Project information

Rett UK Regional Support and Learning Hubs

To augment the centrally based Support Service by developing local expertise in health, social care & education services particularly for children, improving local support networks to reduce isolation, support the family unit, build resilience and improve the care & management of people with Rett.

April 2017 - March 2018

Charity information: Rett UK

Rett UK logo
  • Need


    Rett syndrome (RTT) is a rare neurological disorder affecting 1:12,000 females. Present at birth, it only shows itself a year to 18 months later, when regression occurs and the sufferer is left with a lifelong complex disability often requiring 24/7 care. Access to the expertise needed to ensure the best outcomes for the family and for the Rett person is crucial, especially at key points such as diagnosis. Families feel isolated, scared and frustrated at the lack of local knowledge and support.


    Regional Hubs bring together Rett families, Rett UK key advisors and local professionals during a 2 day event at an accessible community venue. High calibre presentations from our key advisors disseminating information across a range of disciplines involved in supporting people with RTT, aimed at families and the people who support them leads to increased local knowledge, more confidence in local services and improved family support networks. Combined, this leads to better outcomes for everyone.

  • Aims

    Aim 1

    Increase knowledge of RTT in local health, education and social care professionals in 3 UK Regions.


    » Rett UK Key Advisers & Family Support Team will deliver multi-disciplinary information and advice sessions, sign posting to further resources.
    » Working with our key advisors, we will develop a comprehensive range of webinars aimed at professionals supporting someone with Rett syndrome.

    What success will look like

    Evaluations from professionals involved prior to & post learning, feedback from families on increased confidence in local services, better outcomes for the RTT child reported.

    Aim 2

    Improve the experience of the families accessing local services, esp. at key points e.g.diagnosis


    » Local professionals and families participate in joint workshops and group discussions with parents involved as co facilitators with our support team.
    » Engage the wider community of businesses/services to raise awareness, increase understanding and access local funding to sustain the regional work.

    What success will look like

    Families report in our annual survey using local services more and getting better support from them; less reliance on central office support is recorded on CRM database.

    Aim 3

    Reduce families feelings of isolation, frustration & stress. Improve outcomes for the family & child


    » Parents meet other parents who understand how it is and establish a local support network of families, sharing experiences, tips and advice.
    » Local support group provides opportunities for regular meetings and activities which may have fundraising, lobbying or just social aims.

    What success will look like

    In our Annual Survey, families report: reduced feelings of isolation,
    improved resilience,
    improved family relationships,
    improved outcomes in education and health

  • Impact


    Families support at a local level is greatly enhanced. The health and education outcomes for the child with RTT improve and the family unit is able to function better. Holding 3 Regional events p.a., our KPI would be that 80% of professionals report a greater understanding of RTT and how to apply it to their practice, 80% of families report better support from local health and education services leading to better outcomes for their child, 80% of families report improved family relationships.


    Engaging successfully with local professionals with a rare disorder group when they are working with such small numbers can be difficult unless we are willing and able to be flexible about the timing of sessions, are clear about how it enhances their practice and are prepared to engage with other rare disorders whose needs are similar. We are making links with other groups through Genetic Disorders UK and Rare Connect. High quality webinars will increase learning opportunities for professionals.


    We would do a report six months into the project and at the end of the year. We also have a quarterly newsletter where we would give updates on progress. Monthly management accounts are available and the annual report and accounts would show how this restricted expenditure has been allocated.

  • Budget

    Budget - Project Cost: £15,000

    Loading graph....
      Amount Heading Description
      £5,000 Staff time Prep and delivery of Regional Hubs in 3 areas
      £1,000 Travel Staff and speakers
      £2,100 Accommodation 4 staff, 6 speakers, 1 night hotel, evening meal, breakfast.
      £1,500 Venue Hire 3 Regional events
      £3,000 Catering 3 Regional events 80 people per event
      £1,000 Inclusive activity/resources e.g wheelchair dancing, children's resources
      £1,400 Other admin £500, equipment hire inc. audio/visual £900
  • Background


    Three areas identified for 2017 would be Northern Ireland, Newcastle and Kent and where we are getting the greatest demand for support and concern over lack of specialist knowledge.


    Families including siblings, carers in residential and respite settings, health, education and social care professionals involved with supporting those affected by RTT. Families of other rare disorder groups who share similar needs as our group that we can link with to make it more attractive for professionals to get involved. Teams in health, education and social care will be a focus of the hubs and be able share their learning to a wider audience working with families with disabled children.

  • Why Us?

    Why Us?

    Rett UK with over 30 years’ experience of providing professional family support is the only UK Rett charity doing so. Started by a parent for other families, it is still parent led today. The founding families are still involved sharing their knowledge and experience of the development of the disorder. We have developed solid relationships with key advisors working in Rett syndrome both in the UK and internationally, who will be involved in disseminating their experience and knowledge.

    Read more about the Charity running this project.


    Becky Jenner

    CEO leading on strategy, fundraising and overseeing development of this project. Also a parent of someone with RTT.

    Julie Benson

    Family Support Manager - event management including booking venue, speakers, activities, accommodation and managing budget.

    Patrice Hosier

    Family Support Officer - direct contact with families, helping with delivery of work shops and 1:1 sessions at event.

    Donna Tinch

    Office Manager - providing admin support and assisting with meet/greet, queries at the event, helping with smooth running of the event.


Buys a family 2 days of life changing support

So helpful, more so , reassuring . Of late I have spoken to these support workers many times and I don't think I would cope without them.

Susan Kasler