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There was lots of information shared in talk one. Below are some links for further details that expand on what Juliet discussed.
Strategy:
You can see a copy of the Stroke Association’s strategy here.
Julie’s film:
The documentary film ‘When the Words Away Went’ helped raise awareness of aphasia, with over 18,500 views. The film follows a group of stroke survivors with aphasia as they embark on a journey to find their voice and rebuild their lives. Julie who spoke in talk one was part of the film. You can watch the film and find out more about the stars here: stroke.org.uk/when-the-words-away-went
Stroke News:
Stroke News is a free magazine that is full of personal stories and articles that offer support and guidance to those affected by stroke. You can subscribe to the future editions of Stroke News in print format, on audio CD, or via email. Follow this link to subscribe.
You can read the latest copy of Stroke News on our website here: Stroke News articles online
Local contacts:
Find out the details of your local Engagement Team and how to contact them here.
Contact details for engagement team 2023
Patient Reported Experience Measures Survey:
PREMs stands for Patient Reported Experience Measures Survey. In partnership with NHS England, 6,600 stroke survivors shared their experiences of stroke care in hospital and the community. This is a hugely powerful tool for influencing and ensuring that your voice as stroke survivors matters. You can read more about PREMs here.
You can also access the key messages from the Stroke Patient Reported Experience Measures in an aphasia version here.
Campaigning:
Follow this link to find out more about campaigning including:
Life After Stroke Campaign:
Our upcoming autumn campaign is around Life After Stroke. This campaign will be about ensuring all stroke survivors have the support in place to thrive after their stroke. Support like access to a key worker and a 6 month review. The campaign will emphasis how life after stroke support is a vital part of the stroke care pathway, and that access to the information and support is key to rebuilding lives and regaining confidence in so many ways. For more information email: campaigns@stroke.org.uk
Watch this video from Jennifer Gardiner, Associate Director North West who explains more about this campaign:
You can also access the session from last year’s conference where Jen spoke about what good life after stroke services looks like in this video:
Or visit the 2022 Stroke Group Network Conference webpages.
Research:
Follow this link to find out more about stroke research and how you can get involved.
Beth Scrimshaw
My name is Beth Scrimshaw and I’m the Group Networks Manager. I oversee the Stroke Group Network. This means providing leadership so that everyone involved in the network gets the best support and has a really good experience.
This is my 6th year chairing this wonderful event. It’s definitely the highlight of my year – hearing all the incredible group activities you organise. And the way you support thousands of people across the UK. Bringing that learning and experience together in one space is fantastic, and why I believe the network is so powerful!
In my spare time you can find me cooking up a storm in the kitchen and stomping through the hills on windy walks.
Juliet Bouverie OBE
Juliet joined the Stroke Association as Chief Executive in June 2016. Prior to joining the Stroke Association Juliet worked at Macmillan Cancer Support and the British Red Cross. Juliet has a lot of experience in a range of roles covering strategy and service evaluation, campaigning and policy, research and HR. Juliet also co-chairs the Stroke Delivery Programme Board with NHS England and is a member of the NHS Assembly. She is a World Stroke Organisation Board member and Fellow. She was recently awarded an OBE in the Queen’s 2020 New Year’s Honours list. Juliet has a personal family connection to stroke and ran the London Marathon for the Stroke Association in April 2019.
Julie Foster
Julie Foster is a group leader of Coalfields Life After Stroke Group in Tyne and Wear. Julie had two strokes in her 20’s and the second whilst she was pregnant which took her ability to speak.
Despite not being able to speak for months; hard work and intensive speech and language therapy has meant that Julie’s speech has returned. Julie feels hugely frustrated by the public’s lack of understanding of people with aphasia and works tirelessly to raise awareness of the condition. Julie has recently appeared in the Channel 4 documentary When the Words Away Went to raise awareness of aphasia.
