The AKU Society provides a free and confidential counselling service for all those impacted by AKU, whether you or a family member are newly diagnosed, or have been living with it for some time.

This service is provided by David and Rebecca from RaremindsCIC. Rareminds is a non-profit organisation that specialises in mental health support for those impact by rare diseases. Both David and Rebecca are trained and experienced counsellors who have undertaken additional training in counselling for rare diseases, and now work with those impacted by AKU.

This week’s blog is written by David, explaining a bit more about the free counselling we provide to the AKU Community:

How can counselling help?

Inevitably, life’s ‘ups and downs’ can impact on your capacity to cope with your condition
day-to-day. There may be times when it feels particularly hard living with AKU, perhaps in
the early days of diagnosis, or if there is a change to your health, your care, or your personal
circumstances in some other way. There has also been a lot to deal with over the last few
years as result of the COVID pandemic, and difficult times ahead given the cost of living
crisis, and pressures on the NHS – all of which can impact our mental health, and that of
those we care about, more generally.

Talking to a trained professional who is outside your usual networks of family or friends –
and who understands AKU – can allow you to speak more freely about what is on your mind,
and what you are struggling with. It offers the opportunity to talk with someone in
confidence and find new ways of dealing with what is troubling you, or explore another

The AKU Society also works closely with Steve Smith, Rareminds Mindfulness Lead who
specialises in pain and fatigue management. Steve recently ran a successful 8 week Online
Mindfulness for Pain, Fatigue or Anxiety Programme for AKU members, so do let or myself ( know if you would be interested in taking part in a future programme!

Wondering about making contact?

A very wide range of issues are brought to us in counselling sessions: relationship
difficulties, worries about the future, difficult feelings, managing symptoms, stresses about
work or family dynamics, feeling low or anxious, bereavement/loss, or difficult decisions
about treatment or life choices. We are always really pleased to think with you about if
counselling can be helpful in your situation if you are unsure, or would just like to find out
more about what is involved before you decide.

All counselling takes place online (usually via Zoom) or by phone, and we have both daytime
and evening sessions available.

If you would like to arrange either an initial consultation, or talk through any queries about
the counselling we offer, do feel free to contact me direct on
marking your email ‘AKU Society’ (all enquiries are confidential) or get in touch with