Your Fantastic Fundraising Contents
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Issue number 65 Autumn 2015 Inside: Your fantastic fundraising Contents Care For the families of people living with a Research diagnosis of PSP or CBD, changes in their Find out how you can loved ones’ behaviour or personality can be make a gift to research puzzling and frustrating. through our PSP Research Network. 16 Care Planning ahead for your care and treatment can empower you to make informed decisions in your 6 8 own time. Your Stories Awareness Jordan Swankie, PSPA mascot, Hope from Arbroath, 10 24 the Bear, has had a describes her roller- busy time this summer coaster ride raising awareness. since her dad became unwell. 22 Fundraising When it comes to doing your ‘bit’ to raise funds, take on whatever challenge you fancy. Cover: Cheryl Williams and her friends and family conquered Pen y Fan. The views expressed in PSP Matters, published four times a year, are not See page 28. necessarily those of PSP Association and therefore products and services advertised or promoted should not be taken as recommendations by the The PSP Association Association, who cannot be held responsible should any complaint arise. The PSP Association is a registered charity offering support and PSP Matters is available as a pdf and can be downloaded from our website. information to people living with Progressive Supranuclear Palsy PSP Association Registered Charity Numbers: England and Wales 1037087/ (PSP) and Corticobasal Degeneration (CBD), while funding research Scotland SC041199 into treatments and ultimately a cure for these conditions. We rely Design by Skelton Design and printed by Newnorth Print Ltd, Bedford entirely on donations to fund our work. As PSP and CBD are very similar, we often use ‘PSP’ as a shorthand for both. 2 Welcome… What a busy summer of fundraising! The innovative ways you find to raise money never cease to amaze me. The PSP Association Sadly we can’t recognise everyone’s activities in this magazine, PSP House, 167 Watling Street West, so a big thank you to all those who raise money for PSPA, Towcester, Northants NN12 6BX Telephone: 01327 322410 however you choose to do it. Fax: 01327 322412 Email: [email protected] As you know we rely entirely on voluntary donations. This means it is only thanks to your efforts that we can provide Local Groups: Wendy Crofts, Volunteering support and information to families affected PSP and CBD Telephone: 01327 356134 today, while funding research to find a cure for the future. Email: [email protected] This includes our Research Network, which is making great Fundraising: Jean Kelly, Fundraising and Events strides in PSP research across the UK. Our feature on page 16 Telephone: 01327 356131 explains how you can get involved with this ground-breaking Email: [email protected] project. HealthUnlocked Inside we acknowledge the achievements of our growing band This online community provides a safe place where those affected by PSP and of volunteers, who give so generously of their time and energy CBD can connect with others to share to make a difference in their local areas. their experiences. https://healthunlocked.com/psp Finally, as the nights start drawing in thoughts turn to the Helpline festive season. We’ve enclosed our Christmas Catalogue, it’s The PSP Association Helpline and packed with card and gift ideas so please make a purchase if Information Service offers confidential information, practical and emotional you can, proceeds from sales make a valuable contribution to support to people affected by PSP our activities. and CBD. Mon to Fri: 9am–5pm and 7pm–9pm Thank you for your continued support. Telephone: 0300 0110 122 Email: [email protected] www.pspassociation.org.uk www.facebook.com/ Fergus Logan, Chief Executive pspassociation @pspassociation WorkIng for a World free of PSP PSP MATTERS AUTUMN 2015 3 News Health minister attends Scottish Parliament event The Cabinet Secretary for Health, Wellbeing and Sport, Shona Robison MSP, addressed guests at our Scottish Parliament event to raise the profile of PSP and CBD. HE joined more than 80 people affected by PSP, their families and carers, volunteers and supporters Sat Holyrood on Wednesday, 17 June. The event was hosted by Bob Doris SNP MSP for Glasgow and deputy Convener of the Health and Sport Committee, following a social media campaign by Keith Swankie, who lives with PSP. People living with PSP and those who care for them told the 10 MSPs who attended about the impact of the disease, the issues that affect them and how services could be improved. Ms Robison praised Keith for being a ‘fantastic campaigner on behalf of people with PSP’ and explained how he Keith Swankie, front, with, from left, Bob Doris MSP; Sheelagh Swankie; Jordan Swankie; Fergus Logan PSPA CE; Shona Robison MSP had