PANDDA PRESENTATION 2011
Lyn Kalkman Nov. 2011
Making a Difference? Southern CNC, 2 years on
Or
How can we work together to improve the health of people with an ID in
Southern?
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• Each Regional CNC has unique challenges
• Have worked as CNS in CST for 10 yrs
• Networking essential
• Can’t do it alone
Southern Region
2 area health services (changing) - Illawarra/Shoalhaven, Southern - 19 Public Hospitals - Referral to both Sydney Children’s Hospitals, - All major Sydney adult hospitals and Canberra Population c. 550,000 60% pop Helensburgh- Ulludulla 40% pop scattered in other 90% Few services except Illawarra Estimated 17% have a disability (94,000) *Stats from BOB
Only about 200 live in ADHC GHs. Also non Gov. GHs 1 larger residential with RN each shift and 14 clients Most people with an ID live in family homes 6 ADHC Respite (Bega, Wollongong x 3, Nowra, Bega has RN) Community Support Teams (client base of 1,300) Almost double state ageing population by 2016 (30%)
Challenges for Southern Regional CNC
For clients living in the family home - One Regional CNC and one RN in the Illawarra DISTANCES!! Limited Health services & GPs in country/far south coast Children & Adults with very complex Health Issues eg. Ageing carers with ageing clients move to country areas eg.
Access to DD Clinics in Sydney: too costly, too far Only Nardy House employs RNs for respite eg. Outreach Medical Clinics Early intervention – Multidisciplinary – Person Centred approach
WHY HAVE THE CNC POSITIONS COME ABOUT?
1.Poor health and early death of clients with DD
2. Ombudsman’s report recommended annually to Parliament (from Death Disability review team)
3. Illawarra CNS project (5 CNS involved over the 10 years)
RESEARCH RE HEALTH & WELL BEING OF PEOPLE WITH ID
Similar poor health to indigenous pop Some “doubly disadvantaged” 20 years shorter life expectancy than general pop Only 29% health conditions diagnosed & treated approp 42% health conditions remain undiagnosed - Then only 50% have health conditions managed adequately. Psych conditions: most frequently undiagnosed/untreated Dental Disease: 7 times more common that in gen. pop
WHY?
LIVING AT HOME in SOUTHERN
In Southern the most medically complex clients live with family
Stronger Together & Better Together – community inclusion - Strengthening families and communities to better
support our clients at home
The new world of “self funded packages”
NOWRA/SHOALHAVEN SAMPLE 6 ADHC group homes (30 clients) o None have gastrostomies o None have tracheostomies or require suctioning, oxygen
1 ADHC Respite unit (no RNS) o a few have gastrostomies, no PRN suctioning, no PRN oxygen, no under 7s
LIVING AT HOME WITH FAMILIES o Tracheostomies: 3 children – PRN suctioning – PRN oxygen - percussion o Gastrostomies: many living at home with families o Palliative conditions: a no. of clients. o PRN Midazolam: numerous (also in GHs and Respite) o Aged carers eg. 85yr old mother caring for 60 yr old daughter in renal failure o Most Recently: 11 mth old with tracheostomy, fully ventilated, gastrostomy o Supports: One child with a trachie requiring very frequent suctioning and PRN
oxygen is a single Mum with 3 children
WHAT DOES THAT REGIONAL CNC DO?? AIM:TO IMPROVE THE HEALTH OF PEOPLE IN SOUTHERN WITH AN ID
1. Network with mainstream health services 2. Network with DD specialists 3. Outreach clinics 4. Research (*Para Meadows Nutrition Project)
5. Complex clients – short term – outside Illawarra
6. Supervision & support for Illawarra RN 7. Southern Interagency Peer Support Network (Nurses in DD)
8. Information sessions & presentations eg. CSTs 9. Future Forums and Conferences re Disability health
1. NETWORKING WITH GPs and their Practice Nurses (60 in the Shoalhaven) *CST Presentation
GPs & Paeds: “Gate keeper” for referrals re health Enhanced Primary Care items & Health Care Plan Chronic Disease items eg. Dental (ending) Annual Health Assessment Case Conferences Build a team around client (multidisciplinary) GPs/Paeds can’t work in isolation. Multidisciplinary Check GP division & Medicare website re items Remember GPs have a tiny % of clients with ID Ask…don’t tell
GP SHOALHAVEN PSYCH FORUM 2012 “Emotional Regulation in Children and Young Adults”
Dr Bruce Chenoweth
NETWORKING & INVITING CEO of Shoalhaven Division - GPs & 60 Practice Nurses = CPD points & invites Local Council Youth Project Officer - Contacting non Govt. agencies ADHC Managers: support & some funding Local Paediatricians Local Child Psychiatrist CST staff
* Hope to duplicate in other parts of region if successful
1. NETWORKING WITH OTHER HEALTH SERVICES
