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March 2015, Issue 6
For families affected by pulmonary fibrosis
In this issue:
Reports
from
Meetings
Latest news and updates
Reader’s Travels:
Energy
Efficiency
– how to
save
money
whilst
saving the
planet.
St Ives in Autumn
The Highs (and Lows) of Travel with Oxygen
Positive Thinking: an Aid to travelling with NSIP Action for Pulmonary Fibrosis
Welcome to the latest edition of the PF
News. In his talk at the Christmas meeting, Dr Adamali spoke about how 2014 had been a year to remember and that many wonderful things had been achieved towards advancing the treatment and care of those with PF. More is still to come, so watch this space during 2015! Our meetings in October and December were very well attended and members enjoyed a lively and engaging talk from the team at the Centre for Sustainable Energy in October and a thoughtful and positive talk in December by Mike Bray on his personal experience of lung transplant. I am delighted that people are contributing to the newsletter with their mainly positive experiences of travelling with oxygen. It is also useful to hear about the problems and pitfalls that are sometimes encountered. Others might be able to offer a solution or advice. In February, the support group will have been going for two years. Happy Birthday to us, and a huge thank you to everyone who makes it possible.
March Contents October 2014 PF Support Group Meeting 3 Centre for Sustainable Energy – Talk and Quiz 3 News and Updates 4 December 2014 PF Support Group Meeting 5 Action for Pulmonary Fibrosis – Talk by Mike Bray 5 IPF Guidelines. 6 St Ives in Autumn 7 The Highs and lows of travel with Oxygen: Positive Thinking with NSIP 8 High and Lows on Holiday 9 Quiz 10 Jokes 10 Contacts 11 Need a Lift? 11 Dates of Meetings BC
Gail
STOP PRESS!
At the Quilt Raffle and Cake Sale on 12
December 2014 £785 was raised. Thank
you to everyone for their support and for
making it such a success. We have raised
enough to purchase our portable hand –
held pulse oximeter with additional extras
and software to enable us to download
data for ambulatory oxygen assessments.
2
REPORTS FROM MEETINGS 8 October 2014 – PF Support Group Meeting
Heather Lamb welcomed everyone to the meeting and introduced Keith Ackerman, who is a member of the support group, representing the Bristol Lions. He presented her with a cheque for £50 for the support group. This is the second donation that we have received from the Lions and their generous support is very much appreciated. Heather then went on to introduce representatives from the Bristol based Centre for Sustainable Energy, who came to give advice and tips on energy saving.
Centre for Sustainable Energy
We started with an energy efficiency quiz, which was quite an eye-opener for most of us and provided an enjoyable format for discussion. The quiz covered increasing domestic fuel costs; how to save money; the ‘Warm Home Discount’ (see below); home insulation grants; condensation and damp issues. Grants There are lots of grants available towards the cost of making your home more energy efficient. You may be able to get a grant towards the cost of a new boiler, heating system, or insulation, for example. The Home Energy Team can give you advice on this and may be able to refer you to a local company that can access the grant for you and do the work. Where do the grants come from? These grants are provided through the Energy Company Obligation. This is a Government regulation that requires the largest UK energy suppliers to help people make their homes more energy efficient. So the money comes from energy suppliers. What can I get? Under the Energy Company Obligation (often simply called ECO), some low income households can get grants to cover
the whole cost of cavity wall or loft insulation, and significant grants towards other improvements like new boilers. This part of ECO is called “Affordable Warmth”, and you can read our impartial guide about it here. Other people are eligible for grants for cavity wall and loft insulation because they live in a particular location, known as a Carbon Saving Community area. Call us to find out if you live in a qualifying postcode area. Currently, everybody else can claim a grant towards the cost of cavity wall or loft insulation, or insulating a ‘hard-to-treat ’ cavity wall.
