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Generic Health and Wellbeing Events – “How To” Guide Survivorship Network 2018

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Generic Health and Wellbeing Events – A “How To” Guide The Christie NHS Foundation Trust: Recovery Package Implementation Group

Purpose of Paper

This paper details the protocol designed and agreed by the Christie’s ‘Recovery Package Implementation Group’ for the effective and safe delivery of Health and Wellbeing Events (HWBE) for patients ‘Living with and Beyond Cancer’. It is designed to help Health Care Professionals create and embed an effective wellbeing intervention into clinical pathways, where patients are either being treated curatively or living in the long term with managed disease. This paper will include but not be limited to the following areas:        

Aims and Objectives of the HWBE Roles and Responsibilities of staff Managing Referrals Delivering the HWBE – what to expect on the day - presentations Clinical content of HWBEs: What are the key ‘take home’ messages? How best to involve patients and carers in the delivery of these events Issues around equality and inclusion How to successfully evaluate the event

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Authors

Ben Heyworth Macmillan Survivorship Network Manager / Survivorship Network Macmillan LGBT Strategy Manager / LGBT Cancer Support Alliance Tel: (+44) 7917 628 672 twitter: @thismorningcall

ben.heyworth@christie.nhs.uk Kathy Pantelides Physical Health presentation katherine.pantelides@christie.nhs.uk Ann Crook Psychological and Emotional health presentation ann.crook@christie.nhs.uk Paula Daley Patient and Carer Involvement including the “Top Tips� Postcard paula.daley@christie.nhs.uk

Health and Wellbeing Events: Task and Finish Group We are indebted to the following staff and service users who have been instrumental in the design and delivery of HWBEs and this document at the Christie Ann Crook David Wright Wendy Winn Mandy Bell Andrew Bradley Kathy Pantelides Jane Booker Eileen Hackman

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James Turner Paula Daley Dorothy Sugden

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Counsellor, Clinical Support Services (Psycho-oncology) Lead Nurse for Teenagers and Young Adults Nurse Specialist Chaplaincy Coordinator Physiotherapy and Occupational Therapy Manager Clinical Nurse Specialist (Urology) Deputy Clinical Lead Clinical Support Services / Complementary Therapy Recovery Package Implementation Lead Recovery Package User Involvement Coordinator Patient/Carer Representative

Senior Sponsors (Christie Executive Team) Jackie Bird Wendy Makin

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Chief Nurse and Executive Director of Quality Medical Director

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Contents

Aims and Objectives Strategic Context Aims and Objectives

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Who is this event for? “Living with” and “Living Beyond” Generic vs. Specialist Events Advanced and incurable cancer Younger People Patients with disabilities and access issues The ‘Virtual’ Offer Carers

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Roles and Responsibilities Organisational Responsibility / Governance Responsibilities of the clinical team Event Coordinators

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Marketing and Communications

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Managing Referrals Patients who are treated at more than one hospital Procedure for booking patients into the event Confirming Attendance Signing in Sheet Demographic Monitoring

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Logistics Venue Refreshments Marketplace Who’s Who

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On Arrival Introduction Housekeeping Patient Information

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Outline of each session Session 1: What is a HWBE and what am I doing here? Session 2: The Body Session 3: The Mind Session 4: Presentations from Patients and Carers

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What happens at the end of the event?

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User Involvement

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What does success look like and how do we measure this? Predicted outcomes Evaluation Reporting

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Managing Budgets

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Appendix A: Document Checklist

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Appendix B: Demographic Monitoring Form

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Appendix C:

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Evaluation Tool

Appendix D: FAQs Tool

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Appendix E:

Session 1: Powerpoint Slides and Commentary

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Appendix F:

Session 2: Powerpoint Slides and Commentary

Appendix G: Session 3: Powerpoint Slides and Commentary Appendix H: Top Tips Postcard

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Aims and Objectives of Health and Wellbeing Events Strategic Context: The Recovery Package has four main interventions. Holistic Needs Assessment and Care Planning, Treatment Summary, Cancer Care Review, and Health and Wellbeing Events. These elements form part of an overall support and self-management package for people living with and beyond cancer – physical activity as part of a healthy lifestyle, managing consequences of treatment, and information, financial and work support. The Recovery Package is recognised in the NHS England Five Year Forward View and the Cancer Taskforce Strategy which outlines a commitment to ensuring that ‘every person with cancer has access to the elements of the Recovery Package by 2020’. The implementation of the Recovery Package is one of the Trust’s strategic objectives for the period 2018 – 2020. The roll out of these interventions will better support and improve the quality of life of people living with and beyond cancer.

Aims and Objectives of a Health and Wellbeing event: A significant challenge regarding the Recovery Package is the implementation of Health and Wellbeing Events (HWBEs). The aim of a HWBE is to:       

Acknowledge and describe some of the long term issues and concerns that patients who are living with and beyond cancer might encounter, without overwhelming people with information Promote the effective self-management of post-treatment issues and concerns Encourage healthier lifestyle choices, particularly where there is an intersection with recovery Encourage patients and carers to take a more active role in care planning Ensure patients know how to get help, support and advice, even many years after finishing treatment Encourage patients, carers and families to engage with peer support networks. Reduce anxiety

This will be achieved using a variety of methods:    

Presentations from professionals and patients Question and Answer Sessions with Professionals A small ‘marketplace’ of services/information Bespoke patient information to take home including a reminder about our online information provision 6


