Peer Support Group - Specialist Mesh Removal Service

This leaflet provides information on joining the Peer Support Group for people experiencing complications from pelvic mesh.

Addenbrooke’s Hospital is one of several regional specialist centres providing services to people experiencing complications following pelvic mesh surgery. The team provides care to people from across the region who are referred to us by their GP or local hospital. The Mesh Complication Service has expertise from a range of healthcare professionals including surgical consultants, specialist nurses, physiotherapists and clinical psychologists.

Why is Addenbrooke’s providing a Peer Support Group

People attending the service have told us how much they would value being able to speak with others who share similar experiences Often people report feeling very isolated, anxious or ashamed or know few people who can understand what they are going through. The difficulties people experience with mesh complications are rarely talked about or understood by friends and family, which leaves them feeling alone and unsupported. There are national and international mesh forums where patients can connect with other people and are extremely valuable. However, we know that some people prefer to meet in smaller groups, which are facilitated to ensure everyone feels safe.

What can I expect from a Peer Support Group?

The peer support group is a semi-structured group facilitated by two clinicians experienced in mesh complications and women’s health.

The size of the group will be between 6 and 10 people. It will be a closed group, meaning no new people will join once the group has started.

Each session will be in two parts. The first part is to provide information and education on subjects relevant to many people experiencing complications from pelvic mesh. The second part will be a facilitated peer discussion. This is an opportunity for attendees to share their own experiences, ask questions, as well as hear advice and suggestions from other people who share your lived experience.

What is the difference between “experience” and “lived experience”?

‘Lived experience’ is a common term used to refer to people who have lived with a condition and therefore have experience of it. ‘Experience’ is different as I can have experience of mesh problems as a professional without ever having lived with them.

What things will we talk about?

The facilitators will have planned certain topics for discussion which may include managing difficult symptoms, coping with emotional distress and impact on relationships. There will be opportunities to share your own personal stories and consider how you make difficult decisions around treatment choices. Everyone attending the group will also have the chance to bring things that they would like to discuss with the group.

How is this different from other support available?

Whilst every professional in the service will always do their best to provide information, to answer questions and to support and care for you, we know that this is not the same as hearing from other people with lived experience. We know that there will be things you may feel more comfortable discussing with a group of peers, than you would with your doctors or family.

Whilst the groups are facilitated by clinicians, they can only provide general advice and information relevant to everyone and won’t be able to answer questions about your specific medical needs. Your clinic appointments will be the best place to bring these questions.

We want to make the group a positive and safe space for everyone who attends. The facilitators will do their utmost to ensure that everyone’s wishes around sharing and receiving certain information are respected. As a group we will have clear ground rules that everyone agrees to and is asked to adhere to

Why are there two different groups?

There will be two separate groups running; one for people who have had treatment to remove all or part of the mesh and a second group for people considering surgery. We know that people who are new to the service and considering treatment options may have very different needs from those people who have already had surgery to remove the mesh. We want to ensure that the discussions in the group are the most relevant and helpful to you as an individual.

When and how often will the group meet?

The group will be 90 minutes long and will take place on the same week day, once a month for 8 months.

The group will be online so that everyone from around the region is able to attend with minimal inconvenience and travel costs.

What will I need to attend?

To be able to join, you must have access to a device (for example a laptop, tablet or smart phone) with a microphone, speakers and camera. You will need to join the group from a location with good Wi-Fi access.

We absolutely insist that everyone joins from a quiet and private space, where no one else can overhear your conversations. This is to protect the confidentiality of everyone in the group. For the same reason, we ask that you join with your cameras turned on and not by audio only.

How can I find out more?

If you would like to find out more or wish to attend the next group please get in touch with:

Dr Lynda Teape, Clinical Psychologist – Email Lynda Teape or 01223 216167

Alison Thick, Specialist Nurse – Email Alison Thick or 01223 349239