Mainstream – GPs, Paeds, specialists, hospitals, CNCs esp. Kids Hosps
CNCs/RNs with Disability Trust, Cram Foundation & Greenacres Health Clinical Nurse Consultants esp. Kids Hospitals
DD Specialists Palliative Care Diagnostic & Assessment Service Early Childhood Nurses Transition Coordinators Epilepsy Action
FUTURE PLANS/NETWORKING Community Health Aboriginal Health Mental health- Illawarra MOU (To be set up in Nowra also)
2. OUTREACH CLINICS I HAVE BEEN INVOLVED IN CURRENT SPECIALIST OUTREACH CLINICS GOULBURN DD Psychiatric clinics NOWRA DD Dysphagia/Nutrition & Complex Medical clinics NAROOMA DD Dysphagia/Nutrition & Complex Medical clinics GOULBURN DD Dysphagia Clinic WOLLONGONG SPECIAL SCHOOL CLINIC – Para Meadows - monthly - Paediatric Medical/Psychiatric – Nutrition clinics – Transition(15+) WOLLONGONG/SHELLHARBOUR ADULT REHAB CLINIC – RN ILLAWARRA & SHOALHAVEN DIAGNOSTIC & ASSESSMENT CLINICS -not now
WHO ARE THE CLINICS FOR? Clients with complex needs for whom mainstream services are not meeting need Need more expertise to move forward eg. Participate in community Only short term then back to GP/Paed/mainstream services
INITIAL FEEDBACK FROM CLINICS CLIENTS FROM THE FOLLOWING RURAL AND REMOTE
LOCATIONS: Eden– Bega - Batemans Bay – Culburra – Narooma – Tomakin – Moruya - Young - Cooma - Yass -Crookwell – Goulburn – Karabar – Queanbeyan –
Marulan - Tomerong - Nowra - Tarraganda - Kangaroo Valley - Callala Bay –St. Georges Basin
COMMON POSITIVE COMMENTS Accessible for rural/remote areas: a whole day travel to Sydney. That the clinic was low key and non threatening No complex Processes to navigate Multidisciplinary approach not available at mainstream appointments
GOOD NEWS STORY example
SOME INTIAL FEEDBACK COMMENTS
“Return to FT school attendance after a very long suspension”.
“ Outcomes were simple and achievable. Modifications to medications also helped”
“Autism info provided removed the concept of G. being difficult” (GH client)
“Reiterated that there are no “psychotic” issues and absconding is a coping behaviour”
“Positive feedback to families which gave them hope that they were supporting him the best that they can”
“Ageing parents felt Dr X gained a great rapport with J.” “Engaging and supportive of parent”
“Sleep and well being have improved following medication change”
“Mainstream services do not understand the complex issues involved. People like J with a mental health issues find themselves falling between the cracks.”
“ Family felt more supported and confident in input and with Dr” “Approach more person and family friendly”
SOME INTIAL FEEDBACK COMMENTS
SUGGESTIONS FOR IMPROVEMENT General feedback was that they would like the clinic more often eg. monthly Increased locations Video conferencing Reduction in paperwork
AGENCIES WHO HAVE SUPPORTED PEOPLE AT CLINIC APPTS ADHC CST staff & GH staff Care South- Cram Foundation- House With No Steps Cerebral Palsy Alliance - Disability Trust- DET staff
MULTIDICIPLINARY - ADHC STAFF SUPPORTING & REFERRING CLIENTS Case Managers- CST Managers Psychologists- BIS staff Therapists
SIPS Southern Interagency Peer Support Group for DD Nurses Greenacres Disability trust Cram Foundation ADHC
MEETINGS 2ND MONTHLY FOR 2 HRS • Sponsored by different agencies each meeting • Professional Peer support • Nurses Conference for 2012 • Terms of Reference - Evidenced Based Practice - Literature & research reviews eg. - Education Sessions eg. - Case studies - Information and resource sharing
OCTOBER SIPS MEETING • About 10 nurses attended • Greenacres, Disability Trust, ADHC CST, Cram, Mountview • Oct Meeting sponsored by ADHC (changes each meeting)
SPEAKER: Illawarra Diagnostic & Assessment Clinic Psychologist Autism Spectrum Disorder
RESEARCH: Gastrostomy Feeding Pros and Cons. Heated Discussion!! - Prior to meeting distributed 3 research papers to be read 1. Dr Lyn Lee 2. Dr Helen Somerville 3 Dr Helen Somerville, Fiona Arrowsmith, co
DISCUSSION re “Disability Health Care In the Gong” Nurses Conference Feb 2012
DISABILITY HEALTH CARE IN THE GONG Nurses Conference 2012
Conference Feb 10th 2012 (for 60) SIPS members, Dr Helen Somerville, Allowah educator & Jann Capizzi Hoping to also invite local nurses eg. Practice. Early Childhood, Uni, Health Topics - Mental Health and ID - Dr Bruce Chenoweth - Sleep Disorders - Dr Ganesh Thanpillay - Palliative Care - Linda Foley CNC/Dr Barclay - “Mr Hankey” - Constipation & Bowel Management - Dr Ted O’Laughlin - “Cerebral Palsy –or is it?” New dilemmas and treatments - - Dr Helen Somerville - Epilepsy - Dr Ernie Somerville - “From Diagnosis to Empowerment DVD” Story of 5 local young families