We are delighted to have been invited to co-host the 2015 HAE-UK Patient Day in Birmingham. This annual event is is an opportunity to meet up with many friends who know what it is like to live with this rare condition and to learn from a panel of HAE Experts.
The theme for this year’s day is ‘HAE through all the changing stages of Life’. If you would like more information or to register for the event, see the HAE UK website. We look forward to seeing many of our patients there.
This is a common question from patients, and it is a difficult one for doctors to answer. The West Midlands Primary Immunodeficiency Network has organised a meeting for patients and GPs to try to find some of these answers.
Date: 11/09/2014, time: 18:00-21:00
Venue: IET Austin Court, 80 Cambridge Street, Birmingham, B1 2NP (near NEC)
If you would like to attend, contact Miss Toni Wheatley 0121 5075157, toni.wheatley@nhs.net
A guide to easy tests for Immunodeficiency can be found by clicking here.
PID UK has put together a detailed report of of our recent Immunology Patient Day. This can downloaded directly from their website here. Many thanks to all of the organisers, participants and patients who made it such a great success.
On a warm Sunday afternoon, 120 Immunology patients and their families came to the West Midlands Patient Day held at the Crowne Plaza NEC hotel in Birmingham. PID and HAE patients from all over the region joined in small group discussions and listened to talks.
Medical and scientific staff updated the audience on the changes in Immunology treatments and services, travelling and living with immunodeficiency and Immunology research in Birmingham. A highlight of the day was a talk from a patient, Tom Peel, who described how he was able to spend 6 weeks in the Borneo jungle despite suffering from immunodeficiency. The clear message was “don’t let your condition stop you doing what you want to do”.
Representatives from national patient support groups PID-UK and HAE-UK were also on hand to help advise and inform the attendees.
The meeting also launched the new West Midlands Immunology Group, a local support group for patients attending Immunology departments throughout the region. Their website www.wmig.co.uk and email contact info@wmig.co.uk will hopefully form the basis of a growing mutual support network.
A full report of the meeting will be posted on this site soon.
Heartlands patient talks about her journey to diagnosis, treatment and life after being informed you have an Immune deficiency.
http://www.dailymail.co.uk/health/article-2343398/Catch-bug-going-A-fresh-blood-answer.html
PID UK is a new organisation created
in July 2013 to support individuals
and families in the UK with
primary immunodeficiencies.
Find out more about how you
can get involved.
Email: hello@piduk.org Website: www.piduk.org
Jeans for Genes Day provides funding and support for the care of people with genetic disorders, including primary immunodeficiency and other immune system disorders. You can find out more here: http://www.jeansforgenesday.org
The Immunodeficiency Centre has become one of only 5 accredited Immunodeficiency Centres in the UK. This accolade recognises the high standard of services provided for children and adults.
The Centre was inspected in March 2013 by a team from the UK Primary Immunodeficiency Network (UKPIN). They met with and interviewed staff from Immunology and other teams around the hospital, hospital managers, and some of our patients. A large number of patients also responded to a questionnaire sent out by UKPIN to see how they rated the service.
Dr Phil Wood, the chair of inspection team, said “It was clear to the assessors that there is excellent team working within the Immunodeficiency service with a well-developed multi-disciplinary approach to patient care.”
You can find out more about the UKPIN accreditation scheme at www.ukpin.org.uk
The next immunology patient for both adults and children (with parents) will be held at the Crown Plaza NEC, Birmingham
As in previous years this will include some lectures as well as breakout question and answer sessions. Refreshments including lunch will be provided. Also as before the highly successful creche will be available staffed by qualified paediatric nurses.
If you have any ideas or suggestions what you would like to see or be covered please contact us via the immunology email address:
