margaret culliton development officer apt, hse dublin mid leinster area

Ms. Margaret Culliton, APT DevelMs. Margaret Culliton, APT Development Officer opment Officer

““How How practicepractice develops develops from a research based from a research based needs assessment for needs assessment for

persons with an Acquired persons with an Acquired Brain Injury”Brain Injury”

Margaret CullitonMargaret CullitonDevelopment OfficerDevelopment Officer

APT, HSE Dublin Mid Leinster AreaAPT, HSE Dublin Mid Leinster Area


Background:Background:

• BRÍBRÍ & HSE & HSE • Response by HSEResponse by HSE– – “Needs Assessment & “Needs Assessment &

service Development Plan for persons with service Development Plan for persons with an ABI” 2004 (Dr. Regina Kiernan)an ABI” 2004 (Dr. Regina Kiernan)

• Project team established – service users/providersProject team established – service users/providers

• Survey of: Survey of: clients and families (qualitative information)clients and families (qualitative information) service providers (qualitative and quantitative service providers (qualitative and quantitative

information)information) information contained on databases information contained on databases E.g. PSDD in E.g. PSDD in

Midland areaMidland area


Head Injury in Midlands (every year)Head Injury in Midlands (every year)

• 600 cases of Mild Injuries600 cases of Mild Injuries

• 40 cases of Moderate Injuries40 cases of Moderate Injuries

• 18 cases of Severe Injuries18 cases of Severe Injuries

• Approx 5 – 10% of those hospitalised will die Approx 5 – 10% of those hospitalised will die

““An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004

• Identified from a recent Report from HSE MidlandsIdentified from a recent Report from HSE Midlands

“ “An Needs Assessment & Service Development Plan for persons with an An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004Acquired Brain Injury 2004


LocationLocation• HSE Dublin Mid HSE Dublin Mid

Leinster areaLeinster area– 4 counties: Laois/Offaly 4 counties: Laois/Offaly

Longford/Westmeath Longford/Westmeath – Population of approx Population of approx

251,000 251,000 • APT – Aontacht APT – Aontacht

Phobail TeorantaPhobail Teoranta – – (Community with agreed (Community with agreed purpose)purpose) – Subsidiary company of Subsidiary company of

HSE Dublin Mid LeinsterHSE Dublin Mid Leinster– RT, EBT, Shops, other RT, EBT, Shops, other

projectsprojects


Some Facts from the Midland AreaSome Facts from the Midland Area

• The average age of those admitted to The average age of those admitted to Midlands Regional Hosp with ABI (under Midlands Regional Hosp with ABI (under 65 years)65 years)– TBI was 28 yearsTBI was 28 years– CVE was 55.5 yearsCVE was 55.5 years– Brain tumour was 35 yearsBrain tumour was 35 years– Infection was 17 yearsInfection was 17 years– Anoxia (<1 and 8 years)Anoxia (<1 and 8 years)

• 78% were discharged home and 14% 78% were discharged home and 14% transferred to other hospitals, 5 -10% did not transferred to other hospitals, 5 -10% did not survivesurvive

““An Needs Assessment & Service Development Plan for persons An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004with an Acquired Brain Injury 2004


Client SurveyClient Survey (main points)(main points)

• Main consequences of ABI: Main consequences of ABI: – difficulties with ADL’s, concentration & memory difficulties with ADL’s, concentration & memory

problems, mood swings, anxiety and depression problems, mood swings, anxiety and depression ……..……..

• Social problems in nearly 60% casesSocial problems in nearly 60% cases– Worse finances > 40%Worse finances > 40%– < 20% returned to work< 20% returned to work– 40% carers did not return to work40% carers did not return to work




• Services requiredServices required by individuals by individuals– Physiotherapy, OT, & SLT Physiotherapy, OT, & SLT – Peer supportPeer support– Financial assistanceFinancial assistance– PA/Home help servicesPA/Home help services– Counselling & Psychology Counselling & Psychology – Respite care, Day care and Residential careRespite care, Day care and Residential care

““An Needs Assessment & Service Development Plan for An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004persons with an Acquired Brain Injury 2004



• Barriers to accessing existing services:Barriers to accessing existing services:

– Nearly 75% stated Nearly 75% stated lack of informationlack of information

– 71% 71% lack of service co-ordination & lack of a lack of service co-ordination & lack of a single contact personsingle contact person

““An Needs Assessment & Service Development Plan for persons with an An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury 2004Acquired Brain Injury 2004


QuotesQuotes

– "No body cares you're just a number and it’s just a job "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 that gives them money. They don't have the interest or care in your special needs.“care in your special needs.“

– ““There simply is no one I know with any understanding There simply is no one I know with any understanding about my injury. It can be very frustrating”.about my injury. It can be very frustrating”.

