Bone Sarcoma Peer Support – Connecting Patients

Being diagnosed with cancer can feel isolating. Three cancer patients, Andrew, Kerry and Greg want to change this. In 2021 they came together and founded Bone Sarcoma Peer Support (BSPS), a UK charity dedicated to connecting patients with shared experiences of bone cancer. Through facilitating one-to-one peer support they hope to support bone sarcoma patients and help them to feel less alone.  

We spoke to the founders of BPSP to find out more about the charity and the support they offer.

Why did you start Bone Sarcoma Peer Support (BSPS)

We started BSPS to facilitate one-to-one emotional and wellbeing support for bone sarcoma patients. The three of us that founded the charity have all had cancer (two of us having being diagnosed with primary bone cancer). We each appreciate what a devastating and lonely experience it can be. 

Through our own experiences, we recognised the value of meeting and speaking with someone who has been through something similar, be it at the diagnosis stage, during treatment, before surgical revision or perhaps adjusting to long-term physical limitations. Being able to ask what to expect or maybe just chatting to someone who can understand because of their own lived experience is invaluable. 

Bone sarcomas are extremely rare though, which means that your chances of meeting someone else who has experienced what you have (or will) is pretty small. That’s where we come in. We make one-to-one connections, matching sarcoma type, treatment and demographic information to ensure the best peer support relationship. 

How can people get involved?

Peer support is a two-way relationship involving a mentor (someone with experience) and a mentee (someone who is looking for support). You can request to be either and at any time. We facilitate support for people at all stages of the treatment journey; mentees who are newly diagnosed, those that are in active cancer treatment, those that have finished treatment and those that are having surgical revisions.

If you’re looking for support as a mentee, you can make this request via https://www.peer-support.co.uk/mentee

If you would like to become a mentor, you can make this request via https://www.peer-support.co.uk/mentor

One thing to note, we are only accepting requests from UK based patients that are over 18.

What does being a mentor involve?

We look for someone who has had a diagnosis and been through treatment for a bone sarcoma.  Someone who is willing and able to share their own experiences with someone who needs support. It’s about providing emotional and social support, understanding and encouragement, a sharing of knowledge and signposting to other support. Importantly, mentors don’t provide medical advice and any support they do provide is not intended to be a substitute for mental health care, and we are very clear on that.

A really important element of being a mentor is listening. To hear someone’s story and their concerns, to understand what they want from peer support and then to offer up (as appropriate) your own experience.

A mentor has to have the resilience to deal with potentially difficult conversations. Providing emotional support to another person with bone sarcoma may not be easy. Their path could be a difficult one, which means your guidance is even more vital.

You don’t have to done anything similar previously. Once you’re onboard, and prior to the first match with a mentee, we put each new mentor through some training on mental health first aid, supportive listening/communication skills and safeguarding. After that, there is on-going support from BSPS as required. 

Once the match with a mentee is made, it is then up to the mentor and mentee to agree on how often they would like to talk and how those discussions will happen (phone, messaging or email).

How are mentors and mentees matched?

We ask both mentors and mentees to provide us with information about their sarcoma, treatment and themselves and ask mentees to indicate how important those factors are to them in us matching them with a mentor.

The primary matching criteria is sarcoma type, sarcoma location and treatment. We try to match like-for-like as best we can and have successfully matched patients with leg, hip and spinal sarcomas.

Our secondary match is made using more demographic information. Factors such as language, age and gender can be important to how well the mentor and mentee can relate to each other.

We hope these matches lead to more than one conversation but, for some mentees, all they want is a one-time conversation and that’s fine too. So, we spend time working out which mentor will be best for a new mentee.

How long can you be a mentor or mentee for?

As long as you like. In terms of the peer support relationship, it’s up to the mentor and mentee how that develops and how long it lasts. It may be weeks, months or even years. For some, over time, peer support may develop into something more akin to a reciprocal friendship. 

We limit the number of mentees a mentor can work with at any one time. If a peer relationship comes to an end, we will look to match them again.

What is your overall mission for BSPS?

To offer peer support to every bone sarcoma patient. It doesn’t even matter how many take us up on the offer… we just want the chance to make the experience a little less isolating.

A massive thank you to BSPS for taking part in this interview and for the work they are doing supporting people with primary bone cancer.

Visit their website to find out more and get involved.