 7% (298) were in the over 80 age group. This improved in subsequent surveys but not by enough.
- Is anyone considering the place of oncogeriatrics as a hospital/community discipline or reviewing oncogeriatric provision and service delivery?
- What issues in care and treatment of elderly people with cancer should commissioners of health and SOCIAL care services be concentrating on? Integration should figure?..........
Media PR and Communications
- What can you do to get old ageism onto the media agenda? Challenge and tackle our youth obsessed culture.
- What can you do to contribute to a re-design of the rhetoric of cancer for this millennium where ageing is so important? You’ll need a whole new cancer vocabulary for cancer and the ninety year olds. Make one.
44 iFAQ’s and I won’t have got all of them. It’s a start. Please don’t complain about what I’ve missed. Just get on answering them - yours which are undoubtedly better, as well as mine, which are I believe, undoubtedly pertinent.