We are all delighted that Helen has joined us. She is based at Great Ormond Street Children's Hospital. Helen will be providing nurse support for affected families throughout the UK, as well as for the families of Great Ormond Street patients. Helen can help in a number of ways. For example, she can be 'a listening ear' on the end of the phone, give advice, liaise between medical professionals and explain CGD to staff at schools, make home visits and visit regional clinics. To find out more details of the service, please click on Care, Details of nursing services. To learn more about Helen, please see the interview below!
Please tell us what attracted you to work as the CGD Research Trust's paediatric nurse specialist.
I really enjoy working as a clinical nurse specialist (CNS), so when the opportunity came up to work for the CGD Research Trust I was very pleased to be able to join the charity. I was attracted to the post as it will enable me to utilise my skills and provide a family focused service with the support of a very experienced and established team.
What will you bring from your previous work that will particularly help you in this role?
I feel that the skills I have acquired whilst working in complex situations will help me to support children, families and young people coping with chronic illness and complex decisions regarding their children's care.
Can children and teenagers phone you, as well as parents/carers?
I am happy to take calls from children and teenagers. Their need for information is often very different to everyone else's and I would certainly encourage open communication with them.
How are you enjoying your role?
I've been in the post for a few weeks now and have been made to feel welcome, which is making the job very enjoyable. I have already enjoyed hearing from some of the families who I will be working with and I am looking forward to getting to know more over the next few months.
What do you feel you can offer?
I feel confident that I can offer advice and support on all aspects of care required by children, young people and the families affected by CGD. As I work with the larger CGD community I will be able to share experiences and learn from different situations. This will be important when providing support.
How do you see the service making a difference to children and families?
The service is already making a difference. I think it is important that we learn from families so that we can continue to make that difference. One of my key tasks will be to engage healthcare professionals with whom I am in contact and provide them with appropriate resources to ensure they are aware of CGD.
You are based at Great Ormond Street Children's Hospital, but work for the CGD Research Trust. How does that work?
Being based at Great Ormond Street means that I have access to my medical and nursing colleagues, which is really helpful. It gives me the opportunity to keep my clinical practice up to date.
What are your hopes and aims for the service?
I would like to think the service I provide will enable the families to feel confident about living with CGD. By responding to concerns and anxieties and through giving support and information, I hope to help them to cope with the difficulties that living with CGD may bring.
Is there anything that lies outside the scope of what you think you, and the service, can offer?
Being a clinical nurse specialist means you get to do a little bit of everything, so it is important for me to know when to refer to other specialists such as psychologists or perhaps a genetic counsellor. The CNS is part of a much larger team so team work is essential.
What do you think will be the biggest challenges of the job?
Realistically the biggest initial challenge will be meeting all the families! However, there are many ways that this can happen so it may just take some time.
How do you see care for this community going?
As a greater understanding through training and education reaches the wider community then I would hope that care for the individual can be provided effectively and safely so parents and children feel listened to and understood. I see care for this community being built on learning as much as we can from each other.
Is there anything we can do to enable you to help our community?
The CGD Research Trust created, and funds, this post. The charity enables me to travel where necessary and ensures that I have the appropriate equipment to carry out my job. It lets people know how to contact me and is very pro active in supporting me in this role. The best way of helping me further is for patients to keep in touch with me directly and for the charity to give me lots of feedback on the concerns and views of the membership.
Everyone at the CGD Research Trust looks forward to working with Helen and we wish her well in this post.
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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