We frequently hear from people with M.E. about the problems claiming Personal Independence Payment (PIP), such as the assessment process not taking fluctuating symptoms into account, and people finding it difficult to take part when experiencing ‘brain fog’ or cognitive difficulties.

If you’ve been affected, we’re asking if you could take part in either of the projects below, which will help influence how PIP is administered across the UK.

Get involved in Disability Benefits Consortium ‘Summer of Action’ (UK-wide)

The Disability Benefits Consortium, of which Action for M.E. is a member, have started a ‘Summer of Action’ campaign to highlight some of the issues with PIP.

The campaign will support people to meet with their MP to talk to them about PIP, and ask that the MP writes to the Minister of State for Disabled People, Health and Work about the issue.

The Disability Benefits Consortium have produced a step-by-step campaign guide, which explains the process of meeting with your MP and offers tips on how to engage with them most effectively.

We’re also asking you to keep us updated on your contact with your MP, such as when your meeting is scheduled, and whether they agree to take action on your behalf. This helps us to plan any further actions, as we know which MPs are supportive of the changes we want to make to PIP.

If you’re not able to meet with your MP, you can also support the campaign on social media. You could tweet your MP, using the hashtag #getagriponPIP, and tell them about your experience of claiming the benefit.

Don’t hesitate to get in touch with us if you have any questions that aren’t covered by the campaign guide, or would like any advice or support in taking part.

Participate in designing Scotland’s new benefits system (Scotland-only)

If you have M.E. and live in Scotland, you can feed into the work of the Scottish Government as it designs the new social security system. A Scottish Government researcher is seeking feedback from people with M.E. on PIP, how it works for them and what could be improved.

Dr Anna Dickinson, Senior User Researcher at the Scottish Government, says:

“Some benefits are being devolved to Scotland, among them PIP. At the Scottish Government, we know that the current PIP process is often very difficult for people with M.E., and we’re looking for people who might be interested in helping us make a better one.

“We would love to hear people’s experiences, get their ideas on possible designs, and their help on making things better.

“We can be flexible about times and places. We understand people may need to reschedule or cancel meeting with us depending on the day. We’d love input, but at a pace that suits our participants. We’re based in Edinburgh, but can travel in Scotland to meet. Alternatively, we can talk on the phone or over email, if that’s easier.

“We’ll be working on this phase of the project throughout the spring and summer, and we’d love people to be involved for as much, or as little, of that time as they’re interested in.”

If you might be interested, or would like to hear more, please get in touch with Anna by email.

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