The Editor interviews Rhian-Keturah Lant, the CGD Research Trust's very own Specialist Nurse
[Ed]: Rhian, please tell us what attracted you to work as the CGD Research Trust's specialist nurse, and what you did previously.
[Rhian]: Before working for the CGDRT I was nursing on high dependency units at Great Ormond Street Hospital, mostly within the bone marrow transplant (BMT), immunology and cancer areas. I had been able to spend six months working with the specialist admissions and discharge nurse for BMT. I really loved working to make the medical care of the child become part of family life, putting families back in charge after an intensive period of sickness.
When I heard about the work of the Clinical Nurse Specialist for CGD, I knew it had the balance between the pace of hospital work and the satisfaction of keeping people at home, both of which I wanted to be part of. I also loved the idea of being able to travel to all parts of the UK to see people.
[Ed]: How is the job going?
[Rhian]: It has been tricky at first, mostly because the last nurse left some time before I started, but the patients and families have been incredibly supportive and encouraging.
[Ed]: You are based at Great Ormond Street , but work for the CGD Research Trust. How does that work?
[Rhian]: I need somewhere I have peers to discuss ideas and queries with, and a base of medics to back up my work. Great Ormond Street is an obvious choice as it has links with patients across the country and indeed the world. Working in a hospital also keeps me in touch with ward work, which I still do for two days every four weeks.
[Ed]: What do you provide to people with CGD and their families?
[Rhian]: I hope I am able to be a listening ear when they need someone who understands the difficulties they face, but also a person with ideas and suggestions.
I learn as much from the patients and families as they do from me because they understand living with the issues day to day, and because I speak to so many CGD families, I can pass on useful information.
I can be there to back them up or support them in a local hospital and offer information to local teams. I am someone they can talk over issues about local services with, and use my insight to get the best out of what there is to offer. I am also able to offer local services advice when setting up unusual treatments.
I try to keep abreast of innovative treatments to keep people up to date with developments.
[Ed]: What lies outside the scope of what you do, and are you able to guide people in the right direction?
[Rhian]: One thing I am often asked about are state benefits but this is a specialist area and not one I can really advise on. Rosemarie Rymer at the Trust is better placed to point you in the direction of those who can advise. [and look out for new content on this site - Ed]
[Ed]: Why would you say CGD requires a specialist like yourself?
[Rhian]: The CGD patients are spread across the UK and may have no one else in their local area with the same or even a similar disorder. My role gives local teams an easy person to access for questions, information and support. The freedom I have through funding from the CGDRT means that I have the time to see patients face to face when they need me.
[Ed]: How do you spread your specialist knowledge and experience among the nurses and doctors who are not familiar with the condition?
[Rhian]: I encourage them to look here, at this great new website, and I can send out information via post with specifics on the patient and their treatment. I follow this up with phone calls and offer to visit if they would like me to. If a patient is taken to hospital unplanned then I usually speak to the staff on the ward and then fax over useful information to them. I always make it clear that I am available for even the smallest of queries and will work to get them answers.
My aim is to empower staff to care for the CGD patient well in a local setting.
[Ed]: What are the biggest challenges of the job?
[Rhian]: Getting it across that I value the input and experience of the local care team, and that I am there as a resource or sometimes to learn from them, rather than a bossy busybody!
[Ed]: What are the biggest pleasures of the job?
[Rhian]: Seeing families who are putting getting on with living first, and working health care around them to support that.
[Ed]: Tell us a bit about yourself outside of being a CGD nurse. What other interests do you have - and who do you find inspiring?
[Rhian]: I am married but don't have my own children yet, although I have lots of nieces and nephews who I love being with. I like to travel and experience different cultures when I can.
I am inspired by people who have strong convictions for the greater good, and who know what they do counts. And Wonder Woman, or maybe the Hulk because he is green?
[Ed]: If you try to guess the future, where do you see this community of people with CGD going?
[Rhian]: I imagine a community better linked together over distance by technology. Also a changing community, as treatments for infections and even cures become more and more effective.
[Ed]: A sense of humour helps many of us through the day. Has anything made you laugh recently in this job?
[Rhian]: A parent recently thought the Clown Doctors at the hospital were real doctors just doing clowning on the side. I just couldn't imagine how we would look if a serious situation suddenly occurred and we needed their help!
[Ed]: Is there anything we can do to help you serve us as a community?
[Rhian]: Don't be afraid to get in touch to talk, and try to get your local team to send me copies of correspondence.
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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