Newsletter November 2017

Support Meetings at NAC

Our next meeting will run our Christmas Quiz, a very informal hour spent in the company of fellow patients & carers and members of staff from the National Aspergillosis Centre (who can answer any questions you may have). Our aim is to take a break from our regular meeting format so that everyone will feel welcome and if you wish take a short, fun quiz intended to allow anyone to win. The winners take home our David MacIntyre Trophy which now has a long and distinguished history of quizzers as winners since 2012. We provide free sandwiches & hot drinks.

Our meeting in November was attended by 10 patients & carers and up to 21 more people listening in and watching online. We saw a series of talks including news from the recent ‘Fungal event’ during October halfterm at the Museum of Science & Industry seen by hundreds of people in one day. Graham Atherton then showed us a map of the world showing all of the people with aspergillosis in dozens of countries. You can add yourself too https://www.diseasemaps.org/aspergillosis

Beth Bradshaw showed us her new idea to take suggestions from patients & carers to fill her ‘Pracical tips for Aspergillosis Patients & Carers’ that will be available for everyone to see on our patients website www.nacpatients.org.uk.

Rachel Orritt has designed a simple ‘infographic’ that explains what the different forms of aspergillus are, intended for use by patients and for patients to give their doctors too!

In all of these cases we ask for your opinions on what the finished products should be – these are two way meetings were you tell us what you want.

Chris Harris introduced our nursing staff, putting faces to names as requested in our previous meeting.

NAC research lead Paul Bowyer then gave us an update on a huge project that his group applied for last year and nearly 40 patients wrote letters supporting the application. As a result of your letters we were given the grant (£900 000) and will now use it to generate a complete collection (10 000) of strains of Aspergillus fumigatus, each with a different gene removed. Once we have these they will make an incredibly powerful tool to study A. fumigatus and discover how it infects our patients. The strains will be available to any group in the world in order to accelerate the process of understanding and help our patients with as little delay as possible.

Watch recordings of this and other meeting on your smartphone or PC at http://www.nacpatients.org.uk/monthly_meetings  

We also run live broadcasts of our monthly patient meetings on our Facebook pages https://www.facebook.com/groups/aspergillussupport/ on the day at 1:30pm. You will be able to chat via text as well as watch the speakers.

NOTE: To stay in touch of any changes to the meeting at short notice we have a mobile phone text-based update system that can provide instant updates and reminders. If you wish to be added to the list we contact send your mobile number to admin@aspergillus.org.uk, or text 07796 908395 .

Weekly SKYPE meeting 

We are launching a new series of online meetings for patients & carers that will exclusively take place using SKYPE. Lasting for one hour each will be at 11am GMT on every Thursday. Everyone is welcome - all you will need is a computer or phone and click on this link https://join.skype.com/m0B3kQbBEpjM  

 

New articles on the NAC Patients website

Information Leaflets

We provide copies of all our leaflets in clinic and in patients meetings, so if you want to look at them ask a member of staff at clinic or come to our next meeting. Online viewers can see them on our website.

 

Fundraising & Awareness for FIT www.fit.care

Go to FIT.care to see details of all of our magnificence fundraising eventers. Over the summer Ruth Ryder, Willie Windle, Jahn Masson, Kirsty Fawbert and the Z to Z cycle team run by Darren McNeil raised over £10 000 for the Fungal Infection Trust

There is also a small team of fundraisers making greeting cards, ribbons and now keyrings. These are available in clinic at the WRVS tea bar and cards & ribbons are from Jill at jill_fairweather23@yahoo.com Guide price £1 each. NB Jill donates all cards to us so all of your £1 will go to the Fungal Infection Trust..

Our keyrings have been donated in memory of Robert Bedford and quite apart from being attractive and colourful they also perform the useful - in some cases vital task of providing a reminder of the contact details of the National Aspergillosis Centre (NAC). If a patient were to be admitted to A&E in an emergency it is clear that the carrier of one of these keyrings is under specialist care and the medical team will be abe to contact our doctors if they need more information while treating the patient. Our Robert Bedford Keyrings are available during friday clinic at NAC and at patient meetings. We ask for a donation to FIT of £2.

 

Buy items on ebay in aid of FIT 

eBay sales in aid of FIT - all proceeds will go to Fungal Infection Trust. 

 

​Next month

​On October 6th the group will listen to a talk from Graham Atherton on recent advances in research and our new members of Patient Communication & Involvement staff Rachel Orritt and Beth Bradshaw will introduce themselves

Check out your own drug interactions.

There is a smartphone APP (Android or iPhone search for ‘Antifungal Interactions’) and you can check this online at www.antifungalinteractions.org. If you cannot access a computer let us know and bring your list of medications with you to your next clinic visit. 

You might also find it interesting to try this website http://www.genderedreactions.com/  as it sorts common drug interactions and side effects of medications as reported by gender. Just enter a brand or generic name.

 

Car parking

On days when we have a meeting, you will be able to get a £3 ticket from myself to allow you to park as long as you like.

 

Parking for blue badge holders is free. Blue badge holders can park in any car park and when exiting should press the button to speak to security at the barrier. Most barriers now have a camera and you will be able to show your badge to security using it.

Parking for blue badge holders can be found in the following car parks:

  • Main Entrance
  • Main Outpatients
  • Heart Transplant
  • Laureate House
  • Maternity
  • Nightingale Centre
  • Paediatric Outpatients Department
  • New Cardio

 

National Aspergillosis Centre Annual Report

Learn more about what we have done over the last 12 months by reading this document.

 

Damp & Health

Living in a damp home? Read our website pages.

 

Online Communities

Reaching new people is of fundamental importance to our need to reach people who may be living with aspergillosis and not be supported or occasionally even diagnosed correctly.
 
Facebook is one way to contact those people - Facebook Support group, Private support group, lots of regional & country groups you will find if you type in 'aspergillosis'. 'aspergillus' or 'ABPA' once you are logged in toe Facebook. 
Watch and listen to our support meetings at NAC live and ask the speaker questions via our text chat facility, or watch recordings – all while you are at home anywhere in the world http://www.nacpatients.org.uk/monthly_meetings
 

Local Support Meetings

Local Support Groups (Phone 0161 291 5866 for more information)

East Anglia Support Group: Contact Tina Schwartz sandts30@gmail.com

South Wales Support Group: Contact Valerie Davies at https://www.facebook.com/groups/ALSGSouthWales

Scotland: Francis Gallagher fcag2001@gmail.com Contact Francis for more information.

West Yorkshire Support Group : If you are interested in helping form this group please contact Lin Holding-Denton at admin@aspergillus.org.uk

Liverpool Support Group:  Meet at "WEATHERSPOONS", Childwall Fiveways Hotel, Queens Drive, Liverpool, L15 6XS. Contact Brenda Winslade sarah.mua@outlook.com

London Support Group: Meet at Google UK, London, United. Contact Bart Govaert  bart.govaert@btinternet.com

West Midlands Support Group: Meet at  Dudley Golf Club, Turners Hill, Rowley Regis. Contact Jean Jones jjbirkdale@gmail.com

East Midlands Support Group: Meet at  Wetherspoons in Rushden, Northamptonshire, on the first Tuesday of the month at 10.30am. Contact Kate Montali kate.montali@yahoo.co.uk

Bristol Support Group: Contact Ann & Keith James  ann.and.keith@btinternet.com

Volunteers are needed to help set up more Local Support Meetings for people wherever they live in the UK (and beyond) email admin@aspergillus.org.uk, or leave a message on 0161 291 5866.