Aspergillosis Community

Booklet Summer 2016

National Aspergillosis Centre

Wythenshawe Hospital

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Quiz Winner Helen Barrett-Bee (right) being presented with the David MacIntyre Christmas Quiz Trophy by NAC manager Chris Harris in December 2015

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Welcome! This booklet is intended for all patients & carers at the National Aspergillosis Centre who do not have access or prefer not to use computers. For those who do use computers there is the Aspergillus Website www.nacpatients.org.uk.

This booklet is the idea of the Patients & Carers Support Group that meets every first Friday of the month in the Altounyan suite, which is just down the corridor from this clinic. Patients & Carers have suggested or provided most of the content. If you have suggestions for subjects we can mention or content we can provide there are contact details available elsewhere in this booklet, or come to our meeting sometime!

Please feel free to take this booklet home to keep handy and read at your leisure.

Contents are listed on the back page.

http://www.nacpatients.org.uk/

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Questions & Answers

If you have any questions or complaints about any aspect of our service here at the National Aspergillosis Centre please send them to us at NAC, Second Floor ERC, Wythenshawe Hospital, UHSM, Southmoor Road, Manchester M23 9LT or phone 0161 291 5811 or email admin@nationalaspergillosiscentre.org.uk

What to ask? You can ask about anything but here are some suggestions:

• You may be unsure about something mentioned in your recent clinic visit – we can refresh your memory privately.

• You may find something we do could be done better and might be able to suggest we do something differently.

• You might want more information about something – treatment, support, community meeting

The list is endless!

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What is Aspergillus? Aspergillus is a common fungus found throughout the world, spread by microscopic spores which float in the air. We all breathe them in most of the time but most of us have efficient immune systems that kill the spores. Some people do not manage to kill all of the spores; sometimes because they are undergoing treatment that suppresses their immune systems (e.g. transplant patients, bone marrow transplant recipients), but sometimes because they are genetically susceptible (e.g. some asthma sufferers) or possibly because they have breathed in many more spores than is usual. They develop aspergillus infections, known as aspergillosis

Allergic Bronchopulmonary Aspergillosis (ABPA) You have a fungal infection deep down in your lungs. This irritates the lung tissue and causes scarring. The infection is treated with antifungal medication and the inflammation and scarring is reduced using steroids

Chronic Pulmonary Aspergillosis (CPA). Your lungs have been damaged in some way in the past (e.g. tuberculosis) and the fungus can grow in the affected area. Sometimes it grows as a fungal ball (i.e. aspergilloma) in the cavity. Sometimes several cavities are involved (CCPA).

Invasive Aspergillosis. Almost exclusively effects very highly immune suppressed people e.g. Transplant patients, bone marrow transplant recipients. Must be treated very urgently which is why this group of patients are retained in hospital during the danger period of their treatment.

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Holiday Travel Some of us will be planning flights abroad this summer and we are already receiving phone calls asking for support from our medical staff for things like advice, medication, flying with oxygen, insurance. Here are a few of our suggestions:

1. Plan early and give us plenty of notice if you need a doctors letter – the day before is a bit of a rush and you may not make that flight and…

2. If you need a flight assessment there is a long waiting list

3. Many airlines have specific requirements if you wish to take your medication on board – contact them

4. Ensure you get good travel insurance – we can suggest a few companies

5. For basic emergency care ensure you have your EHIC card www.gov.uk/european-health-insurance-card or 0300 3301350

6. Ensure you have enough medication prior to leaving and contact us in good time if you need another prescription

7. If you use Healthcare at Home – make sure you have a delivery before you go so that you don’t run out of medication. Alternatively arrange for delivery when you return but don’t tell them you are away! Continued on next page…

http://www.gov.uk/european-health-insurance-card

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Travel tips continued… Ensure you have good sun protection in terms of

clothing, hats but particularly high factor suncream. Factor 50 is recommended if you are on voriconazole.

