“How practice develops from a research based needs assessment for persons with an Acquired Brain Injury” Margaret Culliton Development Officer APT, HSE Dublin Mid Leinster Area Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Background: BRÍ & HSE Response by HSE– “Needs Assessment & service Development Plan for persons with an ABI” 2004 (Dr. Regina Kiernan) Project team established – service users/providers Survey of: clients and families (qualitative information) service providers (qualitative and quantitative information) information contained on databases E.g. PSDD in Midland area Ms. Margaret Culliton, APT Development Officer

Head Injury in Midlands (every year) 600 cases of Mild Injuries 40 cases of Moderate Injuries 18 cases of Severe Injuries Approx 5 – 10% of those hospitalised will die “An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004 Identified from a recent Report from HSE Midlands Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Location HSE Dublin Mid Leinster area 4 counties: Laois/Offaly Longford/Westmeath Population of approx 251,000 APT – Aontacht Phobail Teoranta – (Community with agreed purpose) Subsidiary company of HSE Dublin Mid Leinster RT, EBT, Shops, other projects Ms. Margaret Culliton, APT Development Officer

Some Facts from the Midland Area The average age of those admitted to Midlands Regional Hosp with ABI (under 65 years) TBI was 28 years CVE was 55.5 years Brain tumour was 35 years Infection was 17 years Anoxia (<1 and 8 years) 78% were discharged home and 14% transferred to other hospitals, 5 -10% did not survive “An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004 Ms. Margaret Culliton, APT Development Officer

Client Survey (main points) Main consequences of ABI: difficulties with ADL’s, concentration & memory problems, mood swings, anxiety and depression …….. Social problems in nearly 60% cases Worse finances > 40% < 20% returned to work 40% carers did not return to work “An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004 Ms. Margaret Culliton, APT Development Officer

Client Survey (main points) Services required by individuals Physiotherapy, OT, & SLT Peer support Financial assistance PA/Home help services Counselling & Psychology Respite care, Day care and Residential care “An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004 Ms. Margaret Culliton, APT Development Officer

Client Survey (main points) Barriers to accessing existing services: Nearly 75% stated lack of information 71% lack of service co-ordination & lack of a single contact person “An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004 Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Quotes "No body cares you're just a number and it’s just a job that gives them money. They don't have the interest or care in your special needs.“ “There simply is no one I know with any understanding about my injury. It can be very frustrating”. “No one will do anything when you tell them what you have had to put up with.... It like no one cares too many committees meetings etc we cant see any difference." Ms. Margaret Culliton, APT Development Officer

Service Provider (Survey) main points: Nearly 1/3rd individuals with ABI self sufficient Almost ½ of individuals cared for at home with regular/occasional HSE support Individuals who are inappropriately placed Need for more education for staff re. ABI “An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004 Ms. Margaret Culliton, APT Development Officer

Quotes (from service providers) “The current services for people with an Acquired Brain Injury are totally inadequate. Their needs are not met”. “Very unsatisfactory from my (health professional’s) point of view… There is no one giving family support or counseling for this family” “An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury” 2004 Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer “Needs Assessment & Service Development Plan for persons with an ABI” 2004 (Dr. Regina Kiernan) Many recommendations…..about service delivery Development Officer ABI – central to service development for this group of individuals Address issues identified in Kiernan Report Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Pilot Project APT commissioned to undertake pilot project Pilot Project - commenced May’ 04 & ran for 2 years Development Officer ABI (employed by APT) Project funded by HSE Midland Area Collaboration with Disability Services & service providers in area Ms. Margaret Culliton, APT Development Officer

Role of Development Officer ABI Provision of advice, information & support for persons with ABI/ Families Liaison – hospitals, NRH, community services, & other voluntary agencies Co-ordination supports involved Development of peer support groups BRÍ Education/Awareness Ms. Margaret Culliton, APT Development Officer

Role of Development Officer ABI Prioritise service delivery needs & identify service gaps Support new developments in ABI within Midlands in co-operation with service providers Influence current service provision Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Starting Point: Where are these individuals & their families? No single register of clients BRÍ P&SDD – letter sent from HSE Arranged meetings: community service providers in Midlands rehabilitation services (NRH) acute services (hospitals) Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Initial phase: All referrals with ABI < 65years Rapid increase of referrals Priority to new cases with ABI Individuals in hospital Individuals in NRH Subsequent cases then prioritised Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Case History: John 15year old TBI – following sports injury at school Family – lives with parents and 1 older sister (18yrs) Hospital Admissions: Acute Neuro Unit Transferred to NRH for rehab Initial meeting with mother in NRH Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Case History Cont. Liaison with NRH – periodically Preparation for discharge Video case conference organised with all relevant service providers – HSE, voluntary agencies, & school Care package agreed prior to discharge 2nd video case conference - Pre discharge to assess progress & confirm that supports in place discharge date agreed Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Case History Cont. Ongoing contact (by DO) with John &/family Crucial!!! Responsible for co-ordination care package & reviews 3rd case conference held (locally) after discharge Outcomes: John & family: satisfied with current supports (therapies, phn, pa, school/sna) had access to necessary information as they needed to know it Service provision – “co-ordinated approach” “A SEAMLESS SERVICE” Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Other cases: Families requiring information: “Preparation for discharge” ….home or otherwise entitlements/benefits counselling services peer support Individuals (ABI) Referrals for therapy/NRH/counselling Information BRI meetings hospital visits – transport, directions or format of opd employment/further training GMS cards Ms. Margaret Culliton, APT Development Officer

Benefits of ABI project- for persons with ABI & families Continued contact person for individual with ABI & family hospital transfer home/NRH/Residential placement More timely & co-ordinated response by community supports Ms. Margaret Culliton, APT Development Officer

Benefits of ABI project- for persons with ABI & families anxiety/fear/isolation concerns addressed improved information about: services that can help roles of various people involved in supporting them what to expect? E.g.. Returning home assistance to work out what is needed & how to get it Development of peer support Ms. Margaret Culliton, APT Development Officer

Benefits of ABI project- for service provision communication with service providers (within/outside HSE Midland Area) phone calls, interim reports, discharge summaries co-ordination of support services Swift response of services for urgent cases Staff networking and supporting each other Improved education/training for service providers Education seminars/targeted workshops Ms. Margaret Culliton, APT Development Officer

Benefits of ABI project - for service provision Strategically Gaps in services clearly identified & Plan how we would address those needs Commitment by HSE to address prioritised needs through service planning ABI Project completed in May 2006 Approx 100 persons with ABI & families identified & supported to various degrees Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Developments: Main recommendations made by project to HSE More resources Community outreach service for individuals & their families to be prioritised HSE commissioned Peter Bradley Foundation services Community Outreach Service ABI support team Ms. Margaret Culliton, APT Development Officer

Ms. Margaret Culliton, APT Development Officer Killcruttin Centre Tullamore Co. Offaly Telephone 057 93 41204 Email: margaretculliton@apt-irl.ie Ms. Margaret Culliton, APT Development Officer