Support for parents

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The MPS Society can support parents in a number of ways.

MPS Society Counselling Service

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. Counselling can help by providing a safe and confidential space for you to talk to a qualified, experienced counsellor about your issues and concerns. Our counsellors understand the psychological and emotional challenges of living with a rare disease. They will not tell you what to do but you will be able to talk through difficult thoughts or feelings, think about options that are open to you, or explore new ways of approaching your difficulties.

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 is able to provide therapy both in Arabic and English.

How do I make an appointment?

By email: to advocacy@mpssociety.org.uk. 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.

 

For more information including a video from Rareminds explaining the counselling service, please visit our MPS Society Counselling Service page.

 

Support events

During the year there will be events to support the needs and preferences of parents. These include workshops and groups as well as mindfulness courses. To find out about upcoming support events, please visit our Virtual Events 2022 listings.

We also have some resources online which you might find useful. Our mental health and wellbeing videos for adults can help you in managing and dealing with anxiety as well as developing techniques to build resilience.

Bereavement support

We understand how overwhelming it can be to experience grief and we are here to support you as parents as well as the rest of your family. For more information about the many ways we can help you at this difficult time, please visit our Bereavement support and palliative care page.

 

The support and advocacy team

We offer an individual advocacy support service with skilled and experienced staff who can offer you a wide range of support depending on you or your family’s needs.

Our helpline is open 9-5pm Monday-Friday: 0345 389 9901 or you can email: advocacy@mpssociety.org.uk
Out of hours support line: open 5pm-10pm Monday-Friday and weekends: 07712 653 258

Useful links

 

For advocacy

For adults and young people

For sibling support

Helpline

 

It helps if you can talk openly and honestly with your child’s health care team about your family’s feelings, preferences, and concerns.

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 or

Contact us

Complete the form below to send a message to the advocacy team

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