Take our contact numbers with you (0161 291 5811 and specialist nurse numbers) – hopefully you won’t need to contact us but if we can answer questions and put your mind at ease your holiday will so much more enjoyable.

Cross pack medication and a few vital items (some in your bags, some in a travel companion bags) – you just never know when they might be delayed after the flight.

BLF run a handy 24 hour helpline that includes advice on travelling with a lung condition 03000 030 555

Traveling with oxygen (and other useful points like drink plenty of water during the flight, walk around to reduce blood clotting) – see www.nacpatients.org.uk/content/travel

We discussed this in the Aspergillosis community meeting in June – see nacpatients.org.uk/monthly_meetings

Have a great time you deserve it

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Ask for a Leaflet We have leaflets available in Clinic or on-line on the following topics:

How can I reduce the risk of Aspergillus Infection? - What is it? How it is treated? How can it be prevented? Intended for people who are immune-compromised

A guide to Allergic Broncho-pulmonary Aspergillosis (ABPA) - Useful guidelines for sufferers of ABPA. How is it diagnosed? What is the best treatment?

A guide to Chest Physiotherapy - Intended for sufferers of aspergillus chest infections such as ABPA, aspergilloma where excess lung secretions (or mucus, sputum, phlegm) are a problem. Chest Clearance Technique. Phil Langridge's (NAC Aspergillosis Specialist Physiotherapist) Top Ten Tips for Exercise.

Nutrition and Health - Food and aspergillosis. Diet and steroid therapy. Useful for everyone.

Allergic Fungal Sinusitis (AFS) - What is it? What are the symptoms? How is it treated?

Aspergilloma and Chronic Pulmonary Aspergillosis (CPA) - What is it? What causes it? Am I going to get it? Tests. How is it treated? Can it be cured?

Severe Asthma with Fungal Sensitivity (SAFS) - What is asthma? What has mould got to do with it? How will I know? How is SAFS treated?

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Facemasks There are several models on the market that can be effective at cutting down the amount of moulds you breathe in. This can be important if you are sensitive to fungi and you are carrying out gardening jobs or spring cleaning outside or in. The dust raised into the air by these activities is considerable.

The type of facemask you use is important. Check that it conforms to the filtration standard FFP2 or FFP3 and ask for our facemask leaflet available in clinic.

There are now facemasks available with a valve that opens when you exhale. Users comment that this is an advantage over other masks as it enhances comfort and stops it getting damp and useless.

Some people may find that their eyes sting when there is a lot of dust in the air. This is a common feature of allergy to dust – often moulds. Full face masks can be bought to protect your eyes and your doctor may be able to recommend medication.

Suppliers are easy to find online (e.g. Amazon, www.allergy.uk.com/) but can be tracked down in your local DIY store (remember to ask for FFP2 or 3).

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Phone buddies

My name is Julie Macintyre. My husband Dave was diagnosed with sarcoidosis, chronic necrotising pulmonary aspergillosis, with aspergilloma the condition caused him to have massive haemoptysis, attempts at embolisation , septic shock , pneumonia.

The medication caused him to have hallucinations and paranoia, he used oxygen 24 / 7 concentrator in the home and cylinder and liquid oxygen for going out.

Dave passed away but I still attend the monthly Patient Support meeting with my son David and still have contact with patients and their families who we met on the wards and clinics.

I am willing to talk to anyone about the experiences and challenges we faced honestly in a non-medical , layman’s way , or if you just want to chat with someone that isn’t part of your family circle who you feel you might upset don’t hesitate to leave me a message at 0161 291 5866

NOTE this is NOT a contact number for medical advice and Julie has no affiliation with the medical team, she is an experienced carer.