Who is this event for? “Living With” and “Living Beyond” All patients should be offered some sort of Health and Wellbeing Event or intervention. The type of intervention required will not be the same for everybody. We recognise that for some patients ‘living beyond’ a diagnosis the emphasis is likely to be on promoting and sustaining recovery, and thinking about life after cancer. For others, the emphasis might be on ‘living well’ with cancer, and the experience of cancer as a chronic disease. However, both of these groups might find attending a health and wellbeing event as detailed in this document useful. Generic events vs. specialist events There has been much debate around the usefulness of ‘generic’ vs ‘specialist’ events. Whilst there are some benefits to delivering an event that offers bespoke advice and support for one cancer type, it may be difficult to resource and sustain this type of service for all types of disease. Our ‘baseline’, so to speak, is this generic protocol which can be used for any cancer type. It may be useful to ‘bolt on’ other agenda items or tweak the content to suit a particular disease group if a specialist event is required. It’s worth noting that some of the information and advice delivered in the generic event is around healthy lifestyle choices which apply equally for many other conditions as well as cancer. Advanced and incurable cancers While some patients who are ‘Living with’ incurable cancer in the long term might find some value in attending these events, it is not recommended to refer patients with advanced cancer and a poor prognosis in the short/medium term. A different style of event altogether may work better for patients dealing with advanced disease. This is outside the scope of this document. Young People Younger patients living with and beyond cancer might find these events very useful. We recommend that older teenagers and young adults be accompanied by a carer, family member or clinical support worker. The event is not suitable for children under 16 years. Patients with disabilities and access issues Every effort should be made to ensure patients with disabilities are able to attend a health and wellbeing event. Venues with appropriate accessibility should always be used. For patients and carers with communication issues, such as deaf patients, appropriate steps should be taken using existing protocols. The ‘Virtual’ Offer

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We recognise that some people will be unable or unwilling to attend, and with that in mind, it is appropriate to offer a ‘virtual’ alternative. At The Christie, we are planning to offer the following:   

Live streaming of the events (at least twice a year) Recording of events, and making the presentations available on You Tube The continuous development of resources for patients and carers ‘living with and beyond’, which can be found on the Trust’s website.

Carers Previous pilot events held at The Christie have indicated that up to 40% of attendees are likely to be carers and family members. It is essential that they feel included in the event and that issues encountered by these groups are embedded in the content of the day. We do not recommend having a separate session for carers or family members on the grounds that this would split the group, have implications for the venue (including cost), and potentially increase the running time of the event. An integrated approach is recommended. Roles and Responsibilities Organisational Responsibility / Governance Overall responsibility for Health and Wellbeing Events should be owned by an appropriate clinical division with operational responsibility. At the Christie, this falls to Networked Services. A “Patient Experience Committee” should provide cross-cutting oversight of activity and receive activity reports, evaluations and issues. The committee will escalate issues and concerns as appropriate. Operational responsibility for HWBEs including management of budgets should be owned by a Survivorship Team Responsibilities of the Clinical Team Clinical teams should be able to identify and invite patients and carers to the events, as well as signposting them to appropriate resources which could be on the Trust website, the Information Centre or provided by a third party (e.g. Macmillan). The teams should consider distributing an information leaflet and/or a formal invitation letter. Ideally, a formal clinic letter should be used to invite the patient to the event, complete with joining instructions. Don’t forget to ensure any access issues or dietary requirements are recorded (if you are providing food).

Event Coordinators 8


Each HWBE should have a nominated Event Coordinator. Event Coordinators can be clinical or non-clinical staff. The Coordinator could be an operational manager or project manager. Responsibilities of the event coordinator:        

Manage the registration process for each event Ensure the event runs to time Ensure patients and carers are clearly directed to the venue Ensure patients and carers participate in an evaluation of the event, and that an evaluation report is produced and distributed. Monitors referrals and attendance Catering and refreshments One ‘point of contact’ for attendees and staff supporting the event. Finance

If the Event Coordinator is also a key presenter at the event, if possible allocate some administrative support to assist in the smooth running of the event Marketing and Communications Whilst it is essential that HWBEs are embedded into clinical pathways, as this is a generic Health and Wellbeing Event, we will communicate the existence of these events to patients and carers through the following channels:     

Screens in waiting areas Flyers Online including Social Media Via support groups and other patient networks Via partner organisations

The purpose of these additional communications is to encourage patients and carers to speak to their clinical teams and ask for a referral into the events if they have not been offered one. We do not recommend encouraging patient self-referral as suitability to attend the event should be discussed with a member of the clinical team. Managing Referrals The Event Coordinator is responsible for the management of referrals, which should come from clinical staff across the hospital. A clinician of any discipline should be able to refer a patient or carer to an event. The Event Manager should monitor the bookings to ensure each event is not oversubscribed. Patients who are treated at more than one hospital Generic events should be offered to people who are completing treatment at the Christie, but for some common cancers patients may have been treated elsewhere as well as at The Christie. It may be more appropriate to encourage some patients to access a HWBE nearer to home, or organised by the trust where they will be undergoing follow-up (if one is available). 9


Procedure for booking patients into the event This mechanism will depend on the clinical records system used by the Trust but should be as straight forward as possible. At the Christie, a very simple booking form within CWP or Intranet would enable easy access from a clinic. If this proves problematic, an alternative is to use a third party online event booking system (such as ‘Eventbrite’) which is free to use. In exceptional circumstances where a patient wishes to attend the event and self-refers, this should be managed by the Event Coordinator. The Coordinator may need to annotate the patient’s clinical notes to document attendance at a Wellbeing event. Confirming attendance The Event Coordinator should ensure that a confirmation letter/email is sent to the patient with joining instructions. Signing in Sheet The Event Coordinator should ensure that a register of attendees is taken during the event. Demographic Monitoring Forms A diversity monitoring form should be distributed, filled in and collected during every event. This form should collect standard demographic monitoring information (See Appendix B). Logistics Venue The decision to hold a HWBE in a particular venue is critical to the success of the session. The following issues should be taken into consideration:        

