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Summer 2019 Shthe Magazinea of Scottish Rehuntington’S Association - Issue No.87

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Summer 2019 Shthe Magazinea of Scottish Rehuntington’S Association - Issue No.87 Summer 2019 SHThe MagazineA of Scottish reHuntington’s Association - Issue No.87 Our fantastic supporters have been reaching for the skies. Full fundraising round-up: Pages 10 & 11 Financial Wellbeing Team delivers £3.2m impact for families SHA’s Financial Wellbeing Service The Financial Wellbeing Service covers (FWS) has been given the Scottish the whole of Scotland and is delivered by Government stamp of approval for a Senior Financial Wellbeing Officer and supporting HD families to manage two Financial Wellbeing Officers based household budgets, access benefit in Aberdeen Royal infirmary, Edinburgh entitlements, reduce debt and alleviate Citizen’s Advice in Leith and the National financial stress. Office in Paisley. Minister for Community Safety, The officers carry out home visits and Ash Denham MSP, has granted the provide information and advice over the project with Scottish National Standards phone to clients and HD specialists. for Advice and Information Providers accreditation, which can only be achieved system challenging, confusing and As well as advocating on behalf of clients by organisations that demonstrate a high complex, meaning they are unaware of and intervening in times of financial quality of service and advice. entitlement. challenge, the team provides support through periodic financial ‘health The endorsement comes as the SHA team Jo Baldock, Senior Financial Wellbeing checks’ and claims such as PIP (Personal marks another significant milestone. Since Officer, said: Independence Payment) and Employment the project launched in 2015, more than “The Financial Wellbeing Service and Support Allowance. £3.2million in extra income has now been provides a vital lifeline to families across secured for over 750 people affected by the country who could otherwise miss They provide advice and information HD across Scotland – that works out at on financial planning matters such as out on the benefits they are entitled to, more than £2500 on average per client Power of Attorney and Care Costs, as every year. or find themselves facing significant well as helping increase access and Two-thirds of families affected by HD exist hardship as it becomes more difficult to understanding of financial products on income below the national average manage their finances. including insurance and pensions. and one in three families lives below the poverty line. The debilitating nature of the “We’re delighted to have met the high The team can also help with access to disease often means that people’s working standards for accreditation as set travel concessions, and energy grants such lives are cut short, and carers may also out by the Scottish Government. This as the Warm Home Discount. need to give up work to meet the growing accreditation is testament to the hard needs of family members. work and expertise of our SHA Financial Wellbeing Officers, who are committed to People facing this change in circumstances can find the benefits making a positive difference to the lives of people and families living with HD.” Follow us on Facebook scottishhuntingtonsassociation on Instagram scottishhuntingtons on Twitter @scottishhd SHAre engaging with officers from the partnership over several meetings and helping them to understand the impact of Huntington’s disease on families. At the same time, they have lobbied local politicians, getting them on board to help make the case for improving services. Together we have worked very hard and it has made a real difference to the support available. With a little more work I am optimistic Moray families will be able to access much better support. Meanwhile in Dumfries and Galloway, we are close to completing the Care Framework assessment process and I am delighted to report we have had very positive engagement with NHS and HSCP partners throughout. We are now at the stage of finalising how the ‘HD Specialist’ and clinical lead support will be provided. Our expectation Writing this at the end of July in the middle this year’s is, by the end of autumn, this year, we will have concluded heatwave, seems an appropriate metaphor for turning this work and following on from the success in Moray, up the heat in areas of Scotland where access to there will also be much improved access to support. I will specialist support is perhaps not as well-developed. keep you posted on progress. Our National Care Framework has opened up many opportunities to engage with some of those areas and In Forth Valley, we have enjoyed four months of engaging also provides a framework for how to develop better with local practitioners and managers and exploring how services. support for HD affected families is delivered. I think we have all been impressed by how committed the small, In