Carer Support Service

Practical help and emotional support for families living with SMS

Living with Smith-Magenis syndrome brings unique challenges. Sleep disruption, behaviour differences, managing health needs, educational hurdles and the emotional toll on families can leave carers feeling exhausted, overwhelmed or isolated.

You don’t have to navigate this alone.

Our Carer Support Service is here to support you as a whole person — not just as a “carer.” We offer practical guidance, emotional support and connections to specialist services so you feel understood, equipped and supported at every stage of your journey.

What our support looks like

We know that no two journeys with SMS are the same, and there’s no single solution that fits everyone. That’s why our service is flexible, personal and built for real life.

One-to-one support and guidance

Our team is here to listen, understand and respond to questions big or small. Whether you’re newly diagnosed, facing a tricky behaviour challenge, or trying to make sense of a system that feels complicated, we’re here to help you think through next steps.

We aim to acknowledge every enquiry quickly and respond within days, not weeks — with clarity, compassion and practical direction.

Emotional wellbeing support

Caring for someone with SMS can be emotionally demanding. Alongside our direct support, we’ve teamed up with Rareminds, a specialist counselling service that works with parents and carers living with rare and complex conditions.

Through this partnership, you can access therapeutic support designed for the long-term impacts of caring — including stress, burnout, grief and relationship challenges. This isn’t generic counselling — it’s tailored to the lived realities of families like yours.

What we help with

Families come to our Carer Support Service for a wide range of reasons, including:

• Understanding behaviour and sleep challenges
• Managing stress, burnout and emotional overwhelm
• Finding practical strategies that fit everyday life
• Navigating health, social care and benefits systems
• Supporting transitions across life stages
• Connecting with others who share similar experiences
• Training and awareness for care providers, supported living and residential settings

Some of this you can access straight away; other support is structured and ongoing, depending on your needs.

We’ll help you find your next right step

Where appropriate, we connect families with trusted partners, services and professionals. This can include:

• Specialist counselling support with Rareminds for emotional wellbeing
• Referrals to mental health, social care and behavioural services
• Practical signposting to resources and adapted equipment
• Peer support through families with lived experience

We work at the pace that feels right for you.

Training for care, supported living and residential teams

Helping care settings understand SMS

Many families tell us that a lack of understanding about Smith-Magenis syndrome in care and supported living settings leads to increased distress, unsafe situations and breakdowns in placements.

Alongside our direct support for families, we offer specialist SMS training for care providers, supported living teams and residential homes. Our training helps staff understand how SMS affects behaviour, communication, sleep, sensory processing and emotional regulation, and how these needs can change across the lifespan.

This training is practical and rooted in lived experience. It supports care teams to respond more consistently, reduce escalation, and create safer, more supportive environments for people with SMS.

You don’t have to do this alone

Every family’s experience with SMS is different, and the challenges can be complex. Our commitment is to meet you where you are with clarity, empathy and practical support — so you feel less alone, more confident and better equipped to care.

No one should have to navigate life with SMS without support.