– ““No one will do anything when you tell them what you No one will do anything when you tell them what you have had to put up with.... It like no one cares too many have had to put up with.... It like no one cares too many committees meetings etc we cant see any difference."committees meetings etc we cant see any difference."


Service ProviderService Provider (Survey(Survey) main ) main points:points:

• Nearly 1/3Nearly 1/3rdrd individuals with ABI self individuals with ABI self sufficientsufficient

• Almost ½ of individuals cared for at home Almost ½ of individuals cared for at home with regular/occasional HSE supportwith regular/occasional HSE support

• Individuals who are inappropriately placedIndividuals who are inappropriately placed• Need for more education for staff re. ABINeed for more education for staff re. ABI



QuotesQuotes (from service providers)(from service providers)

– ““The current services for people with an The current services for people with an Acquired Brain Injury are totally inadequate. Acquired Brain Injury are totally inadequate. Their needs are not met”.Their needs are not met”.

– “ “Very unsatisfactory from my (health Very unsatisfactory from my (health professional’s) point of view… There is no one professional’s) point of view… There is no one giving family support or counseling for this giving family support or counseling for this family” family”

““An Needs Assessment & Service Development Plan for persons with An Needs Assessment & Service Development Plan for persons with an Acquired Brain Injury” 2004an Acquired Brain Injury” 2004


““Needs Assessment & Service Development Needs Assessment & Service Development Plan for persons with an ABI” 2004 Plan for persons with an ABI” 2004 (Dr. Regina Kiernan)(Dr. Regina Kiernan)

• Many recommendations…..about Many recommendations…..about service deliveryservice delivery

• Development Officer ABI – Development Officer ABI – centralcentral to to service development for this group of service development for this group of individualsindividuals– Address issues identified in Kiernan Address issues identified in Kiernan

ReportReport


Pilot ProjectPilot Project

• APT commissioned to undertake pilot APT commissioned to undertake pilot projectproject

• Pilot Project - commenced May’ 04 & Pilot Project - commenced May’ 04 & ran for 2 yearsran for 2 years

• Development Officer ABI (employed Development Officer ABI (employed by APT) by APT)

• Project funded by HSE Midland Area Project funded by HSE Midland Area – Collaboration with Disability Services & Collaboration with Disability Services &

service providers in areaservice providers in area


Role of Development Officer ABIRole of Development Officer ABI

• Provision of advice, information & Provision of advice, information & support for persons with ABI/ Familiessupport for persons with ABI/ Families

• Liaison – hospitals, NRH, community Liaison – hospitals, NRH, community services, & other voluntary agenciesservices, & other voluntary agencies

• Co-ordination supports involved Co-ordination supports involved • Development of peer support groupsDevelopment of peer support groups

– BRÍBRÍ

• Education/Awareness Education/Awareness


Role of Development Officer ABIRole of Development Officer ABI

• Prioritise service delivery needs & Prioritise service delivery needs & identify service gapsidentify service gaps

• Support new developments in ABI Support new developments in ABI within Midlands in co-operation with within Midlands in co-operation with service providersservice providers– Influence current service provisionInfluence current service provision


Starting Point:Starting Point:

• Where are these individuals & their Where are these individuals & their families?families?

• No single register of clientsNo single register of clients

• BRÍBRÍ

• P&SDD – letter sent from HSEP&SDD – letter sent from HSE

• Arranged meetings:Arranged meetings:– community service providers in Midlandscommunity service providers in Midlands– rehabilitation services (NRH)rehabilitation services (NRH)– acute services (hospitals)acute services (hospitals)


Initial phase:Initial phase:

• All referrals with ABI < 65yearsAll referrals with ABI < 65years

• Rapid increase of referralsRapid increase of referrals

• Priority to Priority to – new cases with ABInew cases with ABI– Individuals in hospitalIndividuals in hospital– Individuals in NRHIndividuals in NRH– Subsequent cases then prioritisedSubsequent cases then prioritised


Case History:Case History:

• John 15year oldJohn 15year old

• TBI – following TBI – following sports injury at sports injury at schoolschool

• Family – lives with Family – lives with parents and 1 older parents and 1 older sister (18yrs)sister (18yrs)

• Hospital Hospital Admissions:Admissions:– Acute Neuro UnitAcute Neuro Unit– Transferred to NRH Transferred to NRH

for rehabfor rehab

• Initial meeting with Initial meeting with mother in NRHmother in NRH


Case History Cont.Case History Cont.

