1. “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

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. Ms. Margaret Culliton, APT Development Officer
“Needs Assessment & Service Development Plan for persons with an ABI” (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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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

20. 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

21. 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

22. 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

23. 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

24. 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

25. 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

26. 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

27. Ms. Margaret Culliton, APT Development Officer
Killcruttin Centre
Tullamore
Co. Offaly
Telephone
Ms. Margaret Culliton, APT Development Officer