In her spare time Julie is a busy mum to three children and always doing her best to support them and her group members. Julie is pleased to be involved in the opening talk to the conference and share with others her own tips for what accessibility and inclusion means to her group.
Hannah Catchpool
Hannah joined the Board as a Trustee in June 2022, following 9 months as an independent advisor on the audit and risk committee, with an enthusiasm to make a difference. Hannah is pleased to be asked to be part of the conference and learn more about the Stroke Group Network, and is passionate about our vision to reach 100% of stroke survivors and their families.
Hannah is a partner and Head of the Not-for-Profit sector at RSM, one of the leading global accounting firms, working with local and national charities and educational institutions. She advises on assurance, financial reporting and governance. Hannah is also an executive sponsor for Equality, Diversity and Inclusion and chairs the Diversity and Inclusion Steering Group for RSM.
Hannah’s personal interests include cooking, yoga, walking and cycling. She is also a Trustee of a young people and families charity in the East of England where she lives.
There were lots of useful tips in talk two about understanding communication difficulties and how to support your members.
See the great resource sheet the speakers have pulled together that summaries these points. This includes access to films and lot of other helpful guides.
You can also check out the new Communication toolkit for group volunteers.
Watch this short video of Jan and her mum too and their own top tips for communication:
Or other videos about how stroke affects communication:
Cuckfield Communication Group – singing the song ‘Human, A Powerful Rendition by Stroke Survivors and Those Affected.
Caitlin Longman
I am the Accessibility Lead at the Stroke Association. I have worked at the Stroke Association for over 5 years. I am a trained speech and language therapist and have lived in South Africa, Sweden and the UK. I currently live in Glasgow, where I spend a lot of time working on my allotment.
I am very passionate about working with stroke survivors to make our information and services better for all. I work with Janet to run Aphasia and Accessible Voices which is a group that helps improve our work at the Stroke Association.
I have learnt so much from working with stroke survivors and am grateful for all the groups that have let me visit over the years.
Janet Rockliffe
I am the Accessibility Assistant at the Stroke Association. I have worked at the Stroke Association for over 8 years. Before joining the Stroke Association, I worked for Speakability for 15 years.
I had my brain haemorrhage in 1994 and have had a good recovery over the years. I still have aphasia and vision problems. I love to learn new skills and strategies and I still continue to improve.
In 1998, I started the Kendal Speakability group. The group has helped my recovery and I have seen our members blossom over time. It is important to meet other people who understand your stroke. The group meets in-person and online, with some members travelling quite far to attend.
At the Stroke Association I run Aphasia and Accessible Voices. This is a group of stroke survivors who make our work more accessible. The group have made a big impact on the Stroke Association, and we can see the difference we have made.
Colin Lyall
Colin founded the charity Say Aphasia after his stroke in 2013 left him with aphasia. Say Aphasia supports anyone with communication difficulties regardless of the cause. There are now 15 Say Aphasia support groups across England and Wales including an online group. Health professionals are involved with the support groups too. Colin is also part of the local Patient and Public Voices for the NHS.
Colin has been awarded a Coronation Champion Award for his outstanding contribution as a volunteer. Colin and his wife Chrissie were invited to Buckingham Palace to celebrate the work of extraordinary volunteers across the UK.
To find out more about Say Aphasia and the work they do click here: How We Help | Say Aphasia
Heidi Matthews
I had my stroke at home in 2016. In hospital I underwent a craniotomy and during this time I was unable to speak and had difficulty understanding what was going on around me. I stayed in hospital for over 3 months and then began seeing a speech and language therapist.
My speech therapist recommended that I joined a stroke group which helped me come to terms with my stroke and meet other people like me. I later started volunteering at the Stroke Association and I am now a member of Aphasia and Accessible Voices. This is a group of stroke survivors who look at new projects at the Stroke Association and help make them more accessible for all stroke survivors.
I like travelling and camping and when at home you can find me outside gardening, enjoying the sunshine with my dogs and tortoise.