• Liaison with NRH – periodicallyLiaison with NRH – periodically

• Preparation for dischargePreparation for discharge– Video case conference organised Video case conference organised

• with all relevant service providers – HSE, voluntary with all relevant service providers – HSE, voluntary agencies, & schoolagencies, & school

• Care package agreedCare package agreed priorprior to discharge to discharge

• 2nd video case conference - Pre discharge2nd video case conference - Pre discharge– to assess progress & confirm that supports in to assess progress & confirm that supports in

placeplace– discharge date agreeddischarge date agreed


Case History Cont.Case History Cont.

• Ongoing contact Ongoing contact (by DO) with John &/family (by DO) with John &/family CrucialCrucial!!! !!!

• Responsible forResponsible for co-ordination co-ordination care package & care package & reviewsreviews

• 33rdrd case conference held (locally) after discharge case conference held (locally) after discharge• Outcomes:Outcomes:

– John & family:John & family:• satisfied with current supports (therapies, phn, pa, satisfied with current supports (therapies, phn, pa,

school/sna)school/sna)• had access to necessary information as they needed to know had access to necessary information as they needed to know

itit– Service provision – “co-ordinated approach”Service provision – “co-ordinated approach”

• ““A SEAMLESS SERVICE”A SEAMLESS SERVICE”


Other cases:Other cases:• Families requiring information:Families requiring information:

– ““Preparation for discharge” ….home or otherwisePreparation for discharge” ….home or otherwise– entitlements/benefitsentitlements/benefits– counselling servicescounselling services– peer supportpeer support

• Individuals (ABI)Individuals (ABI)– Referrals for therapy/NRH/counselling Referrals for therapy/NRH/counselling – Information Information

• BRI meetingsBRI meetings• hospital visits – transport, directions or format of opdhospital visits – transport, directions or format of opd• employment/further training employment/further training • GMS cards GMS cards


Benefits of ABI project- Benefits of ABI project- for for persons with ABI & familiespersons with ABI & families

• Continued contact personContinued contact person for for individual with ABI & familyindividual with ABI & family– hospital transfer hospital transfer

home/NRH/Residential placementhome/NRH/Residential placement

• More timely & co-ordinated response More timely & co-ordinated response by community supportsby community supports


Benefits of ABI project- Benefits of ABI project- for for persons with ABI & familiespersons with ABI & families

• anxiety/fear/isolationanxiety/fear/isolation– concerns addressedconcerns addressed – improved information about:improved information about:

•services that can helpservices that can help•roles of various people involved in supporting roles of various people involved in supporting

themthem•what to expect? E.g.. Returning home what to expect? E.g.. Returning home •assistance to work out what is needed & how assistance to work out what is needed & how

to get itto get it

• Development of peer support Development of peer support


Benefits of ABI project- Benefits of ABI project- for service for service provisionprovision

• communication with service providers communication with service providers (within/outside HSE Midland Area)(within/outside HSE Midland Area)

– phone calls, interim reports, discharge phone calls, interim reports, discharge summariessummaries

• co-ordination of support servicesco-ordination of support services• Swift response of services for urgent casesSwift response of services for urgent cases• Staff networking and supporting each other Staff networking and supporting each other • Improved education/training for service Improved education/training for service

providersproviders– Education seminars/targeted workshops Education seminars/targeted workshops


Benefits of ABI project - Benefits of ABI project - for for service provisionservice provision

• Strategically Strategically – Gaps in services clearly identified &Gaps in services clearly identified &– Plan how we would address those needsPlan how we would address those needs– Commitment by HSE to address prioritised Commitment by HSE to address prioritised

needs through service planningneeds through service planning

• ABI Project completed in May 2006 ABI Project completed in May 2006 – Approx 100 persons with ABI & families Approx 100 persons with ABI & families

identified & supported to various degreesidentified & supported to various degrees


DevelopmentsDevelopments::

• Main recommendations made by project to Main recommendations made by project to HSEHSE– More resourcesMore resources– Community outreach service for individuals & Community outreach service for individuals &

their families to be prioritisedtheir families to be prioritised

• HSE commissioned Peter Bradley HSE commissioned Peter Bradley Foundation services Foundation services – Community Outreach ServiceCommunity Outreach Service– ABI support team ABI support team


Margaret CullitonMargaret Culliton

Development OfficerDevelopment Officer

APTAPT

Killcruttin CentreKillcruttin Centre

TullamoreTullamore

Co. OffalyCo. Offaly

Telephone 057 93 41204Telephone 057 93 41204

Email: [email protected]: [email protected]

margaret culliton development officer apt, hse dublin mid leinster area

Documents

hse midlands

special needs

hse dublin mid leinster

br hse response

day care

residential care

midlands regional hosp

stated lack of information71