Summer of Action on PIP

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As part of our MND Costs campaign to minimise the financial impact of MND, we’re campaigning to make sure the benefits system works for those living with the disease, their families and carers.

This summer, as a member of the Disability Benefits Consortium (DBC) we are taking action to make MPs aware of the problems disabled people including people with MND, face when accessing Personal Independence Payment (PIP) – a benefit for people of working age to help with the extra costs of disability.

Join us by meeting with your MP to talk about the challenges people with MND experience when claiming PIP, and urge your MP to help improve the system. We've created a campaign guide, available below, to support you with your meeting.

The problems with PIP:

The current system does not recognise the terminal and often rapid nature of MND. The process for claiming PIP is overwhelmingly complex, involving long forms and face-to-face assessments, and the system is too slow to respond. This is resulting in some people waiting a long time for their benefit to arrive, or being refused the benefit entirely.

The solution:

The best way to improve the system is for ALL people with MND to claim PIP under the Special Rules for Terminal Illness (SRTI).

Claiming under SRTI using the DS1500 form (signed by a clinician), will ensure claims are dealt with quickly, more sensitively and with greater chance of success of receiving the maximum level of entitlement in a timely way.

However, to be eligible to claim under the SRTI, there has to be ‘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 recognised this and has just changed the law to a new definition of terminal illness in Scotland to one based on clinical judgement.

We would like to see this policy change introduced across the rest of the UK to ensure ALL people with MND can claim under the SRTI.

But for this to happen we need widespread support of MPs from all parties.

Join the campaign:

Download our campaign action guide which tells you more about the issues, how to set up a meeting with your MP, and what to say to your MP.

Once you’ve read the campaign guide and arranged your MP meeting, please let us know so we can send you printed materials which you can give to your MP at the meeting. The materials will include a briefing on SRTI and a copy of the All Party Parliamentary Group (APPG) on MND’s report on PIP. These materials will help explain to your MP what the issues are and how they can help.

To tell us when your MP meeting is and to request these materials, please email campaigns@mndassociation.org or phone 020 7250 8447.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262