Jim Wyness
I had my first stroke 20 years ago aged 52. My first stroke left me with memory loss, fatigue and emotional difficulties. After my stroke I joined and became Secretary/ vice Chairman of Southeast Northumberland Stroke support group. I found the support from the group essential to my recovery.
I had a second stroke 15 years ago. This led to further memory loss, communication difficulties, hearing and visual loss, mobility difficulties and loss of balance. I then joined and later became Chairman of Blyth Stroke Support Group.
I am passionate about the wonderful work that stroke groups do and the role that play for stroke survivors and family members. When I’m not at the stroke group you can find me on the board of various local volunteer groups. I am also a member of the NHS Stroke Peer Support team where I work on the ward with stroke survivors offering support.
I have volunteered as a Stroke ambassador for many years and now am in the Connector role. A year ago, I joined Aphasia and Accessible Voices which is a group that helps make the Stroke Association make their work more accessible. I love seeing the difference our voices make. I am now 72 and proud to be a useful Stroke survivor.
If you have enjoyed this session you may wish to check out the 5 minute activity routines that have been created by the We Are Undefeatable team. They have created some short videos called ‘Move To Your Mood’ and ‘Freedom To Move’.
Watch the video and click the below links to find out more:
You can also find out more about the We Are Undefeatable campaign and how to introduce activity into your daily routine in the exhibition area.
Doug Youngson
Doug Youngson is a Wellbeing Development Lead for the Stroke Association. He has a Masters degree in Person-centred Psychotherapy and 12 years’ experience of supporting people affected by stroke and brain injury. He is also a mindfulness and compassion teacher with a special interest in trauma. In his spare time, he enjoys painting, board games and civil war re-enactment with his family.
Use this top tips guide to try with your group.
To understand more about Stroke and Health Inequalities, you can use the below resources and videos:
Stroke and health inequalities
Thinking About Your Bias – YouTube
You can also check out the links that Madhura mentions:
Sophie Field
I am Sophie Field, Communities Lead at the Stroke Association. I am passionate about connecting with communities and sharing our knowledge of stroke and our support offer across the UK. I love being able to support our staff and volunteers in reaching and working with the communities they live and work in, particularly reaching groups who may be excluded or vulnerable.
Madhura Muralidharan
I am a 24 year old linguist, currently studying speech therapy at Newcastle University. I worked as Engagement Officer in the North West Stroke Association team for nearly 2 years, and truly learned a lot from my colleagues and the stroke support groups I worked with. I am pleased to be contributing to the Stroke Group Conference, and I strongly feel that stroke groups play a key role in helping rebuild lives after stroke. I am passionate about inclusion in health care, particularly when it comes to ethnic and linguistic minority communities. In my free time, I enjoy travelling, learning languages, and trying new recipes in the kitchen!
Julie Monk
I’m Julie Monk and I am a 3 times stroke survivor, and I have been the chairperson for 4ward Strokes Leicester for 16 years.
I thoroughly enjoy my volunteering role at group. Without the help and support that I received from the Stroke Association 21 years ago following my major stroke, I wouldn’t be where I am today. At group I can help to give something back by helping other stroke survivors and their carers in their own personal journeys following their strokes.
Outside of group I enjoy spending time with my family and my pets. I have 3 cats and a puppy called Mylo. They all have their own different personalities and Mylo is full of life and mischief but brings so much joy, love and happiness too.
I was thrilled to be asked to be involved in this year’s conference and share my experiences. I have attended many Stroke Association Group Conferences in the past in person and have thoroughly enjoyed them. I must say that these online conferences are as enjoyable too and they allow more stroke survivors to be able to be together. On behalf of everyone who is watching this conference I hope you enjoy and thank you all.
Donna Greenall
I am the Engagement Lead for the North East and Yorkshire. I have had many roles within the organisation over the last 20 years and they have all had a connection with our groups and volunteers. Peer support is a corner stone for people’s recovery which is often overlooked but we know it can be a lifeline for some. I always take away so much learning from the conference and also some great ideas and motivation.
