Issue 1 January 2016 2 I hope you y all have had a very fiine festive se eason. The New N m Year is now well upoon us and wiith it resolutioons. I have made several, most of which are unforrtunately alre eady consign ned to the wa astepaper ba asket of histo ory. Though to t be honest as I before Christmass, it appears I have already dismissedd them beforre 2016 has even e started... However, one am writing this ad every inte ention of keeping is to pilo ot a newslettter which can n be shaped by our supp port group, re eflects our that I ha interestts, as well ass being a means to capture and distrib bute the outp puts from our meetings. I have looked at new wsletters from m support grroups across the t patch. I w was primarily y doing this to t ‘borrow’ some of their best id deas. They are a all rather fine with a diversity y that I guess reflects the e needs and interests of their me embers. A co ontact details s section see ems universa al and I have e included an n embryonic one here. They also have an u unfortunate habit h of puttin ng ILD nurse pictures p in. So o if this newssletter thing is i to progres ss, I will have e to arm-twistt Dr Hoyles into buying some fo orm of Photo oshop packag ge to carry out some heavy duty d airbrush hing. (For me e of course, not n Ophelia a). Team Oxford d ILD for 2016 6 gs we are up to’ section also a seemed like a ratherr appropriate thing for a newsletter. n I must m admit I have absolu utely A ‘thing no idea a what any off you are up to t and no do oubt you wou uld be somew what unnerve ed if I did. So o as the only person I kno ow about is s me then I guess g I shoulld let you kno ow what I’m up to. I initially y asked my e elder daughte er what interresting thing about me I could mention. m Her response wa as an utterly blank look, followed f by questioning if this w was the sort of o thing I did all day. I of course c ed her of the breadth of skills required d by a moderrn nurse but informe by the time t I was ha alf way through my lecturre she had allready plugged d herself bacck into her iPod. s for so omething inte eresting to te ell you about has thus As my search far prov ved fruitless, I have decid ded to shame elessly manu ufacture something. The aforrementioned d something is i to 'run' the e Edinburgh on in aid of both b the BLF and Action for f Pulmonarry Fibrosis. maratho A fine f example of o a group of people p doing This feltt like a rather fine idea as s I was starin ng at a webssite full of something ‘interresting’. Please do not feel the hap ppy faces of last year’s fin nishers. Now w in the cold light l of day I elled to take up u an art classs as other form ms am not quite so sure e... but in any case I have e at least put a compof o ‘interesting’ are of course e available. horical tick in the ‘interesting’ box. metaph Here are e the dates for the sup pport group meetinggs for the co oming year and early 2 2017. They continue to be on the second Thursday of alternatte months, tthough the keen eyed of you will notiice that thee June meeting is on the third Thursdaay. (Sorry… someone had got there ahead o of me in boo oking the haall). Thursday 11th FFebruary 16 6 Thursday 16th June 16 Thursday 13th October 16 6 Thursday 9th FFebruary 17 7 Thursdaay 14th Apriil 2016 Thursdaay 11th Auggust 16 Thursdaay 8th Dece ember 16 Thursdaay 13th Aprril 17 Issue 1 January 2016 2 Thanks to all of you wh ho attended the t last group meeting. I very much enjoyed it and was pleassantly surprised by the quality of ssound we colllectively mad de during the e singing for better brea athing taster session. As was me entioned, Sin nging for Brea athing came e out of a piece of re esearch from the Royal Brompton Hosspital. The aim of whicch is to enha ance existing g physiothera apeutic support forr respiratory conditions by introducing g individuals to a new fo orm of inform mal exercise, and teaching a better understand ding of breatth control thro ough the use e of the voice e. I hope you all found it both b useful and a enjoyable e as well as hing techniqu ues. If you reinforcing the importance of breath w breathing g techniques would like any additional support with achel Lardne er via the help pline and she e then please contact Ra e to provide some s comprrehensive advice. will be able For more information on o singing gro oups across London and d the South East please go to: https://ww ww.blf.org.uk//Page/Singin ng-Groups#L London Unfo ortunately I did dn’t take any pictures p so can n’t illustrate thiis with what w we looked like; however, in order to fill wh hat would be an unfortunate gap, this is an n example o what such a group looks like in of La ambeth. In Decem mber we also o had what I thought wass a really gra and question and answerr market placce. The idea wass to bring questions we h had about living with pulm monary fibros sis and trade e them for answers from gro oup members s who may have h already faced them. I have captu ured the outp puts below. I have also don ne my best to o search arou und to provid de additional details for some s of the answers a but unfortun nately there iss no guaranttee these ans swers are co omprehensiv ve. 1. Going Abro oad with Am mbulatory Ox xygen. The British Lung Fou undation high hlights the ne eed to make arrangemen nts for oxyge en to be provided at your desstination befo ore you trave el. UK supplie ers will not be b able to pro ovide oxygen n while an ind dividual is overse eas. Within Europe, E oxyg gen can be arranged a thro ough the European Health Insurance Card (EHIC) sscheme. Furtther details about a this ca an be found through the BLF B website https://w www.blf.org.u uk/Page/Goin ng-on-holidayy-practical-isssues or throug gh their helpline on 0300 00 030 555. our usual UK K supplier ma ay have direcct contact with a compan ny or the BLF F Outside of Europe yo onsulate in th he country yo ou are travelling to. Again n their helplin ne on suggest contacting the British co 030 555 can also a help. 03000 0 2. Flying with ambulatory y oxygen. This app pears to be airline a specific and the co onstant piece e of advice is to check witth an airline early e on. The Eurropean Lung Foundation has details of o the oxygen n policies of over 100 airlines and can n be found he ere. http://ww ww.european nlung.org/en//lung-disease e-and-inform mation/air-travvel/airline-ind dex/ 3. Are all thos se with Pulm monary Fibro osis Aware of Diaphrag gmatic Breatthing? Please ccontact Rach hel Lardner via v the usual helpline or e-mail e addresss to arrange e a 1:1 discu ussion and asse essment if yo ou are intere ested in this. Issue 1 January 2016 4. What is the difference between the various oxygen concentrators available? The flow of oxygen required will be the key factor regarding size. For those requiring relatively low flow rates then smaller concentrators are available; higher flow rates will require a larger device. Please contact your local oxygen nurses for further details. 