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Emergency Letter UCLH

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ABOUT US

Medical Lead – Professor Peter Hindmarsh

Patient Lead – Kathy Geertsma


Fundraising team:
Kathy Geertsma
Jenny Owen
Natasha and Graham Bennett

IT Support:
Paul C

Nutritional Advisor:
Jacqui Mayes

Teenage Contact:
Georgie

Leaflets

Our leaflets give practical advice such as what to do in times of illness, how to adjust medication when travelling across time zones and dealing with emergencies when travelling or at home.

We also offer many informative leaflets such as The Value of 24 hour Profiles, Hydrocortisone and how it works, Fludrocortisone and Plasma Renin Activity, Bone Density, Growth and Bone Age as well as Puberty in CAH.

Improving Services

We undertake patient surveys which help inform areas that need to be addressed with Health Services:

Emergency services

We have been actively engaged with emergency services and general practitioners to improve prescriptions, ambulance call outs and administration of emergency Hydrocortisone.

Medic Alerts

We stress the importance of wearing a Medic-Alert at all times.

Annual review

We believe that every child should be offered an Annual Review which will include a full 24 hour profile, bone age, ultrasound of ovaries or testes, check on emergency kit and updating of nursery/school information packs.

Emergency Kit

A must have. This is outlined in our leaflets with components of the kit for you to pass on to your endocrine team.

 

Please note that any data/ information contained on this website cannot be copied or used in any way without the prior permission of the owner / author Professor Peter Hindmarsh