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Fundraising for FIT The Fungal Infection Trust support many of our activities here at the National Aspergillosis Centre including research and patient support. If you have fundraising in mind please donate at www.fit.care or send a cheque made out the ‘Fungal Infection Trust’ to The Secretary The Fungal Infection Trust, PO Box 482, Macclesfield, Cheshire SK10 9AR

7th August: Tough Mudder (Laura Dawson)

28th August: 12 hour music event

If you prefer shopping we also have Trevor Barnes selling goods on eBay in aid of FIT (http://ebay.eu/17jlaRg). Trevor has raised £100 so far

Don’t forget our ribbons available from Jill Fairweather jill_fairweather23@yahoo.com or 0161 291 5866

Coming soon: Key rings donated by Robert Bedford & wife.

For those with mobile phones you can donate by texting ASPE14 £5 to 70070. You can text £1, £2, £3, £4, £5 or £10. We get 100% of your donation plus gift aid if you are a taxpayer.

http://www.fit.care/http://ebay.eu/17jlaRgmailto:jill_fairweather23@yahoo.com

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Living with a lung condition

The British Lung Foundation (www.blf.org) provides a wide range of information for people with lung health problems.

This range of booklets covers exercising with a lung condition, how to access exercise and eating well.

Another useful booklet is entitled ‘Living with someone who has a lung condition’ and contains a lot of useful information for the carer/partner. Each booklet is available for immediate free order. BLF also remind us that people with lung conditions qualify for the valuable ‘Flu immunisation which is recommended.

http://www.blf.org/

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Caring for someone with a lung condition British Lung Foundation also provide a range of help and advice for carers.

Carers commonly feel alone or neglected, frightened or lost but there are support organization you can contact and BLF provide a large range of services that are invaluable.

They provide an extensive booklet entitled ‘Looking after someone with a lung condition’ that you can have posted out to you free of charge if you phone them on 03000 030 555.

Subjects include:

• First steps for carers

• Practicalities

• Supporting the person you care for

• Supporting you

Studies have shown that the carers is often the last person to ask for help, sometimes because they don’t realise or don’t want to admit that they have that role – BLF support is excellent for rebalancing your life.

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Carers Carers are a vital part of patient care but are often ignored. Did you know you can claim carers benefits (£61 a week) NI credits and grants to help with various needs such as a holiday, a computer? Carers need a break and support as much as patients do but they frequently put the patient first neglecting their own specific needs! This can lead to carers becoming patients!!

Don’t wait until it is too late, for help & support

Try:

Carers UK 0808 808 7777

Young Carers & Carers Trust 0844 800 4361

Manchester Carers Centre 0161 27 27 27 0

Manchester Carers Forum 0161 819 2226

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Online communities

Facebook Communities are far reaching, covering billions of people around the world. One of our main aims is to reach as many people as possible with information about aspergillosis infections and to let them know that we offer specialist advice and support based at the NHS funded National Aspergillosis Centre in Manchester, UK.

If you can get access to a computer – even a good mobile phone nowadays allows you to participate – you will be able to join our groups on Facebook (https://www.facebook.com/groups/aspergillussupport/) or Yahoo! (https://uk.groups.yahoo.com/neo/groups/AspergillusSupport/info)

For those with computers, go to http://www.nacpatients.org.uk

No computer? No Problem

If you prefer a more face to face meeting to talk to fellow patients, carers and staff with lots of opportunity to ask questions and chat informally (and a free lunch) then our monthly meeting in the Altounyan suite (signposted from the North West Lung Centre clinic) is for you. Park for £3 all day, leaving a note in your windscreen that you are attending our Aspergillosis Support Group and arrive at 1pm for tea & sandwiches.

Whatever you want to do - drop by and join in with one of the groups, they are full of friendly people who understand aspergillosis who are more than happy to chat.

NOTE: we continue to offer our support to the carers of patients who have passed away. Please feel free to attend any of our groups, on or offline.

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Where is the Altounyan Suite? This is where the Patients & Carer Community Meetings take place once per month.

