1 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 York and Scarborough Hospitals Kidney Patient Peer Supporter Handbook (V7 2022) Note: Information for this booklet has been adapted from the Kidney Care UK Peer Support Toolkit: https://www.kidneycareuk.org/health-professionals/peer-support-toolkit/

2 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Contents Welcome.............................................................................................................................................4 Introduction ........................................................................................................................................5 Kidney Peer Support .....................................................................................................................6 What we cover….................................................................................................................................7 What we offer… ..................................................................................................................................7 Benefits of Peer Support for Chronic Kidney Disease (CKD).......................................................8 Models of Peer Support ...............................................................................................................9 The role of the Peer Supporter ..................................................................................................11 A Peer Supporter:..........................................................................................................................11 Understanding the Role .............................................................................................................12 Areas to be Covered......................................................................................................................12 Peer Support Service Structure.....................................................................................................12 Corner stones of Peer Support: ....................................................................................................13 Main potential outcomes:.............................................................................................................13 Softer outcomes:...........................................................................................................................14 Being Non-Judgemental................................................................................................................14 Contact & Arrangement of Sessions.............................................................................................14 Record Keeping .............................................................................................................................15 Referrals........................................................................................................................................15 Ending the Peer Support Relationship..........................................................................................16 Peer Supporter Limitations...............................................................................................................17 Don’t..............................................................................................................................................17 Do..................................................................................................................................................17 Boundaries, Self-disclosure and Confidentiality ...............................................................................19 Boundaries....................................................................................................................................20 Self-disclosure...............................................................................................................................22 Confidentiality Guidelines.............................................................................................................23

3 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Useful websites.............................................................................................................................24 Working together with our Health Care Professionals ..............................................................25 Experience.....................................................................................................................................25 Availability.....................................................................................................................................26 Approach.......................................................................................................................................26 Communication.............................................................................................................................26 Regulation and remit of role.........................................................................................................27 Skills & Training.................................................................................................................................29 Overview .......................................................................................................................................29 Knowledge of kidney failure, treatment, and the issues associated with a diagnosis.................29 Communication Skills ...........................................................................................................30 Listening Do’s................................................................................................................................31 Listening Don’ts.............................................................................................................................31 What if you need support? ....................................................................................................32 Dealing with social and emotional problems....................................................................................33 For you and those you support.....................................................................................................33 Personal Notes:.................................................................................................................................35 Helpful contacts................................................................................................................................36 Acknowledgements...........................................................................................................................38 Please read before training Notes:

4 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Welcome Welcome to York and Scarborough Hospital’s Kidney Patient Peer Support Network’s Peer Supporter training, developed as part of our joint patient and healthcare initiative to add the ‘Lived Experience’, to the existing renal service. Our aim in this training is to provide each and every volunteer (Supporter) with a foundation to work from. The skills-base that we deliver will help you to engage in Peer Support in a safe, confident and productive way. We will spend the next three sessions to gain skills and abilities as well as build on our/your existing knowledge around support. This training course and accompanying workbook will equip us with all the information we need to be able to develop and provide effective, high quality peer support.

5 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Introduction The aim of this handbook is to provide a short practical guide from York Hospital Kidney Patient Peer Supporters who are part of the York Hospital Kidney Patient Peer Support Network (The Network). The guide is intended to give those kidney patients and carers who are due to undergo our ‘Kidney Peer Support’ training programme, some guidance and understanding of: • What Kidney Peer Support is • What Kidney Peer Support sets out to achieve • The benefits of Kidney Peer Support • The role of the Kidney Peer Supporter • Where Kidney Peer Supporters can get support It is hoped that they will be able to work together with staff as ‘expert patients’ through their treatment, journey and life skills experiences, that will enhance the kidney services; where possible having some small impact on helping to improve patients’ and carers’ quality of life. It also provides some useful sources of information and contact numbers when providing Peer Support. The handbook has been produced by a range of people involved in kidney care, including kidney patients, carers, doctors and nurses.

