Education and collaboration forum on caring for children with sickle cell
The Perth Children’s Hospital (PCH) Haematology service is inviting GPs (in person or virtually), to a unique, half-day education and collaboration forum on Friday 13 December that will bring together health professionals, patients with sickle cell disease, their families and carers.
The first 90-minute session will offer concurrent sessions for patients and parents/carers for facilitated discussion and Q&A to better understand the patient experience.
The second hour and 45-minute session is for patients, families/carers and their GP. The PCH Adolescent Haematology Department will give key information on providing the best care for children living with Sickle Cell Disease.
View a copy of the event agenda here and find out more and register here.
Contact Hospital Liaison GP, Dr Claire Bowden via PCH.HospitalLiaisonGP@health.wa.gov.au if you are unable to attend and would like to view the event recording.
Dr Claire Bowden
Hospital Liaison GP, Perth Children’s Hospital
PCH.HospitalLiaisonGP@health.wa.gov.au
(08) 6456 3317
Available: Monday
October 2024
Familial hypercholesterolaemia (FH) – a treatable paediatric disorder
GPs are ideally placed to collaborate in a shared-care, risk-reduction pathway to ensure earlier detection, appropriate treatment, and improved outcomes for all children with Familial Hypercholesterolaemia (FH)
FH is the most common and serious cause of inherited high cholesterol and, if untreated, leads to premature atherosclerosis and coronary artery disease (CAD). The prevalence is approximately one in 250, but currently less than 5 per cent of all children in Australia with FH are diagnosed.
National paediatric FH guidelines have been published and include guidance on the diagnosis and management of FH in children.1 Diagnostic tools such as the Dutch Lipid Clinic Network Score should not be used in children under 18 years, but a phenotypic diagnosis of probable FH can be made with:
- LDL-cholesterol level >5 mmol/L in the absence of parental history of hypercholesterolaemia or premature CAD (≤55 years in males, ≤65 years in females);
- LDL-cholesterol of 4-5 mmol/L with parental history of hypercholesterolaemia or premature CAD; or
- LDL-cholesterol >3.5 mmol/L with a parent with a pathogenic gene variant.
Genetic testing should be performed to confirm the diagnosis in children with probable FH. GPs can order FH genetic cascade testing of first or second-degree relatives of an index case with a documented pathogenic gene variant (MBS pathology item 73353). Read the July 2023 GP Connect Clinical Feature on familial hypercholesterolaemia for more information on cascade testing.
Treatment of FH in childhood can significantly decrease cardiovascular morbidity and mortality.2 Life expectancy in untreated FH is about 20 years less than the general population, but if diagnosed and treated from childhood, individuals with FH can expect to have a normal life expectancy. Treatment consists of lifestyle interventions including a healthy, low-fat diet, regular physical activity, a lipid-lowering medication and avoidance of smoking and vaping. Initiation of statins should be considered at eight to 10 years of age for heterozygous FH, and from the time of diagnosis for the rarer homozygous FH. Statins are very well tolerated in children and side effects are exceedingly rare.
The Perth Children’s Hospital Familial Hypercholesterolaemia service has recently been expanded to include a FH Nurse Practitioner as well as an enhanced referral process to ensure all children with confirmed FH are offered assessment and ongoing management, either at the clinic or with their GP
GPs can contact the Familial Hypercholesterolaemia service at Perth Children’s Hospital on 6456 8358 or 0461393580, or by email: PCH.FH@health.wa.gov.au for further information or advice.
Further information:
- Clinician Assist WA Familial Hypercholesterolaemia (FH) clinical pathway
- Clinician Assist Cascade Screening for Familial Hypercholesterolaemia (FH) clinical pathway
- FH, my family and me – PCH Patient resource
References:
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Horton AE, Martin AC, Srinivasan S, et al. Integrated guidance to enhance the care of children and adolescents with familial hypercholesterolaemia: Practical advice for the community clinician. J Paed Child Health 2022;58(8):1297-1312.
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Luirink IK, Wiegman A, Kusters DM, et al. 20-Year Follow-up of Statins in Children with Familial Hypercholesterolemia. N Engl J Med. 2019; 381: 1547-1556.
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Wald DS, Bestwick JP, Morris JK, et al. Child-Parent Familial Hypercholesterolemia Screening in Primary Care. N Engl J Med. 2016; 375: 1628-1637.
Dr Claire Bowden
Hospital Liaison GP, Perth Children’s Hospital
PCH.HospitalLiaisonGP@health.wa.gov.au
(08) 6456 3317
Available: Monday
September 2024
Feeding Assessment and Support Team at Perth Childrens Hospital
The Perth Children’s Hospital (PCH) Feeding Assessment and Support Team (FAST) provides multidisciplinary, time-responsive, and family focused services for infants and children with tertiary feeding difficulties.
The outpatient service comprises a consultant paediatrician, clinical nurse, dietitian, speech pathologist, and occupational therapist. This multidisciplinary team (MDT) works in collaboration with the family of children with paediatric feeding disorder (PFD) and other feeding difficulties to identify and overcome barriers to safe, sustainable, and developmentally appropriate feeding/mealtime engagement.
