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SMS Foundation UK

Supporting SMS families for a positive future

We are a small charity that supports families living with Smith-Magenis syndrome (SMS)

Never feel isolated or alone. Call our helpline and leave a message: 0300 101 0034 (we aim to respond to messages within 48 hours).

Newly Diagnosed?

Carer Support Service

The Carer Support Service is an integral component of our five-year development strategy, embodying the very essence of our collective vision and aspirations. At the heart of this programme lies our commitment to fostering a stronger and more empowered community of caregivers.

SMS poses unique challenges, and we understand the importance of ensuring that families are equipped with the resources, information, and support they need to provide the best possible care for their loved ones.

Programme Outcomes

  • Caregivers no longer feel isolated and alone.
  • Expedited response to common enquiries with effective signposting.
  • Access to specialist support and equipment for complex issues.
  • Improved health and emotional well-being for carers, resulting in reduced stress.
  • A holistic approach to managing and caring for SMS individuals, enhancing access to therapies and treatments.

Carer Support Service – Theory of Change Model

Carer Support Service theory of change model
This programme offers four essential services: Community Wellbeing Support, Online Resources, Advocacy, Referrals, and Small Grants, as well as the innovative SMS Passport.

Projects and Initiatives

1. Community Wellbeing Service 

Our triage-based service aims to implement processes to improve our response rates to incoming enquiries, and enhance emotional and practical support to families dealing with a new SMS diagnosis. We will develop safety measures and crisis intervention processes while collaborating with partners to support counselling. We will provide training for our dedicated volunteers to strengthen the assistance we offer. 

Outputs

  • Establishing a triage enquiries service with defined processes and procedures.
  • Providing introductions and support for families facing a new SMS diagnosis.
  • Developing crisis and safeguarding processes to ensure the safety of individuals with SMS.
  • Forging partnerships for counseling services (via Service Level Agreements).
  • Implementing and reinforcing the RePS (Regional Parent Supporters) programme.
  • Training dedicated staff and volunteers to provide comprehensive support.

2. Online Resources and Signposting

We will actively promote carer well-being by publishing various online articles, resources, and advice. Additionally, we’re improving our online signposting to make it easier for caregivers to access practical support, while also sharing inspiring stories from SMS families to offer hope and valuable guidance to our community. 

Outputs

  • Publishing a range of online articles, resources, and advice to promote carer well-being.
  • Enhancing online signposting to facilitate access to practical support.
  • Sharing inspirational stories from families within the SMS community to provide hope and guidance.
Read 5-Year Development Strategy (PDF)

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