Susie Rabin is Head of Policy and Campaigns at the MND Association - one of our CAN Mezzanine – Old Street customers. The Motor Neurone Disease Association aims to improve care and support for people with MND, their families and carers, to fund and promote research that leads to new understanding and treatments and brings us closer to a cure for MND, and to campaign and raise awareness with decision makers.
They are currently campaigning to change the law so that all terminally ill people can access welfare benefits quickly and sensitively through the Special Rules for Terminal Illness.
The SRTI process is the fast-track process for claiming benefits, meaning people do not have to go through a long and stressful assessment process. However, the SRTI requires a 'reasonable expectation of death within six months', which excludes many people with an unpredictable terminal illness like MND.
MND would like to see the Government change the law, as Scotland has recently done, to move away from the 6 months definition towards a decision made by a clinician. You can support the campaign by signing the petition here.
1) Your typical day
My days are really varied.
This week we are in the run-up to Global MND Awareness day on 21st June, so we have been quite busy responding to requests from the media, drafting letters and planning work for Friday. Our head office is in Northampton and we also have a lot of home-based staff, so I spent quite a lot of time on the phone, on email and on Skype checking in with colleagues.
2) You’re responsible for…
I manage policy, local and national campaigns and public affairs of the Association. We work across England, Wales and Northern Ireland. Hannah, Alex, Daniel and I from our Policy and Campaigns team are based here in CAN, along with our VIP team and the rest of P&C work from home.
3) How do you feel working in the MND Association?
It is a great charity to work for, we work with some amazingly dedicated and passionate staff and volunteers around 3 nations and what they do and achieve is very inspiring.
Working on a terminal illness can also be very sad – there is no cure and one-third of people die within a year of diagnosis and a half within two years, and it can be very sad when people we work with die.
4) Your greatest achievement
I have worked in campaigns and public affairs for a long time.
From a selfish perspective getting a map of your polling station put on polling cards when I worked at the Electoral Reform Society, it definitely one of my favourites – and personally I have found that quite useful.
The team at MND Association does amazing work here, getting long term awards for people with MND for the disability benefit Personal Independence Payment, so they don’t have to go through constant re-assessments has been a great success in the last couple of years.
5) Your greatest challenge
Personally, is sometimes quite difficult to manage a team that is quite as disperse as ours. Half my team are here in CAN, and half work from home and we have quite a few part-timers.
As an organisation, I think that the biggest challenge is raising the profile of motor neurone disease.
It is relatively rare as a disease and we do often have to start the conversation with decision makers explaining what MND is – it is not like cancer where everyone knows what it is, and many people know someone who has been affected by it.
We do need to make decision makers aware of the devastating nature of motor neurone disease and what they can do to help and support people affected by it.
6) What have you learnt so far?
I already worked a lot in campaigning and public affairs when I started here but I didn’t know an awful lot about MND.
I have learnt a lot about the disease, how complex it is and how we can better support people living with MND, their families and carers.
7) Your plan B…
Possibly just running away to bake vegan cakes...
8) Coffee or Tea?
Definitely tea. But with Oatly. Or hot chocolate. I am a very big fan of chocolate…
9) Your favourite quote…
“All you really need is love, but a little chocolate now and then doesn’t hurt.”
10) Your inspiration?
The staff and volunteers around England, Wales and Northern Ireland and the people living with MND, their carers and families who we work with.
MND is so devastating and has such a huge impact on people, their families and carers, that it is very hard not to be moved by the people we meet.
A young man called James Douglas inspired our Scrap 6 Months campaign, he died of MND earlier this year and he was only in his early thirties. He’d been turned down for disability benefits and his widow Steph, is the face of our campaign on Global MND Awareness day – do visit our website www.mndassociation.org to read about their story.
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