Your energy supplier may also offer something called the Warm Home Discount which is a rebate on the electricity bill for customers who qualify. All the ‘big six’ energy companies (plus some of the smaller suppliers) are participating in this scheme which for the winter 2014-15 will give a £140 rebate to people named on a gas or electricity bill who receive the Guarantee Credit element of Pension Credit. Other income and disability related benefits may also make you eligible. The qualification benefits and
amount of the rebate may change for next year. See www.gov.uk/the-warm-home-discount-scheme.
If you are of pensionable age, disabled or have long-term health issues you can ask to be put on the Priority Services Register and receive extra help from your energy supplier. This might include:
Quarterly meter readings to keep on top of bills
Free gas-safety check
Relocation of meters to a more accessible place
Advance notice of disruption to supply
Special controls for appliances and meters
Password protection scheme to deter bogus callers
Bills sent to friends, relatives or carers
Services for hearing/vision impaired customers
CSE has produced a suite of around 50 simple and straightforward energy advice leaflets that cover insulation, household renewables, understanding your energy bills, Green Deal, heating systems and many other issues. Their Freephone advice line is open from 9 am to 5 pm, Monday to Friday – 0800 082 2234 Website: www.cse.org.uk
IPF Awareness Week. Our stand, selling home-made cakes and raffle tickets, in the main atrium in the Brunel Building during IPF Awareness Week raised £339.26. As a group we felt we wanted to help the two Pulmonary Fibrosis charities; Action PF and The Pulmonary Fibrosis Trust, donating £75 to each charity. The pf Trust has helped a number of our patients with expenses involved in attending other centres for assessment for transplant and we are very grateful to them for their support. Dr Toby Maher of the British Lung Foundation gave an interview on Radio Bristol in October. He argued that while efforts by the Government, NHS and other healthcare bodies to fight cancer are welcome, other diseases with similar rates of incidence and mortality should be given the same priority. The full transcript can be viewed at: http://www.bbc.co.uk/news/health-29363887 Raffle for Sandra’s patchwork quilt. It was agreed that we should have another stand at the hospital in December to sell raffle tickets for the quilt, as well as cakes. Gail agreed to check whether we needed a licence. Update. The hospital’s own gaming licence covered the sale of our raffle tickets. Members of the group were therefore able to sell tickets before the day the raffle was drawn. Heather also confirmed that the Bristol PF Support Group is a registered charity – No. 20068. Thanks to everyone who provided prizes for the raffle. You are generous crowd! 4
10 December 2012 – PF Support Group Meeting
It was wonderful to see so many people at the December meeting; a rough head count indicated that there were fifty of us. Lots of regulars and some new faces too. Heather introduced Phil Trotman, Charity Steward, of the Gloucestershire Masons and friend of two of our group members. Phil gave us a brief oversight of some of the good work that the masons do and how they had decided to donate the proceeds from their 2014 Harvest Home to our group. He presented Heather with a very generous cheque for £400.
Action for Pulmonary Fibrosis
Heather then went on to introduce Mike Bray who set up the charity Action for Pulmonary Fibrosis in 2013 and who is the recipient of lung transplant. Mike was diagnosed with PF back in 2005, just before he retired. He spoke about the problems he faced before then, with the lack of a diagnosis or any treatment at all. He knew he was getting progressively worse, but x-rays showed no change. He was finally referred to the Papworth Hospital and a CT scan showed significant scarring since the last scan. He was recommended for transplant, had the assessment and was put on the waiting list. He got ‘the call’ only two weeks later, but it proved to be a false alarm. Mike received further calls, but it wasn’t until 2010 that he finally got a match and new lungs. In 2010 the Papworth Hospital PF Support Group was formed with Mike as Chairman. From 15 initial attendees it now has 70-80 patients on its register.
