GAtherton

Patients & Carers meeting February 2016

Unfortunately we had to cancel this meeting due to room booking problems, but Graham Atherton gives a shortened version of the talk here.

Resources mentioned:

7th Advances Against Aspergillosis, Manchester

Stewart Armstrong's video

by GAtherton

Patients & Carers meeting December 2015

Resources mentioned:

Aspergillosis community group poem, written by Chris Harris

by GAtherton

Patients & Carers meeting November 2015

We had to switch off the discussion with patients after Chris & Graham's introduction ending at 36min 40sec as the group had to proceed privately. The slides discussed give a good deal of the information we talked about so are well worth reading once the talking has stopped.

Resources mentioned:

Scottish Medicines Consortium

Isavuconazole (Basilea)

Isavuconazole (Wikipedia)

by GAtherton

Patients & Carers meeting October 2015

Maria Gamalatsou is clinical fellow at the National Aspergillosis Centre and specialises in the treatment of aspergillosis.

Resources mentioned:

Graham Atherton:

European Respiratory Society Vision

Activity is good for your health: Dutch show cycling every week adds 6 months to your life

Aspergillus Community Booklet, Autumn 2015 edition

NOTE: increasing your activity levels is best done in consultation with your medical team and under their supervision. You physio's might give you a personalised regime or they might suggest using one of the British Lung Foundations 'Breathe Easy' groups, some of which offer group exercise sessions

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Patients & Carers meeting September 2015

Phil Langridge (Physio Phil) is our lead physiotherapist at the National Aspergillosis Centre and specialises in the treatment of aspergillosis.

Resources mentioned:

Aspergillus Community Booklet, Summer 2015 edition

Phil Langridge

PEP devices

• http://www.abcm.org.br/anais/cobem/2003/html/pdf/COB03-0535.pdf
• Cornet: http://www.curaplex.com/docs/rc_cornet/RC-Cornet-by-Curaplex-Overview-Brochure.pdf
• Quake: http://europepmc.org/abstract/med/22418284, http://thayermedical.com/wp-content/uploads/2015/05/Quake-IFU.pdf
• Aerosure:  http://www.aerosure-medic.com/how-aerosure-works/,  http://healthcareprofessional.aerosure-medic.com/aerosure-evidence-base/
• AerobiKA: http://www.aerobika-therapy.com/aerobika-pep-therapy/    http://www.aerobika-therapy.com/
• Lung flute: http://lungflute.co.uk/

Testimonial: http://www.rtmagazine.com/2007/02/positive-expiratory-pressure-therapy-the-key-to-effective-low-cost-removal-of-bronchial-secretions/#sthash.gr0tl2Wn.dpuf

The drug tariff (UK): •http://www.drugtariff.nhsbsa.nhs.uk/#/00215656-FA/FA00215206/Home

Graham Atherton

Airborne spores

http://www.maara.org/

http://www.worcester.ac.uk/discover/pollen-forecast.html

http://www.fungimanchester.orgPoetry at the National Aspergilloisis Centre

Fungal Infection Trust Appeals www.fit.care

Donate to Fungal Infection Trust by mobile phone (UK only) - to donate £5 send the message ASPE14 £5 via SMS text to 70070

by GAtherton

Patients & Carers meeting August 2015

Alan Savage  was asked to chat about his initiative to better promote the many social & creative activities that take place in our local communities. Alan is based in Manchester but he works for a Home Care company that have offices throughout the UK (and US), some of which also list activities in their local area. Most of the listed activities have been run for many years (e.g. social clubs, charities) but are not well publicised, many are of value to people looking for activities to fill their time (especially the retired, disabled or just lonely!) so Alan has constructed a listing. The company he runs suggest those who are unable to travel to these (largely free of charge) activities might make use of their services to help organise, transport and accompany. Home Instead are a high-end fee charging concern working hard to integrate their services with local community and local social & health services.

After the break Chris then collected a few more suggestions for a group poem and Graham discussed the content for the forthcoming Autumn Aspergillosis Booklet.

