This document discusses the challenges faced by those living with sickle cell and thalassaemia disorders based on interviews with clients. It identifies major themes like fear of death, stigma, need for continuous education, and how physical and socioeconomic stressors affect their conditions. It proposes addressing these through educational sessions, psychological support, and home care support. The vision is for individualized, holistic care coordinated across services to help clients maintain an optimum level of well-being and empower them through self-management support.

1. Helping you to live life well
Sickle Cell & Thalassaemia
Service
Anndeloris Chacon R.N.
Clinical Co-ordinator

2. Helping you to live life well
Listening to the
Sickle Cell and Thalassaemia
Clients

3. Helping you to live life well
Aim:
To look at how Sickle Cell and
Thalassaemia affect the lives of
those with the disorder, their
family, education and other
aspects.

4. Helping you to live life well
Major themes identified after
listening to the clients were and are:
1.Fear
Death
Stigma
Disruption

5. Helping you to live life well
2.Continuous education for the
clients
Conditions
Medication
Complications
Self Management

6. Helping you to live life well
3.Raising awareness of the clients’
perceptions with professionals and
families
Professionals/family disbelief
Labels (lazy, drug addict, etc)

7. Helping you to live life well
4. How physical and socio-economic
stressors affect these disorders
Housing
Education
Employment
Socialising

8. Helping you to live life well
These themes were addressed
through
1. Educational sessions for clients,
families/carers, professionals and
others

9. Helping you to live life well
2. Psychological Support
Psychotherapy [1 to 1 and a group
session]
Reflexology
Aqua massage (dry hydrotherapy)
Psychology

10. Helping you to live life well
3. Trial of home care support when
managing crises at home alone
Cleaning of the home
Collection of medication
Someone to visit after discharge

11. Helping you to live life well
How can we help the clients to live
to their optimum level of well-being?
LISTEN
DISCUSS

12. Helping you to live life well
ASK QUESTIONS do not
ASSUME
BE MINDFUL OF THE LABELS we
give to the clients – this stays with
them for life

13. Helping you to live life well
Solution:
Provide individualised, client
centred holistic care

14. Helping you to live life well
Vision:
Sickle Cell and Thalassaemia
Services will provide for each client
with coordinated services which deliver
access and support to
maintain/increase their optimum level
of well-being.

15. Helping you to live life well
Outcome:
An empowered client with
excellent self management who
receives support and advice for the
service.

16. Helping you to live life well
Client at the centre
Services around to support well-being
Coordination of
Hierarchy of
Needs

17. Helping you to live life well
Thank you for listening