In 2013 a core group set up Action for Pulmonary Fibrosis. The group consisted of patients, their families and medical specialists. The aim of the charity is to raise the profile of PF, to support patients and to raise funds for research. Fundraising is an important part of the charities activity and Mike thanked us for our contribution following the cake sale during Pulmonary Fibrosis Awareness Week. The Action for Pulmonary Fibrosis website is a wealth of information. And provides straight forward information on oxygen, travel, planning ahead (something we all need to do, but struggle to face up to), other support groups (some have their own newsletters available online which are well worth a read), and news. www.actionpulmonaryfibrosis.org
The meeting continued with a delicious Christmas lunch and the opportunity to mingle and chat. A huge thank you to the people who waited on us and made lunch a very happy occasion. 5
Evidence-based Guidelines for the Diagnosis and management of IPF After lunch Dr Adamali spoke about the upcoming review of the ATS,ERS,JRS,ALAT IPF guidelines. ………… The 2011 International Guidelines for diagnosing and treating idiopathic pulmonary fibrosis were written by experts and are currently being reviewed and updated. Opinions are being sought through inviting patient organisations to contribute. We are keen to hear patient and carer views and opinions through holding a focus group, to find out what issues of diagnosis and management of IPF matter to you. This information will then be summarised and communicated back to the task force of the European Lung Foundation. Results of every organisation who have contributed will be included in the latest guidance, reflecting patient views, with the aim that every individual can receive the most appropriate diagnosis, treatment and ongoing management for them. Topics for review include communicating the diagnosis of IPF, family reactions to diagnosis, expectations of doctors and patients, medication, research, identifying care that matters to you to reach your health and lifestyle goals and maximising quality of life, pulmonary rehabilitation, lung transplantation and awareness of IPF patient organisations and support. A focus group for patients with IPF would meet in January and there was strong support in the group to participate.
The Bristol PF Support Group
6
Going to St. Ives with Oxygen
As I was going to St. Ives I took oxygen, which was wise. And from Godrevy Light to Sennen Cove, Up and down the hills we rove, But we came back to St.Ives. I find that with portable oxygen most things are possible, so a four day stay at Carbis Bay, St. Ives was planned, having been there before and knowing what to expect. There are an awful lot of hills around St. Ives. I ordered a ‘Liberator 10’ (liquid oxygen base unit) well in advance and it arrived on time for the start of the holiday with the usual Air Liquide efficiency and smile on the Monday morning. It rained all the way to St. Ives. At the hotel we were given a ground floor room and from then on it was all easy. I used oxygen whilst out: walking around St. Ives, watching seals near Godrevy Lighthouse, watching birds in Hayle Nature Reserve – including a kingfisher, surfers on Gwithian beach, sea birds at Marazion, Zennor church and its’ ‘mermaid pew’ and at Sennen Cove watching waves in bright sunshine.
The Liberator 10 kept in the boot of my car was sufficient for four days and with two portable containers gave an adequate ‘day out’ range. I did not use it in the hotel but that would not have been a problem. Oxygen, Leap pulmonary rehab programmes, Exercise on Prescription all help, so plan the future and Go-For-It!
Zennor Mermaid Chair ^
7
othing tops an’s lans In the summer of 2013 I married Jackie, my partner of five years. One of Jackie's step sons could not make the wedding, but we promised that we would visit them in Vancouver for my 70th birthday. Our pastimes are walking and tennis to which we add SCUBA diving, when we spend the winter in Tenerife. So it was a shock to find that my persistent dry cough led me from my GP to Southmead and the Lung function unit in September of that year. I did not feel unwell but tests and subsequent biopsy revealed I had "Non specific interstitial pneumonitis" - NSIP From the beginning of the now regular visits to the Lung Function unit, the team have encouraged and supported us saying, "there is no need for this condition to limit or change your way of life in any way". I was prescribed Immunosuppressants, and Acetylcysteine. Two weeks before my 70th, we were doing a 10Km walk along the southern rim of the Grand Canyon and at the lunchtime stop began to think up alternative acronyms for "NSIP". Jackie's thoughts for this shot, were "Nothing Stops Ian's Plans".
Three days after my birthday, we were walking in the foothills of Mount Robson, the highest peak in the Rocky Mountains in Canada. We hiked up to a beautiful area called Lake Kinney, where we stopped for lunch and gazed at The top of Mount Robson. When I took my medication, thoughts of NSIP came up again, resulting in "Northern Summit Is Possible". 8
This was all discussed at my December consultation with Dr Adamali. We told him about our trip and showed him the pictures. He suggested we write an article for the newsletter. I still feel the same as year ago, and feel humbled when I see some fellow patients who have so much more than me to endure. To all the team of pleasant and dedicated people at Southmead, I want to say thank you for your openness, understanding, support and advice, life is turning out just as you said. "Next Summer Is Planned"........................� Ian L.
