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Project information

Project Rollercoaster

Help young people (aged 16-25) with genetic cancer syndromes, MEN, to transition effectively from paediatric to adult NHS services and better take on responsibility for and remain engaged in their ongoing healthcare during and beyond these difficult years

1 year

Charity information: Association For Multiple Endocrine Neoplasia Disorders

Association For Multiple Endocrine Neoplasia Disorders logo
  • Need


    The journey from adolescence to adulthood is a rollercoaster of change from biological, social and psychological perspectives. This is no more so than for young people affected by a rare genetic disorder like MEN, who, at the same time will be undergoing transition from paediatric to adult specialist health services. Research shows that around 25% of young people become disengaged from health services at this point, with potential severe negative health consequences.


    Project Rollercoaster will fill AMEND's information gap with specially tailored resources devised by young people themselves, including short film on hot topics such as dealing with blood tests/scans, and communicating with parents and doctors. It will encourage input from and increase ownership of their changing responsibilities by young people. We also hope to encourage long-term engagement from young people in AMEND's work.

  • Aims

    Aim 1

    Develop a suite of resources for young people with multiple endocrine neoplasia


    » Young person's workshop weekend to discuss and develop topics and filming guidelines
    » Develop an active and safe young person's online forum

    What success will look like

    Range of films and digitalised resources available to view and download online. Forum available for young people to talk to peers

    Aim 2

    Increase understanding of young people of the importance of ongoing healthcare compliance


    » Develop a short film about compliance and potential consequences of non-compliance
    » Hold a special session for young people at AMEND's Annual Patient Information Day in May 2017

    What success will look like

    Positive feedback received in survey of young people who view short film and attend special Information Day session. Film 'likes' and 'shares'

    Aim 3

    Increase young people's sense of responsibility for their healthcare during and after transition


    » Develop a short film about transition
    » Hold a special session for young people at AMEND's Annual Patient Information Day in May 2017

    What success will look like

    Positive feedback received in survey of young people who view short film and attend special Information Day session. Film 'likes' and 'shares'

    Aim 4

    Encourage better engagement by young people with AMEND's work


    » Recruit a young Trustee

    What success will look like

    Recruitment of Young Trustee to the Board and/or regular young volunteers

  • Impact


    Project Rollercoaster will improve communication about, confidence in, and compliance by young people in ongoing healthcare surveillance during and beyond the phase of transition from paediatric to adult NHS services. This will be demonstrated by both survey and anecdotal feedback of relevant healthcare professionals, and from the young people themselves. By engaging young volunteers in AMEND's work, the needs of this age-group will continue to be addressed into the future.


    Being able to recruit young people to work on this project may be difficult, given the very nature of this age-group and the reason for this project! Based on previous work, making a workshop venue attractive to young people is vital, as are short, visual, digital communications.


    Regular email updates on Project Rollercoaster will be sent to donors and posted via our social media channels and website

  • Budget

    Budget - Project Cost: £6,800

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      Amount Heading Description
      £3,700 Events Workshop weekend and Annual Information Day costs - room hire, accommodation, travel, catering
      £1,500 Films Professional editing of short films on hot topics
      £1,600 Administration Contribution towards regular staff costs for project management and administration
  • Background


    Management of Project Rollercoaster will be performed from our office in Tunbridge Wells, Kent. Our workshop will be held in the centre of the UK to ensure ease of participation by young people from all around the country. Our information days will be held in Manchester (2017) and London (2018). The majority of our membership is in the UK and is fully inclusive. Volunteers will be invited both from inside and outside of our membership.


    Young people between the ages of 16 and 25 will be the primary beneficiaries of Project Rollercoaster, gaining a better understanding of the importance of healthcare surveillance compliance, improving confidence in communicating with peers for support and with medical specialists. By association, parents will benefit from the young person's increased sense of responsibility and ability to communicate.

  • Why Us?

    Why Us?

    AMEND is the only patient group in the UK for families with multiple endocrine neoplasia. We have produced information for adults since 2005, and for children as part of a Big Lottery funded project which ended in 2014. Our children's films were highly commended by the British Medical Association, and other medical societies have endorsed our resources. We have a membership of over 1000 and strong support from the medical profession who help us develop quality resources.

    Read more about the Charity running this project.


    Mrs Jo Grey

    Project Manager

    Helen Blakebrough


    Kym Winter

    AMEND Counsellor to deal with any arising emotional issues