Earlier this year, we conducted a comprehensive community survey to better understand the challenges faced by families living with SMS. The survey revealed alarming statistics that underscore a pressing need for support. Some of the feedback we received, included:
- 70% of SMS families experience regular isolation or loneliness.
- 83% have sought emotional support from The SMS Foundation.
- 46% have faced negative financial impacts due to SMS.
- 46% have had to give up their jobs to care for a person with SMS.
- 29% have been unsuccessful in obtaining respite support from their local authorities.
- 69% have found accessing education for their child with SMS moderately or severely challenging.
In response to these findings, The SMS Foundation has developed a five-year strategy aimed at addressing these challenges. Our purpose is to improve the quality of life of everyone living with SMS through awareness, understanding, and a supportive community. We aim to achieve this by ensuring that every person with SMS is surrounded by caregivers and professionals who are empowered and well-equipped to meet their unique needs.
Over the next five years, The SMS Foundation is committed to pursuing the following key initiatives:
- Prioritising community needs
- Knowledge enhancement
- Building collaborative networks
- Strengthening our team
- Growing our supporter base
- Ensuring sustainability
- Enhancing engagement and branding
We have developed four core programmes, designed to address the challenges faced by the SMS community and provide essential support. These programmes are aligned with our key initiatives, and our aim is that they will have the following impact:
- Increased levels of confidence and number of families and carers empowered and equipped to support a person with SMS.
- Reduced number of families feeling isolated and alone.
- Increased knowledge, awareness, and understanding within the community, and in wider society.
- Improved access to vital emotional, practical, and financial support.
- Reduced levels of crisis and distress within the community.
- Enhanced levels of support that meets the needs of people with SMS.
- Positive educational outcomes and opportunities in adulthood.
Programme 1 – Carer Support Service
Projects and outputs in this programme include:
- Community Wellbeing Service
Our triage 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.
- Online Resources
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.
- Advocacy, Referrals, and Small Grants
We will streamline support by creating an application process and managed service for advocacy, referrals, and small grants. This involves partnering with advocacy providers, establishing service level agreements (SLAs), and collaborating with equipment providers. We’ll also highlight the positive impact of these services by sharing success stories from individuals who have benefited.
- SMS Passport
Our aim is to create an SMS passport prototype to communicate personalised needs and care plans, followed by a pilot scheme with recruited volunteers to assess its effectiveness. We’ll showcase success stories from individuals who have benefited from the SMS Passport to demonstrate the positive impact we anticipate for caregivers, individuals with SMS, and the broader community.
Programme 2 – Education Support Service
Projects and outputs in this programme include:
- Online Education Resources
We are developing resources such as parent guideline documents to support parents through the EHCP (or alternative) process. Additionally, we will also provide education recommendations for SEND leadworkers and teaching staff in schools.
- 1:1 Education Referral service
This referral service aims to provide tailored ‘person-centred’ support to families who are struggling to access an adequate education plan (EHCP) and support within their educational setting. We will collaborate with partners who can help us deliver support and advocate the complex needs of students with SMS.
- SEND Policy Campaign
This long-term initiative will focus on advocating and campaigning for positive changes to education policy. Key objectives will include submitting a Greenpaper on Special Educational Needs and Disabilities (SEND) to influence policy and collaborating with rare disease organisations to amplify our impact.
Programme 3 – Training Programme
Projects and outputs in this programme include:
- Online Training Resources
We provide a range of accessible online training resources, including guides, practical references, and instructional videos to equip parents and carers with valuable knowledge and skills.
- 1:1 Educational Training Courses
Our in-person training course is designed specifically for teachers in a school setting, accompanied by printed course materials for reference. We will also offer ongoing support outreach to ensure teachers have the assistance they need.
- Parents and Caregiver Workshops
Other learning options for parents and carers will include group workshop events for immersive learning experiences. Members also have access to workshop videos, printed materials for reference, and valuable insights from real-life case studies and user success stories to enhance their knowledge and skills.
- Medical Professionals Awareness and Guidance
We will increase awareness to medical professionals through a combination of online and print campaigns. We will also provide guidance information and access to videos ensuring healthcare professionals have the resources they need for enhanced patient care.
Programme 4 – Awareness and Advocacy Programme
Projects and outputs in this programme include:
- Community Activities and Events
We aim to provide a variety of engaging activities and events to bring the SMS community together. This encompasses a biennial National SMS community event, online thematic community activities for broader participation, and in-person regional community events to foster local connections and support.
- Awareness and Policy Campaigns
We will conduct generic awareness and thematic ‘symptom’ campaigns to educate the public about SMS. Additionally, we engage in policy campaigning to advocate for legislative changes, to ensure better support and opportunities for individuals with SMS.
- Networks and Research
We aim to strengthen and expand our relationships with other SMS organisations, and Rare Disease Networks to enhance collaboration and support. Additionally, we’re working to establish a solid relationship with our Scientific and Clinical Advisory board to benefit from their expertise. We will continue to facilitate research initiatives by hosting 1-2 students per year to conduct research projects.
- Medical Clinics
To enhance our support for the SMS community, we would like to pilot an SMS consultation clinic at national events. Our medical clinics will provide a platform for parents to connect with professionals knowledgeable about SMS, fostering valuable interactions and information exchange.