Author: David McNiven

January is a long month. On the calendar it deviously disguises itself as an average 31 day month but this is clearly a lie! By this point in January, our New Year’s resolutions have fallen by the wayside (let’s be honest, exercising every day was never going to happen) and it’s too easy to feel demotivated waiting an eternity for payday and sunlight past 4 o’clock.

However, if you resolve to do one thing this year, why not make your New Year’s resolution to raise awareness of Huntington’s disease!? Why not pick a resolution that will make things better not only for your own friends or family affected by Huntington’s disease, but better for the community as a whole in Scotland and even across the globe! 2019 is the year people learn about Huntington’s.

There are lots of small actions you can take which add up together and make monumental change – especially when we’re all working towards this mission together! It’s #youandmeagainstHD in practice!

Follow our Social Media channels and share our awareness raising posts!

Facebook – www.facebook.com/ScottishHuntingtonsAssociation
Twitter – @ScottishHD
LinkedIn – www.linkedin.com/company/scottish-huntington-s-association
Instagram – @scottishhuntingtons

Subscribe to information about Huntington’s disease and forward on to your own network!

SHAre
Fundraising eBulletin
HeaDline
HD Buzz

Sign up to SHA info here: http://www.hdscotland.org/you-and-me-against-hd

Tell your story!

If you living with Huntington’s disease in your family, you’re a warrior! You face challenges day-in, day-out that other people would never even consider. Your story is worth telling and this really is the most powerful way to help the general public understand this cruel condition. Whether you tell a couple of people who may not have come across HD otherwise, share it on Social Media, or decide to share it with the charity to share more widely it’s worth it. Have a look at Lauren’s story below..

https://www.dailyrecord.co.uk/lifestyle/family-kids/young-mum-reveals-fears-over-13879808

If you want to share your story with SHA, please email gemma.powell@hdscotland.org

Become an SHA Ambassador!

As part of our 30th Anniversary celebrations we’re recruiting ambassadors that can represent SHA in their local area. This could be anything from giving a talk to a local rotary club, organising a social fundraising event, to nominating SHA for support from local business’s – each ambassador has full control over the activities they want to do!

Email sha-admin@hdscotland.org for more information!

Fundraise for SHA!

Raising awareness is one of those great side effects of fundraising (there are many!). We have a full calendar of fundraising events including many external events that you can get involved in or you could even organise your own!

Check out our events calendar here: www.hdscotland.org/fundraising-events/

This blog was written by our Financial Wellbeing officer Katrina Lovie! Katrina pours her heart into our job and supporting families up in the North of Scotland. Here she is talking about the impact of universal credit and a more hopeful future for our families!

Another day and another telephone call to the DWP PIP enquiry line. After a 20 minute wait listening to Vivaldi’s Four Seasons I get through to a real person at one of the DWP’s call centres only to be cut off within the first 10 seconds of answering. Oh no … time to try again. Still, it could be worse. A recent call to the Universal Credit helpline took over an hour.

Having to wait a long time to speak to DWP call centre staff to enquire about a social security claim is just one of the many financial challenges facing HD family members. But help is at hand. My two SHA financial wellbeing team colleagues and I spend a lot of time on the telephone, often when we are visiting families. Dealing with financial issues and making a call to the bureaucratic behemoth that is the DWP can feel overwhelming when daily life is consumed with the reality of living with HD or caring for someone with HD. Yet we all need a decent income if we are to participate in life. A simple task like making a telephone call on a family member’s behalf can resolve an issue and ease the burden a wee bit. I often make calls on loudspeaker so that the family member/s and I can make the call together and tackle the issue as a team.

Family members have been having a tough time in areas where universal credit is operating. Universal credit replaces 6 means tested benefits for working age people. It does not affect PIP, DLA, Attendance Allowance or Child Benefit. On top of the general ‘benefit freeze,’ in place since 2015, and the two child cap,  ‘rape clause’, and ‘bedroom tax’, HD families have suffered because of the 5+ week wait for the first universal credit payment but the most problematic issue for many of our HD family members is the cut to the severe disability premium, worth £64.30/week. This premium simply does not exist under universal credit. The result?  The people who suffer most from this policy are the most severely disabled in our society, some of whom live with HD.

Does it have to be this way?

A resounding, ‘no’.

Hope is on the horizon.

Some social security payments are to be devolved to the Scottish Government including PIP, DLA, Attendance Allowance and Carer’s Allowance. It is to be a rights based approach which sees social security as an investment in people and a human right in itself which is essential to the realisation of other human rights. Over 2000 people have been involved in the design of the Scottish social security system and in response to feedback the Scottish Government have confirmed that private contractors, such as ATOS and Capita, will not be involved in disability assessments for PIP.

Some HD families have already received the Scottish social security top up to Carer’s Allowance which brings Carer’s Allowance in line with Job Seekers Allowance and recognises the crucial role that unpaid carers play in family and community life.

Personally, I’d love to see us go a step further and put in place a basic citizen’s income – an unconditional payment provided to every citizen without means test or work requirement.  The amount is enough to cover the basic cost of living but people would still be incentivised to work to supplement the basic citizen’s income payment. It would replace a lot of the current benefits and personal tax allowances system which are expensive to administer, overcomplicated and unfair. Basic income would provide basic security, allowing people to feel more in control of their lives. Pilot projects have shown that basic income can reduce poverty and inequality, improve health, reduce school dropout rates and, importantly for our HD families, it guarantees income for non-working caregivers, thereby empowering important unpaid roles. To find out more, have a listen to basic income advocate, Professor Guy Standing, speak about basic income in relation to Scotland: https://youtu.be/mLn7Ocs1otU

Whichever form the social security system of the future takes, I do hope it has compassion and kindness as a central priority. The Joseph Rowntree Foundation recently published a report, ‘Kindness, emotions and human relationships: The blind spot in public policy,’ https://www.carnegieuktrust.org.uk/publications/kindness-emotions-and-human-relationships-the-blind-spot-in-public-policy/ It points the way for public policy to better respond to our need for more kindness, emotions and human relationships.