What type of referrals will FAST accept?
FAST will accept referrals for infants and children who have a PFD and who are at risk of hospitalisation or critical incident due to:
- Malnutrition or faltering growth
- Clinical signs of dysphagia e.g. aspirating, poor chest health, aspiration pneumonia
- Coexisting morbidities affecting feeding – respiratory difficulties, cardiac, prematurity, airway issues (laryngomalacia) etc
- Enteral feeding
- Significant food aversion and/or distress during feeding.
Available FAST services:
- Provide a combined dietetic and/or occupational therapy and/or speech pathology assessment of the infant/child’s feeding and family mealtimes (as indicated)
- Work with the family to set and support feeding goals.
- Where appropriate, liaise with the clinical nurse specialist and/or consultant paediatrician. Please note not all children are seen by the consultant paediatrician.
- When tertiary feeding concerns are resolved but developmental feeding difficulties continue, refer-on to appropriate community services.
- Work collaboratively with the infant/child’s GP/paediatrician and handover care when appropriate.
Note: FAST eligibility is reviewed periodically dependent on client need and goals. Current referral criteria and information on how to refer is available here.
For more information on feeding difficulties, see the Perth Childrens Hospital website.
GPs can contact the FAST team on email PCH.FAST@health.wa.gov.au or through PCH Switchboard on 6456 2222.
Dr Claire Bowden
Hospital Liaison GP, Perth Children’s Hospital
PCH.HospitalLiaisonGP@health.wa.gov.au
(08) 6456 3317
Available: Monday
February 2024
Pre-referral guidelines for Perth Children’s Hospital
Perth Children’s Hospital (PCH) provides over 100 pre-referral guidelines, developed specifically by the relevant PCH specialty, to outline the suggested assessment and management measures that should be followed prior to referral to PCH outpatient departments.
The guidelines can be used in conjunction with HealthPathways WA, which provides further relevant assessment, management, and referral information.
Many conditions, such as failure to thrive, require specific referral information to allow accurate triage – unfortunately this is not always included on referrals. The Pre-Referral Guideline for Failure to Thrive outlines very useful advice as to what information is required.
Other pre-referral guidelines include:
- bladder dysfunction
- iron deficiency and anaemia
- microcephaly and macrocephaly
- eating disorders.
To access the guidelines, see Perth Children’s Hospital Pre-referral Guidelines
Other useful resources include:
- Perth Children’s Hospital Emergency Department Guidelines
- HealthPathways WA
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s Hospital
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm
October 2023
Update to Perth Children’s Hospital allergy services
As many GPs will be aware, there is significant demand for paediatric allergy services across the state, with referrals increasing to the Perth Children’s Hospital (PCH) Immunology Service. This has resulted in extended waiting times of up to three years for the regular follow-up of older children, creating uncertainty for families on the timing of reviews.
This is in addition to a new referral wait list that exceeds 2,000 patients with non-urgent referrals currently waiting up to 24 months for their first appointment.
To provide more timely access for children that are newly referred, PCH is developing a shared care arrangement with primary care providers to help review our school aged patients. This will involve children with stable food allergies being discharged back to their GP with a clear plan for re-referral at critical time points, such as the commencement of primary school, high-school, and at 15 years of age. GPs willbe encouraged to contact PCH or refer patients back sooner if concerns arise prior to their scheduled review.
GPs are asked to continue to see these patients on a yearly basis for an updated action plan and adrenaline autoinjector scripts and to refer patient’s back to PCH for ongoing care as outlined in their discharge letters.
Discharge letters will be sent to families and their nominated GP at time of discharge as well as to My Health Record with additional information and updated contact details.
PCH remains committed to providing high quality care and are here to support GPs and our patients. This model is expected to be implemented in late Nov 2023. Email paediatric.immunology@health.wa.gov.au if you have questions regarding patient care or the updated model of care.
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s Hospital
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm
March 2022
Perth Children’s Hospital – Launch of pre-referral guidelines
Departments across Perth Children’s Hospital (PCH) have been working to produce a series of pre-referral guidelines to PCH for GPs and health professionals.
PCH accepts referrals from private consultants and general practitioners to the 50+ outpatient and inpatient services available for children and young people in Western Australia.
The new pre-referral guidelines aim to assist health professionals with when to refer and the process of referring to PCH, providing information on:
- The condition
- Pre-referral investigations
- Pre-referral management
- When and how to refer
- Links to Health Pathway WA guidelines
- Useful resources
- Contact details for information.
You can find these guidelines on the PCH website under the new section on how to refer to PCH.
These guidelines join the referral process for other CAHS services including Community and Child Health, Mental Health and NETS WA available on the CAHS website.
This has been a work in progress by our PCH Outpatient Reform team. If you have a suggested guideline or feedback, please complete our quick survey or contact PCH.OutpatientReform@health.wa.gov.au
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s Hospital
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm
November 2022
PCH Care coordination program for children with long term medical complexity
The Connect Care Program for Kids is a care coordination program for children with long term medical complexity. Provided by the Child and Adolescent Health Service (CAHS) and delivered by the Ambulatory Care nurses at Perth Children’s Hospital (PCH), the program provides varying levels of support to meet the individual needs of patients and families in the community. It offers a single point of contact, allowing experienced nursing staff to partner with families, specialist teams and community services to coordinate a child’s care.
