2018 was a stellar year for Scottish Huntington’s Association!

2018 was a stellar year for
Scottish Huntington’s Association!

Before we got stuck into the business of our 30th anniversary celebrations in 2019, the SHA staff team took a moment to reflect on some of the highlights of 2018. There was a shared feeling in the room of, ‘where did that year even go!?’ but when we paused to reflect it became clear that the year went to good use!

National Care Framework was launched in 4 localities!

Grampian Framework Launch
National Care Framework for Huntington’s Disease – Grampian launch, August 2018

As many of you will know localised versions of our National Care Framework have gone live in Ayrshire & Arran , Fife , Grampian , Lanarkshire & Lothian . Our service staff speak of how it is being used not only by themselves but by other health and social care staff to ensure better results and care for families living with Huntington’s disease. The Scottish Government is now considering how our Framework might be used as a model to help people with other neurological conditions. This is an especially proud moment for everyone who has made this happen, from our family members, SHA staff members, health and social care staff, politicians and more. Here’s to a Scotland where everyone has access to the right services regardless of condition or postcode.

We’re all VERY proud of our colleagues!

Talking of our service staff, they have done SHA proud yet again. We think it would be hard to find a room filled with more caring, dedicated and brilliant humans than our all-staff get together (we may be biased!). But really, our HD specialists, Financial Wellbeing Officers, youth workers and their admin support have really given their all to supporting families this year and that was evidenced by stories shared about proud moments throughout the year and their hopes for their clients.

And we honestly can’t fail to mention the head office staff with our admin, finance and fundraising teams. They never stop pushing to do better and are an integral part of how the charity operates. Thanks for all your hard work to everyone in the SHA staff team!

Fab new resources for young people

Many of us had hearts in their eyes for the new  youth service resources, ‘Living with Huntington’s disease; A guide for Young People Aged 8-12 and13+.’ Although these tools are simple to use, a lot of hard work went on behind the scenes by the SHAyp team. The result is a high quality resource that young people can use, alongside their Specialist Youth Advisor, to help navigate the many complex issues that HD creates in their lives. Well done youth team!

Scotland at the forefront of research for Huntington’s disease

At the end of 2017 the world received some very exciting research news for Huntington’s disease and our phones went wild with hopeful family members! To keep people in the loop we launched HeaDline – a newsletter which gives up to date information on research news from across the globe. We were determined Scotland should be involved in future research and have a voice in all things pertaining to Huntington’s disease treatment. In July we received the news that The Queen Elizabeth University Hospital in Glasgow had been chosen as a UK research centre for Wave Life Sciences’ PRECISION-HD trials! And we’re hoping for Scotland’s involvement in other trials in the future.

Our incredible community of supporters have knocked it out the park for the HD community!

We would be remiss if we didn’t talk about our supporters in this blog. What a year! Our supporters have ran marathons, pop up shops, SHAre tea parties, and so much more. We’ve had people do skydives, wing walks, assault courses, kiltwalks, ultramarathons – the list is endless! All of our supporters have helped fund everything you see above and just as important got people talking about Huntington’s disease! We shouldn’t be surprised by the effort and heart our supporters put into helping SHA but we always are. Thank you doesn’t seem like enough but it’s a start!

Financial Wellbeing Service Blog

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.