Rare Minds provide a counselling service which is free to MPS Society members. This is a confidential service available to both patients and family members who are over 18.
Please contact your MPS Society Support and Advocacy Officer if you feel that this is a service you may benefit from.
You can find out more about the Rare Minds counselling team on their website. Therapy is available in both Arabic and English.
Watch the Rare Minds video below explaining their counselling service.
Frequently asked questions
By offering a reliable and confidential relationship to talk through whatever is troubling you. It can offer support during difficult times, or in making sense of present difficulties that may stem from past experiences, or fears about the future. Counselling can help you find ways of understanding and managing difficult feelings, or dealing with situations differently.
It can also help you with strategies for managing specific issues such as panic attacks, fatigue or anxiety around scans/treatments.
As living with MPS, Fabry and related diseases occurs within the context of everyday life, it is 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:
Relationships – with a partner, family members, or your medical team
Anxiety or low mood
Coping with tests and treatments
Dealing with diagnosis
The impact of MPS conditions on your life choices, and work
The psychological and emotional impact of symptoms
Body image or identity
Loss or bereavement
Thoughts or fears about the future
Our counsellors will not tell you what to do, but will provide a safe, confidential relationship to talk through difficult thoughts or feelings, think about options that are open to you, or explore new ways of approaching your difficulties.
Step 1 – Contact the Support and Advocacy Team
Contact a member of the Support and Advocacy Team in confidence either by email advocacy@mpssociety.org.uk or call 0345 389 9901to be connected with the Rare Minds counselling team.
Step 2 – Make an appointment
Once you have been connected with Rare Minds, a counsellor will contact you with either a time to have a quick chat (to answer any questions you have) or with an initial session time. Your Counsellor will also send you some further information about counselling.
Step 3 – Your first counselling session
Appointments are 50 minutes long and usually on Zoom. If you would prefer to use your mobile, you can let your counsellor know. Your counsellor will explain more about the counselling process. This is also your chance to explain what you hope to get from counselling. You will decide, along with your counsellor, how many sessions of counselling might be helpful, how often (e.g., weekly, fortnightly) and for how long (e.g., the number of sessions which might be appropriate).