Sanofi Train the Trainer
Training Programme
Training older people affected by cancer to influence decision makers
Tutors Handbook.
March 2016
1 Day Training Course for Older People Affected by Cancer
Course Facilitator Guide:
This is a course designed to support older people affected by cancer to share their stories and experiences with decision makers, supported by OPAAL and /or the local advocacy scheme they are engaged with. This pack was co-produced by OPAAL and older people affected by cancer during 2015/16 with support from SANOFI’s Gold Award for patient engagement.
AIM AM - Basic advocacy awareness, cancer older people and advocacy awareness, who we want to influence
AIM PM - How we can influence, different models, barriers around influencing and how we might overcome them
Expected Outcomes:
By the end of the training participants will be able to:
1. Understand what advocacy is and how this supports older people affected by cancer
2. Understand the roles of decision makers and how to influence them
3. Understand the issues affecting older people affected by cancer, and establish which of these are most important for decision makers to know about
4. Be able to talk to decision makers about advocacy, issues affect older people affected by cancer, explain about circumstances which a referral to advocacy might be useful, how to refer, explore barriers together with decision makers
5. Know what materials are available to support them in delivering this training
6. Feel confident about delivering training sessions alongside OPAAL or local partner organisation
Resources:
The trainer will need the following resources
· Flipchart and pens
· PowerPoint presentation
· Projector and screen
· Laptop
· Printouts of PowerPoint for attendees
· Film/s downloaded, and speakers
Training Timings: 9.30 to 16.15
Timetable
Timing / Content9.30 / Introductions – group intros, domestics, course agenda,
10.00 / Warm up activity, hopes and fears
10.30 / What is Advocacy?
11.00 / Break
11.15 / Impact of Cancer, issues affecting older people affected by cancer
12.00 / Introduction to decision makers
12.30 / Lunch
13.15 / How can we influence
13:45 / What tools can we use to influence?
14:00 / Barriers to influencing and overcoming these
15:00 / Structure for training sessions
16.00 / Evaluations & Close
Timing / Trainer Notes / Resources
9.30 / Welcome & introductions – Tutor and participants.
Domestics, and also point out course evaluations that will be completed at the end. All handouts referred to are included in this tutor pack.
Course agenda
Hopes and fears/setting individual objectives – ask group to consider course objectives and how they relate to their own goals. What they will need by the end of the day to help them achieve that? Write their wants on flipchart and remove at the end of the intros to refer back to at the end of the day
Distribute HO (handout) on aims & objectives for group / :
PP slide
1
q
Flipchart
2
Handout 1
10.30
11:00
11:15
12:00
12:30
13:15 / Introduction to advocacy, what it is, what it is not.
Talk about local cancer advocacy service, criteria for referrals
Show generic cancer advocacy film www.opaal.org.uk/resources
Suggest further viewing of films in own time (point to youtube link)
Break ( 15 mins )
This session focuses on the impact of Cancer for older people affected by cancer.
Aim – to appreciate that cancer can impact on older people’s lives in many different ways.
Small group exercise : head up flip chart paper with –
Ask each group to discuss & write down what they think the concerns & considerations maybe for older people around each aspect listed here.
Bring the group back together and comment on what they found to be common themes.
Distribute handouts, ask participants to read through these and highlight anything important they might have missed in group exercise
Decision makers
Aim – to understand who the decision makers are that we want to influence (suggested reading for trainer)
Write up on sheet of flip chart paper in advance, add other suggestions for decision makers
Distribute handout
Trainer to talk through who decision makers are, talking about:
· Health and social care professionals
· Commissioners
Set out what work has started with decision makers, what has worked, what has not worked (keep this brief as will revisit when looking at barriers later)
LUNCH ( 45 mins )
Introduce the afternoon’s session, influencing
Explain that the initial part will be focusing on how we can influence, the tools we have to do so, moving on to look at barriers and how we might overcome them
How can we influence?
Group exercise. What is influencing?
Flip up the word ‘ influencing ’. Ask the group what this means to them.
Then ask group to individually write a line or two to explain their understanding of the term ‘ influencing ‘
Follow with PP slide ‘influencing decision makers’ & read through.
Discuss.
Distribute hand out
How can we influence?
Look at common patient/user experience models, has anyone participated?
What were the outcomes? Did they feel valued and listened to?
What can we achieve by telling our stories? / :
PP slide 2-3
:
PP slides
4-5
Film 1 stories
Flipchart
2
Handouts
Powerpoint slide 6, 7
:
PP slide 9, 10
Hand outs
13:45 / What tools do we have
Blog, films, Every Step Of the Way, our own stories and experiences
How can we use stories powerfully?
Case studies on telling stories effectively – respecting other’s opinions, sticking to facts but giving more detail on how the person felt, what would have helped/improved their position – work in pairs/small groups
Any practicalities to consider i.e. how do they want to deliver the training, PowerPoint/flipchart? (Show simple PowerPoint?) Telling stories? / 2
Handout
2
Handout case studies
14:00
14:45
15:00 / Barriers to influencing
Explain that you are going to give out three case studies with varying successes at influencing set out
Discuss how barriers could be overcome in each case in pairs/small groups
Break
Agree structure for training
Each participant has a blank training plan, work as a group to develop an outline for the training session, thinking about how they can draw on their experiences as older people affected by cancer, and key things audiences might need to know about advocacy, how to make a referral etc.
