21 July 2021 Campaigns
Following the recent news of our Scrap 6 Months campaign win, our Senior Policy Adviser Daniel Vincent reflects on how the campaign got to this point and what will come next.
It’s been a long time coming and far later than we wanted, but the Government finally announced it will scrap the cruel 6-months rule as part of the Special Rules for Terminal Illness (SRTI) and instead expand this to 12 months.
This marks an important and big win, which we hope will have real benefits for people living with MND who need access to the financial support they need quickly and sensitively.
It’s worth reflecting on the campaign journey to get to this point, which cannot be underestimated. When we initially met with officials from the Department for Work and Pensions (DWP) just after Scotland announced its changes to the Special Rules in 2018, the feedback then was the change north of the border was of little significance and the Special Rules system we had across the rest of the UK was working well. In effect, this was viewed as a non-issue that didn’t need changing. We had a very big hill to climb.
To get from that point to the announcement this July has been an epic effort, bringing together support from across the Association, our campaigning partners at Marie Curie, the clinical community and beyond. We have been overwhelmed throughout by the phenomenal support and determination shown by campaigners, volunteers and supporters of all kinds including people living with MND and other terminal conditions, some of whom are sadly no longer with us. It’s also a great achievement when considering the campaign has had to successfully navigate a very turbulent, unpredictable and at times unprecedented political backdrop, which could have easily seen it be kicked into the long grass on multiple occasions. And as described above, we’ve also had to win over a government department that wasn’t aware of and didn’t initially recognise the issue at hand. Given how big the DWP is and the sheer number of huge and much more prominent policy areas it covers, the change the campaign has driven is particularly impressive. The change secured in Northern Ireland has also been monumental, with the campaign having gained overwhelming cross-party support and with an announcement made ahead of Westminster.
So now is the time to extend a heartfelt thanks to everyone involved and we hope those of you who have supported the campaign in whatever form can take pride in the contribution you made to getting us to this point. At the same time, we know many of you will be wondering what happens next, what these changes mean in practice and when they will happen. These are important questions we’ll also be considering.
The announcement initially only provided us with top-level detail, and now that the review evaluation has been published in full we will look at the findings in detail.
At this point however, we know there will likely be a gap between this much welcome announcement and the actual changes being made in law. This is because the change needs to be made across all five benefits the Special Rules can be used for, which requires changes to both regulations and primary legislation. As far as we’re aware, the DWP’s plan is to begin with Universal Credit and Employment Support Allowance next year and Attendance Allowance (AA), Disability Living Allowance (DLA) and Personal Independence Payment (PIP) ‘when parliamentary time allows’. The challenge here will be how long it takes for the changes in primary legislation to be brought forward and passed through Parliament for AA, DLA and PIP. The changes will also cost money so will require extra budget, which will be allocated to the DWP from April 2022.
We’re sure some of you may be wondering how we feel about the change extending to 12 months, rather than removing a timeframe altogether as has been announced in Scotland. Changing to a clinical judgement was absolutely the right thing for the campaign to call for but getting exactly what we wanted was always going to be a long shot and it became increasingly clear that it wasn’t what the government would likely go for. Since the announcement we have received positive feedback from the clinicians we’ve been in touch with and at this stage we feel it best to get the proposed changes which have been so hard fought for implemented and then review the impact they have.
So once the changes have started to become law, we will monitor how they impact on people living with MND. In time we hope to see the vast majority of people with MND accessing the benefits they need via the Special Rules reflected in the data produced by DWP and in the experiences we hear directly from people applying for benefits. We’ll also hope to see positive differences from the clinical perspective, where more clinicians are routinely able to sign DS1500 forms for their patients with MND to access the Special Rules without hesitancy or challenge.
Finally, many of you will remember the campaign also called for the end of a maximum 3-year award length to Special Rules claims, which hasn’t been addressed by the announcement. We were told this will be addressed in the Health and Disability Green Paper, as part of broader proposals for people with severe conditions. Now that the Green Paper has been published, we will take some time to digest the proposals in this area and we plan on responding to its consultation.
So whilst there is still more to be done, we want to thank you again for making the Scrap 6 Months campaign the success story it has become and we will endeavour to keep you up to date with progress going forward.
Find out more about the Scrap 6 Months campaign