6 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Kidney Peer Support Nobody understands what people with chronic kidney disease are going through as well as people who have gone through the experience themselves. Peer Support occurs when people provide knowledge, experience, emotional, social or practical help to each other. Peer Support in this context is to empower others to live well with Kidney Failure and to make positive changes in their life, it is not to do anything for them. The Kidney Peer Support network involves kidney patients helping other kidney patients who are facing similar situations. It aims to give short term practical, emotional and social support to people with chronic kidney disease, their families or carers based on common experiences. Peer Support offers an opportunity to have a one-to-one chat and share personal experiences and stories either face to face (currently online) or over the telephone with an experienced kidney patient or carer. Peer Supporters will use their treatment(s) and lived experiences with Kidney Failure to support and empower people who are struggling with their diagnosis. They are ideally individuals who share similar life experiences, lifestyles and are approximately the same age. However, it is not always possible to match people in this way, depending on who has been trained to be a Peer Supporter, so you may find that sometimes you are asked to talk to someone who has had slightly different experiences to you. Often these people need just a friendly chat, but if you feel they need specific information that you cannot offer, please contact your Peer Support Manager (Andy). Peer Support is intended to complement the care and education patients and carers receive from their kidney healthcare team. It is therefore an additional service which is available if wanted. It is not a substitute for the professional team and you should not be answering queries better suited to others e.g., about medication. Perhaps of interest see: Your Guide to Living with Chronic Kidney Disease (CKD) https://mykidneyjourney.baxterhealthcare.co.uk/

7 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 What we cover… Defining Peer Support – The Theory of Peer Support and how this differs from other forms of Mentoring or Befriending Peer Support Skills – Skills, Qualities and Limitations of being a Peer Supporter. Boundaries – Personal and Professional Boundaries, Confidentiality, Safeguarding and Disclosure What we offer… This Booklet – This booklet offers a variety of content designed to both help you understand the role of a Peer Supporter, in whatever role you wish to choose. Peer Support Training – Peer Supporter training is designed to help you to become more confident in your role as a Peer Support Volunteer. The facilitators will work with you to help understand the why, value, impact and support through co-created sessions dealing with content (topics) that are important for any Peer Support Volunteer to consider. Please do not feel overwhelmed by it’s content as appropriate aspects will be covered during training.

8 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Benefits of Peer Support for Chronic Kidney Disease (CKD) It is important for people with a long-term condition such as Chronic Kidney Disease (CKD) to be given high quality support and information when making decisions about their treatment. Peer Support offers benefits both for the people using the Peer Support service and for the Peer Supporters themselves. People using Peer Support Services Peer Supporters Reassurance of knowing they are not on their own Increased confidence to make decisions and have better control over their life Sharing experiences of what works well and is helpful Good source of encouragement Can talk to someone who understands the challenges they are facing Able to use your own personal experience to give others encouragement Positive experience by having the opportunity to contribute and give something back Draw satisfaction from supporting others to help themselves Helps you gain confidence Increase understanding and own skills

9 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Models of Peer Support Befriending / Buddying Patients/carers developing positive supporting relationships. Peer Support Using own experiences and knowledge to actively focuses on developing individual’s selfmanagement skills, uses modelling, peer element necessary to encourage Peer’s to make their own decisions and choices modelling. Facilitated Peer Support Non-peer professional facilitates peer support in a group setting, manages safe sharing of stories. Peer Led Support Groups Peer volunteer runs and facilitates group, sometimes independent and sometimes supported by coordinators. Coaching Helping people reach their potential by helping to set goals Mentoring Using your own experience and knowledge allows you to help others to move towards their full potential Counselling Basic counselling skills and techniques for those that may need Psychosocial help. Advocacy (getting response from Karoliana)

10 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Process: 1. Building relationship and trust 2. Clarifying purpose and intended outcomes 3. Communicating and reviewing progress. Methods: Face-to-face: The participants meet in person Telephone/Mobile: ‘tele-mentoring’, WhatsApp. Internet-based: ‘ESupporting’, Zoom, Web-based (Zoom, Teams) Peer Support Definition: A voluntary, mutually beneficial and purposeful relationship in which an individual gives time to support another to enable them to make positive changes in their life. Models: One to one/two: One person Supports another/couple Group: A group of people come together with shared aims and objectives to learn, share and support each other One to Many: An individual provides support for a number of people in a small group together or individually. Purpose: Specific/Targeted: eg. Understanding Treatment, Managing telling about CKD etc. Change Behaviour: Improve Relationships, adherence or reduce unwanted behaviour Expand Opportunities: Build confidence, develop personal skills Supportive: Build trust and resilience, reduce isolation.