Resources mentioned:

Aspergillus Community Booklet, Summer 2015 edition

Home Instead WOW community information leaflets

Poetry at the National Aspergilloisis Centre

Fungal Infection Trust Appeals www.fit.care

Donate to Fungal Infection Trust by mobile phone (UK only) - to donate £5 send the message ASPE14 £5 via SMS text to 70070

by GAtherton

Patients & Carers meeting July 2015

Resources mentioned:

Skype

Poetry at the National Aspergilloisis Centre

Fungal Infection Trust Appeals www.fit.care

Donate to Fungal Infection Trust by mobile phone (UK only) - to donate £5 send the message ASPE14 £5 via SMS text to 70070

by GAtherton

Patients & Carers meeting June 2015

Graham Atherton chatted about the rise of a new concept in medical research - the study of the bacteria & fungi that live on us and in us and their effect on our health (Biomes/Microbiomes/Mycobiomes). Chris Harris (NAC Manager) went through how best to prepare for flights abroad, giving us plenty of notice for assessing you for travel and all the paperwork that needs to be completed before you can fly with your medication and oxygen cylinders. 

Resources mentioned:

Code of a Killer (BBC TV)

The lung mycobiome: an emerging field of the human respiratory microbiome

European Health Insurance Card (EHIC) Hints for US travellers who need to travel with oxygen cylinders  Suggestions for travel insurance:

• Asthma UK (lots more advice here and a wide range of insurers)
• MoneySupermarket
• Worldwideinsure.com

Fungal Infection Trust Appeals www.fit.care

Donate to Fungal Infection Trust by mobile phone (UK only) - to donate £5 send the message ASPE14 £5 via SMS text to 70070

by GAtherton

Patients & Carers meeting May 2015

Chris Kosmidis is one of the Consultants and the National Aspergillosis Centre and he agreed to talk to our community meeting, answering questions raised from the audience on the day and from our online groups who had been asked for questions prior to the meeting. A total of 15 subject were raised and answered in full by Chris during a very pleasant and informative meeting.

Resources mentioned in this meeting

Facebook Community Support Group

Yahoo Community Support Group

Spring Community Booklet

Fungal Infection Trust Appeals www.fit.care

Donate to Fungal Infection Trust by mobile phone (UK only) - to donate £5 send the message ASPE14 £5 via SMS text to 70070

by GAtherton

Patients & Carers meeting March 2015

This month we had to cancel our meeting as we had to attend a very important meeting along with some of our patients & carers with the UK commissioning group NCG. This group funds the National Aspergillosis Centre (NAC) and has a committment to listen to and involve our patients in many of our decision making processes in connection with the running of NAC.

National Commissioning Group (NCG) want to hear about our achievements for the year on an annual basis via a face to face meeting and this year it happened to be on the 6^th March.

Our disappointment was offset by the request to include the views of our patients & carers in our presentation to the commissioners – a real sign that your views are as important to the people that fund the service as anyone else’s view. Five patients & carers volunteered to represent your views at the meeting and raised several issues that may well not have been aired before, each drawing a considered response. Jean travelled from Birmingham and Julie from Bexhill-on-Sea spoke at length about how their lives had been changed by aspergilloma and the benefits they had gained from using NAC. They also reinforced opinion stated elsewhere that it is difficult for some to travel the distances needed to get to NAC. Another comment from Keith in Bristol provided an excellent example of how difficult some are finding it to get a referral to NAC. This triggered an in depth conversation and the Commissioner made several points;

1. We are to explore ways to provide a more locally accessible service for the South East though there are still major difficulties to resolve,

2. Some GP’s might not be aware that NAC services are free of charge to GP practices for those with chronic pulmonary aspergillosis (not ABPA) – increase awareness on that point,

3. A particular train company offers free transport to other national service centres so might be prepared to help our patients too – commissioner is looking into it for us.

None of these points would have been covered at the meeting without our patients input. This is a prime example of how your input helps us provide a better service so many thanks to Julia, Jean and Keith for their hard work on behalf of all of us.

by GAtherton