Tutor support is required to support participants to organize their thoughts and to draw a focus on the most important aspects of their experiences that they want decision makers to know
Recap, return to hopes and fears / Handout
Slide 11
16:00 / Evaluations
16.15 / Close
HANDOUTS
1 Day Training – Sanofi Train the Trainer
AIM AM - Develop a basic advocacy awareness and an awareness of cancer, older people and advocacy, explore issues affecting older people and define which are most important to bring across, and look at who we want to influence
AIM PM - Explore how we can influence, different models, what good engagement and influencing might look like, barriers around influencing and how we might overcome them
Expected Outcomes:
By the end of the training, participants will be able to:
1. Understand what advocacy is and how this supports older people affected by cancer
2. Understand the roles of decision makers and how to influence them
3. Understand the issues affecting older people affected by cancer, and establish which of these are most important for decision makers to know about
4. Be able to talk to decision makers about advocacy, issues affecting older people affected by cancer, explain about circumstances which a referral to advocacy might be useful, how to refer, explore barriers together with decision makers
5. Know what materials are available to support them in delivering this training
6. Feel confident about delivering training sessions alongside OPAAL
Physical aspects around the impact of cancer for an older person
· Dementia / Mental Capacity
Mobility
· Transport – accessing, cost, distance
· Loss of faculties – hearing / sight / memory
· Treatment options appropriate for older people’s personal circumstances.
· Back up support. Home care. Particularly those living alone. Isolated
· Travel to treatment – bowel / bladder problems need catering for.
· Support with eating / drinking in hospital
· Assumptions: age v fitness for treatment
· Symptoms can be put down / confused with existing health condition
· Treatment may affect other medical / physical problems
· Length of the treatment programme in terms of time in each session
· Having no relatives or carers to provide support
· May be a need for additional equipment at home
· Practical help required if older person nursed at home
· The patient may not be strong enough to be told bad news (who decides this?)
· Duration of treatment in terms of impact of continued trips to hospital
· The treatment may not be compatible with current medication
· Disorientation – due to length of stay in hospital
· May need physical help for daily routines
· May need special equipment to walk /eat / & in bathroom
· Help to stay in own home
· Long waiting times/ delays in appointment times
· Lack of proper examination
· GP focuses on age related medical issues rather than cancer – sees condition and not the person.
· Communication, both in understanding & ability
· Dislike intrusive examination/ touch
· In general older people hide more than they tell
· What responsibilities do they have and do they feel they want to maintain or ought to maintain? (They may need someone skilled to help them do that and make that decision)
Emotional aspects around the impact of cancer for an older person
· Frightened of the unknown. Self, family etc.
· Doctor knows best belief for many older people, despite what person feels they may be “reluctant” to voice feelings
· Too much information to take in.
· Patients had enough of treatment, would rather not bother.
· Reluctant to or feels disempowered to challenge – just accept what treatment is given
· Consultants – attitudes, protocols etc. difficult to question or discuss fully.
· Specialists disinterested in older people, recent publication data (as with consultants of course, this won’t be all professionals)
· Lack of dignity and respect for older people who rely on carers.
· Patronising older patients
· Can’t challenge, not in a position to negotiate.
· Jargon – exclusive language
· People don’t want to be a bother. ‘ don’t want to make a fuss’
· Media opinion such as,’ why waste money on him he’s had a good innings’ affects the confidence to ask for equal treatment options.
· Worry what to tell the children
· Doesn’t know how to talk about the impact of cancer on the family
· Not understanding what is said but reluctant to ask for explanation
· Genetic implications , don’t want to tell family
· Worried won’t be able to continue responsibilities, lose independence.
· The honest prognosis. To know or not to know.
· Second opinion. How to access
· Questioning the treatment, how to approach this
· Unsure if should have a family discussion around what they want
· Worried that they become a burden on the family
· Wants to be left ‘ in peace’
· Despite nursing need wants to die at home. Fact: 70% of cancer patients want to die in own home.
· End of Life – Advanced Decision statements
Financial aspects around the impact of cancer for an older person
· What financial support is there for patient / family/ carer
· Travel to treatment - will local authority fund ‘appropriate’ transport?
· Will family have to care for older person & be responsible financially for their care?
· Do they make a will? Do they get their ‘affairs in order’?
· If they are going to die, and their wish is to stay at home, against recommendations, will there be financial support.
· How much financial support is the family expected to provide?
· Are prescriptions free?
· Are complementary therapies funded and available
· Is travel insurance affected by cancer diagnosis?
· Any financial implications on pension payments?
· Can the treatment be done at home instead of hospital & funded fully?
· If assessed as eligible for funding how the money is managed?
· Eligibility to claim any benefits and which ones?
· Fact: 45% of household budget to fund hospital visits for 20 -40 consecutive treatments.
· Lasting Power of Attorney (Financial and Health)
Social aspects around the impact of cancer for an older person
· People with learning difficulties, dementia or language barriers have additional needs around social skills
· Coping with effects of drugs when in public places
· Reduced access to independent services /advocates for marginalised groups, such as older people.
· Need to make lifestyle changes
· Effects of treatment on day to day life, drugs etc.
· Impact of treatments leading to disfigurement
· Dealing with side effects, Hair loss etc.
· Accessing spiritual and / or psychological support
· Identifying & attending appropriate support groups
· Limitations on driving /travel/ holidays etc.
· Lack of energy to socialise, withdrawing & becoming isolated.
· May have lived independently and refuses any contact with support services
· May view people & services as ‘ interfering ‘ & does not engage in medical tests/ treatment
· Difficulty dealing with other people’s silences or comments. Sympathy etc. Their difficulty speaking to you. People may “ignore” you as they don’t know what to say.
· You don’t want to keep talking about cancer
· I am NOT cancer
· Need for support to continue activities of their choosing
What is Advocacy?
This Introduction to Advocacy session, and course evaluation was developed for OPAAL by seAp Advocacy Training and is reproduced here with thanks to Val Ford (Director of Training, seAp)