caught her attention through his persistence on social media site, Twitter. “We need a more responsive and more treatment,” he said. “Keith’s work came “as a government we joined up service for those in Keith’s to my attention during this year’s PSP position. We have to recognise that the Awareness Week and I wanted to learn absolutely share PSPa’s aim changes which matter most and make more about PSP and what can be done that everyone with PSP the biggest difference to people’s lives to help sufferers. Hopefully the event I should be able to access the are not only in the power of researchers arranged at Holyrood will help achieve and clinicians. It’s also important that a this.” care and support they need.” person living with a condition such as Keith’s daughter, Jordan and wife “As a government we absolutely share PSP is able to decide what support they Sheelagh gave moving speeches about PSPA’s aim that everyone with PSP should need and to have some control over how how family life has changed since Keith’s be able to access the care and support and when it’s delivered.” diagnosis in 2012. they need,” she said. “It is a devastating Ms Robison also spoke about the need As a direct result of the Scottish condition and we’re committed to for early and accurate diagnosis. Parliament event we had a very positive supporting people living with the illness, Bob Doris MSP told guests it was ‘a discussion with Dr Alan McNair, Senior but also their families and carers. We want privilege’ to host the event. Research Manager at the Scottish Chief to ensure that everyone who requires “I commend Keith and others for Scientist’s office, about the opportunity care has access to the highest standards their dedication in championing both to secure joint funding for a research of care in every setting. awareness of PSP, as well as research and fellowship in Scotland. More news to follow. 4 Getting together in Cardiff More than 40 professionals supporting people with PSP and CBD attended our free study morning in Cardiff in June. Verna Gill with DJ Mikey Dee elegates included nurses, was followed by an informal Family and occupational therapists, speech Friends afternoon, where those affected PSP on the radio and language therapists, care by PSP met with others. We raised awareness of PSP across the Dhome workers and Parkinson’s nurses. All PSPA’s events are listed at airwaves in June. The study morning for professionals www.pspassociation.org.uk/events/ Our Communications Manager, Paula McGrath, was interviewed by weekly health radio series Word on Health. The special report on PSP was broadcast to 6.5 million listeners on 81 independent radio stations across the UK and the Gulf States. You can listen to the report online here at www.wordonhealth. com/on-air-articles.php Supporter Verna Gill was interviewed by DJ Mikey Dee on Coventry-based Arawak Community Radio Station. Verna described her family’s experience of PSP since her dad Bob Burke was Delegates at our Cardiff study morning diagnosed in 2011 and talked about her activities raising funds and awareness in Free study days for health professionals her local community. EALTH professionals supporting the conditions.” families affected by PSP and The theme for the days is Improving Join us in Bristol CBD are invited to our October Quality of Life and each session will be A warm welcome awaits those living with Hstudy days in Manchester and Glasgow. aimed at the multidisciplinary team, PSP and CBD, their families, carers and The events are free and open to all highlighting best practice. friends at our next Family and Friends Day. health and social care professionals with Bookings are now being taken for our The event will be held on Saturday, an interest in the diseases. events in: 14 November at the Holiday Inn, Peter Daniels, our Director of Glasgow – Thursday, 29 October. Hambrook, Bristol. Our Family and Information and Support, said the events Chair, Dr Edward Newman, Consultant Friends Days offer the opportunity to play a vital role in helping professionals Neurologist. learn more about PSP and CBD and the to provide the best care and support work of the Association, while meeting they can for those affected by PSP. Manchester – Friday, 30 October. others affected by the diseases. He said: “We organise free study Chair, Dr Alexander Gerhard, Consultant Places cost £5 per person and booking days around the UK throughout the Neurologist. is essential. year because we recognise that, as In addition to sessions on pain Telephone 01327 322410 or email PSP and CBD are relatively rare, many management, challenging behaviour [email protected] for professionals may not be familiar with and oral hygiene, delegates will be able further information and a booking form or the complex needs of those living with to choose from interactive workshops.