CGD RT welcomes our CGD adult nurse Marie Kirwan!
Marie is based at Wythenshawe Hospital in Manchester and will be providing a nursing support and advice service for adults affected by CGD. She will be travelling to meet all CGD adults, will attend adult clinics and help provide important communication links between local health teams. To find out more about the details of the service, please click on Care, Details of nursing services and read the interview below about Marie and her work for the CGD Research Trust.
Please tell us what attracted you to work as the CGD Research Trust's adult specialist nurse, and what you did previously?
I was attracted to the role of the adult CGD nurse because there are specific needs and risks to CGD adults that link with my previous nursing roles, knowledge and experience of caring for patients with Advanced Lung Disease, Cystic Fibrosis, and Heart & Lung Transplantation. I have been very fortunate to be able to care for patients in different specialist settings but the most important aspect of all my nursing roles has always been the needs of the patient. It’s also a wonderful opportunity to work with patients who are so well supported through a charity like the CGD Research Trust.
How is the job going?
Great! I’m slowly but surely getting to meet everyone. The priority, at present, is on focused training alongside Rhian Lant at Great Ormond Street Hospital and building local network links with other specialist nurses and doctors who have an interest in CGD. I attended my first Adult CGD clinic on the 8th January at the Royal Free Hospital Hampstead NHS Trust, in London. This was the first adult clinic to be based at the Royal Free with the Clinical Immunology Team including the consultant Dr Ronnie Chee and the Clinical Nurse Specialist Andrew Symes. We were able to introduce ourselves to the patients and their families and explain the aims for the Adult CGD service.
You are based at Wythenshawe Hospital, but work for the CGD Research Trust. How does that work?
I’m based at Wythenshawe Hospital with Professor David Denning who is an expert in Aspergillus infections and has a long association with the CGD Research Trust. This means I care for people who have Aspergillus infection which links to the CGD community as Aspergillus infections can be a serious problem in CGD. Therefore, my role involves keeping up to date with new treatments and developments in the field of Aspergillosis so that I can maintain up to date knowledge and feed this back to other health professionals and patients alike. A useful link is the Aspergillus website at www.aspergillus.co.uk which has a dedicated patient information page. The link between the CGD Research Trust and the Aspergillus website means there is an effective route where up to date advice on antifungals can be obtained.
What does the adult service provide for adults with CGD and their families?
Someone to talk to, support, give back up, give advice and information on the condition, are some of my major aims. I can make sure that local services understand the condition and help co-ordinate care. As I have the benefit of talking to lots of people with CGD I can provide an experienced opinion.
Are there specific problems that are important to adults with CGD?
As CGD is a rare, inherited disorder of the immune system it’s important to provide relevant advice and information to CGD adults so that they are enabled to make informed life style choices. These choices can help individuals lead as healthy a life as possible whilst still being aware of issues such as preventing infection, infection treatments, complications of inflammation and how best to monitor their symptoms. It may be a long-time since an individual was diagnosed and they may want updating on all aspects of CGD or advice and support on reproductive choices.
How do you see the service developing?
I hope to develop a database of the medical and nursing contacts related to adults with CGD to help improve lines of communication with clinicians. I would like to offer the chance of having one-on-one discussions with adults, wherever they may live, concerning their condition and their life choices. I think it a really important part of the service to spread knowledge and experience among the nurses and doctors who are not familiar with the condition and asking them to visit the CGD website as an excellent source of information. I also hope to work with our newly appointed psychologist, Dr Nigel North on aspects relating to the emotional wellbeing of adults affected by CGD. Contact the charity for details on the service.
What lies outside the scope of what you do, and are you able to guide people in the right direction?
State benefits are something I am often asked but this is a specialist area in itself and not one I can really advise on. However, Rosemarie Rymer at the Trust is better placed to point individuals in the right direction.
Why would you say CGD requires a specialist like yourself?
I think CGD adults require a specialist who can focus on the specific needs and requirements of the adult community. Rhian will be able to focus her energies on the specific needs of the CGD children and families but we will continue to work closely together.
What do you think will be the biggest challenges of the job?
Gaining the trust of the ‘wider’ CGD community, including patients, the public and healthcare professions.
What do you find inspiring and what aspects of your nursing role do you like?
I think patients, families and carers and other health professionals are the most inspiring when they share the common goal of striving to improve the lives of those affected by a particular disorder, this is particularly true of the work with CGD. I have always enjoyed teaching patients, their families and carers, health professionals and the public regarding health but I’m always conscious of how much I can learn from the patients. It is a two way learning process where we as health professionals often have a lot to learn from those who live day to day with conditions like CGD.
If you try to guess the future, where do you see care for this community going?
I see more patient specific integrated care systems being put in place, better communication between all health care professionals. I think it important that adults become better informed about their condition. As new medical and scientific developments come on stream, such as gene therapy and advances in prenatal genetic diagnosis there will be a real need to keep the community as up to date as possible so that they can make informed choices. I hope to be a valuable part of getting the information out to those that need it.
Is there anything we can do to help you serve us as a community?
Don't be afraid to get in touch to talk! Please also try to get your local team to liaise with me and ask them to send me copies of correspondence so that this enables me to smooth the way for follow-up care.
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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