11 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 The role of the Peer Supporter The role of the Peer Supporter aims to build upon an individual’s experience and strengths. The following ‘role description’ summarises what is expected from you as a Peer Supporter followed by an outline of the role itself. A Peer Supporter: • Provides a voluntary service to renal patients and their relatives, which complements the roles of the professional members of the healthcare team. • Shares their personal life experience of kidney disease and its treatments in a friendly way. • Provides a realistic but positive example, to give reassurance and confidence. • Supports others to care for themselves and get the best from their health care team; avoids giving medical advice. • Listens openly, follows the other’s lead, asks questions and avoids making assumptions. • Responds respectfully to each individual in a non-judgemental and empathic manner. • Is honest and confidential. • Knows their limitations, including when to sign-post or refer on. • Receives support from their link nurse and other Peer Supporters.

12 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Understanding the Role Areas to be Covered Everyone will deal with their kidney diagnosis and treatment differently, and different patients/carers may need support with different aspects of their diagnosis and/or treatment. It should be clearly noted that the Peer Supporter DOES NOT provide guidance on the type of diagnosis given or treatment undertaken. We are experts by type(s) of treatment and lived experience, and we may offer varying ways of dealing with both. It is not the responsibility of the Peer Supporter to ensure that the patient/carer has a good understanding of these areas; the Peer Supporter is there to assist with understanding and application. The responsibility lies on the appropriate renal staff to ensure that patients have a good understanding of all of these issues. The point of the Peer Supporters is that we complement the knowledge transfer given by the staff to the patient/carer, as opposed to providing it. Peer Support Service Structure The Peer Support supporter will work with the patient/carer for up to a maximum of 6 sessions, approximately one hour long each (there may be benefit in extending the odd session). There is no set order in which topics should be covered, different patients and/or carers may feel comfortable talking about different things at different times. It is up to the patient/carer and Peer Supporter’s discretion as to what gets discussed at what times. Overall, the mandate of the Peer Supporter is to support the patient/carer using their lived experience in accordance with the patient and/or carer’s immediate needs. Peer Supporters should not worry too much about what specific topics are covered.

13 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Sessions should be agreed between the Peer Supporter and the patient and/or carer. These can be a mix of over the phone, online, WhatsApp sessions and when appropriate in person. Corner stones of Peer Support: In whatever setting or conteaxt this support takes place; there are cornerstones to the ‘Peer Support’ relationship: o An alliance based around trust and respect o An opportunity to reflect and explore possible actions o The identification of clear objectives and intended outcomes for the person being supported. o A process that includes testing out actions and reviewing progress o Listening to each other o Working together within time limitations Main potential outcomes: Being Supportive: This should be embodied through a trusting relationship, with the peer building up resilience and see an improvement or change. Helping to Expand Opportunities: The development of knowledge, understanding, personal/self management skills, a growth in confidence and improved quality of life. Specific/Targeted: This may be around a simple conversation to more complex needs around their specific issue(s) whilst dealing with their long term condition. Change of behaviour: A reduction of unwanted behaviours, an improvement in relationships etc.

14 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Softer outcomes: There can also be other outcomes that may not have been intended or set within goals that are an addition to the mentoring process: o For the Supporter and Peer there may be an increase in confidence or motivation o There could be progress made within employment, or a level improvement in the way they manage there treatment o The ability the action behaviours that elicit change in someone’s life o An increase in communication skills such as listening, decision making or reflecting o An understanding of one’s self, and becoming more self-aware in life and in relation to others Being Non-Judgemental Everyone’s lived experiences are different, and over the course of being a Peer Supporter you may come across people whose views and actions differ to your own. It is important to accept people as they are and to acknowledge that they want to make positive changes in their life by accessing the service. Contact & Arrangement of Sessions Peer supporters may use their own personal mobile phone for mentoring if they are agreeable, however they should endeavour not to be handing out their number. Any contact that needs to be made between the supporter and patient/carer outside of the designated session should be made through the Peer Support Manager. This will also help ensure that inappropriate contact is kept to a minimum.

15 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Record Keeping Supporters must keep records of all conversations and meetings with patients/carers. Records should be kept securely using the template provided, with no patient/carer identifying information on the form. This should then be passed to a staff member of the Network as soon as possible. Paper copies should be scanned, securely stored and destroyed as soon as possible. Referrals Referrals are made to the Peer Support Network via a number of routes; however, most referrals will be self-referrals or come from clinicians. When a referral comes in to the Peer Support Network, the patient/carer is assessed as to what they would like to access and what would benefit them the most. If one-to-one Peer Support is deemed suitable for the patient/carer, a member of Network staff will match them with a supporter based on location, experience, and availability. Referral Flowchart

16 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Ending the Peer Support Relationship The ending of any helping relationship can be a negative experience for both the patient/carer and supporter if not managed correctly. Before the final session it will be discussed with the Peer Support Manager if an extension is appropriate. The patient/carer should be aware of when the final session is occurring. The final session will be agreed with the patient/carer and it will need to consist of a reflective element on how the Peer Support has worked for them, and how to carry forward any positive change. If patients/carers with whom a Peer Supporter has already ended a relationship start getting in touch again, particularly looking for support, this should be passed on to the Peer Support Manager immediately so issues can be worked out regarding this. It may be inappropriate to continue a helping relationship outside of the agreed Peer Support framework.

