Adults Advocacy service

What is advocacy?

Advocacy is free, independent support to involve you in decisions about your health, care and wellbeing.

An Advocate is an independent professional who is on your side. They can support you to have your say, know and uphold your rights, and feel better resourced to advocate for yourself.

An Advocate is not medically trained, able to offer any sort of advice (including legal advice) or tell you what to do; or act as a secretary or administrative assistant.

We only offer instructed advocacy. This means the person with ME we are working with must have the capacity (ability) to understand the advocacy role and how an advocate might represent them; and be able to state their wishes as well as the actions they would like the advocate to take.

If someone is severely affected by ME, they may need to communicate via a friend or family member. We will do everything we can to facilitate this and make the service accessible to those with severe ME.

Self-advocacy is the ability to communicate your needs. It has three key elements:

• Understanding your needs
• Knowing what kind of support might help
• Communicating these needs to others.

One way to do this is an Impact Statement. We have developed a free Impact Statement template you can download to create your own statement, to communicate how ME impacts you and what adjustments you need to access the services and support you are entitled to. You can share this with any professionals to help them support you more effectively.

The first page of the template gives full instructions for using it. The statement highlights the NICE guideline for ME so you can note the specific ways in which ME impacts you. It explains that ME is noted in guidance to the Equality Act 2010 (Section A5) as an impairment which can give rise to a disability, and notes that by law, service providers must make reasonable adjustments to ensure disabled people are not at a substantial disadvantage due to their disability.

Is our service right for you?

Our Adults Advocacy service works alongside adults with a diagnosis of ME/CFS in the UK who are seeking support with a single specific issue.

We can work with you to identify the barrier or barriers to your advocacy goal and offer options to help you pursue this. We can support you to learn more about your rights and challenge where your rights are not being upheld.

We will encourage and support you to take action for yourself wherever possible, with the aim that your voice is heard and your human rights are respected.

Examples of goals you may be able to make progress on with support from our Adults Advocacy team include:

• ensuring ME is understood as a disability by assessors when applying for a housing assessment
• having your GP surgery put reasonable adjustments in place so you can access appointments
• asking the professionals that support you – including an advocate you're already be working with – to improve their knowledge and understanding of ME.

The ways we may be able to help you do this are:

• signposting to other organisations
• sharing information and resources to empower you to self-advocate
• making a supported referral to another organisations
• offering one-to-one Advocacy support.

Accessing the service

To access Action for ME’s Adults Advocacy service, you must:

• be age 18 and over
• have a diagnosis of ME/CFS
• live in the UK
• need help with something where other parties ignoring or dismissing the impact of ME is causing a barrier
• need help with something where your rights are not being upheld
• need help with something not covered by statutory advocacy
• need help with something not related to welfare benefit claims or ill-health retirement
• need help with something not related to an ongoing legal matter
• able to state your wishes and the actions you would like the advocate us to take; and commit to and participate in the process we agree together.

To refer yourself to our Adults Advocacy service, please contact our Information & Support service.

We will:

• listen to and understand the challenge you are facing
• ask for information about the goal you’re hoping to achieve, and the barriers to this
• review this information to get a clear picture of how we can best support you to achieve your goal
• explain the options we can offer you, and what each one might entail.

If we are not able to work with you to achieve your goal, we will do our best to signpost you to another organisation or agency that may be able to help.

Our Adults Advocacy service adheres to the definition and principles of the Advocacy Charter, including working flexibly to meet the accessibility needs of people with severe ME.