role of community sickle cell specialist nurse / genetic
TRANSCRIPT
Lambeth, Southwark and Lewisham Sickle Cell and Thalassaemia Community
Nursing Service
Role Of Community Sickle Cell Specialist Nurse / Genetic
Counselling/ New-born Screening5th August 2020
By
Kemi Ajamufua
Our Local Populations
Hospital Visits
Education & Training
Referral to Other Agencies
i.e. Housing, Social Services,
Voluntary Organisations
General Advice / Information
& Raise Awareness
Health Promotion
Counselling & Screening
Paediatric Clinics
Working in Partnership with
Health Professionals
& Voluntary Organisations
eg. Sickle Cell Society, UK
Thalassaemia Society
Adult Clinics
Home Visits
Support Groups
May 2017
Role Of Community Specialist Nurse ❖ Home visits to assess physical health and social needs of individuals with
Haemoglobinopathies.
❖ Home visits post discharge home from hospital, if indicated.
❖ Support with housing applications (poor housing impacts negatively on health).
❖ Group teaching events (schools, hostels, nursing students etc).
❖ Pain management at home/ help to reduce frequent hospital admissions.
❖ Events to raise awareness about Sickle Cell Disease & Thalassaemia (Brockwell Park
& Lewisham Peoples Day).
❖ Chase up if DNA hospital appointments (cost to NHS).
❖ Genetic counselling /pre –conceptual counselling.
Role Continued……
❖ Liaise with social services, occupational therapist, housing officers.
❖ Advocacy for service users.
❖ Take blood samples to screen partners at ante-natal clinics.
❖ Attend Joint Obstetrics/Sickle clinics monthly.
❖ Health education/ Health promotion / Enable self-care/Prevent ill-health.
❖ Enable people to feel in control and contribute to their overall outcome.
❖ Overall our role is about long term behavioural change, to help individuals
resume control and to regain their quality of life.
STAYING HEALTHY CHECKLIST
• Tips & advice / aide memoire.
• Managing Pain (analgesia ladder).
• Looking after yourself (suitable clothing, balance between activity & relaxation).
• Getting a balance diet (healthy snacks, rehydration).
• Protecting your health(relevant necessary routine vaccinations).
Genetic Counselling
Services We Provide
❖ Provide specialist genetic counselling to support the antenatal populations booked at Guy’s & St Thomas’ Hospital, Kings College Hospital and Lewisham Hospital
❖ To provide effective and acceptable follow up for those undergoing pre-natal diagnosis
❖ To ensure effective and acceptable follow up, care and support for affected infants and carers
❖ To ensure an appropriate level of understanding about screening and these conditionsamong professionals involved with the programme to allow the effective and sensitivedelivery of the screening programme to the population in general
❖ Provide specialist genetic counselling to support the antenatal populations booked at Guy’s & St Thomas’ Hospital, Kings College Hospital and Lewisham Hospital.
❖ To provide timely expert counselling for women/couples with ‘high risk’ pregnancies
Results are emailed daily to WSH
All women are tested for antenatal sickle cell and thalassemia at booking
Positive result i.e. diseases status HB SS or HB SC
Negative result explained to woman and filed in notes– no further action
Carrier status
GSTT midwife ensures client is referred to the joint obstetric clinic
Results are emailed daily to sickle cell counselors
Woman attend for counselling. Partner testing and PND discussed and offered.See pathway B
Woman does not attend for counseling. See pathway C
Woman attends for counselling with her partner tested. PND discussed / offered. See pathway B
A letter is sent from WSH inviting the woman to call and book a chosen appointment for her and partner
to attend for counselling
A letter to call and book an appointment is sent inviting the woman and her partner (if available) for counselling
Referral received in ANC from
Haematology lab
If partner DNA / unavailable identify reason why i.e. – tested previously•Hb type known•Blood form given.
