Project information

National Support Worker

A unqiue, cutting-edge UK National Support Worker Project accessible 24/7 for children and young people with ME/CFS in crisis. This could save lives and force policy changes that will improve children's lives.

5 years

Charity information: Association of Young People with ME

Association of Young People with ME logo
  • Need


    Children isolated and forgotten remaining unseen by professionals and left to continue into adulthood with a debiliating illness and additonal behavioural and psychological disorders.


    This project will reach out to these children and young people and link them up to ME specialist support. There are only ten paediatric ME specialist teams in England, but once the child is identified by our NSW, the ME specialist teams can link into the local GP and paediatric teams to providing advice and guidance on supporting a young person with ME locally. Vital if the young person is bed or housebound.

  • Aims

    Aim 1

    Identify children and young people who are severely affected with ME/CFS but without support.


    » Employ a National Suport worker to identify and support these children.

    Success will be...Supporting 400 children and young people who are severely affected and linking them support services.

  • Impact


    Children and young people making a good or full recovery from this dreadful condition returning to school, taking exams, going on to college, university andand reaching their full potential,


    There is a risk that will not be able to link ME specialists into local services - especially if the GP does not believe in the condition. If this is the case, we work to provide local support through the local CAHMS teams or other mutlidisciplinary teams.


    Funders will receive a monthly email repotr on facts and figures and expenditure and a full report on outcomes at the end of the year and a copy of the accounts and annual review.

  • Budget

    Budget - Project Cost: £34,000

    Loading graph....
      Amount Heading Description
      £28,000 Salary National Support Worker
      £4,000 Travel Visits to children
      £2,000 Accommodation Over night stays
  • Background


    Teh worker will be based in Milton Keynes but travel across the UK


    An estimated 25,000 children and young people with ME in the UK, ten per cent are estimated to be severely affected.

  • Why Us?

    Why Us?

    We have an established national helpline which highlights children and young people at risk and this work would picked up by the National Support Worker. Our charity has won the respect of health and educational professionals who woudl eb working with us to make this project a success.

    Read more about the Charity running this project.


    Mary-Jane Willows

    Chief Executive Officer. With her experience, skills and knowledge -she will drive and manage the project and train the National Supoprt Worker.