The SMS Foundation UK is pleased to announce our new partnership with Rareminds, a specialist counselling service dedicated to supporting individuals and families affected by rare conditions. This collaboration marks a significant milestone in our commitment to enhancing carer support, one of our two key priorities identified through our development strategy.
Understanding the Need for Emotional Support
Caring for a person with Smith-Magenis Syndrome (SMS) presents unique and complex challenges that can have a profound impact on mental and emotional well-being. In our 2023 community survey, we gained deeper insights into these challenges:
- 96% of parent/carers stated that their emotional well-being and relationships were affected as a result of living with SMS.
- 90% of parent/carers reported experiencing isolation and loneliness due to their caring role.
- 98% of parent/carers said they feel stressed and/or anxious as a result of caring for a person with SMS.
- 83% of parent/carers had sought emotional support from the SMS Foundation via helpline, social media, email, or messenger app.
These findings highlight the immense burden placed on carers and the urgent need for specialist emotional support. While our small team of volunteers has provided invaluable advice and reassurance for over 13 years, often being the first point of contact at diagnosis or during crises, we recognise the growing need for professional counselling services.
A Step Forward: Specialist Counselling Support
To meet this need, we have taken a significant step forward in 2024 by partnering with Rareminds to provide specialist counselling support. Over the past four months, we have worked closely with Rareminds to build their understanding of SMS, ensuring they can offer informed and tailored support to our families.
We are pleased to launch our pilot counselling service, offering families access to professional therapy sessions to help navigate the emotional challenges associated with SMS.
About the Counselling Service
The SMS Foundation UK is offering a free, confidential counselling service for individuals and family members (aged 18+) impacted by Smith-Magenis Syndrome. This service is made possible through funding from the National Lottery Community Fund grant.
Service Details:
- Duration: 6 – 12 counselling sessions
- Format: Video call or telephone
- Availability: Daytime and evening appointments (weekdays only)
- Counselling Team Lead: David Phipps, an experienced therapist with specialist training in Counselling for Rare Diseases
How Counselling Can Help
Living with SMS affects many aspects of daily life, and this counselling service provides a safe and supportive space to talk about challenges such as:
- The impact of SMS on family, social, or work relationships
- Feelings of anxiety or low mood
- Coping with isolation or loneliness
- Managing the unpredictability of SMS symptoms
- Dealing with the psychological burden of being the ‘expert’ in your child’s condition
- Facing difficult choices and concerns about the future
Limited Spaces Available
As we pilot this service, we are starting with a limited number of spaces to assess demand. We are pleased to have already provided counselling to some families in need and currently have two open spaces available.
If you or a family member are interested in accessing this service, please contact us at support@smith-magenis.co.uk for more information. For further information about Rareminds please visit their website, www.rareminds.org.
Any enquiries received in our support inbox will be handled with complete confidentiality and discretion. The SMS Foundation will make the initial introduction to Rareminds, but no details of counselling sessions will be disclosed.
A Brighter Future for SMS Families
This partnership with Rareminds is an important step in expanding our support for families living with SMS. By providing specialist counselling, we aim to help parents and carers manage their emotional well-being and reduce feelings of stress and isolation.
We look forward to growing this service and continuing to support our incredible SMS community in every way possible.
With huge thanks to the National Lottery Community Fund for your support and funding this service..
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