I promised a blog post looking more broadly as the MNDA’s parliamentary reception last week. After writing about our personal experience, it felt important to talk about why we were actually there, and what we set out to achieve.
Sadly, work became busy and my spare time was preoccupied. I tend to write these posts over the course of two lunch breaks, but I haven’t taken a full hour at all this week, so it’s taken four days to draft. If there’s anything I don’t touch upon, or you want more information, I would recommend reading this article or the round up on the MNDA’s website.
The principle aim of the parliamentary reception was to raise awareness of the MND Costs campaign. The MNDA published a report, the findings of which suggested the cost of living with MND is an additional £1000 per month.
It’s true. Rob Owen did a powerful speech about his experiences, and he spoke in part about how his savings could only take so far, especially when making memories for his family proved so expensive. I understand that. I spend around £300 per month on my visits to Leeds, to see my mum. This trip to London cost us a lot, in sightseeing and travel and food, but it was so important for me to have this time with my mum.
That’s just a drop in the ocean though. I don’t even consider that part of the cost of MND. When I think about how much we spend in baby wipes because Mum is rather a messy eater these days, or how much the bills must go up now we have to boil water every day specifically to sterilise her medical equipment – these are the small expenses, the ones you don’t even notice as you hand over the cash, but it all adds up.
Travelling to and from hospital can be expensive too. Thankfully Mum has a bus pass, which entitles her to free travel, and sometimes she will ask for a private ambulance to collect her. Still, a passenger on a bus once told her that she was given benefits, so she should get a taxi if people won’t fold down pushchairs. I suppose he couldn’t know that PIP isn’t a lot of money, and certainly doesn’t pay for luxuries like taxis. Many taxis can’t take her anyway; they don’t have space for a wheelchair, certainly not her electric one.
That was a lot of money too. Charlotte Hawkins talked a little about how immediately people with MND need medical equipment. Often, by the time it is available from the NHS, the person’s needs have changed. In one of the support groups I’m in, someone shared their story about getting access to an electric wheelchair. It took three months for the NHS one to arrive, by which time his mother could no longer use it. Mobility scooters are great, but as MND progresses people need head support, and dual controls for when they can no longer operate the chair. There is no guessing how long it might take for an individual to reach that stage – it could be months, or years, or even a matter of weeks.
Mum wasn’t even on the list for an NHS mobility scooter, because her house wasn’t (and can’t be) adapted. She wouldn’t be put on the list until she’d moved home – another additional expense on our horizon – and we don’t know how when that will be, or how much the disease will have progressed by then. We were lucky that her electric wheelchair was given as a gift; there’s no way we could have privately funded it ourselves.
There was a series of speeches at the reception, which Mum wept through. It was hard to hear Rob’s experiences of reassessments and court battles to get the money he is entitled to. When his PIP was cut, like so many people have suffered from, he had to look at the realities of the cost of MND. It’s a cost many people cannot meet.
That is why we were there, and I hope it will have made a difference. Penny Mordant did discuss some of the changes the government is implicating, including scrapping reassessments for the terminally ill. This, for me, will be the real achievement.
We weren’t there asking for more money, although that’s always nice. We were asking for empathy. We want MPs to understand that everyone suffers with this disease. It is emotionally and psychologically painful, and reassessments and the bureaucracy around PIP is confusing, draining and difficult for everyone involved. That’s why 130 of us gathered in Westminster last week. That’s what I hope we accomplished.
Daughter of MND 
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