LIVING WITH STROKE 1/5

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1 LIVING WITH STROKE Through Think Ahead s unique long term Living With Stroke support programme we offer help to Carers, Stroke Survivors and their families across Wigan Borough to improve the quality of their lives by providing friendship, information, advice and education, together with opportunities for interaction with other members by organising outings, respite breaks and appropriate social and educational activities. Throughout this project Think Ahead have embraced the opportunity to work closely with other organisations and provide a common link with all services which is helping to work towards a joined-up and seamless service. Our Peer Supporters and Project Co-ordinator now make timely visits to Wrightington, Wigan and Leigh NHS Foundation Trust s Acute Stroke Unit speaking with visitors and Stroke patients alike to ensure that both are fully aware of the emotional and practical support which we offer to both Carers and Stroke Survivors following the patients discharge home. Information regarding our Living With Stroke programme, Peer Support Service is disseminated throughout the Hospital and community in many ways. All literature we produce is following consultation with our members to ensure that this is written from the Carers / Stroke Survivors perspective. Our Peer Support literature will, in the future, be provided to Carers / Stroke Survivors in their own homes by Wrightington, Wigan and Leigh Trust s Community Stroke Team on their initial follow-up appointment. We continue to roll-out information about our Living With Stroke programme in the form of business cards and leaflets to the 62 GP Surgeries across the Borough (approximately 5,500 Stroke Survivors registered) and request that they promote our services to their Carers, Stroke Survivors and families (see enclosure 1). At their request, we also meet with individual GP s and their staff giving brief presentations etc. Links have also been forged with Ashton, Leigh and Wigan Community Healthcare NHS Trust and we are promoted throughout the local community healthcare and therapy services. We are also working alongside Wigan Borough Council and our Living With Stroke programme interlinks with their After Stroke Pathway ; our services are promoted through the local Carers Centre, Social Workers, Occupational Therapies etc. 1/5

2 Noted below is a summary of our key outputs achieved during the project: 1) Through personal contact and via Think Ahead s website, information guide book and newsletter, carers, their families and Stroke Survivors will be given a unique opportunity to learn from others that have first hand experience of Stroke. Think Ahead has recruited a team of volunteer Peer Supporters from the main group membership of 400+ and their main role is to offer an outreach service in the community providing practical and emotional support to both the Carer and Stroke Survivor. The Peer Supporters are themselves either Stroke Survivors or Carers of Stroke Survivors and obviously have a wealth of first-hand experience of living with Stroke. They have all been CRB checked and embarked on appropriate in-house training sessions which have covered such topics as: Stroke, communication, dealing with difficult situations, advocacy, the role of Peer Supporters etc. Our long term Living With Stroke programme is not time limited but individual to meet the needs of both Carer and Stroke Survivor and we always ensure that Carers needs are appropriately addressed by encouraging an assessment under the Carers (Recognition and Services) Act Following consultation with our Group members our Information Guide Book displayed on the website has been updated. This is a directory which contains details of numerous local and some national services which are appropriate to the needs of both Carers and Stroke Survivors. For those who do not want to formally access our Living With Stroke programme it gives an easy access option to appropriate and relevant information. From our website there are relevant links to other organisations for eg the Carers Direct Website which contains an abundance of information for all Carers. Think Ahead produces a monthly Newsletter which is provided to 250 households across the Borough (see enclosure 2). 2) We will empower people to improve their quality of life by reducing social isolation and helping them move towards independent living ensuring all necessary support is given to the Carer and Stroke Survivor so that they can reintegrate back into communities. By accessing our long term Living With Stroke programme Carers and Stroke Survivors can also gain access to the following activities: o Peer Support Service o Monthly outing o Twice monthly long term Living With Stroke meetings o Computer Classes o Photography o Art (second Art Class for beginners has commenced) o Book Club o Floristry o Card-making o Spanish o First Aid o Moving and Handling o Respite breaks 2/5

