Newsletter April 2017

Support Meetings at NAC

Our newest consultant Paschalis Vergidis, originally from Athens, Greece but via some of the most prestigious hospitals in the United States (including the Mayo clinic) introduced himself and to his latest research project here at NAC to our patients meeting on 7th April. Paschalis intends to instill one of our newest experimental antifungal drugs directly into the lung cavities caused by fungal balls (aspergilloma). A study in India suggests that this can be a successful way to treat symptoms like coughing up blood and as that can be something aspergillosis patients have to live with we want to explore new ways to reduce the bleeding.

We will start with a few patients who we believe we can treat safely and as the results come in we can reassess whether or not we want to carry on with this treatment. If you are asked if you want to participate be assured you will be in safe hands.

Our singers returned to try to assess if there is enough interest amongst patients & carers in using singing as a way to improve health and communication. We have decided that a ‘face-to-face’ group is going to be too difficult in the short term with aspergillosis patients alone so we will now also approach those with other respiratory conditions. There was significant interest from people who are unable to attend UHSM regularly for choir sessions and we are investigating how we can organise singing via Skype so people with computers, tablets and smartphones can join in – six did so at the patients meeting last week.

We would like to be able to offer everyone the opportunity to use singing as an enjoyable means to improve your breathing and have fun.  Contact Graham Atherton on 0161 291 5866 or [email protected] to register your interest and we will contact you with details.

Lastly Katie Holmes, a University of Manchester student brought her new video on the dangers damp and mould pose to us in our homes. It was excellent and you can also watch it if you go to the meeting website (see below for details).

We broadcasted the meeting live through SKYPE this month but the sound quality was still poor - we suspect a faulty cable and repairs are underway.

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) I think it is worth a trial run on Facebook Live! We will trial a Live session on our Aspergillosis Support Facebook group at the next meeting on Friday May 5th. Users will be able to see and hear us but not chat back to us in the meeting.

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 [email protected], 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 [email protected] 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 May 5th the group will listen to a talk from Susana Marinho, an NHS allergist on the subject of allergy to salicylate (aspirin) that some of our patients have.

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 [email protected] 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 [email protected] Contact Francis for more information.

Wigan Support Group:  If you are interested in this group please contact John Barker at [email protected]  ** 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 [email protected]

Liverpool Support Group:  Meet at "WEATHERSPOONS", Childwall Fiveways Hotel, Queens Drive, Liverpool, L15 6XS. Contact Brenda Winslade s[email protected]

London Support Group: Meet at Google UK, London, United. Contact Bart Govaert  [email protected]

West Midlands Support Group: Meet at  Dudley Golf Club, Turners Hill, Rowley Regis. Contact Jean Jones [email protected]

East Midlands Support Group: Meet at  Wetherspoons in Rushden, Northamptonshire, on the first Tuesday of the month at 10.30am. Contact Kate Montali [email protected]

Bristol Support Group: Contact Ann & Keith James  [email protected]

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