Newsletter August 2017

Support Meetings at NAC

Everyone who has an aspergillosis clearly has an interest in helping develop new treatments so it is no surprise that as a major centre for caring for people with aspergillosis NAC has a major interest in research. Our patients have been involved in our research work right from the beginning which has played a huge part in NAC becoming a major world centre for research into aspergillosis. Without the active collaboration of you we simply would not exist!

As we grow we are becoming involved in ever more research. Last year the Centre become a worldwide ECMM Centre of Excellence for Medical Mycology and was part of the consortium that was awarded a lot of money to become the Manchester Biomedical Research Centre. These developments and others now mean that we are starting to test new treatments and drugs and the man charged with managing those trials is Azad Aziz.

Azad come to this month's meeting to gve us all the details on the latest trial for a new type of drug designed to counter the symptoms caused by fungal infection in ABPA patients. This drug is specifically designed for infections caused by a fungal infection, which is a world first.

Our new funding means that not only do we need patients to participate in the trials by donating blood or other tissue, we are also required to involve patients & carers in all parts of the trial including looking at how it has been planned in order to give the patients point of view. This might be a practical issue such as unclear guidence notes or getting better consideration for a patients needs into the trial but could also include changing what we are looking for so we test something that will boost the quality of life of a patient or carer. The latter is particularly important as only patients & carers can tell us what is important to them. There are examples of patient involvement here. If you could get involved please let us know at admin@aspergillus.org.uk or azad.aziz@manchester.ac.uk 

Azad was followed by patient Neil who gave us lots of details of the process of fitting and using a PEG feeding tube. Neil was having difficulty maintaining his weight due to aspergillosis and the medication used to treat it so his doctors proposed having a feeding tube fitted by which he could pass food directly into his stomach via a small tube that is inserted through the tummy. Neil reported that it was a great success and had put on a stone in weight since having it fitted. If you are struggling with your weight it is well worth considering as losing weight is not a good way to fight off the fungus! 

Graham Atherton then went on to discuss the forthcoming Fungal Awareness week (14-18 August) and how the Fungal Infection Trust and NAC were responding.

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

Our latest FACEBOOK LIVE session at the July Patients Meeting failed badly due to events outside of our control. Facebook couldn't reliably run the video stream - this measn it isn't going to be much use for our sessions. We have found a replacement and will run another streamed session this month (4th August) that will run on our Facebook pages https://www.facebook.com/groups/aspergillussupport/ on the day at 1:30pm.

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

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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 donations worth over £8000 given by our fantastic supporters over the last 12 months. A BIG thankyou to everyone.

Over £2000 has been donated in memory of Roger Ryder over the last few weeks and he has been added to the Fungal Infection Trust 'Donate in Memory' page which we will keep as a permanent reminder. This is something we will offer to all of FIT donors, large or small, just send your memorial text & opinionally a picture to admin@aspergillus.org.uk and we will add it.

Willie Windle has again run his 'Soulchoons' event at the end of August - amount raised is pending.

Darren McNeil is about to begin his huge challenge of cycling across five countries in five days in aid of FIT. Donations still being accepted. Darren has already raised well over £1000.


 

There 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.

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 September 1st the group will listen to a talk from Matt Harris, a Pharmacist Technician here at NAC on how we use and store our antifungal drugs. That will be followed by a talk from Graham Atherton on the success of our awareness week.

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.