Newsletter February 2017

Support Meetings at NAC

The National Aspergillosis Centre, Mycology Reference Centre Manchester and University of Manchester run a Masters degree course.

Part of the work we do here at NAC is to train medics and technical staff from all over the world in the skills needed to identify a fungal infection. In conjunction with University of Manchester we run a Masters Degree in Medical Mycology and as part of that degree we invite the students to give short talks about themselves and their countries to the Patient & Carers group. This is a very enjoyable occasion as we learn a lot about other countries and their health services (& lack of specialisations) and the many different career journeys taken by the students – one a plant pathologist in the US, another raising a family in Kuwait, one from Shenzuen China and the last came second in an X-factor competition – all before they decided to study Medical Mycology in Manchester.

This year there are four students with seven nationalities (!) between them. Consequently there was a lot to talk about and that part of the meeting concluded with a song in Persian.

After the student’s visit Graham Atherton led a discussion on the new smartphone APP’s currently being trialled for use throughout the NHS. Babylon Health are developing a ‘artificial intelligence’ computer system that works via your smartphone (have a look at it by downloading ‘Babylon Health APP’). If you are feeling unwell or if you have a medical question this APP will tell you if you need an appointment with your GP or otherwise – it aims to cut waiting times by removing trival issues a bit like NHS Direct used to and will currently make you an appointment with a private GP if it thinks one is needed. It has already been given CQC approval (it is safe, reliable) and ultimately may well be offered to you by your own GP surgery.

We discussed how we might help modify this APP for aspergillosis patients and help identify people with aspergillosis much better than doctor do currently.

The subject moved on to our setting up a singing group. Singing has many benefits for people with respiratory illness, not least of which is encouraging better posture & better control of breathing. The Patient & Carers meeting next month (3rd March) will have a speaker on this subject.

We attempted to broadcast the meeting live through SKYPE for the first time this month after successful trials last month but unfortunately technical problems forced us off air. We will try again next month!

  • SKYPE is a phone or video conferencing facility that is available free of charge and enables free calls to SKYPE members (NB our ID 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).
  • This will entail the SKYPE group seeing and hearing the full meeting to be able to talk to each other but not to the main meeting until the breaks or during discussions. The SKYPE group cannot yet see slides but these were available on our usual USTREAM stream running in parallel.

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 .

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. 


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

February 3rd will be a meeting incorporating several of our Medical Mycology students, here in the UK to study with us so that they can set up medical mycology facilities in their countries when they return home. Students are encouraged to tell the group a little about themselves and the state of fungal diseases diagnosis and treatment in their country.

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.