Rose Woodward (UK) &
Catherine Madden (CDN)

Catherine Madden (Canada) and Rose Woodware (UK)

Catherine Madden (Canada) and Rose Woodware (UK)

Rose Woodward (UK) and Catherine Madden (Canada) prepared an outline of issues in developing Peer and Patient Support activities.  This outline helps to remind us all of the issues we should raise when training people – staff or volunteers – for the critical role of supporting callers by phone.  Whether it is the patient or caregiver who calls, they are usually emotional, under stress, and will need special handling.  Support people should always listen more than they speak, and work to provide what the caller needs.  The objective is to hear what the caller needs, not to deliver a set speech or story.

Who are we trying to support?

  • Kidney Cancer Patients
  • Carers/caregivers
  • Close family members (perhaps bereaved partners and children or parents)
  • Close friends

How can we provide that support?

  • Telephone care line
  • Email support
  • Online via website forum
  • Social networking (Facebook – open or closed/private pages)
  • Patient Advocacy Group (PAG) arranged Patient Days
  • Online: via website patient stories
  • Online: via website – area for resources and information
  • Printed literature/information also available via website download
  • Patient group meetings; in person (professional experts Q & A sessions?)
  • Buddying – one to one support for patients or carers
  • Media – press articles with information and P A G details included
  • Videos, webcasts, YouTube
  • PAG – Phone-in conversations & Q & A sessions with experts
  • Online via website and in-Hospital Fact Sheets
  • Patient Blogs – sharing experiences and insights

Who can give support?

  • Try to build up a team or panel of people to provide support – don’t try to do it alone – share the load – it’s not about your expertise; it’s about the patient
  • Another patient with experience (unique understanding)
  • Another carer with experience (unique understanding)
  • Nurse helpline – professional clinical/emotional support
  • Clinician – professional clinical support
  • Outside agencies – financial, bereavement counsellors, diet/nutrition
  • Hospital psychiatrists
  • Hospices
  • Physiotherapists & other Healthcare Professionals

Define the relationship – what are we trying to do

  • Understand the basis for service – is this about friendship or to provide support
  • Encourage people to utilise group support via online forums/social networking; and posting private messages even when in a public online forum
  • Remember – it is not the support person who is important, we are there to empower patients/carers. We are not mentors or advisors, we are empowering patients to be their own best advocate.

Look after your support team/person – this is difficult, emotionally draining work!

  • Training about how to handle vulnerable people is vital even if informal
  • Feedback – how do they know they are doing a good job?
  • Caution: Do not put pressure on one person as your “Poster Patient”
  • Support or counselling – do you offer a one off call or ongoing support
  • Take care not to encourage patient dependency on your service – empowerment of others should be the aim
  • The difference between advice and support – know your role

What resources will you use?

  • Try to refer patients to a verifiable source of information whenever you can. If giving an opinion, support team members should explain this clearly and reinforce that their opinion is a personal, individual patient experience.
  • Always direct the caller to where good quality information can be found. (This also means redirect to other websites, not only your own organisation)
  • Build up a library of resources – have a list of resources readily available – i.e. include information about cancer drugs, supplements, complementary therapies, clinical trials, metastatic disease/recurrence etc. – cover all possible questions

The support conversation itself ….

  • How you introduce yourself is important – should this be first name only?
  • Will you offer an out-of-hours call-back? – is that acceptable to the patient? who will call back? At what time? Is it permissible to leave a message? Confirm what service your support team will offer.
  • Create a triag: the call will be answered during office hours, then referred on to an experienced support team member.
  • Always start the conversation with “how can I help?” The aim is to get the patient to talk. Do not overload the patient/carer with information.
  • Calls should not last more than 45 min.; you begin repeating info
  • Clinical questions may be asked…. “I need your advice”, “what doctor should I see” “what medication should I take” – BUT you are not a clinician – you must refer clinical questions to a professional. Give your own experience only, or pass to a professional
  • Ask permission to sign people up to receive e-newsletters, updated information, etc., to increase their knowledge.
  • Acknowledge this is a difficult conversation for some people to have. “It sounds like this could be difficult for you. Do you have another question?”
  • How do patients access or fund treatment? Can you explain and outline all the options? Or suggest where the caller could go to get specific advice about financial information?

Record keeping – is it allowed in your Country (ref: patient confidentiality)

  • Keep forms & pen by the telephone for note taking, keep copies of all emails sent & received.
  • Legal Disclaimer on the website and over the phone? Standard words?
  • Data protection issues – what is allowed: are you allowed to legally record medical information about disease, age, location, hospital, doctor etc.
  • Can you record data to track what was discussed & capture common questions?

This can help identify the need for more information & help to develop a Frequently Asked Questions document (FAQ).

  • Be ready! use conversation prompts to remind you what to say: Examples: what was helpful to you?
  • This worked for me. Share insights, knowledge, and personal experience.
  • Requests for second opinions about disease issues: Are they necessary? Is there already sufficient information for this patient to make an informed decision?

Be careful – Never, ever say what patients should do.

