The Gauchers Association has teamed up with Rareminds, a specialist provider of rare disease counselling and psychotherapy services. All Rareminds therapists are fully trained and experienced counsellors, psychotherapists or psychologists accredited (or in the latter stages of working towards accreditation) with a recognised Professional Body.
Counselling means you can talk through confidentially what’s on your mind or how you are feeling with someone outside of your situation. This process can often help you find a new way of thinking or feeling about something or discover a new perspective or way of coping differently or feel less alone with a difficulty.
What sort of things can I talk about?
As living with Gaucher disease occurs within the context of everyday life, it’s inevitable that the ‘ups and downs’ of both impact on each other. You can talk to us about anything that might be bothering you, including:
Sometimes you might not know exactly why you are feeling low or anxious, or experiencing difficulties such as not sleeping, or feeling on a short-fuse, or tearful, and it’s fine to contact us then too.
As soon as you make contact to request an appointment, your use of the service is confidential.
All counsellors and psychotherapists undergo clinical supervision with a senior practitioner, but names and identifying feature are disguised. We do not notify your hospital team or GP that you have made contact with us, and it won’t appear on your medical records unless you disclose that information yourself.
There are a few exceptions to confidentiality, primarily around concerns if you or someone else was at risk of serious harm. Even then, we would always endeavour to think with you about the best person to approach for additional support (such as your GP) so we can all work together to keep you or someone else safe.
This is an opportunity to let us know more about what you are finding difficult or would like help with. We will talk through what you hope to get out of the sessions, and any questions or concerns you might have.
We’ll also decide together the timing, frequency and number, of any further sessions.
Usually, we suggest a series of between 6 and 12 sessions (either weekly or fortnightly) but that is only a guide.
Appointments are usually for 50 minutes.
One of the reasons we have two counsellors on the team is so that different members of the same family can still access the Service. You can then each see a different counsellor to maintain your privacy.
You can contact us if you are a patient yourself, a partner, a parent, or other family member. If for any reason you’d particularly like to speak to either a male or female counsellor, then just let us know that when you make contact.
The service is currently only available to those aged 18 years and over.
We aim to respond to all enquiries within 72 hours. We can usually offer you an Initial
Appointment within a couple of weeks, depending on service demand and mutual
availability.
We do not offer appointments at weekends, but we are able to offer evening appointments.
You are very welcome to arrange a brief initial conversation with one of our counsellors before deciding about going ahead with counselling. Just let us know when you make contact.
If we think somewhere else might be more helpful for you (eg medical advice, money worries, or practical support etc) we will also try to help you find the right support for your difficulty.
Our counsellors are all very experienced in working via telephone or online (usually using Zoom). Do let them know if you have any concerns. They can talk through with you using your mobile/landline or downloading anything you might need for video-sessions if that is what you would prefer.
In some instances, we can also use assisted technology such as speech to text software if you are hard of hearing.