The room should allow for space where people can move around Parking / Public transport access Consideration of peak time traffic issues for drivers Consideration of distance/travel time for participants Availability of refreshments and/or coffee shop Access for wheelchair users and people with reduced mobility and other disabilities. Cost Good access to A/V equipment and technical support

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Christie based Health and Wellbeing Events are taking place in the School of Oncology/Auditorium. Whilst this may give the event something of a ‘classroom’ feel, efforts should be made to keep proceedings warm and informal. Refreshments A light buffet is usually sufficient if the event is being held over lunchtime. Tea, coffee and cold drinks are essential. Marketplace Whilst some Health and Wellbeing Events have an extensive marketplace of stands and services, for the events at The Christie, only the following representation will be offered:    

Cancer Information Centre Christie Smoking Cessation Service Maggies Macmillan Cancer Support

Stands will be situated in lobby outside the Auditorium. Consideration of disease group specific stands should be at the discretion of the clinical teams and the Event Coordinator. It is anticipated that patients and carers will have the opportunity to look at stands and talk to staff during the course of the lunch break. “Who’s Who” Staff should ensure their lanyards and ID badges are clearly displayed. External speakers or guests who are not patients should also be clearly identifiable using name badges. On Arrival Introduction The Event coordinator should introduce the Chair of the event (if it is not them) and the other members of the staff contributing to the event at the start of the session, and act as “compare” for the duration of the event. Housekeeping 

Fire safety

The Event Coordinator must ensure arrangements are clear: Are we expecting a fire drill? Where are the nearest fire exits? Where to assemble outside the building? 11


Breaks

Participants should be made aware of when breaks are scheduled at the start of the session. They should also be informed that it is OK to pop out for any reason at any time during the session. Participants should be asked to respect the confidentiality and decorum of the session and keep noise/disruption to a minimum e.g. turn phones onto vibrate or off. 

Confidentiality

Ensure patients know that they HWBE is considered confidential. It’s important to create a safe space where people feel able to ask questions. Questions pertaining to personal circumstances or problems should be noted but picked up with individuals outside of the session. 

Consent

There are no consent issues to address unless there are plans to record or live stream the event. 

1:1 Support

The Event Coordinator should ensure a private space is available and provide emotional support if required. 

Evaluation

Participants will be asked to fill in a short evaluation form at the end of the event. This will take approximately 5 minutes and should be handed in to a member of staff before they leave the session. The evaluation is anonymous. 

Patient Information and “Top Tips” postcard

On arrival, all attendees should be given a Demographic Monitoring Form (Appendix B), Evaluation Tool (Appendix C), FAQs Tool (Appendix D), a copy of the Life Ahead Plan (available to download from the Christie website) and a copy of the “Top Tips” postcard (Appendix H) which is heavily signposted in the first presentation. Attendees should also sign in at reception, in order to monitor attendance.

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Content Outline The content of each session is based on frequently asked questions from patients, carers and family members. Presenters should frame a generic response that addresses common misconceptions, poor local or national media representation, professional knowledge and personal experience. The event is divided up into four sessions only. Presenters are encouraged to use multi-media, ‘vox pops’, games, activities, quiz questions and other interactive elements to make these sessions as active as possible. Using multi-media resources will allow comments from specialists and experts to be featured without having to invite them to each and every event to speak. We should avoid ‘death by PowerPoint’ (for want of a better phrase). The intention is to be as interactive as possible, and this is highly unlikely to be achieved by presenting each session as a series of lectures. Presenters should use the ideas presented below as guidelines for developing their presentations. The presentations currently being used at The Christie are included as Appendices E, F and G. SESSION 1: “What am I doing here and what happens next?” What is the purpose of the health and wellbeing event? 1. What are the ‘learning objectives’? What do we mean by ‘living with and beyond cancer?’ 2. Cancer in the media – examples of good reporting that can help to demystify living with and beyond. (use newspaper headlines) 3. Introducing ‘the Recovery Package’ – “but don’t be put off by it, or the language!” 4. What is self-management? ”Don’t panic, you won’t be abandoned!” 5. How do we support self-management? – is there a single point of contact? Online resources, signposting to community based services, rapid re-access to clinical services 6. What about my GP? - What is a Cancer Care Review? 7. ‘I’ve been given something called a Care Plan? What is it?’ 8. What are staff expectations of you as a patient? – self-activation, participate in shared decision making, refer to your care plan, goal setting…. 9. Where to get help and advice? 10. “Dr. Google” - Why googling stuff online can be risky! Managing ‘fake news’ 11. What is peer support? 12. Is peer support for me? 13. How do I access peer support? 14. Online communities – what are they and how can you access them? (eg. Macmillan Cancer voices, on social media, and so on…) SESSION 2: “The Body” This session is concerned with physical health following treatment: 1. What are the three pillars of good health? – Diet, Exercise and Sleep 2. Cancer and Food – Demystifying a ‘healthy’ diet. Standard advice around food types. 13


