Newsletter December 2016

Support Meetings at NAC

December is always the month we hold our Christmas Quiz but this year we had a few more items of news to announce too.

The meeting started off with NAC research project manager Azad Aziz telling us about one of our new projects that needed a patient representative to advise and feedback on our research on behalf of all patients. This is now a requirement for most research as moves are made to make all research more directly relevant to patients and their needs, and to ensure that patients remain well informed about our research and its progress. It looks like this will be done on a project by project basis so more patient representatives will be needed in the future if anyone reading this is interested in participating.

Graham Atherton presenting the David MacIntyre Quiz Trophy to Malcolm, winner of the Christmas Quiz 2016The Quiz consisted of 30 questions; 10 puzzles, 15 questions based on information given in the 11 patient meetings that have taken place since the last quiz, and five questions with Christmas in mind. You can play along too if you watch the recording as we give all questions and answers - let us know your score! This year the questions were pretty tough and there was a three way tie for second place with 15 points but hats off to Malcolm who triumphed with 17 points ! - a very impressive score given the difficulty of many of the questions. Congratulations Malcolm.

Finally Graham gave the meeting two bits of good news relating to our centre and our funding for research.:

  • The National Institute for Health Research (NIHR) is the main body that controlls and supports government sponsored health related research. The NIHR has 20 specialist centres for clinical research throughout the UK that offer the hospitals and universities involved extensive financial support. Only the very best are granted Biomedical Research Centre status and none has ever been awarded to a group consisting of only Manchester hospitals and Universities. However this year (September 2016) the North West Lung Centre (NWLC) and University Hospital of South Manchester (UHSM) were part of a successful bid for £28.5 million of funding and NIHR Biomedical Research Centre status for several areas of health research. The NWLC (& National Aspergillosis Centre) are to be the respiratory research part of this centre with other centres (all in Manchester) concentrating on other areas of research. We received this accolade and funding becasue of the high level of translational research we carry out and thanks to the excellent involvement and interest from our patients in our research. Without you it could not have been done so many thanks from all of us to you. Our new status will provide long term funding for five years and will of course encourage an inflow of high quality people wishing to work with us and funding from other sources and organisations.
  • The Manchester Mycology Reference Centre and National Aspergillosis Centre have also been chosen to be the first European Confederation of Medical Mycology Centre of Excellence, enhancing our international status and reputation. Again this puts us in a good position to attract better funding and more staff.

At the end of the meeting we carried out an experimental trial for the use of SKYPE to hold group meetings involving people with aspergillosis from anywhere in the world in our support sytems. SKYPE is a phone or video conferencing facility that is available free of charge and enables free calls to SKYPE members (NB ours is drgraham.atherton) using a computer or smartphone OR allows you to phone us using an ordinary phone (currently only using a UK number 0161 818 8341) at normal local, national or international rates. If there is a demand we could site a number in other countries so that they can call in using their local rates - let us know if this is of interest (admin@aspergillus.org.uk).

On this occasion we successfully held a meeting after the main meeting  with people in the UK but there is nothing to stop anyone else calling in - we have an upper limit of 25 callers. We have proven that the software and connections work so we are now ready to move up to running the whole meeting through SKYPE. This will entail the SKYPE group seeing and hearing the full meeting and being able to talk to each other but not to the main meeting until the breaks or during discussions. The SKYPE group should be able to see slides but these will also be available on our usual USTREAM stream running in parallel for this month, until we can see it working.

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

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 .

 

New articles on the NAC Patients website

Several people have written their own articles for the website (you can do the same - just register, login and go to www.nacpatients.org.uk/blog to start writing, uploading pictures and more.

COPD - getting the best out of treatments, EU debate on biosimilar drugs and the Rise in the number of people with fungal disease are all new articles this month while we have also had a contribution from a patient entitled 

'WHO WANTS TO LIVE FOREVER? by Elizabeth Hutton'

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. 


There is a small team of fundraisers making greeting cards, ribbons and now Keyrings. Christmas cards are currently available to all clinic visitors on a Friday

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

January 6th (1pm for lunch) at the Altounyan Suite (see Community Booklet for a guide) is the location for our next patients meeting which will be on healthy diet from Dr Timothy Entwistle of the Transplant Centre here at UHSM..  

The main reason for the meeting is for everyone who attends to be able to meet up with others (including staff) on an informal basis for a chat about anything you might be concerned about. Everyone is welcome to attend – just turn up! You can ask for your appointment to be moved to the day of the meeting too.

This Month we hope to trial a new SKYPE meeting at the end of the main meeting. SKYPE to drgraham.atherton and leave us your contact details and we will Skype you when the meeting starts.

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.
 
There is also our oldest and largest private group at Yahoo! Aspergillosis Support. This group has more than 1050 members and chats in private about many topics that concern people with aspergillosis. The discussions tend to cover a broader range of topics compared with facebook and tend to go into more detail - for example a large discussion this month has been about the best way to take itraconazole.
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

Now we have a new website we can set up community groups for all of our support groups. These may well be better than the current Facebook groups as we have found many do not want to have a Facebook account. These may well work better to co-ordinate group activites

Please make use of these new groups by joining your most appropriate group at http://www.nacpatients.org.uk/groups

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

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

Wigan Support Group:  If you are interested in this group please contact John Barker at john@rivercottage.plus.com  ** Meeting arranged for second tuesday in every month**

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.