Support today, hope for tomorrow
Support helpline: 01582 798911 other ways to get in contact

Telephone & Electronic Support Services

Support, information and advice is only a phone call away. Our national telephone helpline is open from 8.30 to 4.30pm, 5 days a week but we know email and social media is also really important to our families. Whatever your preferred method of communication, we will respond normally on the same day.

As well as  providing information and advice we are here to listen and provide emotional support in a confidential, non judgemental way. For as long as it takes.

Whether you have just received the diagnosis and are struggling to come to terms with it, or whether you are caring for an older daughter or son and are worried about what happens to them when you are no longer here, we are here for you and we have as long as you need.

Our services are designed and delivered by people who are not only professionally trained but who also have personal experience of caring for someone with Rett syndrome and other complex disabilities.

In our most recent evaluation of the service (June 2017):

  •  100% of respondents agreed that overall, the TESS service provided by Rett UK was very helpful and
  • 91% of respondents agreed that their telephone call was dealt with in a professional and empathetic manner (9% not relevant)
  • 95% of respondents  agreed that the information and advice received had increasd their knowledge and understanding of Rett syndrome (5% not relevant)
  • 100% of respondents  agreed that it improved their emotional well being
  • 40% of respondents agreed that the information and advice had increased their family income (58% not relevant and 2% disagreed)
  • 96% of respondents agreed that the support, information and advice they received had improved the health and well being of the person with Rett syndrome that they cared for (4% not relevant) -
  • 96% of respondents agreed that it helped them feel less isolated (4% not relevant)

‘It’s a very hard and lonely road but Rett UK are always at the end of the phone when needed. They also create opportunities for families to feel inclusive and keep everyone informed about things effecting our everyday lives.’ Alanna, mum to Rory

Direct line to telephone support 01582 798910 email

* If you have used our TESS service in the last 12 months between June 2017 and May 2018 we would love to have your feedback. Please complete this short survey here to help us report on the impact of the service to our funders and secure future funding for this vital support. 

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