MPS Society Counselling Service
At the MPS Society, we believe that looking after your mental health is a key aspect of living as well as possible with MPS, Fabry and related diseases.
Living with a rare condition can be psychologically and emotionally challenging in a number of ways:
On relationships in your family
On your relationship as a couple
Your relationship with health care professionals (especially if you have had a difficult journey to diagnosis)
Dealing with difficult, unpredictable or increasing symptoms
Feeling different, lonely or isolated
Becoming a ‘patient expert’
Coping with unpleasant tests, surgery or treatments
Managing work or education
Worries about the future
Bereavement and loss
Your sense of yourself and your identity
The practical and emotional implications of genetically inherited conditions
Our Telephone and Online Counselling Service is a free, confidential service for all those impacted by MPS, Fabry and related diseases. It is open to both patients and family members who are over 18.
Stephen Johnson and Zubyda Azzam are our MPS Society counsellors. You can find out more about Stephen and Zubyda by reading the Rareminds blog post.
Zubyda offers therapy in both Arabic and English.
Although counselling sessions are free to all UK MPS Society members, if you would like to make a donation, please let us know when your referral to the service has been confirmed. Alternatively, you can visit our Donate page.
Please watch the video below from Rareminds explaining the new counselling service.
Our helpline is open 9-5pm
Monday-Friday: 0345 389 9901
Out of hours support line open 5pm-10pm Monday-Friday and weekends:
07712 653 258
We would love to talk with you further if you have any questions about the counselling service.
How do I make an appointment?
By email: to email@example.com. A member of the support and advocacy team will contact you in confidence about making an appointment or arranging for a brief initial conversation with one of our counsellors.
By phone: 0345 389 9901. You will be able to speak to a member of the support and advocacy team in confidence about making an appointment, or arranging for a brief initial conversation with one of our counsellors.
Information about the MPS Society Counselling Service
The MPS Society Counselling Service has both female and male counsellors. It is available to all those impacted by MPS, Fabry and related diseases (over 18) regardless of ethnic, cultural or religious background, sexual orientation or disability status.
All our counsellors are registered with either the British Association for Counselling and Psychotherapy or the United Kingdom Council Psychotherapy.org and are bound by their Professional Good Practice and Ethics Guidelines.
The MPS Society Counselling Service is provided in partnership with the non-profit organisation ‘RareMinds: Mental Health for the Rare Disease Community’.
Please be aware that the MPS Society Counselling Service are not able to offer emergency support in a crisis.
If you are concerned that you may not be able to keep yourself (or another person) safe, please contact your GP, or dial NHS 111 for advice. If your life is imminently at risk, call 999 or go to your hospital A&E.
The following organisations also offer additional helpline support during a mental health crisis, or if you are feeling emotionally overwhelmed.
CALM is the Campaign Against Living Miserably, for men aged 15 to 35. Phone: 0800 58 58 58 (open from 5pm to midnight every day of the year).
SHOUT is a free, 24-hour confidential text-based service for anyone in crisis. Just text SHOUT to 85258.
We understand how overwhelming it can be to experience grief and we are here to support you and your family. Please read our blog about the many ways we can help you.