Spinal Injuries Ireland Research Results and Strategic Plan 2015, Fiona Bolger
Research with Members 385 one to one interviews with members completed 24% of SII popula>on. 27% female and 73 % male. Health Impact of Growing Older Pain was rated as the issue having the greatest impact on the quality of life. This was followed by bowel and spasm issues. Barriers to employment and community involvement also included bladder and sexuality issues. 35% of participants believed service providers were not knowledgeable about SCI including local hospitals, community services and local GP s. Financial concerns and mental health dominated as issues that became more urgent with age. Other issues included access to services, sexual health / relationships and equipment required. Members generally did not have a plan in place for growing older.
Support Services
Full time 248 39 Part time 20 35 Self employed 32 20 Training 2 2 Student 30 15 Unemployed 13 57 Not in employment due to injury 90 Not in employment due to other sickness Employment Employment Category Prior to Injury Current Status 4 3 Full time at home with family 9 12 Retired 23 99 The primary barrier to employment was unable to work because of level of injury Economic Issues 40% at or below the poverty line. 75% felt they were effected by the economic climate Full or part time employment status equated with satisfaction with employment situation.
Social and Lifestyle Prior to the injury 80% fully involved in what they wanted to do. 68% stated my injury prevents me from doing the things I want to do. 35% felt their support network could be improved. 60% of these were female, either single, widowed or separated and aged over 55yrs. Sense of isolation: everything seems to be so far away. Education 20% obtained qualifications following their injury. Reduced Financial barriers to courses might encourage greater engagement in training Support in Transition Navigating benefits and financial systems Counselling Peer Support Support on home adaptations Support and preparation for family members Impact on Paren-ng
What can SII do to support the transition after leaving hospital? More frequent contact and follow up in first stages of transition More regular contact overall Contact with families to assist them specifically Develop a buddy system at home to help with social contact and support More counselling Follow up generally Development of more local supports SCI will always be life-changing, but it need not be a tragedy and it need not be a burden.
Family Research 44 family members par>cipated in the family research. The demographics of the par>cipants revealed a reliable representa>on of the members who took part in terms of age, gender, level of injury and cause of injury. Employment Reduction from 15 to 5 in full time employment to take up full time caring roles. Barrier to employment was lack of necessary support for person with SCI. Social & Lifestyle 23% shift in reduced engagement in activities following injury of family member 60% expressed a desire to do more things that are important to them Parenting 93% individuals interviewed were parents and 43% stated found parenting very difficult or quite difficult. Ranking of supports resulted in: Ranking Barrier 1 Counselling and support for the family 2 Children supported in having a better understanding of the injury 3 Being supported in having a better understanding of the injury 4 Knowledge and skills give about being a parent with a SCI 4 Counselling support for yourself and your partner 4 Meeting with other parents whose family members has a SCI
Transitioning after the injury Most challenging aspect of transitioning was physical life followed by mental health. Financial situation, access to services and employment status followed Ø Ease of adjustment: 31% not at all easy to adjust 36% got easier with time 14% very easy Ø Confidence to support family member: 51% very or quite confident 49% not really or not at all confident
What can SII do to support you prior to leaving hospital? Speak directly to families to have their voice and needs heard Offer a half day course to provide packaged information on increasing knowledge and understanding about SCI Greater levels of support Work with healthcare professionals at NRH to communicate directly with families More help with housing adaptions and information on what to do and how to do it What can SII do to support the transition after leaving the hospital? Regular contact with family members directly Regional and local support for families One to one meetings with CLO directly with family member
SII Strategic Plan 2014-2018 ENGAGE. EMPOWER. ENHANCE. A pathway of support and services from onset of injury to a fulfilled life in the community for members and their families.