Mary M Sagoe
Mary is a retired Community Matron, who trained as a nurse in Ghana West Africa. Mary worked in the UK for 30 years.
After having a stroke, Mary wanted to help other stroke survivors on their road to recovery and had acquired a passion for care of the elderly.
As a result, Mary joined the Stroke Association as a volunteer in 2010 and has supported a number of projects, for example volunteering as a Stroke Ambassador,
Community Connector and is an active member of the Black and Minority Ethnic Stroke Survivors Group.
You can see a summary of the top tips from our speakers here.
As group leaders and volunteers:
The below resources are written with groups and volunteers in mind and how you can support your members:
To share with your members:
There are also lots of resources and guides on the hidden effects of stroke on the Stroke Association website and My Stroke Guide. You can share these with your members. Information is available to download, or you can order a printed copy. It is also available in accessible formats and other languages.
You can download these guides:
For information about other effects of stroke follow the links to our website:
Or call our Stroke Helpline on 0303 3033 100 or email helpline@stroke.org.uk.
Josh Murphy
I am the Stroke Knowledge Development Lead, responsible for the design and delivery of all stroke specific training at the Stroke Association. As a Speech and Language Therapist by background, I spent five years as a coordinator supporting stroke survivors in the community, before transitioning into training and development type roles which specialised in stroke. The hidden effects of stroke can be just as challenging for stroke survivors as those which are obvious for others to see, so I’m delighted to have the opportunity to talk about how we can better support stroke group members who might be encountering these difficulties. I enjoy Formula 1, and spending time with my little boy and our cat called Stanley Lambchop.
Amanda Bennett
Head of Diversity, Equity and Inclusion at Guide Dogs, I’ve been in the role for three years and under my leadership Guide Dogs has increased the number of people employed by the organisation who live with a vision impairment by 50%. I have lived experience of Vision Impairment myself and live in Blackpool with my three pet dogs. I’m really happy to be part of the session as removing barriers to create a more equitable and accessible community for people living with disabilities is really important to me.
Lori Rowsell
Lori Rowsell is a volunteer from the Nailsea Stroke Survivors Club. I was 48 when I had a stroke. I had a young family and was an accountant. When I was told I had ‘limited capability for work’, I cried. I felt useless.
A Stroke Association Support Coordinator invited me to a stroke support group. Before I knew it, I was the chair! It made me feel that I had value. I now run two stroke support groups, I’m part of a patient involvement group and help to plan the annual Stroke Group Network Conference.
Volunteering has given me the tools to “get back out there”. I’ve realised that I have more to give and that my experience can make a difference.
Louise McCann
I am Louise McCann and I run the Thursday morning Online Café in Scotland.
I really enjoy volunteering for the Stroke Association at the minute my volunteer role is for Thursday morning café. I am in the process of training for the Here For You role. Aswell as really enjoying being a volunteer, I do also enjoy spending time with my family and friends, going out for dinners and having family days out.
See the below document with a summary of tops tips that Mike shares in his conversation with Doug.
Doug Youngson
Doug Youngson is a Wellbeing Development Lead for the Stroke Association. He has a Masters degree in Person-centred Psychotherapy and 12 years’ experience of supporting people affected by stroke and brain injury. He is also a mindfulness and compassion teacher with a special interest in trauma. In his spare time, he enjoys painting, board games and civil war re-enactment with his family.
Mike Lynch
Mike Lynch has several different volunteering roles for the Stroke Association. He is a Support Group Volunteer for Kirklees Hope After Stroke Group and has experience working with communication support, including on a 1-1 basis before covid.
Mike is a really committed volunteer, previously an Ambassador and now coming on board as a Community Connector. He also helped to run an online group that kept staff and volunteers in his area connected over covid. Mike has a personal connection to stroke as carer to his partner, who had a series of strokes and sadly passed away over 10 years ago.