Transcript Cancer Slides

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