Results received at WSH
If partner DNA find reasons
why give blood form for
partner testing invite to WSH
Results are emailed daily to WSH
All women are tested for antenatal sickle cell and thalassemia at booking
Positive result i.e. diseases status HB SS or HB SC
Negative result explained to woman and filed in notes– no further action
Carrier status
GSTT midwife ensures client is referred to the joint obstetric clinic
Results are emailed daily to sickle cell counselors
Woman attend for counselling. Partner testing and PND discussed and offered.See pathway B
Woman does not attend for counseling. See pathway C
Woman attends for counselling with her partner tested. PND discussed / offered. See pathway B
A letter is sent from WSH inviting the woman to call and book a chosen appointment for her and partner
to attend for counselling
A letter to call and book an appointment is sent inviting the woman and her partner (if available) for counselling
Referral received in ANC from
Haematology lab
If partner DNA / unavailable identify reason why i.e. – tested previously•Hb type known•Blood form given.
Results received at WSH
If partner DNA find reasons
why give blood form for
partner testing invite to WSH
Wooden spoon house sends a list to the
screening coordinator of all women who did not attend for counselling.
Screening coordinator or link midwife put an alert on E3 to inform labour midwife of the woman’s status and lack of
antenatal contact
Named midwife advises couple as per sickle cell advise options. Partner
testing offered then discussion documented in woman’s hand held notes
The labour attending midwife should offer neonatal venous
sampling as appropriate following the birth
The woman should be informed of status by named
midwife at the next visitor labour attending midwife
Screening coordinator and link midwife are unable to make contact with the woman via GP or named midwife
KCHThe screening coordinator or
link midwife writes to the named midwife and attaches
standard letter for woman
Screening coordinator contacts GP to confirm that woman is still registered . Standard letter for woman is posted to the GP surgery. Letter sent to named midwife
TOP discussed and accepted referred
to FMU to arrange TOP
Results given by WSH Carrier status – No Further Action
PND accepted
Women and Partner attend the counselling appointment
both are carriers
WSH Referer couple to FMU
PND declined
Appointment for CVS offered at HBRC
TOP declined Pregnancy continued
WSH offers support
Parents offered
neonatal venous
sampling at birth for
early diagnosis.
CVS Performed and result communicated within 5 working days
Blood test results show at risk baby
List received from Wooden spoon house regarding
consent for venous sampling
Alert entered on E3 informing attending labourmidwife that women has
consented to neonatal venous sampling
Affected status
result given
WSH communicates the
result within 5 working days; by
face-to-face /telephone contact
New-born Screening
❖We receive new born screening results from theRegional Infant Screening Service which is the firstline screening Lab for South East region. (St Thomas’Hospital)
❖Positive results are sent to Kings College Screeningfor second line, final testing and confirmation.
❖Positive results sent to Wooden Spoon House within48 hours
Affected Results
Children with SCD in Lambeth, Southwark and Lewishamboroughs are seen by specialist nurses to give affected resultswithin five working days (initial visit) and follow up visit twoweeks thereafter.
• Referrals are sent to the medical centre of parental choicefor follow care.
• Children with SCD are seen before they are three monthsold (national standard)
Affected Results
• Penicillin prophylaxis prescribed before three monthsof age (62.5mg twice daily).
• Follow up appointment every three to four monthsuntil two years of age, then six monthly.
• Standard immunisation / vaccination (specialvaccination at two years of age: pnuemovax then fiveyearly).
Health Care Plan
Individual health care plan for All children with SCD & Thalassaemia to include:
➢ Preventative measures
➢Medication
➢ Key/Emergency contacts
➢ Yearly review/update
When to Seek Medical Help
Parents are educated to recognise some potential complications of sickle cell early, in order to provide effective assessment and treatment.
• Is the child unwell?
• Is the child usually pale? Especially in the retina
• Is there shortness of breath?
HOW TO ACCESS THE SERVICE
Self –Referral
Via clinic or other health
care professionals
Via the National /
Local Screening
Programmes
MAIN CONTACT
OPENING TIMES
The Centre is open Monday - Friday 9am to 5pm
(except on bank Holidays)
South East London Sickle Cell and Thalassaemia Centre
Wooden Spoon House
5 Dugard Way, Off Renfrew Road
London SE11 4TH
Tel: 0203 049 5993 (main number)
Email: [email protected]
Any Questions?