As you picked this booklet up in the waiting room of the North West Lung Centre (Ground Floor) I will assume that you can find your way back there to attend a Patient & Carers Community meeting!

You will remember turning off the main hospital corridor, passing through double doors and then finding reception in from of you where you checked in. The waiting room is through the doors to the left but there are double doors to the right of reception. Go through those doors and proceed right down that corridor to the doors at the end, past the Lung Function rooms on the left.

Go through those doors and you will see another pair of door in front of you. These are locked but you can gain access by pressing the button on the intercom.

If it is the day of a meeting there will now be signs directing you through a further two sets of doors lying straight ahead – you will find yourself in a glass roofed atrium where we meet for tea & coffee first. The meeting takes place through the door on the far right – just open & enter!

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Local Support Groups We are a national centre more or less positioned in the centre of the UK, but there are many people who have to travel a long way to visit the clinic or visit our support meetings held at the Altounyan Suite (just down the corridor from the NAC clinic on the first Friday of every month).

Consequently we support the running of local groups in the hope that we will be able to develop a nationwide support network run by patients & carers. The intention is to offer everyone a local support group where you can phone the leader (or visit the page on Facebook) and meet up with fellow patients & carers closer to where you live.

Current groups:

Scotland: Contact Francis Gallagher 0161 291 5866 or fcag2001@gmail.com Liverpool: 0161 291 5866 Brenda Winslade Wigan: 0161 291 5866 John Barker West Midlands: 0161 291 5866 Jean Jones East Midlands: 0161 291 5866 Kate Montali London: 0161 291 5866 Bart Govaert Yorkshire: 0161 291 5866 Lin Holding Denton Bristol: 0161 291 5866 Keith & Ann James

mailto:fcag2001@gmail.com

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News & Diary Fungal Infection Trust will shortly have a new website – go to www.fungalinfectiontrust.org

Patients & carers have raised £1500 for the Fungal Infection Trust in 2016 and nearly £8000 over the last 12 months

Patients & Carers Support Meetings – all take place in the Altounyan Suite, NWLC close to clinic. 1pm, first Friday of every month. Everyone is welcome, turn up on the day.

Robert Bedford, a patient at NAC for many years has sadly passed away. Our sympathies are offered to Robert’s wife & family.

Contact details Patient & Carer support can be accessed by phone at

0161 291 5811 (Chris Harris)

Or 0161 291 5866 (Graham Atherton)

We would be delighted to hear of any suggestions you may have to add to this booklet – this is your publication to adapt to your needs.

http://www.fungalinfectiontrust.org/

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Benefits Chronic lung infections can qualify the patient and family/carer for several different welfare benefits – it is worth knowing your rights!

Care and mobility

• Personal Independence Payment

• Attendance Allowance

Help for carers

• Carers Allowance

• Carers Credit

Help with heating costs

• Winter Fuel Payments

• Cold Weather Payments

• Warm Home Discount Scheme

The British Lung Foundation run a helpline for people who want more information about their entitlements. Calls never cost more than local rates, 9-5, Mon-Friday.

03000 030 555 helpline@blf.org.uk

mailto:helpline@blf.org.uk

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And finally…

Sadly some of our patients pass away every year for a whole variety of reasons, some connected with aspergillosis and some not.

We would of course like to know the cause of death of our patients and whether or not aspergillosis was a major cause. This can help us better understand how to treat aspergillosis in the future, leading to improvements in the lives of many of our patients – this is true both of our research aims and our routine statistical analyses.

You might be surprised to hear that we are not routinely informed of the cause of death, especially if the person died away from this hospital. We can only get the cause of death from a relative who has the death certificate.

We discussed this topic at our recent patient’s community meeting and many felt that although it is clearly a very sensitive time for the family after the death of a loved one, they would not object to being asked for this information, especially if the patient had made them aware of their wishes in advance. Consequently we would like to ask if you could spare this some thought should the worst happen. There is no time limit and we would be very grateful for your help.