The services provided by the Connect Care Program include:
- Discharge planning
- Parent education
- Development of an Integrated Health Care Plan
- Telephone support
- Community outreach, including linkage with GPs and community health nurses
- Linkage with local hospitals and other health services
- Home visits (Perth metropolitan area only)
- Emergency Department notification (PCH and local hospitals)
- Linkage with peer supports
- Coordination of outpatient appointments
- Referral to and assistance to navigate the National Disability Insurance Scheme (NDIS)
- Transitional care
Children enrolled in the Connect Care Program for Kids will be assisted by the Clinical Nurse Team and one of the team may accompany the family at the initial visit to the GP. Dr Rachel Collins is the paediatrician supporting this program and is keen to establish a support service to the GPs looking after children with complex needs. This would involve direct communication with the GP.
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s Hospital
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm
October 2020
The GP’s role in Prevention of Bronchiectasis in Aboriginal Children
“The GP follow up of Aboriginal children previously admitted for chest infections is critical in providing the necessary care to prevent bronchiectasis”, advises Dr André Schultz.
It is important to follow up Aboriginal children hospitalised with chest infections. Acute lower respiratory infections (ALRIs) are the most common cause of hospitalisations for Aboriginal children younger than five years. A lesser known fact is that approximately 20% of Aboriginal children who are hospitalised with ALRIs infections such as bronchiolitis or pneumonia will go on to develop chronic lung disease e.g. bronchiectasis.
That is why it is essential to ensure that Aboriginal children hospitalised with ALRIs are followed up. Follow up a month after hospital admission is important to check for low grade respiratory symptoms such as wet cough that has been present since the admission.
Chronic wet cough in this context is often a symptom of protracted bacterial bronchitis (PBB). PBB often occurs in the absence of any other clinical symptoms or signs. Prompt and effective treatment of protracted bacterial bronchitis can prevent progression to bronchiectasis and prevent a life burdened with chronic disease.
The ‘Persistent Cough in Children’ HealthPathway defines PBB as “wet cough lasting for > 4 weeks without specific pointers of an alternative cause, and which responds to antibiotic therapy”. PBB often requires 2 to 4 weeks of antibiotic therapy and referral to a specialist if the cough does not resolve with treatment.
A free on-line training module on paediatric Aboriginal lung health is available here. The module is endorsed by the WA Department of Health, the Child and Adolescent Health Service, the WA Country Health Service and other key health institutions across WA.
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s Hospital
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm
August 2020
Referrals for Outpatient Appointments at PCH
In the past, some referrers have been sending referrals to individual departments via fax or email.
From 10 December 2019, all non-urgent referrals will go to CRS (as usual) and urgent referrals should be directed to the Perth Children’s Hospital (PCH) Referral Office.
Urgent referrals must always be discussed with the PCH Consultant/Register on call before the referral is sent. The name of the doctor contacted should be recorded on the referral. Each referral is to be faced individually to the PCH Referral Office on 6456 0097 or by emailing
pch.referals@health.wa.gov.au
Further information regarding referrals is on the PCH website under Health Professionals page and the GP Liaison tab available here – https://pch.health.wa.gov.au/For-health-professionals/Hospital-Liaison-General-Practitioner
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s Hospital
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm
August 2019
New PCH resources for children transitioning to adult healthcare
The Perth Children’s Hospital website now includes information for young people (and their families), transitioning from paediatric to adult health services. This includes a useful factsheet on how to access GP appointments, billing and how to get a Medicare card. Currently available to access under ‘Patients and Visitors’, this information will also be made available on the Liaison GP page under ‘Health Professionals’.
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm
August 2019
New multidisciplinary clinic to treat bladder dysfunction in children
The new Bladder Dysfunction Clinic offers patients access to a paediatrician, specialist continence physiotherapist and specialist continence clinical nurse consultant. All patients are seen jointly and undergo uroflow and real time ultrasound of bladder capacity and pelvic floor muscle function. Once the diagnosis is determined, a management plan will be given. Follow up will be primarily by email and telephone. At present the clinic is only seeing patients with daytime urinary incontinence.
GPs need to arrange a renal ultrasound before referral (as in all cases referred for eneuresis), and should request a measurement of bladder wall thickness, rectal diameter and post void residual volume. Results (including MSU) should be included with the referral, via the CRS.
Ineligible families are currently:
- Families who require an interpreter or don’t have internet access (all our paperwork is in English at present)
- Children with developmental delay, autism or other behavioural disorders (refer to the Pebbles specialist continence team at Therapy Focus)
- Children with constipation and soiling
- Neurogenic bladders
- Those already known to a urologist/incontinence service
- Nocturnal enuresis without daytime symptoms (still forward to the Enuresis Clinic
Dr Maree Creighton
Hospital Liaison GP, Perth Children’s Hospital
maree.creighton@health.wa.gov.au
Available: Tuesday 9am-12pm and Wednesday 12pm-5pm