start your own project

Introduction

Standard 1 of the National Standards for Peer Support in HIV states that: ‘everyone living with HIV should have access to peer support.’ Our response to this is the development of a resource accessible for anyone interested in setting up a peer support project for people living with HIV. You may be a clinic, voluntary organisation, informal group or individual.

By peer support we mean people using their own experiences of living with HIV to support other people living with HIV. The principle for setting up a peer support project will be the same for any setting. Therefore, we are hoping that the resource will be useful to people and groups across a range of health conditions – both physical and mental.

The aim of the guidance is that it is:

  • Accessible to all groups and organisations setting up peer support projects
  • Easy to adapt to your particular needs
  • Practical and thorough, offering a structured approach that also encourages you to think creatively about your project
  • Straightforward – offering you the tools and resources you need that safeguards your project but does not over complicate or create an unnecessary burden

The resource has been developed using Positively UK’s experience of developing models of peer support, peer mentoring and peer support training – most recently the Project 100 accredited Peer Mentor training. The intention of this resource is that whether you are developing a small scale, self-started grass roots project or a more formal peer support project within the NHS or voluntary organisation, you can adapt the model offered to your needs.

What is Peer support?

The National Standards for Peer Support in HIV defines peer support as ‘a relationship in which people see each other as equal partners and where the focus is on mutual learning and growth.’ This resource gives help and support to build a structure for peer support, but does not prescribe what your model might look like.

How does Peer Support differ from Peer Mentoring?

Peer Support and Peer Mentoring are often used as interchangeable terms, and are very similar. A Peer Mentor is also someone who has lived through an experience supporting someone new to that experience, however it generally refers to a one-to-one relationship.

Peer Mentoring is often used to describe more structured, one-to-one support over a period of time. The relationship has an agreed beginning and end with a focus on action planning and problem solving when going through a particular issue. Ultimately, a Peer Mentor will model positive behaviour and help create strategies which will lead to better self-management and wellbeing.

How do people access peer support?

The way that people access and benefit from peer support ranges from one off, circumstantial interactions to entering into a more formal one-to-one relationship (Peer Mentoring), or structured group support:

In this resource we are suggesting a model for any kind of peer support, but generally that which involves something that is more than incidental. You may be an individual, keen to start a walking group for people living with HIV (or possibly another mental or physical health condition), or an NHS Sexual Health Clinic wanting to incorporate peer support into your service. This resource will help you build your foundations and allow you to be creative.

A note about terminology

Different peer support models and projects will refer to the volunteers or employees delivering support in different ways. As this guide seeks to offer guidance to for people setting up a range of different types of support, using the term Peer Supporter acts better as an umbrella term for all types of peer led activity.

Peer mentor

A Peer Mentor is also someone who has lived through an experience supporting someone new to that experience and generally refers to a one-to-one relationship, including self-management, action planning and problem solving. Peer Mentoring might be over a period of time when going through a particular issue.

The evidence for Peer Support

We strongly recommend you refer to the National Standards for Peer Support in HIV in connection with this resource. The evidence of need, and impact of peer support for people living with HIV is well documented and clearly stated in the standards. In addition, the following important documents and research corroborates the evidence of the value of access to peer support:

NHS – Five Year Forward View, October 2014
With the help of voluntary sector partners, we will invest significantly in evidence-based approached such as group-based education for people with specific conditions and self-management education courses, as well as encouraging independent peer-to-peer communities to emerge.

The King’s Fund – Supporting people to manage their health – an introduction to Patient Activation. May 2014
What people do in their everyday lives – what they eat, how much they exercise and how far they follow medical advice – plays a significant part in their need for healthcare. At a time when the UK health system is under increasing pressure to deliver quality care and value for money, it is increasingly important to ensure that patients are supported to engage in managing their health.

At the Heart of Health – Realising the value of people and communities, March 2016
Peer support has the potential to improve a range of welling outcomes, including patient activation, physical functioning, quality of life and social functioning.

National Voices – Peer Support: What Is It and Does It Work? May 2015
There is evidence that peer support can make people feel more knowledgeable, confident and happy, and less isolated and alone…. Peer support may also encourage people to take more care of their health which, in the longer term, could lead to better health outcomes.

NHS Outcomes Framework – 2015/16
Peer support can contribute to Domain 2 – Enhancing quality of life for people with long term conditions

Public Health Framework – 2013-16
Peer support can contribute to Domain 2 – Health improvement. Objective: People are helped to live healthy lifestyles, make healthy choices and reduce health inequalities.

BHIVA – Standards of psychological support for adults living with HIV – 2011
1.2.1 – Psychological wellbeing on the agenda:
PLWH report not being asked questions relating to their psychological welfare by some clinicians. This is despite a large body of evidence showing a high prevalence of psychological difficulties associated with HIV infection. Difficulties include anxiety, PTSD, coping difficulties, sexual problems, suicide and neurocognitive problems.

BHIVA – Standards of Care for people living with HIV, 2013
Standard 9, Self-Management:
People living with HIV should be enabled to maximise self-management of their physical and mental health, their social and economic wellbeing, and to optimise peer support opportunities.

BHIVA guidelines for the treatment of HIV-1 positive adults with ART 2015
3.0 – Involvement of PLWH in decision-making:
Community organisations in the UK have been instrumental in providing a range of information resources for PLWH and peer support services…. working in collaboration with healthcare professionals. They are an important and essential adjunct to clinic-based services.

NHIVNA – A National Nurse-led Audit of the Standards for Psychological Support for Adults living with HIV, 2015
The prevalence of psychological distress among people living with HIV (PLWHIV) is substantially higher than that of the general population with PLWHIV twice as likely to be diagnosed with depression. HIV tends to be concentrated in vulnerable and stigmatized populations, who are already at greater risk of mental health problems than the general population. Psychological difficulties can also result from an HIV diagnosis and the challenges of living with the disease.