3. Fad diets – what are they and do they work? Fasting – is it good for me? What if I just don’t feel like eating? (or can’t eat) 4. Exercise – “Is it really good for me? 5. “Do I have to run a marathon?” – no – concept of ‘activity’ vs. ’exercise’. What counts as activity? 6. Actually, resistance training is a good idea too – (demo?) 7. What is the relationship between sleep and cancer? 8. “How much sleep should I be getting at night?” and why 9. “What happens if I can’t get to sleep?” – Promoting good sleep hygiene 10. ‘I’m always tired!’ - Managing fatigue as a side effect of cancer treatment 11. Ongoing side effects from my treatment – should I be worried? 12. “What is a late effect? Should I be worried?” 13. “What to do if a late effect crops up?” 14. How to cope with permanent changes to your body. 15. Problems with sex – “more common that you might think!” 16. “What else can I do to help promote good health?” – stop smoking! Assess your relationship with alcohol! 17. What are complimentary therapies and do they work? How do I access them? 18. The case for acupuncture. 19. The case for reflexology, massage and aromotherapy 20. “What are the chances of my cancer coming back?” How to spot recurrent disease (broadly speaking) and what to do about it. BREAK SESSION 3: “The Mind” This session is concerned with emotional and psychological health 1. That feeling when you finish treatment – ‘like falling off a cliff’- common experiences at the ‘blunt end’ of treatment. 2. I’m feeling a bit blue – is it just me? 3. How to cope with low mood. When does low mood become depression? 4. Do anti-depressants work? (media v. reality) “What other factors can lift my mood?” 5. What is mindfulness and why might it be helpful? 6. “All the breast cancer ladies wear pink!” - The issue of identity after cancer – who am I now? ‘New normal’ – I don’t seem to fit in! – the issue of representation 7. “I’m worried my partner won’t find me attractive anymore.” 8. Difficulties in relationships after cancer and where to get help. (e.g. Divorce rates following mastectomy; then discuss counselling options) 9. Talking to others about cancer – conversations with children, conversations with family, conversations with my employer 10. Making reasonable adjustments in order to return to work – but what is reasonable? 11. Am I stuck with the label of ‘cancer patient’ forever now? – hope and resilience 12. The power of narratives – telling your story – 100 Voices, Christie blog – how exploring narratives can help people come to terms with their experiences. 14


13. I want to give something back – but what should I do? (fundraising, direct user involvement, support groups) 14. “I’m afraid the cancer might come back” – dealing with anxiety around reoccurrence 15. Where do I get help? – What services are out there? SESSION 4: “Living with and Beyond Cancer” – Lived Experiences This session should be a brief presentation from at least one patient and one carer, followed by questions, facilitated by the Event Coordinator or Chair. What happens at the end of the event? At the end of the session, the Event Coordinator or Chair should ask the audience to shout out key phrases or words that they have remembered from the day and write them up onto a flip chart. Hopefully some of the key themes that have been discussed with come out of the exercise. This is an opportunity to reinforce that learning before thanking everybody for their contribution and saying goodbye.

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User Involvement •

What is the purpose of involving people affected by cancer in delivering these events?

People affected by cancer bring to the events a personal perspective on the experience of recovering from cancer treatment. A person affected by cancer can reflect on their experience as a peer of the audience and has the power to affect what a patient understands their role to be in taking control of their recovery and aftercare. •

How should you involve patients, carers and families in designing/delivering these events? “Session 4”

A person affected by cancer who has, through a recognised user involvement or patient engagement activity, experience of speaking about their recovery from cancer treatment, will speak for 15 – 20min about what helped or hindered their recovery. This could include access to elements of the Recovery Package, such as Health and Wellbeing events, HNAs, the role of support groups, help from other services such as psychological support or voluntary groups and when to ask for clinical support for after effects of treatment. The presentation can use tools such PowerPoint but this isn’t a requirement. Delivery of the User Involvement component of the event should be tailored to what the speaker is comfortable with. There should be time following the presentation for audience questions. As an alternative to an individual presentation a panel of up to 4 people affected by cancer can be formed. Each person would give an overview of their cancer type and main factors that affected recovery, for a maximum of 5 mins each. The audience is then invited to ask the panel questions. One benefit of this model of involving people affected by cancer is that the experiences can be from the perspective of a family member or carer as well as the patient perspective. It also includes the option of patients speaking who have had different types of cancer. •

How are we supporting them?

The involvement of Service User representatives is facilitated by the User Involvement Co-ordinator. Through the recruitment process people affected by cancer are given a thorough introduction to the Recovery Package, any support needs are identified and a working relationship is established. •

Payment of expenses

The project will reimburse the travel costs incurred by people affected by cancer who attend Health and Wellbeing events are speakers/presenters.

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What does success look like and how do we measure this? Predicted Outcomes In line with the aims and objectives of the events, the following outcomes are anticipated:   

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Patients, carers and families feel better equipped to discuss issues and concerns that may arise following treatment. Patients and carers feel more able to self-manage post-treatment issues and concerns – and know where to get information, advice and support. Patients, carers and families chose healthier lifestyles, particularly where there is an intersection with recovery: this may include stopping smoking, dietary changes, becoming more physically active, and monitoring length and quality of sleep. Patients and carers are more likely to take a more active role in care planning Patients know how to get help, support and advice, even many years after finishing treatment Patients, carers and families feel encouraged to engage with peer support networks. Reduced anxiety

Evaluation The following indicators will be used to measure the success of the event     

The session is well attended Patients, carers and families indicate they are more likely to adopt healthier lifestyles. Patients, carers and families indicate they feel more confident around self-managing posttreatment concerns and issues. Patients, carers and families can correctly identify how to access information, advice and support following treatment. Patients are more likely to feel able to discuss embarrassing or difficult problems with health care professionals.

