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