I know that financial security can be a very worrying issue for families affected by MND, and so over the last few years we have increased our support in a number of ways. Perhaps the most successful way is that last year our new Welfare Benefits Advice Service helped 700 people receive over £1m in unclaimed benefits. I know that this made a significant difference to those families.
We have also been campaigning for improvements in access to benefits and financial support more widely. We have active campaigns on Continuing Health Care (CHC) funding, Personal Independence Payment (PIP) and Employment Support Allowance (ESA) and I want to take this opportunity to thank everyone who has supported these campaigns and also those who contributed to our recent MND Costs campaign.
‘I think the first thing to say is that we all want the same thing, and that is to stop people living with MND having to go through reassessments in order to receive this benefit.’
In this blog I want to talk specifically about our ESA campaign because I know some members have expressed their concern about the approach we are taking. I think the first thing to say is that we all want the same thing, and that is to stop people living with MND having to go through reassessments in order to receive this benefit. Through its campaigning work the MND community has already achieved a very big success with this. From October 2017 no one with MND claiming Support Group ESA for the first time will have to have a reassessment. Being part of bringing about that change is a major achievement and will bring benefit to so many people living with MND in the future. Many people, both volunteers and staff worked hard for that change and I don’t want their work and success to be lost in the current discussion. We owe a huge thank you to everyone involved.
Unfortunately the new rules on ESA reassessment were not applied to people already claiming ESA and as things currently stand they will have to have one more paper-based reassessment before they are given exemption. This situation is unacceptable and causes unnecessary anxiety and stress for those concerned. We don’t know how many people with MND are in this group, but the total number of people in receipt of ESA is 1.4 million and the best estimate we have of the number of people with MND is about 600. Our approach has been to work with the Department for Work and Pensions (DWP) to find a way to identify those people and exempt them from that final reassessment.
‘This situation is unacceptable and causes unnecessary anxiety and stress for those concerned.’
Through the work completed so far, the MND community has done a very good job of bringing the unique needs of people with MND to the attention of the DWP and the Minister of State for Disabled People, Health and Work. They now understand why people with MND should be exempt and are committed to working with us to find a solution for the 600 people who are still subject to a final reassessment. The problem is, because ESA is awarded on the basis of the impact of a disease on one’s ability to work and not on diagnosis, there appears to be no way for them to easily identify the people with MND from the total cohort of about 1.4 million. The records are all paper based and there is no electronic means of searching for the people with MND.
When we met with the Minister on the 6 February, our trustee, Emma Adams told her of the reality of reassessment from the perspective of her husband Simon who is living with MND. From that meeting we got an undertaking to continue to try to find a solution for the circa 600 people with MND and we are actively doing that. As part of that work we would like to hear from anyone who is called for reassessment – please contact us on firstname.lastname@example.org.
There are no easy solutions but we honestly believe that keeping this open dialogue with the Minister and her team is the approach most likely to achieve the result each and every one of us is seeking. We do not believe this is a weak approach. Quite the contrary, we have a much better chance of success through our hard-won direct dialogue with the Minister than from louder but less direct protesting. We strongly believe, having considered all of the possible options that it is the best chance we have to be successful for the people we serve. I do not just mean success now on this issue, but it also leaves us well-placed to influence the Minister on the many other benefits related issues being considered by government.
Direct engagement at ministerial level is difficult to achieve and without it, we would not have an exemption for people with MND at all.
I completely understand people’s anger over this issue. We all want to right this injustice. I understand and empathise that some people will want to take a different approach and will join the public protest on 28 February. I have taken part in protests myself many times over the years. However, at this current time, the MND Association must take the approach that we think is most likely to get the result that we all want. We believe this is to continue the dialogue with the Minister and her team and use our collective resources to find a way to identify and support the circa 600 people with MND affected. By supporting the public protest there is a risk of that opportunity being lost to our community. We took this suggested approach to our Board of Trustees last weekend and they gave us their strong support.
‘Sometimes there are no right answers to difficult problems and the best any of us can do is to weigh up all of the evidence and make the best judgement we can.’
Although the Association will not be participating in the protest officially, we respect and support everyone’s right to make that decision for themselves. Sometimes there are no right answers to difficult problems and the best any of us can do is to weigh up all of the evidence and make the best judgement we can. I understand that not everyone will agree with us but I would rather do the right thing and be unpopular than do the popular thing but fail to help those affected. We will continue to discuss and review the success of our approach and of course, take a different approach in the future if we think it has more chance of success.
Thank you to everyone who has supported us with the ESA campaign and to those who may not always agree with our approach but challenge us positively knowing we all seek to achieve the same aim. Regardless of whether we agree or disagree on the tactics, it is important that we are all seen to be united behind our common purpose.
Sally has also recorded a vlog covering the above, which you can watch here.