A proposed brief evaluation tool is included as Appendix C Managing Budgets and staff time Whilst every HWBE will require a small budget, this protocol is designed to be as ‘resource-lite’ as possible, and we recognise that the procurement of recurrent funding is likely to be a significant challenge to sustaining the service. At The Christie, the use of auditorium is free for events created for an audience of Christie patients and carers, whereas other venues may incur a rental charge. Whilst consideration should be given to private sponsorship (e.g. pharma), we do not recommend relying on external sources of finance in the medium to long term, although it may help get the event up and running in the first instance.

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As the HWBE is integrated into the offer of care for patients, it is not appropriate to subsidise travel expenses for the majority of attendees. There may be one-off additional costs to ensure all patients have access – for example, translators. We have not considered the cost of staff time as part of this proposal. Clearly the cost of employing a bespoke Event Coordinator (should this not be an existing member staff) will be a significant financial pressure related to the delivery of these events. At the Christie, we plan to rotate staff so that it will not always been the same presenters for each event. This will minimise the work load for any one member of staff/team. The Event Coordinator is responsible for the financial management of the event.

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Appendix A DOCUMENTATION CHECKLIST Evaluation tool Information Sheet Signing in sheet Demographic Monitoring Tool FAQs Tool Any handouts “Top Tips” Postcard

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Appendix B: DEMOGRAPHIC MONITORING FORM Health and Wellbeing Event: Demographic Monitoring Form We would like to know more about you in order to ensure that we are involving a wide range of people throughout the organisation. The information you give on this form will help us to monitor and plan our activities. The form will remain entirely confidential – your name will not be associated with it in any way. Many thanks for your help.

1.

How old are you? Under 18 18-24 25-34 35-44 45-54 55-64 65+ Prefer not to say

2.

Gender Identity: Which of the following describes how you think of yourself? Man (including trans man) Woman (including trans woman) Non-binary In another way Prefer not to say

3.

Trans Status: Is your gender the same as the gender you were given at birth? Yes No

4.

Sexual Orientation: Which of the following describes how you think of yourself? Gay Straight Lesbian Bisexual Prefer not to say

5.

What is your religion? No religion Christian Buddhist Hindu Jewish Muslim Sikh

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Another…………………………………………………… (please specify) Prefer not to say

6.

How would you describe you ethnicity?

Asian or Asian British

Bangladeshi Chinese Indian Pakistani Another Asian background

Mixed

White & Asian White & Black African White & Black Caribbean Another mixed background

White

White British White Irish Eastern European Another white background

Black or Black British

African Caribbean Another Black background

Other ethnic group

Arab Gypsy or Traveller Another background……………………………….. (please specify)

Prefer not to say

7.

Is ENGLISH your first language?

8.

Where do you live? (FIRST SECTION OF POSTCODE)

9.

Disability: Which of the following describes how you think of yourself? I do not consider myself to be disabled Physical disability (including sensory impairment) Learning disability (including development disorders) Another experience of disability Prefer not to say

10. Which of these categories best represents your experience of cancer? (Please select all that apply) I am a Christie patient I am a carer I am a family member of a Christie patient I have been discharged from the Christie I am still undergoing treatment at the Christie I am undergoing treatment for cancer at a different hospital as well as/instead of at the Christie

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Appendix C: EVALUATION TOOL

Health and Wellbeing Events: Brief Evaluation Tool DATE: LOCATION of session:

Education Centre, The Christie

How did you hear about this Health and Wellbeing Event? Tick all that apply

I was asked to attend by a doctor I was asked to attend by a nurse I was asked to attend by a member of my clinical team who is not a nurse or doctor. Please specify job role if you can remember. I found out about the event from another patient or carer, or a friend I found out about the event from the Cancer Information Centre at The Christie I received a postal invitation I received an email invitation I am attending because my partner/friend/significant other is a Christie patient I can’t remember / Don’t know

Please specify the level to which you agree or disagree with the following statements: On the table below, please tick the box that best matches your thoughts.

Completely disagree

Somewhat disagree

Neither agree nor disagree

Somewhat agree

Completely agree

I have started to feel more confident about dealing with life after cancer as a result of attending this health and wellbeing event. I know where to get reliable help and advice about ongoing concerns or new problems for me or my partner/friend. Attending the Health and Wellbeing Event has made me feel less isolated. The staff and patients running the Health and Wellbeing Event are helpful and encouraging. I enjoyed meeting other patients and carers at the Health and Wellbeing Event. The Health and Wellbeing Event did not feel relevant to me at all. The Health and Wellbeing Event left me feeling emotionally tired and drained. I am likely to become more physically active after attending this health and

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wellbeing event I was impatient for the health and wellbeing event to end. I am more likely to access information online as a result of attending the Health and Wellbeing Event I am more likely to engage with peer support groups or networks.

Further Comments:

We welcome feedback on any aspect of this project – from the choice of venue, the content of the sessions, what it feels like to be involved, and how it has helped you. Please add your comments in the box below:

Recommending this project – please delete as appropriate:

“I would/wouldn’t recommend attending to others”

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Appendix D: FAQs TOOL

Health and Wellbeing Events: Ask A Question! DATE: LOCATION of session:

Education Centre, The Christie

The question I would like to ask is…

What    

we will do now – We will find out who is best placed to answer your question We will ask them to provide a brief response We will forward the response to you by letter or email With your consent, we will anonymously publish your question and the answer on our ‘Frequently Asked Questions’ section on the Christie website to help other patients who might have similar concerns.

