This month we hear first hand from Helen Braggins who works at great Ormond Street  Hospital for Children and who is the Society Clinical Nurse Specialist for Chronic Granulomatous Disorder (CGD).

I was particularly interested in the research work that Helen is currently involved in. read on for details…

•  Helen, what is your role and where do you work?

I am employed by the CGD Society to provide nursing support to families affected by CGD.  I am based at Great Ormond Street Hospital in London and support the adult CGD service, based at the Royal Free Hospital in London. I have a national remit and can visit patients and their families at home,  school or in their local hospitals. I provide an email service to overseas patients and their families.

• Tell us about a typical day.

No two days are the same however I do have routine meetings and clinics that take place during the week. I need to present patients at ward round and also be able to present and discuss them at weekly x ray meetings. I accompany patients to their first BMT/gene therapy appointment. Day to day work involves supporting families at home with on-going care needs  making sure that these needs can be met by local teams. I spend much of my time responding to phone calls and emails making sure patients who are unwell have access to appropriate care.

• You recently won an excellence in Immunology nursing award through INGID. What does this mean to you?

I was so very humbled by this experience, we all work very hard to achieve the very best for our patients and the teams we work with so to be honoured by this award was quite over whelming especially as it came from my immunology colleagues. So huge thank you once again.

• What work are you currently undertaking?

I’m currently working on a presentation, I have been invited to a consultant meeting in Cornwall to share clinical experience of symptoms exhibited by carriers of X linked CGD.

• What research are you involved in? Tell us a little bit about that?

We are looking at carriers of X linked CGD and are measuring their neutrophil function overtime. We began  5 years ago and are about to retest the  group again. We are looking to see if function changes over time and whether this can explain symptoms in later life. It’s early days yet  but the sample size is adequate so we should have an answer. The only problem is, is that the ethics committee wanted the study to be over 50 years and as dedicated as I am,  I cannot work from beyond the grave so we will be looking for interested younger individuals to carry on the work.

• What aspect of being an INGID member do you value or enjoy most.

Being part of  a team who provide a bespoke service to a group of patients worldwide whom have rare conditions is very interesting and motivating, being part of INGID  enables us all to share and learn from each other plus everyone is really lovely.