5. The battery life of an oxygen concentrator is becoming more limited what can I do? I am afraid the best I could come up with here is to suggest a discussion with your oxygen nurse. 6. How to find Travel Insurance? As you will no doubt be unsurprised to hear getting a comprehensive answer is pretty much impossible; however, the British Insurance Brokers Association (BIBA) can identify brokers who can provide advice on this. British Insurance Brokers Association 8th Floor John Stow House 18 Bevis Marks London EC3A 7JB Phone: 0870 950 1790 (open 9am to 5pm Monday to Friday) Email: enquiries@biba.org.uk Website: www.biba.org.uk I understand that brokers make a service charge so it is probably worth looking at a number of them to make sure you’re aware of any charges in advance of using one and ensure they sufficiently understand your circumstances. The British Lung Foundation can also give advice on this via their helpline: 03000 030 555. The two companies mentioned by group members are: Forces Pension society (for those with a link to the armed forces) and Stay Sure Insurance. Here comes the big health warning: As I am not an insurance broker I am completely unqualified to give any advice or recommend particular companies, so please treat this as a broad selection of information which I hope is of some help. 7. How do you get a blue badge and where can you park with one? The link below takes you to the gov.uk website where you to find tailored information on the blue badge scheme based on a postcode you provide. I tried with Reading and Oxford and it took me to information on both how to get a blue badge, eligibility criteria and where a particular council will allow you to park. https://www.gov.uk/where-registered-disabled-drivers-can-park 8. What would happen to my treatment at the Oxford ILD service if I moved? Please contact the service via the helpline and to seek clarification regarding how your new location relates to the area covered by this service. Medicine and Me is a series of events organised by the Royal Society of Medicine and there is an upcoming one on living with pulmonary fibrosis. I have included some information from the Royal Society of Medicine below which hopefully provides a flavour of the event. The aim of these events is to provide an open environment in which the patient’s voice is given top priority. They give patients the opportunity to learn more about the latest treatments and research for their particular condition as well as allow healthcare Issue 1 January 2016 2 professiionals to heear first‐han nd from pattients and th heir familiess about their concerns and experiences. The reaal plus is thaat it is free ffor both pattients and ccarers. It takkes place at the Royal SSociety of Medicine, which h is at 1 Wim mpole Streeet. Now tho ose of you w who have a ssimilar level of 'knowleedge' to you ur average LLondon cabbie will havve already re ealised this is actually marvelllously close to Oxford SStreet, if that is in anyw way your so ort of thing. It is a haalf‐day even nt on 26th A April 2016, which is jusst after our April meetiing but perh haps if anyone does atten nd they coulld feedbackk to the grou up at our Ju une meetingg. I am veryy much hoping to go myself, though I must admit I have yett to ask either Dr Hoyle es or Dr Ho aabout all this. I guess thiss will be thee sort of queestion you aask just afte er you've made them aa cuppa. The linkk below willl take you to o the relevaant information, with d details abou ut speakers,, timings and how to o book. https:///www.rsm..ac.uk/even nts/events‐listing/2015 5‐2016/grou ups/public‐eengagemen nt‐ program mme/mmg0 03‐medicinee‐and‐me‐liiving‐with‐p pulmonary‐ffibrosis.asp px Firstly, I should verry much thaank you for making it to o the final ssection. Havving read th his far, you may well be exxperiencingg a number of emotions; probablyy with an asssociated strrapline of ‘who o on earth d does he thin nk he is expeecting me to o read this sort of stufff?’ In my deefence I have pu ut this togetther partly because the ere were qu uite a few th hings I wantted to convvey but also as an exemplaar of what w we could collectively prroduce, alm most certainly with morre finesse than I havee. If having rread this yo ou would likke to have a go at takin ng this forwaard in a more eloquent fashion then p please let m me know; myy hope is th hat anythingg we producce would h have contrib butions from m multiple group mem mbers. Also thee support group itself, if it is to co ontinue to m meet the needs of its m members wo ould benefit from continued shaping by its meembers, perhaps with some of us taking own nership of particular aspeccts. If you feeel you could contributte in any waay however small, then n please let me kknow. My thought is to o have a sho ort get togeether at the end of our February M Meeting with an nyone who is interested d. And finally… the ILLD team would like to w wish all of you the finesst of New YYear’s. Oxford Interstitial Lung Diseasse Service Oxford University Hospitals NHS Foundattion Trust Specialiist Nurse Diirect Line Opheliaa English / C Carmine Rugggiero 01865 2 227050 Oxford..ILD@ouh.n nhs.uk British Lung Found dation www.b blf.org.uk Action for Pulmon nary Fibrosiss http:///www.actionpulmonaryyfibr osis.orgg/ Age UK K www.aageuk.org.uk