Consent I consent for my question to be published on the Christie website. I understand that the question will be published anonymously. YES / NO

delete as appropriate.

Further Contact Please supply your name and contact details so we can contact you with your response. Name………………………………………………………………….. Email…………………………………………………………………… Address……………………………………………………………….. …………………………………………………………………………… …………………………………………………………………………… …………………………………………………………………………… ………………………………………………………………………….. Daytime phone number………………………………………… ……………………………………………………………………………

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Appendix E Session 1: What am I doing here and what happens next? PowerPoint Slides and commentary Slide 1 Introduce yourself, the event, the presenters, the agenda. Housekeeping: • Mobile phones set to vibrate or switched off • Fire Alam procedures • Lunch arrangements Ground rules and values for the event: • If you wish to ask a question, raise your hand and wait for the roving microphone to find you • All questions are valid • All opinions are valid • If we don’t know the answer here and now, we will write to you following the event, and we intend to create an online database of FAQs • We recognise that everybody will have had a different experience of care, no two cancers are the same, no two patients/carers are the same • We respect diverse opinions, views and belief, even if we disagree • Copies of presentations are available • Please fill in an evaluation form before you go. These can be written on a flip chart as a reminder. Consent and confidentiality: • Remind attendees if the event is being filmed or recorded in anyway (they should have already indicated their consent following referral) • Remind attendees that the event is being treated as confidential

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Slide 2 What do we mean by ‘Living with and Beyond Cancer?’ This quote comes from a short film called ‘Living with and Beyond Cancer’ that was recently produced by The Christie, and we were lucky to have Dame Jenny Murray introduce the piece. It’s interesting to unpick this quote to help us understand what we mean by the phrase ‘living with and beyond’. 1. ‘an awful lot of us’ – implies a great number, and we know that most of us are going to come into contact with cancer either as a patient or a carer or a family member at some point in life – we will all have some form of lived experience or a story to tell about the disease – and what our story and experience ends up being will be shaped by what happens to us when we go through treatment, the professionals we meet, the clinical outcomes, the environment, the language (both in clinical settings and the wider media) 2. ‘learning to live with and beyond it’ – implies that we are now living with cancer as a chronic disease rather than the life/death binary scenario that may feel more familiar to some. So what do we mean by ‘Living with and Beyond Cancer? This term was suggested by people who have had cancer because it was felt that the word 'survivor' meant specifically those in whom cure was fairly certain (perhaps a long time after their diagnosis and treatment). Many others are living with fairly stable cancer or with some degree of uncertainty that it could come back, often for a number of years. These people too felt very strongly that they needed support and regarded themselves as survivors too. Others simply do not like the label 'survivor'! So the term 'living with and beyond' tries to include all of these groups, whether you are living with cancer as an ongoing health problem and may be on and off treatment over time, or whether you have been 'signed off' after cancer in the past. 26


Slide 3 Cancer narratives Cancer always seems to be cropping up in the media – and ‘Living With and Beyond Cancer’ or ‘Survivorship’ especially has been a key theme. Here are just two examples in recent years from The Guardian. Media stories can be helpful, but do they tell the whole story? Comment on the mismatch between the headline and the picture in the examples given above. The headlines are talking about survival whereas the pictures appear to suggest a stereotypical image of a cancer patient in hospital. So the point is that we need some better ways of talking about life after cancer that are more in tune with lived experiences. The picture is a lot more complicated than ‘more people are surviving cancer’ – depends on staging, depends on disease type (narrative is very different if you compare lung with breast or prostate, for example), and of course, quality of life. What does it mean in practice to ‘live with or beyond cancer’? Perhaps we are dealing with ongoing side effects, late side effects from treatment, physical changes to the body, the emotional impact of cancer on ourselves, on loved ones, and on families? What does it mean to be a carer for someone with a cancer diagnosis in the long term? Do you ever ‘stop’ being a patient? But it’s important to remember at this stage that everybody’s experience of cancer is going to be different, and everybody’s response to cancer and its treatment, both psychologically and physically, is going to be different. Here in the room today we already have a range of cancer voices, people who will have had colorectal, or breast, or prostate cancer, or something else*. Cancer is not one uniform disease, and cancer patients all have different stories to tell. 27


But that doesn’t mean we can’t all learn and share something altogether. And that is the purpose of bringing everyone here today for what we call a ‘health and wellbeing event’. (*important to acknowledge that this is a generic event from the outset) Slide 4 Recently I came across a piece in The Guardian, some of you might have seen it, that talks about the impact of living with and beyond cancer, and I thought it would be useful sharing this with you today. Read this out (or this could be done as a video piece): Milkshakes and Morphine by Genevieve Fox “Hey cancer, you picked the wrong bitch.” “Been there. Beat that.” “Remission rocks.” “Survivor.” “;” This is a selection of bumper stickers and tattoos devised by cancer survivors. Of these, I choose, if choose I must, the semi-colon. It is discreet, obscure, open to interpretation. To me, it signifies cancer as a pause, a clause, not necessarily the end stop; liminal, it conjures a bridge between one life and another, one self and another. Today is National Cancer Survivors Day or NCSD, an American initiative launched in 1988. It is marked with local events in various countries around the world, including the UK. In the US, NCSD groups organise parades, parties and pampering. They stock up on NCSD merchandise: visors, badges, balloons, banners, T shirts – “the one must-have item” in their catalogue.