17 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Peer Supporter Limitations Don’t • Don’t get into any situation that is beyond your competence- check with someone else if you are unsure. • Don’t impose your values on someone else. • Don’t talk about your own personal life, other than experience relevant to your Peer. • Don’t get over involved because you want to help. • Don’t pressurise someone to work with you if they don’t want to or can’t. • Don’t give counselling or opinions as to what are the best options. • Don’t work with someone you know unless you have discussed the implications with your supervisor. • Don’t offer absolute confidentiality. • Don’t touch anyone unless you are absolutely sure it is acceptable. • Don’t bad mouth your organisation or another, or talk about other clients in sessions or outside (e.g., With friends or family) • Don’t go to someone’s home or area that you feel is unsafe for you or them. Do • Actively listen to what the person is saying. • Help them prioritise what is important to them. • Accept them and their reasons rather than challenging them. • Be clear about your role, what you can and can’t do. • Offer information on other agencies and services you are aware of. • Reassure the Peer that what they say will be taken seriously and is confidential to you and your team unless there is a serious risk to them or others. • Be respectful and encouraging.

18 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 • Pay attention to your own values and attitudes in working with someone. • Be aware of the law and the policies of the organisation you are working with in relation to >[email protected] You can also contact: • Andy Henwood: Peer Support Patient Lead • [email protected] • [email protected] • Patient/Carer WhatsApp group • Mobile: 07950 112787 • Mel Lagan: Renal Nurse Support • [email protected] • [email protected] • Harrogate Renal Unit (see below) • Dr Paul Laboi: Lead Consultant Unless it is for confidential reasons, please contact Dr Laboi through Andy or Mel. The following may also be useful contacts: York Hospital Switchboard: 01904 631313 York Renal Admin: 01904 725370 York Renal Unit: 01904 725371/8 Harrogate Renal Unit: 01423 554513 Easingwold Renal Unit: 01904 724800 Scarborough Renal Unit: 01723 357810

37 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Specialist nurses’ office: 01904 724143 Renal social workers: 01904 721900 Renal pharmacist: 01904 725963 Renal dieticians: 01904 725270 Renal psychology team: 01904 725353 Renal Physiotherapy: 01904 (TBC) Chaplaincy Service: Via switchboard 01904 631313 Patient Advice & Liaison Services: 01904 726262, Email: [email protected] Kidney Care UK Advocacy Officer: 01420551002 Karolina Holewińska-Suchanek [email protected] KPA (Kidney Patient Association): 0800 1690936 (free helpline) www.kidney.org.uk Carer support: Access contact details via renal social workers 01904 721900; Pets - Keep your pet (charity): 01904 866070 Email: [email protected] local service by volunteers to support older and vulnerable people to look after their pets at times of health or other emergencies.

38 York and Scarborough Hospitals Kidney Patient Peer Support Network Handbook V7.2 dated 07/02/22 Acknowledgements York and Scarborough Hospitals NHS Foundation Trust would like to thank all those that have contributed to the creation of this handbook, including; • Kidney Care UK (KCUK) Peer Support Toolkit - https://www.kidneycareuk.org/healthprofessionals/peer-support-toolkit/ • Mind Peer Support - https://www.mind.org.uk/information-support/drugs-andtreatments/peer-support/about-peer-support/ • National Kiney Federation (NKF) KPA’s - www.kidney.org.uk Authors Andy Henwood: Renal Patient (Network Manager) Melanie (Mel) Lagan: Haemodialysis Nurse (Network Nurse Lead) Consultant Nephrologist: Dr Paul Laboi (Network Lead Consultant) “Reproduced/Adapted from Ref. https://www.kidneycareuk.org/health-professionals/peersupport-toolkit/ with permission from KCUK. “Copyright Notice required: Reproduction of this document should requested through the York and Scarborough Hospitals Peer Support Network Manager via [email protected]”.