‘Introduction to Advocacy’ Course Trainers: Insert name Provided by OPAAL UK ( Older People’s Advocacy Alliance) 1

Location of facilities Domestics Mobile Phones Course timings Fire procedures Lunch arrangements Location of facilities Tea Breaks Other Needs?

Aims Macmillan is working with OPAAL in a pilot project aimed at providing advocacy support to older people affected by cancer. We have discovered that the older a patient, the poorer their experience. Macmillan is keen to look at the potential impact of independent advocacy for older people in the cancer pathway. This training focuses on how you can support older people affected by cancer & understand how advocacy can be an effective tool in supporting individuals through cancer experiences.

Introducing Macmillan Support Services Macmillan Support Line (MSL) – information & emotional support. Macmillan Cancer Information nurse specialists ( CINS) Macmillan publications – comprehensive range. Macmillan Benefits Helpline & Benefits advisors. Macmillan Grants Cancer Environments – plan & build cancer treatment & care centres Self Help & Support – put in touch with self help & support groups, small grants & information. Support for Carers & Support Centres & Mobile Centres – practical & emotional support. Training & Research to improve cancer experience/ services

Macmillan Support Line (MSL) Can provide or signpost for: Data Needs assessment Provide listening ear Impart information MEDICAL (CNIS) (cancer nurse information specialist) Symptoms /treatment Clinical info/ medical Pain Welfare Rights Macmillan financial & benefits & information advisors

Evidence A number of recent inquires & commissioned studies around cancer care have been undertaken -. 1. Macmillan cancer support commissioned a study in order to better understand the extent, cause and nature of discrimination and inequalities in cancer care focusing on individuals who identify themselves as belonging to one or more of four specific disadvantaged groups: Those who experience socio-economic deprivation. People from ethnic minority groups. Older people. People from lesbian, gay, bisexual and transgender groups. The research was conducted in late-2010 by midlands-based equalities and human rights charity, brap, 2. - Report of the all party parliamentary group on cancer’s inquiry into inequalities in cancer stated -. “Our inquiry found clear evidence of unacceptable inequalities in both the experiences and outcomes of cancer patients.”

Definition of Inequalities in Cancer Cancer inequalities can be defined as the differences between individuals’ cancer experience or outcome which result from their social-economic status, race, age, gender, disability, religion or belief, sexual orientation, cancer type or geographical location.

Fact Britain is an ageing society and by 2034 it is forecast that 23% of the population will be aged 65 or over and just 18% aged 16 or under. According to the NCEI just over half the cases of cancer diagnosed in 2003-5 in England occurred in people over 70, and over one-fifth in people over 80 years old. Cancer survival decreases with age and there is evidence that older people’s cancers are investigated and treated less intensively. ---------------------------------------------------------------------------------------- Office for national statistics (June 2010): aging: fastest increase in the ‘oldest old’.

Findings According to research published by the NCIN in June 2009, as many as 15,000 people aged 75 and over die prematurely from cancer each year. In general, older people with cancer receive less intensive and less radical treatment than younger people. While some older people may in general be frailer, have other illnesses (co-morbidities) and may present later than younger people, others do not. In the APPGC inquiry, Joanne rule, co-chair of the national cancer equality initiative (NCEI), pointed to the lack of a comprehensive assessment of older people to measure fitness for treatment. She added “the data suggests ageism explains the degree of under treatment.”

Disempowerment Examples of how & why older people affected by cancer can feel disempowered: * Older people are concerned that decisions regarding their treatment lack fairness and transparency. They frequently feel that they are made unduly aware of the costs of treatment and whether they merit the outlay. Older patients and carers lack adequate information and knowledge regarding their cancer care. This is compounded by trusts’ patchy and inconsistent signposting to other forms of support, ineffective communication, and exchanges between professionals and patients planned without due regard to privacy, preparation, or adequate time to digest information and formulate necessary questions.

What Older People Affected by Cancer Say About Services Felt there were no choices available to them due to structural constraints – e.g. a lack of money or family support. Wanted to improve their situation but couldn’t contribute equally to the decision-making process. Were ‘pressured’ or ‘forced’ into making a particular decision. Were provided with insufficient information. Knew their situation wasn’t good, but didn’t want or didn’t feel able to improve it. Felt they had no choices available to them in the system (a lack of service options).

Why Advocacy ? What Is It ?

Advocacy -Definition Advocacy supports and enables people who have dificulty representing their interests, to exercise their rights, express their views, explore and make informed choices. Independent Advocacy supports the person regardless of the demands and concerns of others. It challenges the causes and effects of injustice, oppression and abuse and uphold human rights OPAAL

Cancer Awareness -Learning Areas The nature of cancer Symptoms of cancer Cancer diagnosis Primary treatments & palliative care Side effects & long term effects of cancer How stages of the cancer experience may impact physically, socially & financially

Exercise 1 Group topics What is cancer? What are the signs & symptoms of cancer? How is cancer diagnosed ? How is cancer treated? How does cancer affect people during & after treatment?