MND Costs / Benefits Issues campaigns
The Benefits Lobby!
What initially started as a campaign on benefits rolled into a wider campaign looking at the costs of MND, which now envelopes the benefits work, another campaign I’ve had been involved in!
It started with a trip to Westminster in January 2016, to lobby parliament with other charities collectively known as Disability Benefits Consortium, of which the MND Association played a part. I went to Westminster, and had a fantastic, but very busy day, meeting with 14 MP’s from across the North, including some now prominent politicians! I wrote a blog about the day, on our MND Branch website, go have a read here.
The event gave us all confidence that we could successfully build relationships with MP’s, and positively lobby on MND for benefits issues. So, we now knew we could set about our own asks!
Attendance Allowance
Our first new campaign was on Attendance Allowance, where we actively asked MP’s to support our request stop attendance allowance being devolved to local authorities, over concerns it could affect older people with MND.
Following our work, including at the 2016 Parliamentary reception, we were glad to see we helped win the argument on Attendance Allowance!
During the reception, we were also told that the DWP would start working on criteria surrounding those who are in the ESA Support group, with an indication from the minister that subject to work, people with MND may be declared exempt and they would adopt the position as a principle while the policy was worked on.
With this in mind, and our prior success, we then started a campaign to push this issue into policy. I attended an event in London, where we pushed this matter leading into the 2017 General election, knowing it was not yet formal policy, to seek the assurances of all parties and keep it on the radar!
2017 Parliamentary Reception - APPG Inquiry into PIP
We were glad to hear at the 2017 Parliamentary reception that the info discussed at the prior years event was now policy.
Anyone with MND, once they have had their first ESA assessment, will not be subject to further reassessments, so our collective efforts paid off again! The MND Association are seeking clarification on those still subject to a reassessment as we’d hoped they would be exempt also, but there appears to be a grey area, possibly due to records held at the time not being clear.
At the 2017 reception event. We also launched the APPG inquiry into PIP, with a really simple ask of the DWP; to automatically enrol those with MND on to the higher rate, as it’s highly likely they will quickly need the extra components PIP affords as mobility becomes more limited. We spoke with a number of MP’s at the event, and you can read the blog I co-wrote with our branch team here.
Launch of the MND Costs campaign
To top off a busy year in 2017, for some time we had been asking for evidence on the costs of MND to use in discussions, so we were delighted when Demo’s produced the report on the costs of life with MND. If you live with MND, annual costs are £12,000 a year more than normal, and that’s excluding loss of earnings, which makes it even more! You can read more on the MND costs campaign here, and I’ve been busy getting the message out, we had a great local meeting with some MP’s!
The MND costs campaign, which now includes the work on benefits, continues, so watch this space!
