The Humber Memory Assessment Service Newsletter Welcome to the Summer 2016 edition of the Humber Memory Assessment Service Newsletter. The Hull Memory Clinic 39-41 Coltman Street Hull, HU3 2SG Tel: 01482 336617 Fax: 01482 336913 Summer 2016 Issue 3 Innovation in health care is vital to meet the challenges in sustaining quality and improving services. Here at the Humber Assessment Service we are pleased to have built a national and international reputation for innovative practice and contributing to large scale research to improve outcomes for people living with dementia. Contents: Welcome 1 Living Well with Dementia Focus on Research Thank you and Congratulations 2 3-6 6 This edition will introduce some of the innovative practice in research we are involved in. Useful Contacts 7 Above: The Hull Memory Clinic Page 1
Living Well with Dementia Humber Foundation Trust supporting Living Well with Dementia. The Hull Memory Clinic is supporting the Alzheimer's Society with their Living Well with Dementia program. The program ran by the Alzheimer's society aims to provide people with a diagnosis of dementia with the knowledge, skills and practical tools to support and empower them to manage their own health and well-being. This programme is a group based intervention and participants will have the opportunity to talk about their own experience of dementia and learn from the experience of others. Over 8 weeks the program will aim to educate attendees on key areas of their condition such as; Managing dementia in my daily life; Managing my health ;Myself, My Support, My Future planning and how to access support. The Humber NHS Foundation Trust has agreed to host this initial program trial within the Hull Memory Clinic. Dr Chris Rewston, Clinical Lead for the Hull Memory Service said We welcome the opportunity to support the Alzheimer's Society s aspiration to empower people living with dementia. We share the view that receiving a diagnosis of a dementia should not mean that you lose control over your own needs and opinions regarding the care you require. This initiative is in keeping with the NHS s Five Year Forward View which advocates patients will gain far greater control of their own care. What other participants have said about the programme: Delighted and surprised, I didn t expect it to be so positive It s been the learning together and from each other that s the best part for me It s like taking some control of your life again This has really helped me, really glad I came Page 2
Focus on Innovation and Research Research is vital. It is the only way we can test new treatments, find better methods of support, and improve diagnosis rates. Here in the Research and Development Unit at Humber NHS Foundation Trust, we are involved in a number of innovative dementia research studies. Research does that mean drug trials? There is a common misconception that all research involves laboratories, doctors in white coats, and clinical drug trials. Whilst drug trials are incredibly important in order to find new effective medications to treat the symptoms of dementia, it is also as important to test new psychosocial methods of support, such as therapy courses, counselling sessions, self-help guides and social support. By developing effective methods of support, we hope that people with dementia will remain independent for longer, and will have a better quality of life as a result. How are the research team linked to the Memory Clinic? As a research team, we work closely with staff in the Memory Services to ensure that everyone who comes into contact with these services has the opportunity to get involved in research if they wish to. In fact, you might have met some of our team at the Cognitive Stimulation groups, where we have been promoting our studies! The Prime Minsters Challenge on Dementia 2020 published in 2015 set out the importance of encouraging people with dementia to contribute to research opportunities: The Hull Memory Clinic has fully embraced this ambition. Volunteers Research relies heavily upon willing volunteers taking part in research studies. Researchers need to hear from people with real life experience of living with dementia, from those who help support people with dementia, and from others in the community. By offering their time, volunteers contribute to ground-breaking research. What does taking part in a research study actually involve? Every research study is different, and because of this, there are a wide variety of ways in which people can get involved. Some studies might involve completing a questionnaire or being interviewed by a researcher; others may need volunteers to test a new computer app or take part in a focus group. By participating in research, people make a difference and help improve outcomes for those diagnosed with dementia, and provide hope for future generations. Page 4
Focus on Innovation and Research Do I have to be involved? No participating in research studies is entirely voluntary. We simply want to give everybody the opportunity to take part in research studies if they wish to. Ok, I m interested how do I find out more? Great! You can speak to any health care professional about research, or contact our research team directly see our contact details on pg. X. We are more than happy to speak to you about different opportunities you might be interested in. You can also register your interest in participating in research studies by signing-up to Join Dementia Research as a volunteer. Join Dementia Research allows people to be matched to suitable studies that they might like to participate in. The scheme was developed by the National Institute for Health Research (NIHR), in partnership with the Alzheimer s Society and Alzheimer s Research UK. It only takes 5 minutes to join as a volunteer, whether you sign-up over the phone, by completing a form, ask us to help you or by visiting https://www.joindementiaresearch.nihr.ac.uk/. Anyone over the age of 18 can join you don t need to have a memory problem. For further information on the above studies, please contact the Research Team on 01482 301844. Page 3
