At Haemochromatosis UK we provide advice and support to people with genetic haemochromatosis across the UK. We educate, inform and support people through our website and publications, social media, training for professionals and our public awareness campaigns.

We’re seeking enthusiastic and skilled volunteers with an interest in haemochromatosis to help provide the Haemochromatosis UK helpline by telephone or email.

As a volunteer Helpliner you will help to deliver the Haemochromatosis UK helpline service. The purpose of this role is to maximise our impact and enable us to offer telephone and email support services to as many people as possible across the UK.

You don't have to be a trained counsellor to work on our helpline – we offer full training (see below). All volunteers work remotely, and home-based shifts are always available – meaning you can volunteer from wherever you are.

All helpline volunteers undergo a 4 week correspondence course, delivered via email. At the beginning of the course, you will be asked to undertake our online safeguarding training and assessment (this takes 1-2 hours to complete and can be done at a time to suit you).

Why do people volunteer for the helpline?

  • "When I was diagnosed I read lots of Information some of it misleading, I wanted to help give proper Information."
  • "My motivation comes from a) A strong belief that experienced “expert” patients have a lot to offer the newly diagnosed. b) A desire to help spread awareness and c) A passionate interest in GH and its manifestations and desire to stay in touch with current developments."
  • "When first diagnosed with GH I had great difficulty in accessing information and advice. When the telephone helpline was set up I felt I had the skills, knowledge and appropriate background to be of use."

We work hard to support our volunteers with regular training updates, occasional meetups (online and face-to-face) and other benefits (including a 15% discount in our online shop and priority booking for our events).

If you have any questions about becoming a volunteer, contact our Volunteering Manager, Elizabeth for an informal chat.

Apply Now

What are the benefits of being a Volunteer Helpliner?

  • Be part of a team of volunteers and meet new people
  • Enjoy the satisfaction that comes from helping others 
  • Increase your confidence, communication and interpersonal skills
  • Develop new skills, useful in other areas of your life

What is the time commitment (to become a helpline volunteer)?

We ask that you are a member of our charity or a Friend Against iron Overload, to become a helpline volunteer. All our helpline volunteers received training before joining the helpline rota. This includes :

  • Training in safeguarding (followed by an online test)
  • Training in genetic haemochromatosis, including genetics, diet/healthy eating, mental health aspects. This is delivered as an email correspondence course over 4 weeks. You can work at your own pace; many volunteers take 6-8 hours to complete the course over the 4 week period.

Following initial training, we will arrange specific skills training during the first 6 months after qualifying as a helpline volunteer. These courses are delivered online as webinars and include :

  • Training in listening and bereavement skills. A 2 hour webinar training course delivered by our partners Cruse Bereavement Care in listening to people who have been bereaved.
  • Training in active listening skills and how to empower and signpost people to explore the optiosn open to them, delivered in collaboration with the Samaritans

What is the time commitment (after training)?

  • For the telephone helpline, we ask for your help for 3 hours (between Noon and 3pm, weekdays) once or twice per month on an ongoing basis.
  • For the email helpline, we ask for your help for 3 hours once or twice per month (flexible hours to suit you) on an ongoing basis.

What's involved?

  • Help Haemochromatosis UK to deliver our helpline service by phone and/or email.
  • Respond appropriately to questions, concerns and any distress of callers, using your training and within the remit of a helpliner as outlined in the helpline procedures and standards.
  • Explore what practical or emotional issues callers need to talk through and to provide good quality information at the right level.
  • Signpost callers (without giving medical advice) so that they can consider and choose for themselves what they want to do or happen next.
  • Adopt and adhere to the helpline procedures and standards.
  • Maintain strict confidentiality.
  • Honour the time commitments you make and to give reasonable notice if this is not possible.

What's NOT involved?

We do not expect our helpliners to :

  • Give medical advice, unless medically qualified to do so
  • Answer personal messages or in depth questions from members of the group by email.
  • Share your personal experience or any personal details.

What skills are useful in this role?

  • To be able to communicate effectively, show empathy and patience.
  • Have a good understanding of confidentiality
  • The ability to work equally well in a team and unsupervised.
  • An interest in, knowledge of or willingness to learn about haemochromatosis.
  • Be confident meeting and speaking to new people.

What equipment is needed?

  • A computer or smartphone with access to the internet.
  • A voiphone handset (which plugs into your broadband router) or a mobile phone helpline app will be provided.

What support will you be given?

  • Volunteer induction and training
  • On-going support by an allocated person from Haemochromatosis UK
  • Periodic volunteer meetings (quarterly).
  • A Voiphone (or app to take calls with)
  • Opportunities to become involved in other Haemochromatosis UK activities.