How did Pippa get involved?

Pippa was diagnosed with genetic haemochromatosis 5 years ago. She described being diagnosed as being diagnosed ‘by chance’. Whilst receiving her first Venesection, she was given a Venesection Diary and signposted to Haemochromatosis UK by her medical team. Pippa became a member of the organisation shortly after and tells me she learnt a lot about the condition by becoming a member and using the charity’s resources.  

After some time, an email was circulated to HUK members, searching for those who may be keen to Volunteer as part of the Helpline. Pippa put her name forward and was pleased to be accepted as a volunteer. Today, she is a GH Buddy, offering support to those affected by Haemochromatosis. “I am there to listen, and to support where I can.” 

What does Pippa do as a volunteer - what's involved? 

People who would like to receive support from a buddy make a request via the Haemochromatosis UK website. These people are then ‘matched’ with existing buddies, who will initiate contact with them via either telephone or email.

Pippa noted that as a buddy, she often gets ‘matched’ with people who are newly diagnosed and looking for reassurance at the beginning of their journey with the condition. “Not everybody wants a phone call- some are happy to receive an email. Some people only want one phone call, to put their mind at rest”. Pippa told us that with those who are happy just to have an initial phone call, she will try to check in on them after some time, to see if they are doing okay. 

 

“What I never do is give medical advice.” Pippa told me while she is able to offer support and reassurance to those on the other end of the phone, she understands the importance of not giving medical advice or making generalisations. She also signposts to the Haemochromatosis UK website where necessary and encourages conversations with health care professionals where she is unable to give advice. 

What are the benefits of volunteering with HUK?

Before she started volunteering, Pippa was given training in Safeguarding, Bereavement and Emotional Support and has said she has always felt supported as a volunteer, “it is lovely to be recognised by Haemochromatosis UK for what we do.” 

“Everyone has different ways of working,” Pippa told me that each of her fellow volunteers are able to find a way of working that works for them and their lifestyle. Pippa is retired and enjoys spending time with her family. She told me that she feels volunteering suits her, allowing her to “give back”, whilst still making time for herself. 

Pippa told us that most of her fellow volunteers are living with Genetic Haemochromatosis or are affected by it in some way, and people who access the support are very receptive to having conversations with those who have had similar experiences to themselves. Pippa highlighted to me that people who access the support are usually very grateful for it, and she is always pleased when she has managed to help someone.

“I do feel like I am giving something back...In my own small way, I feel I can raise awareness (of Haemochromatosis)”.