3 2) Contd/ To ensure that Carers are given an opportunity to access the above activities, Think Ahead provides those deemed most at need with specialised transport places so that they can travel with their cared for. 3) Carers and Stroke Survivors will be encouraged to make a positive contribution and set realistic personal targets for self improvement and, therefore, achieve continual improvements to reach both their full individual potential. Staff at Think Ahead have recently completed the Ashton, Leigh and Wigan PCT Catalogue to Health training course. This course covered issued relating to: physical activity, nutrition, alcohol, smoking and mental wellbeing and the information gained will be disseminated to Carers. Training has been arranged on the 6 week Expert Patient Programme for Peer Supporters and Staff. Through these sessions we will learn how to: set goals and make action plans, problem solve, develop communication skills, manage emotions, pace daily activities, manage relationships with family, friends and work colleagues. Both the Catalogue to Health and Expert Patient Programme will help to increase confidence and self esteem, improve communication with health care professionals, increase social inclusion, re-introduce structure into daily life, improve quality of life, identify shared experiences with others in a similar situation etc. All training which has been received by Staff and Peer Supporters will be used by Think Ahead to develop a unique course and information will be disseminated to Carers and Stroke Survivors at informal meeting places across the Borough. 4) Through signposting and providing access to information regarding local services available, people will then be able to take part in other vocational, social, leisure, therapeutic and educational activities. Think Ahead s Information Guide Book and our events diary displayed on our website provides a directory of available local services and activities appropriate to the needs of both Carer and Stroke Survivor. To ensure our Peer Supporters have the knowledge to signpost others we invite guest speakers to attend our monthly meetings and provide us with information regarding other local services for eg: Assisted Technology (Wigan Council), Personalisation / Direct Payments (Wigan Council), Changes to local Stroke Care (Wrightington, Wigan and Leigh NHS Foundation Trust), Train the Trainer (First Buses), Starting Point (Age UK), Health Trainers and No Smoking Team (Ashton Wigan and Leigh PCT). The knowledge that is gained at these meetings is then shared with others who access our long term Living With Stroke programme. 3/5

4 5) The project will provide access to information about risk factors and preventative and lifestyle issues which will help Carers to support Stroke Survivors to learn how to better manage their condition and reduce the risk of further Stroke and other health conditions. Our website has been newly developed ( and is regularly updated to contain a wealth of information about healthy lifestyle choices, Stroke etc. Topical speakers are invited to attend our twice monthly Living With Stroke meetings across the borough At Think Ahead we continually strive to promote preventative measures and healthy lifestyles choices to our members and through various events we raise awareness of Stroke / F.A.S.T across the Borough. Following consultation with our members we have produced our own Healthy lifestyle literature (see enclosure 3). See also key output 3 (page 2/5) 6) The project will provide access to information to allow the Carer to make informed personal choices which will enable them to look after their own health and wellbeing. At Think Ahead we encourage each individual to make informed personal choices and through our Peer Supporters / website / newsletter / group activities we ensure that members have adequate knowledge about Personalisation / Direct Payments etc so that arrangements can be made for the cared for s needs to be fully met to the satisfaction of all concerned. It is only at this point can the Carer start to re-think about their own personal individual needs and returning to a life in their own right. See also key output 3 (page 2/5) 7) Think Ahead is a self-help group with 10 years experience of living with Stroke and its members are encouraged to make a positive contribution to the development of the Group and support others by taking part in a wide range of volunteering opportunities. As a self-help group we encourage members to take positive steps to access the many varied volunteering opportunities within Think Ahead and we ensure that volunteers feel valued within our organisation. Volunteer vacancies are advertised in our Newsletter and via the website and discussed at our twice monthly meetings. Through the successful development of our Living With Stroke programme, additional internal / external volunteering opportunities have been created: o An additional Carer has joined our Board of Trustees making a total of 5. o Buddies These are Carers and Stroke Survivors who welcome new members to our main Group activities and play a vital role within Think Ahead. o Tutors for Beginners Art Class / Spanish / Floristry / Card-making / Photography 4/5

5 7) Contd/ o Trips / Respite / Activities Working Group numbers have been strengthened by Carers / Stroke Survivors o Newsletter Team we have a new Sports Reporter and many members provide articles etc. o A Carers Group has been formed within Think Ahead which is looking at the specific needs of all our Carers and will play a significant role in our future development and the design of our proposed Expert Patient / Carers type programme. o Office administrative support. 8) If desired and capable we will encourage and assist Carers and Stroke Survivors to engage in appropriate return to work programmes. Think Ahead is dedicated to working in partnership with other local statutory, community and voluntary organisations to ensure that Carer s needs are fully met through better access to community based respite care, training, educational programmes and they are given the necessary new life skills and information to carry out their essential and vital new role. We support the Carer to ensure that any necessary services are put into place and then help the Carer to engage with the possibility of returning to work either on a voluntary basis or employment. Project Monitoring To ensure that the needs of our members are met, our Living With Stroke programme Peer Support Service along with many activities are regularly monitored and evaluated (see enclosure 4). An Annual Survey is also sent individually to Carers and Stroke Survivors within our Group and the results of this survey provide a solid base-line for the future development of Think Ahead. We believe Think Ahead is well respected throughout the community at large and by health professionals alike and we are grateful for the support we have received from the Department of Health which has allowed us to embark on this project and support the individual needs of Carers. Through the many years of experience gained we know that the support we offer to Carers is vital to their health and wellbeing and truly believe that this programme could be replicated nationally not only for Carers of Stroke Survivors but many other long term health conditions. Carol Sankey Charity Administrator on behalf of Think Ahead Community Stroke Group Enclosures and supporting documentation: 1. Living With Stroke Peer Support leaflet 2. Newsletter 3. Healthy Lifestyle leaflet 4. Carers Comments and feedback 5/5