Project information

The Black Dog and Rett Syndrome

The project will help identify the risk factors for people with Rett syndrome that can lead to depression and anxiety, provide training to help carers identify signs of depression and how to support them to maintain the best mental and physical well-being.

March 2018 - February 2019

Charity information: Rett UK

Rett UK logo
  • Need


    The first people diagnosed with RTT in the UK are now reaching mid-life. Additional challenges present such as dealing with the longer term effects both physically and mentally, inevitable changes to their personal circumstances faced with ageing parents, bereavement and transition to residential or supported living from a home environment. Research shows that depression is present in people with RTT. Further work is needed to identify how that presents and how it can be treated.


    Little is known about how to keep them mobile, engage and communicate with them, support them through a transition or a bereavement. The project will; identify the possible and likely causes of depression and anxiety to minimise the risk of problems developing, train staff in how to support an older person with RTT to maintain their physical and mental well-being, and recognise signs/symptoms of depression and anxiety allowing carers to intervene before things deteriorate further.

  • Aims

    Aim 1

    Identify the possible causes of depression & anxiety to minimise risk of problems developing


    » Complete survey of carers of older people with RTT; about their physical & mental well-being, their activities and their overall happiness rating.
    » Analyse results and summarise findings in a report
    » Develop recommendations that support the mental health and well-being of older people with RTT, have them reviewed by our key advisors

    What success will look like

    Success will be that recommendations to support the mental health and well-being of older people with RTT, have been written, reviewed and agreed by our key advisors.

    Aim 2

    Train carers to help maintain the physical & mental well-being of someone with RTT


    » Write a training course for parent carers and other carers/support staff
    » Deliver training sessions to support staff in different locations in the UK; 3 Regional events & 4 care settings

    What success will look like

    The training course is written & delivered to a minimum of 120 carers across the year.

    Aim 3

    Disseminate findings more widely to families/carers including other Learning Disabled communities


    » Publish recommendations on web site, Rett News and Family Companion (Filofax style handbook on RTT and related topics), guest blogs, newsletters etc.

    What success will look like

    Recommendations are published on our web site, in Rett News, guest blogs and publications of other interested learning disabled communities.

  • Impact


    The project will support the mental & physical well-being of older people with RTT and improve confidence of carers in being able recognise the signs/symptoms of anxiety and depression to facilitate early intervention.
    Results of the initial survey will provide base line information. Revisiting this well- being questionnaire 6-8 months after training will capture changes in the persons with RTT mental and physical well-being and what changes in practice led to these improvements.


    The risks are that the people we particularly want to target are working in respite and residential settings where budgets are tight and little or no money for training. We are offering the training for free and will deliver it at their work place. We will also have additional free resources including a webinar. We will provide ongoing support through the family support team.


    We will email an interim report to donors 6 months into the project then a year-end report showing how successful we have been in meeting the outcomes. They will also be notified on any substantial changes to the project and receive our publications such as Rett News and Annual Review.

  • Budget

    Budget - Project Cost: £9,915

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      Amount Heading Description
      £500 Initial Survey Min 100 families - paper and survey monkey
      £5,614 Staff time Family Support Manager @£20.05/hr including on costs/ 280 hours
      £800 Printing Resources Family Companion Updates, contribution to Rett News
      £300 Training Resouces Printing training resources
      £300 On Line Resource Updating Family Companion On Line
      £1,500 Staff Travel/Accomm Staff Travel/Accommodation needed to deliver training
      £901 Management Overheads Contribution towards management overheads @ 10% of project costs
  • Background


    The project will support carers across the UK supporting people with Rett syndrome. Training will be delivered at our Regional Events, next year Wales, Midlands and South East England plus 4 other locations in respite/residential services.


    Primary beneficiaries will be people with Rett syndrome, their families and carers including carers working in respite and residential settings.

  • Why Us?

    Why Us?

    With over 30 years’ experience, Rett UK is in a unique position to deliver this project. We are the only UK Rett charity providing professional support for people affected by the disorder and their carers.

    We have established excellent networks with many professionals and organisations involved in supporting people with RTT. Given the complexity of the disorder and its presentation, the usefulness of support from generalist mental health well-being charities would be very limited.

    Read more about the Charity running this project.


    Julie Benson

    Family Support Manager with 16+ years experience in providing health & social care advocacy, training and family support.

    Becky Jenner

    CEO overseeing the project and providing supervision to Julie Benson. Becky has 14+ years experience as a CEO and is a parent to someone with RTT.