Moray, an area that has lacked specialist support under-resourced team are in Forth Valley and there is for some years, this has recently resulted in a range of access to a good network of support through the local improvements. The Health and Social Care Partnership Neurology Nurse, David Thomson and the HD Clinical has funded a local Parkinson’s Nurse to undertake an Lead Tim Soane. What is currently absent is the proactive additional day per week so that she can also care for HD community support that families need to access on a affected families. The post is initially for one year, but there day-to-day basis and we met recently with local are ongoing discussions and we hope to see this become stakeholders to begin to build a business case for permanent. The HSCP has also funded the nurse to attend improving this situation. this year’s Continuous Professional Development Course at Stirling University. At the same time SHA is working Three different areas of Scotland, three very different sets to map out better multi-agency arrangements to ensure of challenges, but in each case we are making headway in families get access to the range of support they need. improving care and we will continue to work hard to make sure every area is as close to the aspirational standards of Local families have played a pivotal role in making the National Care Framework as possible. this happen and have been wonderful advocates, Hannah joins SHA in new role Welcome to Hannah Platt, our new Community Fundraising Assistant who joined us in July. Hannah graduated recently from the University of Edinburgh where she received a 2:1 MA in History. During her studies, Hannah focused primarily on the history of gender and witchcraft. While at uni, Hannah volunteered with Alzheimer Scotland and Aberlour Children's Charity. Hannah will be working from the national office where she will be in charge of bags, buckets and collections as well as helping out at events. Hannah is looking forward to developing her career in fundraising and is excited to be with us. She looks forward to meeting you all soon. 2 Karen Sutherland, Operations Manager, and Lynn Garrett, Assistant Operations Manager, bring you up to date with the work of the Adult Clinical Service teams across Scotland. It has been a busy few months with a record number of Lindsay Wilson HDS in the Tayside service has had her new referrals across all the services – including 13 for hours increased to full-time for the next year to help the Lanarkshire service alone. cope with the ever-increasing demands of the Tayside service, especially the additional work created by Most teams are still very involved in the ongoing work to the growing number of people coming forward to sign up develop and promote the localised HD Care Framework for the Enroll study. and Glasgow are preparing to launch theirs next month. Development work continues at a rapid pace in Sixty carers, along with SHA staff, volunteers and trustees Highland, Forth Valley and Dumfries and Galloway. It is attended the 2019 Carers’ Conference, which took place exciting and rewarding to experience the commitment at in the beautiful surroundings of Balbirnie House of all the people involved in the local Frameworks, their Hotel, Glenrothes in Fife. dedication, enthusiasm and quest to “make a difference” to the lives of people living with HD is overwhelming. This year’s focus was to enable carers to look at how they could build a toolkit of resources and information and We have been encouraging as many people as we can to to explore ways to build resilience and skills required to sign up for Enroll study. The Fife, Glasgow, Lanarkshire and provide support with confidence for their loved ones. Grampian services continue to support family members who are participating in the local trials and Glasgow and They all had fun too participating in Zumba, Yoga, the Grampian look forward to assisting with the recruitment Hounds For Huntington’s Race night and eating the and support of families looking to participate in the next scrumptious cake. stage of the Roche trials. On behalf of all the staff in the Adult Clinical services, I The Lanarkshire service is welcoming new member would like to take this opportunity to say thank you for of staff Kirstin Meikle who will take up her post as your ongoing support. Our staff as always value their HDS this month. Kirsten will support Rhona as Senior extreme privilege to serve, work with and support our HD HDS while Linda Lucas takes a year out on Maternity community across Scotland. leave. We wish Linda well! 3 SHAre in brief Volunteer Awards This year we’re inviting you to tell us Family Conference about an amazing volunteer whose kindness and commitment helps people This November’s Family Conference Olympic medalist Sarah Winckless, our and families to meet the challenges of promises to be an extra special patron, will deliver the keynote address, Huntington’s disease.
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