We have two CGD clinical nurse specialists who look after affected children, affected adults and their families. Our nurses describe how they can help you and how you can contact them:-
Helen Braggins, Paediatric CGD Nurse
How the service works
I will be the point of contact and support for the CGD children and young people.
When are you available?
Monday to Friday 9am to 5 pm.
How can you be contacted?
By telephoning the office on +44 (0) 20 7405 9200 ext. 5024
Fax + 44 ()) 20 7813 8552
Mobile: +44 (0) 7775 794 511
Email: BraggH@gosh.nhs.uk
Postal Address
Helen Braggins, CNS CGD, Dept. of Immunology, Westlink Corridor, Great Ormond Street Hospital for Children NHS Trust, London WC1N 3JH
What happens when you are not available?
Out of normal office hours any medical needs should be accessed locally. An 'on call' registrar is contactable via switchboard for further advice once local medical advice has been sought. The Great Ormond Street Switchboard number is: 0207 405 9200
Please contact me to inform me of any concerns, admissions or treatment changes that occur outside of hours. This information is key in ensuring all care needs are met.
Where are you based?
I'm based at Great Ormond Street Hospital, which is in central London. Many of you may have attended clinics here. I am close to the major rail networks so visiting is not a problem.
What are the aims of the post?
To provide a pro-active responsive service to support all children, young people and families with a diagnosis of CGD. The aim of the service is to meet their needs and provide effective, evidence based nursing support and advice. I want to ensure that their voices are heard. This will be achieved by working with the CGD community.
Marie-Bridget Kirwan, adult CGD nurse, describes below how you can reach her and how she can help:-
Marie-Bridget Kirwan, adult CGD nurse.
How the service works
I will be the point of contact and support for the CGD adults, partners and families.
When are you available?
3 days per week, Mondays, Tuesdays and Fridays between 9am to 5pm.
How can you be contacted?
By telephoning 0161 291 5912
If you are ill please seek advice immediately.
Non-emergency messages can be left on the answering machine and it is important to leave your name and contact details with your message.
Alternatively, you phone or fax the charity on 01725 517 977
I can also be contacted by post
This might be needed for copies of correspondence from local health teams.
My postal address is: -
Marie B Kirwan,
Adult CGD Nurse,
Education and Research Centre,
Wythenshawe Hospital,
University Hospital of South Manchester NHS Foundation Trust,
Southmoor Road,
Manchester M23 9LT.
What happens when you are not available?
Out of normal office hours any medical treatment should be accessed ‘locally’, near where you live or at the hospital where you attend. Phone the hospital switchboard and asking for the immunology Registrar on call.
CGD adults, partners, families and other health professionals are all encouraged to inform the adult CGD nurse of any hospital admissions, new or recurrent infections or any other treatment changes. Even if it is only a “listening ear” that you need, please contact me.
Where are you based?
I’m based at Wythenshawe Hospital in South Manchester. Wythenshawe is very close to Manchester Airport and therefore has excellent travel links to the rest of the country. This makes it easy for me to visit the CGD community wherever they are based.
What are the aims of the post?
The fundamental aim of the service is to meet and greet all CGD adults, partners and families nationally and to offer a nursing support and advice service built on experience and knowledge through contact with comparatively large numbers of CGD patients. It is an important part of the service to listen and hear any concerns that individuals may have or indeed ideas that they feel may help the service develop.
Will you travel to meet people?
Yes. Through the support of the CGD Research Trust it is possible for the adult CGD nurse to travel to meet all CGD adults, on a national level. Importantly this offers the chance to meet local health care teams and establish and develop good communications links. An important aspect of the nursing service is focussed on the adult nurse travelling to meet CGD adults instead of the other way round.
Will you be at adult clinics?
Yes. A very important aspect of the service is the ability to meet with CGD adults at their local appointments with their Consultant Immunologists. Please let me know when your next appointment is planned and I can arrange to meet you at your Immunology clinic. I will be attending all the adult CGD clinics that are now being held at the Royal Free Hospital in Hampstead, north London.
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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