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​Minister hears about issues facing people with M.E.

December 17, 2020

On Wed 16 Dec, as members of the Regional Stakeholder Network for Disability, Action for M.E. attended a roundtable discussion with Justin Tomlinson MP, Minister of State for Disabled People, to discuss some of the key issues being faced by the people we support.

In the meeting we raised the concerning experiences of people with M.E./CFS who at the start of the Covid-19 pandemic struggled to get home shopping and essential support that they relied on. The Minister replied that, following these difficulties, a task force made up of supermarkets and charities such as MIND was set up by Victoria Prentiss MP, Parliamentary Under-Secretary of State for Food, and continues to meet and discuss what further support can be offered. Action for M.E. will be contacting Victoria Prentiss MP to see how we can engage with the Task Force and ensure the experience of people with M.E./CFS is represented.

Other issues that were discussed included the Equality Act and the need for individuals to seek redress. This can be considerably difficult for people with M.E./CFS who are already trying to manage their condition and are unable to then seek legal assistance to challenge discrimination. The Minister has stated to us that he is looking into how they can increase enforcement of the Act and will be introducing legislation later on in the Parliament.

A number of the organisations present challenged the Minister around welfare support and the assessment process. The Minister stated that there will be a Green Paper coming out in the New Year which will set out plans for improving assessments, evidence gathering, advocacy support and the appeals process. Action for M.E. will look at the detail in the Green Paper when it is published and consider how the changes will impact people with M.E./CFS before responding.

Finally the Minister stated that there will be a National Strategy for Disabled People which aims to remove barriers and increase participation. The aims of this will be to:

  • develop a positive and clear vision on disability which is owned right across government

  • make practical changes to policies which strengthen disabled people’s ability to participate fully in society

  • ensure lived experience underpins policies by identifying what matters most to disabled people

  • strengthen the ways in which we listen to disabled people and disabled people’s organisations, using these insights to drive real change
  • improve the quality of evidence and data and use it to support policies and how they will deliver them.

Action for M.E. will await this with interest and when it is published we will look at ways to engage people with M.E./CFS with the contents to inform our response. We will continue to campaign for increased support and awareness and will look to see this represented in the Government’s strategy.