Newsletter June 2017

Support Meetings at NAC

Many people in our clinics participate in our research by donating blood or other tissue and occasionally a little time. It might interest you to know that we are currently running dozens of research projects which are intended to improve diagnosis, improve treatment (we are starting to test a few new antifungal drugs), discover why some people are vulnerable to aspergillosis and discover more about the impact that living in a damp home has on our health. A very wide range of activities!

There are so many projects in operation that we have to employ a Clinical Trials Mmanager to keep up with them all. Azad Aziz is a researcher who now makes sure all of our research runs as quickly as possible and more importantly that they are safe for all of the patients involved and meet all ethical requirements.

Part of the ethics process that all research projects must complete before they can run is to ask for the opinions of patients & carers. Patients & carers are often in the best position to say if research project is going about things in a way that patients find useful – or sometimes if they are not. This is not surprising as patients & carers are the people who have to live with aspergillosis and thus they are the experts at saying if a proposed change or activity in those circumstances is feasible, practical or desirable. Occasionally the best suggestions for research come from patients themselves!

This month Azad talked to us about some of the projects he looks after and how he works to coordinate them all – for example every project has to be funded and there are many different funders who work in different ways. There are lots of formal records that need to be kept up to date for each project and an awful lot of work and legislation that has to be cleared before a project can even start – passing ethics alone can take months.

Perhaps most importantly Azad made it clear that in order to carry on our research we need your help. Patients & carers can contribute in a number of ways and we are also finding ways for people who live far away from this Centre to participate via Skype.

If you are interested in helping please contact Graham Atherton at graham.atherton@manchester.ac.uk and I will forward your message to Azad.

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

FACEBOOK LIVE has emerged as the latest innovation from Facebook and as we have over 1200 people registered and using our Facebook groups (see below for information on the groups)We trialled a live session last month which was well attended whereas Skype seems less attractive. Consequently I will only run a Facebook session this month (NOTE this will be a week later than usual on 9th June). Watch out for announcements on Facebook.

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 the first will be at 11am GMT on every Thursday. Everyone is welcome - all you will need is a computer or phone - see here for details 

New articles on the NAC Patients website

 

 

There was a request that we provide copies of all our leaflets in future meetings, so if you want to look at them ask a member of staff at clinic or come to our next meeting - though online viewers can see them on our website.

View the talks here (http://www.nacpatients.org.uk/monthly_meetings ).


Fundraising & Awareness for FIT www.fit.care

There have been 151 donations to the Fungal Infection Trust over the last 12 months with over £5000 donated thanks to our fantastic supporters. 


 

Agnes KayThere is a small team of fundraisers making greeting cards, ribbons and now Keyrings.

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.

Agnes Kay successfully raised £600 running a half marathon in aid of the Fungal Infection Trust.

Run4Fun(gus) have also arranged eBay sales in aid of FIT - all proceeds will go to Fungal Infection Trust. If you have any items you could sell on eBay to raise funds then go to our charity profile on eBay to find out more.

Help support our fundraisers every step of the way – buy a ribbon, text ASPE14 £5 to 70070 or go to www.fit.care

Fungal Infection Trust ribbons are available at the WRVS tea bar in the National Aspergillosis Clinic all week. If you miss them when you visit more can be ordered 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.

Next month

On July 7th the group will listen to a talk from —Parul Chandorkar on her work with recreating lung airways tissue in the laboratory! Parul is with us as a visitor from one of the most productive fungal research labs in Europe and has some amazing pictures & movies showing recreated lung tissue in action.

Check 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.

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

View at home

View past talks here http://www.slideshare.net/GTAtherton/ or for a more recent talk go here (http://www.nacpatients.org.uk/monthly_meetings ).

Many more stories here

Diary (blog)

Keeping a diary is known to be very therapeutic and has several claimed health benefits. Consequently we would like to encourage you to keep a diary and have provided a system on this website to allow you to do that, automatically keeping all your thoughts in one place. Diaries are also known as 'blogs' on the World Wide Web - to access your blog-space you need to set up your own account (you can use your Facebook Account to do this). Also see this

Community booklet - for people who do not have a computer

This booklet is to be largely produced by patients & carers with help from NAC (National Aspergillosis Centre) and the hope is that the patients community will use this facility to improve their social support networks as and when it is needed. We are going to need help from more patients with content – so if you have a point about how aspergillosis effects your life and that of your family (patient or carer), or you have a need/suggestion for information or support let us know and we can discuss what we can do about it (patients or the NAC team) at our next support meeting. Send suggestions to us at admin@aspergillus.org.uk or phone 0161 291 5866.

Check your own drug interactions​

Patients & carers who are taking antifungal medication can now check their own list of medication for adverse effects (side effects)  that are caused in combination with antifungal drugs. There is a smartphone APP (Android or iPhone search for ‘Antifungal Interactions’) and you can also check this online at http://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.

National Aspergillosis Centre Annual Report

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

Side effects

Apart from our drug interaction checker you might find it interesting to try this http://www.genderedreactions.com/

It sorts common drug interactions and side effects of medications as reported by gender. Just enter a brand or generic name.

Damp & Health

Living in a damp home? Read our new 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. Amongst lots of social chat recent discussions in this group centre around recent research into allergies and precautions to take when living in a heatwave.
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.