Rhian-Keturah Lant, paediatric CGD specialist nurse and Marie-Bridget Kirwan, adult CGD nurse, describe how you can reach them and how they can help:-
Rhian-Keturah Lant, paediatric CGD specialist nurse
How the service works
I am the point of contact regarding patient care for children and families attending Great Ormond Street Hospital. I am also a resource and support for any family or healthcare professional dealing with CGD anywhere in the UK.
When are you available?
9am-5pm, 4 days a week between Monday and Friday.
How can you be contacted?
By telephoning: 020 7405 9200 ext 5024 during office hours. Outside of office hours non-emergency messages can be left and I will pick them up when I am back in.
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: -
Rhian Lant, Level 3 West link Corridor, Great Ormond Street Hospital, Great Ormond Street, London, WC1N 3JH.
What happens when you are not available?
Outside of normal office hours you can contact the immunology registrar on call via the switchboard at your specialist Immunology centre. This could be Great Ormond Street or Newcastle for example. If you call during the day and I am not in, you could speak to one of the other members of the Immunology nursing team, or my secretary can put you thorough to an Immunology Registrar. If I am out on a visit I will call the office to pick up the message from you and call you back as soon as I can.
Where are you based?
Great Ormond Street Hospital in London.
What are the aims of the post?
To provide consistency of information to patients and families affected by CGD, and share information and experience gathered from being able to be in touch with so many CGD patients. The service aims to respond to worries and issues that arise within the CGD community.
Will you travel to meet people?
Yes, I am happy to travel anywhere to meet people - CGD patients, families or health care professionals.
What clinics do you attend?
I attend the paediatric clinic at Great Ormond Street Hospital, and the adult clinic at the Royal Free Hospital when patients are being transitioned to adult care. I am happy to come to a local appointment you have if you invite me.
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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