patients perspective

Helping you to live life well

 Sickle Cell & Thalassaemia Service

Anndeloris Chacon R.N.Clinical Co-ordinator 

Helping you to live life well

Listening to the Sickle Cell and Thalassaemia

Clients

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.

Helping you to live life well

Major themes identified afterlistening to the clients were and are:

1.FearDeathStigmaDisruption

Helping you to live life well

2.Continuous education for the clientsConditionsMedicationComplicationsSelf Management

Helping you to live life well

3.Raising awareness of the clients’ perceptions with professionals and families

Professionals/family disbeliefLabels (lazy, drug addict, etc)

Helping you to live life well

4. How physical and socio-economic stressors affect these disorders

HousingEducationEmploymentSocialising

Helping you to live life well

These themes were addressed through

1. Educational sessions for clients, families/carers, professionals and others

Helping you to live life well

2. Psychological Support Psychotherapy [1 to 1 and a group

session]ReflexologyAqua massage (dry hydrotherapy)Psychology

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

Helping you to live life well

How can we help the clients to live to their optimum level of well-being?

LISTEN

DISCUSS

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

Helping you to live life well

Solution:Provide individualised, client centred holistic care

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.

Helping you to live life well

Outcome:An empowered client with

excellent self management who receives support and advice for the service.

Helping you to live life well

Client at the centre

Services around to support well-being

Coordination of Hierarchy of

Needs

Helping you to live life well

Thank you for listening