Key points throughout the day:
- Listen carefully to CGD patients
- Avoid making assumptions
- Identify the underlying cause behind symptoms
- Give immediate attention and swift treatment to patients with CGD
The emotional impact of CGD
Dr Penny Titman, Consultant Clinical Psychologist, Great Ormond Street Children's Hospital
- Families affected by CGD tend to have many anxieties by the time a diagnosis is made
- There needs to be increased understanding of the interactive between physical illness and psychological impact
- There are many issues in families affected by CGD, ranging from anxiety post diagnosis to feelings of guilt; trying to protect a child and allow it to lead a normal life. For the child there are many other issues - feeling different, having to miss school etc.
- Research has shown that physical illness increases the risk of psychological difficulties which present as emotional, rather than behavioural problems.
- Early data collected in Dr Titman's current research project into the emotional impact of CGD shows how differently members of a family can interpret their experiences.
- There is still a stigma attached to psychology services. Nurses are best placed to form the first line of help. They can also contribute to breaking down the barriers and to offer help from clinical psychologists as part of the health team.
- Access to clinical psychology services is still difficult within the NHS and Dr Titman encouraged the delegates to take note that the CGD clinical psychology Support Service is just underway.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2007 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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