  • Aim to give suggestions only – “it may help to do…..” “That doesn’t sound good/right”, “you could try ……” “You might ask your doctor…”
  • Your patient support people cannot give medical advice. We can only share our personal experience/insights – we do not know the full personal and medical story.
  • Don’t pretend you know everything – Always be prepared to use the words “I don’t know”
  • Often a caller just needs someone to listen. The doctor or nurse may not have time to listen; the spouse may be too involved to listen; the friend may be too afraid.
  • Repeat – I’m not a doctor…I am a volunteer/patient/carer/employee of the charity.

Be prepared to be questioned about your situation – you may be asked…

  • How long have you been living with your cancer, what happened to you?
  • Will you share what worked for you and others….your personal experience
  • Are you scared about recurrence…. vigilance/hope/fears/coping
  • What qualifies you for this role – your experience gives confidence
  • Confidentiality issues – give assurances if you can, but do not lie.

Why do we do this work – why don’t we just move on and forget about kidney cancer and just enjoy life?

Protecting Your Support volunteers/staff

  • Your PAG has a Duty of Care to protect its volunteers/support people
  • Where do your support team members go when they need support/debrief
  • How do they say to the PAG or to patients “no I can’t do that for you ”
  • Recognise that everyone needs a break; this is emotionally draining work. Passion may flag – it may become all too much. personal health or family issues may intervene.
  • Don’t share names/contacts or another patient’s story without permission

If you do not want your story shared, let callers know; it can be misrepresented

Protecting the caller

  • Ensure you deliver correct information and disclaimers
  • Provide realistic expectations, don’t promise what can’t be delivered
  • Explain your organization’s structure – are you a charity or an informal group
  • Ask the patient “do you feel you have enough info to make an informed decision?”
  • Are you/is your PAG a recognised approved provider of information (kitemark or service quality certification if any)
  • Are your organisation’s leaflets up to date – what steps will you take to make sure you provide the best possible information and support?
  • Build up a library of resources.

If in doubt: defer and refer …..

  • Don’t give advice about something you are not sure about – defer & refer to a better resource for these answers.
  • Patient are individuals; no story is the same – defer & refer: to a hospital clinician, dietician, financial advisor, hospital nurse, or local doctor.
  • Have a list of all the main kidney cancer cancer centres in your Country
  • Have a list of medical oncologists & urologists dealing with kidney cancer available – do you need permission for this from the doctors

Questions and Issues to consider

  • Protect the telephone number of volunteers.Provide a separate phone so that their personal caller identification is not visible to the caller.
  • Email support – do not use personal email addresses
  • Promote use of social networking – aim to get patients into a group discussion so that answers are available to more than one caller.
  • You are providing a service, not building a friendship
  • Data protection – check what record keeping is allowed in your country
  • Prepare a generic form or log to capture patient details if allowed in your country
  • What can your support team do to detach and not take everyone else’s problems to heart (proper training will help with this).
  • What do you say to the patient/caregiver who is blaming their cancer professional for misdiagnosis, poor treatment, etc.?
  • What is the procedure if your support team members feel awkward or are worried about a conversation – safety issues of suicide or violence

Medical/clinical help

  • Get a subscription to a good journal or find someone that can get papers for you.
  • Do you need a professional nurse or doctor to monitor the support services to ensure correct and accurate information is made available?
  • Are there links to prescription/drug fact sheets on your website?
  • Understand that you have taken a proactive decision to support vulnerable people – this is a desperate time in their lives.It is a huge responsibility, one you cannot take lightly. Question your motives until you are sure why you are doing it.

Triage – how it works

  • Call or referral comes into the main office (office hours and/or answer phone)
  • Can you forward patient questions to an in-house expert ornurse? Do you have a Medical Advisory Board? Is the advice of clinicians or nurses available to the support people?
  • Find out who has appropriate experience with what treatments?
  • Try to provide appropriate peer support volunteers: appropriate could mean, same geographical location, same disease type, same age, same personal situation (children, marriage, age)
  • Volunteer will confirm to the office the call has been dealt with. Who will you follow-up with: a patient or caregiver?
  • When resources are made available to individual patients, ensure these are also placed on your website for the benefit of others who may be in a similar situation
  • Get a mini profile/bio from each peer supporter. Are your volunteers happy/content with their role?

Emotional issues to bear in mind –

  • Is it right to focus only on the positives; accomplishments of life lived with kidney cancer; “seize the day” “fighting/beating cancer” or should the conversation be more balanced?
  • How to deal with an angry/irrational/emotional caller if your main job is to just listen
  • Should you control the conversation, people are not always rational when under extreme pressure, they may not want to hear what you have to say or have a productive conversation. Say… “How can I help you today?” or “I’m sorry but I only have 20 mins., how can I help you?”
  • Advise the office (also advise if you do not wish to talk to that person again)
  • Remember patients feel they lose control of their lives when diagnosed, always remember it is the patient’s story/journey, not their family’s or yours.
  • Can you provide evidence/information for the patient to take to their doctor to discuss treatment options?

Rose ………