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Puzzles

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Pulled Meat Free Chicken Recipe with BBQ Sauce - Quorn 4 Quorn Meat Free Chicken Fillets, defrosted

100ml BBQ sauce

Coleslaw

75g white cabbage, finely shredded

75g red cabbage, finely shredded

75g carrots, grated

50g red onion, finely chopped

2tbsp mayonnaise, low fat variety or natural yoghurt

½ tsp Dijon mustard (optional)

Seasoning

4 brioche bread buns

1. Hand shred the Quorn Meat Free Chicken Fillets and mix with the BBQ sauce. Leave to marinate for 30 minutes 2. Mix together all the coleslaw ingredients and season to taste, chill until required 3. Tip the shredded Quorn Meat Free Chicken Fillets in the BBQ sauce onto a baking tray and bake in the oven for 15 minutes at 180C/Gas Mark 4 or until core temperature is reached 4. Divide the coleslaw between the buns and fill with the Pulled Quorn

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Contents

Questions & Answers ............................................................... 4

What is Aspergillus? ................................................................. 5

Holiday Travel .......................................................................... 6

Travel tips continued… ............................................................. 7

Ask for a Leaflet ....................................................................... 8

Facemasks ................................................................................ 9

Phone buddies ....................................................................... 10

Fundraising for FIT ................................................................. 11

Living with a lung condition ................................................... 12

Caring for someone with a lung condition ............................. 13

Where is the Altounyan Suite? .............................................. 16

Local Support Groups ............................................................. 17

News & Diary ......................................................................... 18

Benefits .................................................................................. 19

And finally…............................................................................ 20

Quiz WinnerQuestions & AnswersWhat is Aspergillus?Allergic Bronchopulmonary Aspergillosis (ABPA) You have a fungal infection deep down in your lungs. This irritates the lung tissue and causes scarring. The infection is treated with antifungal medication and the inflammation and scarring is reduced us...Chronic Pulmonary Aspergillosis (CPA). Your lungs have been damaged in some way in the past (e.g. tuberculosis) and the fungus can grow in the affected area. Sometimes it grows as a fungal ball (i.e. aspergilloma) in the cavity. Sometimes several cavi...Invasive Aspergillosis. Almost exclusively effects very highly immune suppressed people e.g. Transplant patients, bone marrow transplant recipients. Must be treated very urgently which is why this group of patients are retained in hospital during the ...

Holiday TravelTravel tips continued…Ask for a LeafletHow can I reduce the risk of Aspergillus Infection? - What is it? How it is treated? How can it be prevented? Intended for people who are immune-compromisedA guide to Allergic Broncho-pulmonary Aspergillosis (ABPA) - Useful guidelines for sufferers of ABPA. How is it diagnosed? What is the best treatment?A guide to Chest Physiotherapy - Intended for sufferers of aspergillus chest infections such as ABPA, aspergilloma where excess lung secretions (or mucus, sputum, phlegm) are a problem. Chest Clearance Technique. Phil Langridge's (NAC Aspergillosis Sp...Nutrition and Health - Food and aspergillosis. Diet and steroid therapy. Useful for everyone.Allergic Fungal Sinusitis (AFS) - What is it? What are the symptoms? How is it treated?Aspergilloma and Chronic Pulmonary Aspergillosis (CPA) - What is it? What causes it? Am I going to get it? Tests. How is it treated? Can it be cured?Severe Asthma with Fungal Sensitivity (SAFS) - What is asthma? What has mould got to do with it? How will I know? How is SAFS treated?

FacemasksPhone buddiesFundraising for FITLiving with a lung conditionCaring for someone with a lung conditionCarersOnline communitiesNo computer? No Problem

Where is the Altounyan Suite?Local Support GroupsNews & DiaryContact details

BenefitsAnd finally…PuzzlesPulled Meat Free Chicken Recipe with BBQ Sauce - Quorn