If you’ve been on the ADSHG Sanctuary of Support webpage recently, you may have noticed a new addition - the Rareminds Wellbeing Hub, created by Rareminds. Alongside Raremind's podcast, these are vital resources designed to help individuals navigate some of the emotional challenges often shared across rare conditions. We sat down with Kym, founder and CEO of Rareminds, to find out more. 

There is no quick fix for making mental health support an integral part of rare disease care, but with Rareminds and other rare disease organisations, we’re working hard to make sure it is.

Thank you for speaking with us Kym! Please introduce yourself and tell us more about you and Rareminds.

Hello! I’ve been a psychotherapist for nearly 30 years and am the Founder and CEO of Rareminds, a charity dedicated to supporting the mental health and wellbeing of those impacted by rare, genetic and undiagnosed conditions.

Primarily in partnership with patient organisations, Rareminds delivers counselling services, workshops and psycho-educational resources to patient communities, as well as consultancy, training and supervision to organisation leaders, industry and healthcare professionals. We also advocate at a policy level for the integration of mental health support into rare disease care. 

Like many in the rare disease community, I have personal experience of a rare genetic condition in my own family that affected my late husband, and my two now adult children, who were diagnosed in their teens. 

Those of us in the rare disease space know that those living with rare conditions are a sizeable, but still somewhat marginalised, population. Both patients and family often feel misunderstood, coping with the day-to-day challenges and uncertainties around complex interacting emotional and physical symptoms, as well as sometimes difficult interactions with healthcare providers or services. 

I had been aware for many years of the need for an organisation like Rareminds to support and advocate for the mental health needs of those impacted by rare conditions. I just thought someone else would eventually set it up!

Our aim was - and remains - that wherever an individual with a particular condition lives in the UK, they can access a counsellor with at least some understanding of their unique rare condition. 

Congratulations on the launch of your Wellbeing Hub. What is the aim behind this valuable resource?

Thank you so much! We wanted a resource which spoke directly to the unique psychosocial challenges of living with a rare condition. These exist for people living with say cancer, or different sensory impairments, and it just felt needed. Being diagnosed with, living with, or caring for someone with a rare condition creates many challenges, as ADSHG members know! It can impact your sense of self, your relationships, and general daily life. The future may look different to the one you had imagined, and there can be times when it can be very stressful, or lonely. 

So it's totally normal and understandable that there will be times when difficult thoughts and feelings emerge. It can be even more complicated if you have a rare condition that also biologically impacts your mood too, and how best to understand and manage difficult feelings. 

Our Wellbeing Hub has been co-designed by professionals and those with lived experience to help anyone living with the impact of a rare condition. Many small organisations really want to provide more resources that address emotional well-being for their communities but have limited time and resources to do so.

We took the six main themes that people present in our Counselling Services and developed resources around these: dealing with diagnosis, relationships, uncertainty, grief and loss and navigating healthcare. 

Whether someone is newly diagnosed, living with a condition for some time, or going through a particularly tough period, we hope that there is something on the Wellbeing Hub for everyone.

 

How can people use the Wellbeing Hub?

It can be accessed at www.rareminds.org.uk/wellbeing-hub. As rare conditions are very diverse and we are all individuals, not all of the information may feel relevant to you and your individual circumstances  - but hopefully at least some of it will! 

We also hope that it can provide small, condition-specific organisations with some generalised emotional wellbeing resources, which they can then ‘build out’ from to help address the needs and experiences of their own specific communities.

 

You also have a fantastic podcast which people can listen to on Spotify! What is your aim of the podcast?

Again - thanks so much! We just wanted to ‘normalise’ the challenges of living with a rare condition, and open up the conversation about rare conditions and their impact in a way that could be very relaxed and destigmatising. 

The vision is for it to be something anyone can listen to while going about their day, in the car, exercising, resting, where you might say, “Oh yes, so true” or “I never thought of it like that!” to just feel like someone else ‘gets it' really.

We hope that over time, it will also become a way to broaden the general population's understanding of the complexity of living with a rare condition — just as a really good podcast! 

Listen to Rareminds Podcast on Spotify

 

Could you tell us more about the Rare Minds Matter - Mental Health Survey?

The survey had nearly 700 respondents across 188 rare conditions. We wanted to provide a ‘snapshot’ of the post-pandemic experiences of the UK's rare communities' mental health and wellbeing. We then formulated some key recommendations, as also evidenced by our clinical services. These include our key messaging around the importance of integrating mental health into rare disease care generally and the need for care from healthcare professionals that are ‘psychologically informed.’ 

We hope that it will contribute to the growing body of evidence around support for mental health as an unmet need, as well as stimulate further depth research into this area.

What’s next for Rareminds as a charity?

We hope to continue to be a leading voice for mental health support, training, and provision in the rare disease community. We aim to have a conference in the near future and also expand our Couples Counselling. It's become very apparent to us that a tailored couples support programme could have a very impactful impact on many relationships under a lot of strain as a result of a rare diagnosis. 

How can our community support Rareminds’ work?

Please do share and promote our resources such as the Wellbeing Hub to your healthcare professionals and others to help spread the word that it exists! Let us know how we can support you as a community, and what you would like to see us talking about on our podcast. 

Ensuring our sustainability over the next few years in the challenging economic climate is also a core priority. This includes continuing to grow and expand the range and reach of what we do, and also explore different funding streams. If you’d like to make a contribution, however small, we’d be hugely grateful. You can do that via our website.  

What is your greatest wish for the rare disease community?

Basically, that mental health and emotional wellbeing become an integral part of rare disease care. 

Author: Kym Winter. Founder/ Director of Rareminds Visit the Wellbeing Hub Listen to Rareminds podcast on Spotify

 

A shorter version of this article was first published in the Summer 2024 edition of the ADSHG magazine.

 

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