Goal 1: A person centred lifetime support pathway from onset of injury to life in the community Goal 2: Comprehensive support services for families of members Goal 3: Strategic alliances with key stakeholders Goal 4: Educate the public, schools and healthcare profession about spinal cord injury and the impact it has on individuals, families and society Goal 5: Enhance the profile and message of Spinal Injuries Ireland nationally Goal 6: Establish a sustainable financial future for the organisation
Goal 1: A person centred lifetime support pathway from onset of injury to life in the community Ø Address barriers to return or progress to employment and / or community involvement Referral to one to one counselling Referral to mindfulness / life skills courses and pain management courses Annual information workshop in each region addressing key barriers Regional information meetings in each region 3 times per year Ø Offer peer support at the different stages in a members life Implement peer mentoring programme on site at NRH Implement peer support programme from NRH into community Regular monthly county meetings with peer support as facilitator Regional information meetings informal peer support Ø Develop a lifetime goal setting programme for members detailing vocational, social and personal goals and refer to external agencies where appropriate Vocational programme from NRH into community Expand activities on offer to patients e.g. workplace and airport visits Goal setting training for CLO s and system to measure outcomes of members progress Ø Provide information to build the bridge to a fulfilled life from when the member is ready to engage Regular CLO visits Telephone information helpline and resource centre Information and mentoring into accessible sport and activity clubs in the community Ø Systemise points of contact with members based on at least one offer of an annual visit from a CLO and regular contact between CLO and member in the first six months after discharge
Goal 2: Comprehensive support service for families of members Comprehensive support service for families of members Ø Provide information and support to family members from admission into the community Presence on site in Mater to link in with family members of SCI patients Information pack for family members Half day course for family members and children / siblings Ø Allocate CLO to manage case in the community Visit by CLO to family home before discharge of SCI family member Goal 3: Strategic alliances with key stakeholders Ø Offer support to family members through peer support programme, referral to mindfulness / life skills programme and / or counselling as required Ø Confirm agreements with current and potential stakeholders to enable the organisation to provide the most comprehensive services to members Individuals / organisations addressing positive mental health Chronic Pain Ireland and pain management clinics Individuals / organisation regarding bladder, bowel and sexuality for member referral and information Employment support agencies in relation to vocational programme Community based sports and activity clubs Acute hospitals working with SCI patients
Goal 4: Educate the public, schools and healthcare profession about spinal cord injury and the impact it has on individuals, families and society Ø Develop and deliver SII awareness programmes to all healthcare personnel Ø Research feasibility of developing Continuous Professional Development modules for SCI to health professionals in the community Goal 5: Enhanced profile and message of Spinal Injuries Ireland nationally Ø Review key messages and mechanic of current communications Ø Acknowledge that different markets require different messages Ø Identify and develop innovative campaigns in the most cost effective manner Ø Deliver relevant information to our members and their families in the most efficient manner Ø Advocate for support and services for the population of people with spinal cord injuries Goal 6: Stable sustainable financial future for the organisation Ø Brand our services to make them more tangible for investment Ø Generate new income streams Ø Review all grant opportunities Ø Manage our finances to enable us to provide the best services to members Ø Constantly review the cost of services and innovate procedures Ø Communicate to all stakeholders that money is invested securely in the organisation & is well utilized in providing unique services that are not available elsewhere
About our Services EARLY Early Days DAYS At NRH the NRH In COMMUNITY the Community Information Services (Website, quarterly magazine) Counselling for family members Community Liaison Officer Briefing session for family & friends Peer Support Sports & Activities Programme Peer Support Vocational programme Drop in resource Centre Information Services (website, social media, quarterly magazine) Free legal advice Liaison Officer Visits in the home by the Community Liaison Officer Goal setting Counselling Regional Meetings Information Days Information Services (website, social media, quarterly magazine) Sports & Activities Programme Peer Support Vocational Programme
Conclusion As an organisation we acknowledge and consider all stakeholder needs and requirements. In particular the community of 1600 people with a spinal cord injury in Ireland. If they are not the impetus for every decision and action we take, we will fail in delivering this strategy. We must engage fully with our members and their families and empower them to live an enhanced life that they imagined when they sustained their injury.