Meet the Dementia Research Team Cathryn Hart, Head of Research and Development Cathryn has worked in various research posts since graduating in 1993. Having joined the Research and Development team in 2008 her special interest has been dementia. Outside of work Cathryn tries to be a cool mum of teenage daughters and is her husband s underpaid (i.e. free) book-keeper! Gavin Dawson, Project Assistant Gavin graduated in 1991 with BA (Hons) in Business Computing. He joined the team in 2010 as Data Manager for the ResCare and FamCare studies and now assists with the data management and administration of our research studies. Gavin is an undiscovered (but, according to his wife, highly talented) singer-songwriter, regularly playing music for church services. Alison Greenley, Senior Admin Assistant Alison joined the team in 2008, working as PA for Professor of Dementia Care Research. She has worked in the NHS for most of her working life, When she is not working, you will find Alison on her allotment mainly digging! Katie Gilgallon, Research Assistant Katie has worked in health services since 2002, and graduated in 2009 with BSc (Hons) in Occupational Therapy. She worked as an NHS Occupational Therapist, before joining our team in 2011. Katie loves travelling and visiting new places, and she is an avid Middlesbrough FC fan! Daniel Kelleher, Research Assistant Daniel graduated from Glasgow University in 2013. He became a support worker at Alzheimer Scotland before moving to Hull in 2015 to join our team. Daniel s diverse CV includes work as a lifeguard, guitar tutor, and bass guitarist in a Scottish Ceilidh band. Pretha Koshy, Research Assistant Pretha graduated from the University of Surrey in 1997 before joining our team in 2015. Pretha began learning to play piano with her 8 year old son, and can now successfully play Jelly on the Plate! Lauren Sugden, Research Assistant After graduating from the University of Birmingham with BSc (Hons) in Psychology in 2014, Lauren worked in the community as a home care worker, mainly with older adults, before joining the team in 2015. In her spare time, Lauren enjoys playing music, and meeting up with friends. Page 5
Current Research Studies AD-Genetics This study is for people who developed memory problems before the age of 65, and who have a diagnosis of Alzheimer s Disease. The aim is to understand more about the genes involved in Alzheimer s Disease, which will hopefully lead to better treatments and methods of diagnosis in the future. Participation in this study involves answering some questions and giving a blood sample. You would also need to have a friend or relative who would be willing to answer some questions too. Caregiving-HOPE In order to develop effective guidance for those who support a loved one with dementia, we need to hear people s experiences. This study is looking for people who support a family member who has been diagnosed with dementia. Participants would be asked to complete 3 short questionnaires over a period of a year. The questionnaire can be completed over the phone, by freepost, or at a face-to-face appointment with a researcher, and should take no longer than 25 minutes. Positive Psychology Outcome Measures This study is part of a PhD project which aims to understand more about which personal strengths, such as hope, resilience and independence, impact on wellbeing. Two new sets of questions have been developed to assess this. Participants are asked to complete a one-off questionnaire, which takes about 30 minutes. The questionnaire can be completed with a researcher, over the phone, or self-completed. If you are interested in taking part in research, or would like further information, please contact us: Research and Development Unit Humber NHS Foundation Trust First Floor, Trust HQ Willerby Hill Beverley Road HU10 6ED Tel: 01482 301844 or Email: HNF-TR.ResearchTeam@nhs.net
Thank you A big thank you! The Hull Memory Clinic would like to congratulate and thank Mr. Mark Mawson for running the Silverstone half marathon on behalf of the Hull Memory Clinic. Mark decided to raise funds for the clinic after his mother had received care from us. Mark raised over 400 pounds. Mark said: I did the Marathon on Sunday 9th March 2016. I wanted to try and raise money after my mum had developed Dementia and poor memory functions. I found the Memory Clinic on Coltman Street in Hull a god send. When she came along and spoke to Dr. Chris Rewston and the rest of the kind and understanding team they gave my mum a real boost and sort of understanding of what is going on with her. They also arranged assistance through the local support team for carers to come in and give her a bit more time in her home. Congratulations Well-done to Sharon Kingston (Memory Clinic Nurse) on completing her studies in Dementia in Health and Social Care Practice (Level 7). This module is designed to develop critical awareness, leadership and judgement that will help transform the experience of people living and/or working with dementia. Sharon said It was helpful in building relationships with professionals from a wide variety of backgrounds and increasing my awareness of current developments in dementia care. Page 6
Useful Contacts Referral to Single Point of Access You can make a referral to the Memory Clinic via Single Point of Access by: Telephone: 01482 617519 Fax: 01482 617590 Post: Single Point of Access, Older People, Miranda House, Gladstone Street, Hull, HU3 2RT In your referral please provide the following information: Full summary of medical history List of current medication Blood results within the last three months (FBC, U+E, LFT, Glucose, Calcium, Folate, Vitamin B12, TSH) If we do not receive the above information within your referral, this may delay a patient being seen by the Hull Memory Clinic. Alzheimer s Society Telephone: 01482 211255 Email: hull&eastridingservice@alzheimers.org.uk Website: http://www.alzheimers.org.uk/ Resources for professionals: http://www.alzheimers.org.uk/healthprofessionals Hull Memory Clinic Telephone: 01482 336617 Fax: 01482 336913 Address:The Hull Memory Clinic, 39-41 Coltman Street, Hull, HU3 2SG Dementia Research & Development Team Telephone: 01482 301844 Email: HNF-TR.ResearchTeam@nhs.net Address: Trust Headquarters, First Floor, Willerby Hill, Beverley Road, Willerby, HU10 6ED References Department of Health (2015), Prime Minister s challenge on dementia 2020. NHS England (2015) Five Year Forward View, October 2014, Page 7