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Self-proclaimed cancer survivors are an out-there bunch; to count myself among them, I should really ditch the semi-colon in favour of something defiant. I’m thinking CKMA, as in “Cancer, kick my ass.” Since I’ve just had a bowel cancer scare ruled out, it could be my little joke. But beneath the joke would be the fear: I was treated for head and neck cancer in 2014 and I don’t fancy another. But, like so many so-called cancer survivors in so-called remission, I wait for one. I wait, alert, in no-man’s land, the place to which my mind returns in between all its other preoccupations and activities. It is an eerie place, the fear of recurrence. A grenade may whistle into the expectant silence any time – or never at all “Cancer survivor” is not a badge I reach for. Does that mean I want to hide who or what I am, or rather, who I have become? Perhaps. The very word “survivor” irks. It speaks of fighting, of scars and leaving others behind. “I battled cancer,” reads another bumper sticker. “What’s your superpower?” “Survivor” smacks of victimhood, too, and of exposure to dreadful atrocities. Some people are hit with depression, insomnia, anxiety and PTSD; “survivor” implies that your cancer is history, which is one reason Macmillan prefers the phrase “living with and beyond cancer”. It’s not catchy, but it factors in the impact cancer has beyond the duration of the disease itself. I can only describe that impact as a feeling of living in a perpetual after. It is uncharted territory, unfamiliar, forever changing, full of surprises. Here the survivor analogy holds: to live well here requires survival skills, adaptability and resilience chief among them. In the immediate aftermath of my curative treatment in 2014, long before my very recent and rather begrudging acceptance of my place in no man’s land, a new, post-cancer landscape started to form around me. I didn’t know what was going on. I kept looking for the yellow brick road that would lead me back to the old, pre-cancer me. Various emotional aftershocks threw me off track, came after me, in fact, like the San Andreas Fault. The first, shortly after the initial elation after getting the all-clear, was impatience, followed by gratitude, guilt, compassion, fear and, finally, a sense of failure. There were no half measures; each was felt with a head-splitting intensity that eventually sent me running to my psychologist. In short, I thought I was going bonkers, and that no one else had the slightest inkling. “That is exactly how my brother felt when his cancer treatment was finished,” a friend said of her sibling, who’d had cancer in his 20s. “The ‘after’ for him was the hardest part.” (Pause for a moment here – perhaps there will be comments and thoughts from the attendees?)

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Slide 5 So….what is supposed to happen now? And how are things changing at The Christie to help people deal with “the aftermath”. Give a very brief overview of the Recovery Package:     

Holistic Needs Assessments Health and Wellbeing ‘Events’ Treatment Record Summaries GP Cancer Care review Supported Self-Management and Risk Stratification

Don’t be put off by the language - Mention that the title ‘Recovery Package’ can seem a bit exclusive (e.g. advanced cancer patients) – So it says “support self-management” on the Recovery Package diagram – what does this mean? The main aim of Self-Management support is to enable patients to have the skills, knowledge and expertise to make positive choices about their health and healthcare and be supported to take the steps that lead to long term positive changes in health behaviours and to manage the emotional impact of the condition in their daily lives. In short, to move from being passive recipients of medical care to a state in which they are actively engaged with their own health. The Christie’s role, and indeed that of the wider community in Greater Manchester, is to provide the tools and services to support patients to reduce overdependence on health services and medications by becoming capable and confident enough to take the steps to manage and control their own health condition. Helping people to transition from a ‘passive’ position to a proactive and ‘activated’ position can involve supporting a range of skills and access to resources OK, in that case, what are staff expectations of me as someone who is living with and beyond cancer, in relation to self-management? • Participate in shared decision making • Keeping my care plan up to date • Setting some realistic goals…and sticking to it! • Being honest about things – and recognise that’s it’s OK not to feel OK 30


Taking action when things change

What support can I expect to help me with this? • Access to information • A GP Cancer Care Review and support in Primary Care (can also help with late effects) • Your follow-up appointments at The Christie • Peer support networks (both online and elsewhere) • Maggies Centre • Advice from your Christie clinical team – especially around dealing with ongoing side effects, late effects, ?psychological support) • Macmillan telephone ‘helpline’ Slide 6 Active participation, you might also hear it referred to as ‘patient selfactivation’... and you might well ask “OK, in that case, what are professional expectations of me as someone who is living with and beyond cancer?” Well – you might want to make a (mental) note of the following…. • Participate in shared decision making • Keeping my care plan up to date • Setting some realistic goals…and sticking to it! • Being honest about things – and recognise that’s it’s OK not to feel OK • Taking action when things change In return! What support can I expect to help me with this? • Access to information (Which might be online – more on this later…) • A GP Cancer Care Review and support in Primary Care (can also help with late effects – PROVIDE DEFINITION OF LATE EFFECTS AT THIS POINT) • •

Your follow-up appointments at The Christie Peer support networks (both online and elsewhere) – we will come back to this at the end of the presentation 31


• • •

Maggies Centre (which we have onsite at The Christie) Advice from your Christie clinical team – especially around dealing with ongoing side effects and late effects Macmillan telephone ‘helpline’

Slide 7 Introduce the postcard – everybody should have a copy to hand at this point. These are our ten top tips for self-management which focus on general health and wellbeing but all have some bearing on recovery from cancer. We asked a group of patients and carers to help us come up with these. Stick the postcard on the notice board or the front of the fridge at home as a reminder of today. These apply to carers as well as patients. These are the things to remember: (Quickly read out the points on the slide and comment) Don’t worry if you have a question about any of these, as we will look into them in slightly more detail now and after lunch.

