• How can Counselling Help?

    Living with any on-going health condition is challenging, whether you’re newly diagnosed, ‘had it for ages’, or if it’s someone you know who has the condition. Any on-going condition has its ups and downs: sometimes it’s more in the background and sometimes it’s more ‘in your face’. Often, talking to family members or friends can feel very supportive, but sometimes the thoughts, feelings or situations you are experiencing might feel complicated, confusing or difficult to talk to them about. That’s when it can feel helpful to talk to someone who has been trained to help you express and explore your thoughts and feelings from a more neutral position.

    Sometimes, just one session will be enough. Sometimes several sessions over a few weeks is useful in helping you understand and manage difficult feelings, choices and experiences.

    About PPSUK’s Counselling Service

    Our free and confidential Online and Telephone counselling service is available for all our UK-registered patients and family members (aged 16 years and over, or 14/15 years with parental consent).

    Our counsellors are trained and experienced practitioners registered with either the British Association for Counselling and Psychotherapy www.bacp.org.uk, or the United Kingdom Council for Psychotherapy www.ukcp.org.uk. They also have additional training and experience in understanding and managing the impact of PPGL, and associated diseases.

    Our Counsellors are Kym Winter (Lead Counsellor), David Phipps and Rebecca Hargreaves.  They are often to be found providing valuable input at our Annual Patient Information Days.


    Our Counselling Service is provided in partnership with rareminds CIC    

  • Kym Winter

    Kym has over 25 years’ experience as a psychotherapist, and as a consultant and psychotherapy services manager in a variety of settings including charities, residential mental health services, the NHS and in higher education. She is also the Founder and Clinical Director of the non-profit organisation rareminds CIC that raises awareness of the psychological impact of rare diseases, and provides specialist counselling and emotional wellbeing services to rare disease organisations.

  • David Phipps

    David has over 12 years’ experience working for IAPT, GP surgeries, CRUSE Bereavement Service, and in hospital /residential psychotherapy services. He has had a long-term interest in supporting those living with physical health conditions to live well, and now works primarily Online with rare or chronic disease patients across the world.

  • Rebecca Hargreaves

    Rebecca worked as a nurse for over 20 years before re-training as a Counsellor. She has particular interest in the psychosocial impact of health conditions in the family, and especially on young people. As well as being a counsellor for AMEND and a number of other rare disease charities, she works as the Counselling Service Co-Lead in a large secondary school.

  • 7 Secrets to Living Well with MEN (relevant also to PPGL Syndromes)

    Watch Kym’s presentation on emotional wellbeing from AMEND’s 2015 Annual Patient Information Day for lots of tips for coping with life with MEN.

  • Coping Strategies for MEN Patients

  • Mindfulness

    AMEND’s 2015 project aims were to help people to develop strategies for coping with living with rare endocrine syndromes like MEN and PPGL (patients, carers and family members).

    Our free-to-access podcasts will help you learn about and practice Mindfulness and are available on AMEND’s YouTube Channel (AMEND3).

    Click here to visit the webpage for more information.

  • Other Resources

  • I had a black dog, his name was depression

Other Sources of Help