On Wednesday (28th February), some of the MND Family braved the snow and gathered in Parliament Square to protest the continued failure of the Department of Work and Pensions to follow through on earlier promises to scrap Personal Independence Payment (PIP) and Employment and Support Allowance (ESA) reassessments for the terminally ill already on the highest rate.
Sadly, I couldn’t take the day off work, as I’d taken a day on the 22nd to attend a reception hosted by the MND Association. I was certainly there is spirit, and want to use my platform to reinforce my support for what they are doing.
A survey by the MNDA last year showed that the cost of MND on families is, on average, £1000 per month – before the loss of income. It is a huge financial burden during a difficult and stressful time, therefore the PIP and ESA that sufferers are entitled to does make a significant difference to people’s lives.
Reassessments are therefore incredibly difficult for people with MND. The threat of having these benefits cut is real and daunting. We estimate that Mum will be due a reassessment in May, and it is a concern. Although her condition has progressed so much since her diagnosis, but there is still the ‘what if?’ hanging over us. I don’t know how we would cope with less income coming in.
It is reasonable to assume that with a condition like MND – a progressive, debilitating illness that can only get worse and physically cannot improve that this threat of having benefits cut is unfounded. We know this not to be true. At the Parliamentary Reception last October, we heard from Rob Owen, who had been told by assessors that he was getting better. A miracle! He has only been able to receive what he is entitled to as a result of a long legal battle – which I’m not sure our family have the stomach for, when we have so much to contend with on a daily basis already. You can read his story here.
Part of the problem is that assessors are often not trained medical professionals. They don’t understand the condition. Why can’t the judgement of a GP or other health professional be enough? It is also likely that the person doing the reassessment won’t have met you before, so they can’t use their own judgement. All they have is a checklist, a form to follow through, and then they are done. You leave and await a letter telling you your fate. How is it right?
All of this is undue stress. Just skimming through this blog will give you an idea of some of the challenges we face – the difficulty communicating with my mum, worry about her condition and how her MND will progress, leaving her home for somewhere more adaptable, preparing pureed food because she can swallow nothing else – living with MND is difficult, and why should the state have the power to make it more so?
Why can’t we show some dignity for the dying and allow them to live the rest of their lives without this looming over them? For 50% of sufferers, this will be less than two years.
Another problem I have with these reassessments is the cost to the taxpayer. The country is finally in the black, having a surplus for the first time since 2002 – hurrah! Cuts to services have become a part of our lives, the public sector is being squeezed, and yet the Department of Work and Pensions, despite repeated promises, continue to waste public money reassessing people who can only get worse. Each assessments costs approximately £190, and then there is the cost of court cases as people with debilitating illnesses fight back. It becomes an expensive waste of money that would be better invested into health and social care for these people.
Since 2016, the DWP have promised to scrap reassessments. At the Parliamentary Reception, we naively felt some hope when Penny Mordaunt reinforced this message. Now Sarah Newton is the Minister of State for Disabled People, and has backtracked on everything we were promised. We have been told that at least one reassessment will be inevitable, but that’s ok, because they “understand” the stress and difficulty and concerns we have.
They do not understand. Their bureaucracy is slow, but a third of sufferers won’t live to mark the first anniversary of their diagnosis. Time is of the essence for so many people, yet two years later we are still being ignored. As the signs the protestors on Wednesday proudly held – this is threatening 600 people with MND right now. My mum is one of them.
Scrapping reassessments for people with debilitating illnesses won’t just positively impact people with MND, but with so many other, predominantly neurological, diseases. We need change and we need it now. This is something so small, so easy to resolve, so why hesitate? Save public money money. Give the dying a better quality of life. Scrap their reassessments.
For more information about the campaign and the role the MNDA are having in lobbying the government, please click here.
If you need advice on applying for PIP, or about the reassessment, please click here.