What is the PIP Summer of Action?

The Summer of Action is a campaign from the Disability Benefits Consortium (DBC)[i] to lobby MPs on the issue of Personal Independence Payments[ii] (PIP). Volunteers from a variety of charities will get involved, each talking to their own MPs about personal experiences of claiming PIP, and how MPs can help improve the process.

What is it for?

The overall aim of the PIP Summer of Action is to remind MPs that claiming Personal Independence Payment (PIP) remains problematic for many people with disabilities, and health conditions, and to seek MPs’ support to make changes to the claims process. There has been much debate about Universal Credit recently, and while we remain concerned about this benefit, we want to ensure PIP stays on the political agenda.

We have a specific aim in our Summer of Action to persuade MPs to support a change in the definition of terminal illness.

What do we want to achieve for people with MND?

We want MPs to understand that claiming PIP can be a traumatic experience for people with MND, including filling in an arduous form, attending a face-to-face assessment, and waiting a long time for the benefit to arrive (or being refused PIP entirely). A report on PIP and MND published by the All-Party Group on MND can be downloaded hereall Campaigns Contacts will be receiving a hard copy of the executive summary of the report in the post w/c 14th May 2018.

One way of avoiding these problems is for people with MND to claim PIP under the Special Rules for Terminal Illness (SRTI). This is a fast-track process for those who are terminally ill, and does not require people to fill in a long form, attend a face-to-face assessment or wait months to receive their benefit.

To be eligible to claim under the SRTI, an appropriate medical professional must certify that the claimant has a reasonable expectation of death within six months.  This strict time-limit doesn’t work for people with unpredictable terminal illnesses like MND.  The Scottish Government has recently recognised these concerns, and is changing the definition of a terminal illness in Scotland to one based on clinical judgement. We would like this policy change implemented across the rest of the UK and need the support of MPs from all parties to achieve this.

How can we get support from MPs?

The most effective form of engagement with MPs is to meet them face-to-face, so we want active supporters like yourself to meet with your MP in your constituency. At the meeting you will be able to share concerns about PIP with your MP, and ask them to support a change in how terminal illness is defined in SRTI.

Alongside this, we will also be emailing members of our Campaigns Network asking them to email their MP. It is possible that some will also want to set up their own meetings with their MPs. This is fine – we would be very happy if an MP gets contacted by more than one person about this issue.

How do I set up a meeting with my MP?

The first step is to send your MP a letter or an email to request a meeting. A template that you can adapt and personalise was sent with this briefing. If you don’t know who your MP is or how to contact them, enter your postcode into the Parliament website. If your MP has a constituency email/postal address, use it to send your email/letter.

If there is more than one of you living in the same constituency, you could write a letter together requesting a joint meeting. You could also have someone from outside the constituency (such as person living with MND, or Association volunteer) come with you, but the meeting needs to be requested by someone who lives in that MP’s constituency.

If you don’t hear from them within two weeks, call their office (again use the constituency phone number if they give one).

While Parliament is sitting, MPs tend to be in their constituencies on Fridays so you may be offered a meeting on this day. Parliament is also in recess from Monday 28 May to Friday 1 June 2018 so MPs are more likely to be in their constituencies that week. Parliament rises for the summer on Tuesday 24 July 2018. Where possible, we would like the meetings to take place before then.

What do I do if I secure a meeting with an MP?

If you are given a date to meet your MP, please let me know by emailing rachael.martinsmith@mndassociation.org . It’s really important that we keep track of all the meetings taking place, and we will provide you with materials for the meeting, including advice on how to run the meeting, what to say and a briefing on the Special Rules for Terminal Illness (SRTI) to give to the MP. Please also contact me after the meeting to let us know what the MP said.

Any questions?

If you have any questions please don’t hesitate to contact me by phoning 07702 336 552 or emailing ian.chandler@mndassociation.org


Thanks for your support and good luck!

Rae Martin-Smith

Campaign Manager (South)

11th May 2018

[i] The Disability Benefits Consortium (DBC) is a national coalition of over 80 different charities and other organisations (including the MND Association) committed to working towards a fair benefits system.  Using our combined knowledge, experience and direct contact with disabled individuals and carers, the DBC seeks to ensure Government policy reflects and meets the needs of all disabled people.

[ii] Personal Independence Payment (PIP) is a disability benefit for people of working age to help pay for the extra costs of living with a disability or health condition. There are two components to PIP – a daily living component and a mobility component. Each component is paid at two levels – standard and enhanced – depending on the level of disability. Special Rules for Terminal Illness (SRTI) gives fast-track access to the enhanced rate of the daily living component of PIP.