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Slide 8 A word about Care Planning The first of our ten top tips “Have a plan for healthy living” is about something called care planning. Hands up if you know what a care plan is? (or use the keypad with a yes/no option) Hands up if you currently have a care plan? (as above) Hands up if you have ever had a care plan? (as above) The chances are that you will have had a care plan at some point. To help promote your recovery, it might be useful if you begin to take a more active role in creating and maintaining a care plan going forward. Care Plans are an incredibly useful way of organising information – it is a record of things that are important to you, things that you can do, and things you have agreed with your clinical team. Illustrated is something called a Life Ahead Plan – this is a little booklet you can take away which might help you organise your thoughts as you go through follow-up and beyond. (Give out hard copies to anybody who wants one – explain that you will be around at lunch to discuss the booklet or answer questions on it) The booklet can also be downloaded from The Christie website if you would like to print at home.

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Slide 9 On the subject of websites So let me introduce you to this guy…. Doctor Google! How many people have used an internet search engine to look for information about cancer? (Hands up) For many people, the Internet has become the first place to go when looking for information. You can get instant access to almost any topic you can think of – including a lot of cancer information. People facing cancer often use this information to make decisions about their illness and treatment, and there is plenty of stuff out there about ‘living with and beyond’. Some of this information is more reliable than the rest, but it can be hard to tell at first glance. A lot of what passes for cancer information on the Internet is made up of opinion, salesmanship, and testimonials, and is not grounded in careful science. Keep in mind that most search engines return “sponsored” findings with their search results. These are nothing more nothing less than adverts, and should be treated as such. Anyone can post any kind of information online and some people may be passing along information that’s limited, inaccurate, or just plain wrong. Some even try to deceive you. More reputable websites will list references from scientific journals that support the information they give you. The site’s privacy policy (usually linked from the top or bottom of the site’s home page) should be easy to get to and clearly explained – don’t give them any personal information - Websites that exist only for health information should not ask for information like your National Insurance number, credit or debit card numbers, driver’s license number, date of birth, or mother’s maiden name.

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Slide 10 So you’ve found a website, it seems legit, but how do I know it’s not spin, bias, inaccurate or misleading? Fake news seems to be everywhere at the moment – so how do I know if what I’m reading is real or not? (Refer to briefly to examples on slide and explain why they should not be trusted)

• •

• Claims of a “scientific breakthrough,” “miraculous cure,” “secret ingredient,” or “ancient remedy” – are probably quackery or at least not telling the whole story. • Claims that a product can cure a wide range of illnesses (No one product can do this.) • Stories of people who’ve had amazing results, but no clear scientific data • Claims that a product is available only from one source, especially if you must pay in advance Claims of a “money-back” guarantee (While this may make the product seem risk-free, it’s often impossible to actually get your money back.) Websites that don’t list the company’s name, street address, phone number, and other contact information (It may exist only offshore, away from UK laws and regulators.)

But please don’t be put off using the internet, just go into it with your eyes wide open. It can be a very powerful tool…. In a study by Wang (et al) in 2012, they searched the keyword breast cancer in Google, Yahoo!, Bing, and Ask.com and saved the results of the top 200 links from each search engine. 6 websites they nominated as ‘expert’ websites. Each search engine provided rich information related to breast cancer in the search results. All six standard websites were among the top 30 in search results of all four search engines. Google had the best search validity (in terms of whether a website could be opened), followed by Bing, Ask.com, and Yahoo! 35


If in doubt, go directly to the resources on the Christie website, or Macmillan, or other known cancer charity. Slide 11 Another really useful way of feeling more supported once you have finished treatment is to engage with peer support networks. What are peer support networks? They are groups of likeminded individuals, who could be patients, carers and a mixture of the two, who come together to share their experiences, answer each other’s questions (from non-medical perspectives usually) and to listen. The listen bit is very important! Some groups are set up in a fairly formal manner, some less so, some exist in the real world, some exist in virtual spaces such as Twitter, which incidentally is an extradinarily powerful tool for connecting people affected by cancer from around the world together. Peer support can be something as simple as two friends talking to each other, over coffee and cake, and in a way, that is exactly what we are doing today in our HWBE. Some peer support networks are run by the big cancer charities. For example (use your own example here). Would anybody like to share their experiences of peer support from the audience? (Ask for one example only in the interests of time) Women are much more likely to engage with peer support networks than men. Would anybody like to hazard a guess as to why this might be the case? (Pick one person to answer question) (Show the ‘Three Men and a Boat’ Video here.) https://www.youtube.com/watch?v=6Dk9xDuEdSs

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Appendix F Session 2: The Body. PowerPoint Slides COMING SOON (DUE END OF AUGUST) Appendix G Session 3: The Mind. PowerPoint Slides COMING SOON (DUE END OF AUGUST)

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Appendix F “Top Tips” Postcard

(CURRENTLY WITH COMMS/DESIGN TEAM)

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Health and Wellbeing Events for people affected by cancer: A "How To" Guide  

A comprehensive guide to creating and delivering a 'generic' health and wellbeing event for people 'living beyond' cancer. Also effective fo...

Health and Wellbeing Events for people affected by cancer: A "How To" Guide  

A comprehensive guide to creating and delivering a 'generic' health and wellbeing event for people 'living beyond' cancer. Also effective fo...

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