--------------------------------------------------------------------------------------------------------
On holiday with oxygen 2014 – the highs and lows Last October 2014, I flew to Mallorca with my son for a week’s holiday. My daughter had been in touch with a supplier of liquid oxygen to the Balearics, ‘Linde Travel Iberia’ who communicated via email and were very helpful. The large dewar had been delivered on the day we arrived; it was in my room together with the portable container. My son filled it up every day for me. We went on several coach trips and had no problems with the oxygen. We also used public transport and again, everything went smoothly. We do know the island quite well, so felt very comfortable travelling around but without oxygen I would not have been able to visit so many places. I hope to do the same again this year.
I had requested assistance on the flights which was also first class. I had a very different experience earlier in the year when I visited Greece – my daughter had a very hard time communicating with the Greek embassy (we had been told to arrange my oxygen needs with them) – and after many emails she was advised to, ‘contact the hotel where she will reside in order to arrange the necessary provisions to be pre-ordered on her behalf.’ This was contrary to the advice we were given in the UK and we simply gave up. Sad to say my holiday was very difficult as I had to go through the whole week without oxygen.
March Puzzle and Joke Page
Below, 10 nine letter words have been broken into chunks of three
letters. These chunks have been mixed up, no chunk is used twice and all chunks are used. Can you determine what the 10 words are?
ent sen oom ush ile cro
cla rbr ise lis ssr lig
hai mar htn age ess new
sag clo gar ion ing oth
enc ine col our erw cod
A lady came in for a routine physical at the Doctor’s office.
“Here”, said the nurse, handing her a urine specimen container. “The bathroom is over there on your right. The
Doctor will be with you in a few minutes.”
A few minutes later the lady came out of the bathroom with an empty container and a relieved look on her face.
“Thanks!" she said, "But they had a toilet in there, so I
didn’t need this after all.”
Newsflash: A lorry carrying copies of the new Thesaurus crashed
today. Witnesses were startled, stunned, amazed, staggered, taken
aback, aghast…
10
Lung Function Appointments 0117 4149939 Heather Lamb, Respiratory Nurse Specialist [email protected] 0117 4147762 Debbie Warbrick, Senior Clinical Trials Research Nurse 0117 4148114 Lloyd Mayers, Respiratory Pharmacist 0117 4147762 Dr Huzaifa Adamali Secretary: June Langlands 0117 4146341 Professor Ann Millar Secretary: Elaine Musgrove 0117 3235348 11
BLF
Call us: 03000 030 555
Lines are open Monday to Friday
from 9am to 5pm. We aim to
answer all calls within 6 rings.
If we are not able to answer your
call and you leave a message, we
will call you back within the hour.
The cost of calling is now
guaranteed to be included in your
call package, or will cost the
same as making a local call from
a landline or mobile.
Email us: [email protected]
We will respond to your email
within 5 working days.
Do you need a lift to the PF Support
Group Meetings? I have a list of
members and their contact details
and will happily put you in touch with
them. Please call me on 0117
9245310 (before 7pm please) or
email me at [email protected]. If
you can offer a lift and haven’t
already passed your details to
Heather or myself, please contact
me.
Gail
Answer to the Quiz:
new + sag + ent = newsagent
cro + cod + ile = crocodile
col + lis + ion = collision
cla + ssr + oom = classroom
enc + our + age = encourage
hai + rbr + ush = hairbrush
oth + erw + ise = otherwise
clo + sen + ess = closeness
lig + htn + ing = lightning
mar + gar + ine = margarine
The Bristol PF Support Group meets every two months at: New Brunswick Church, Wigton Crescent Southmead Bristol, BS10 6DY
Meetings 2015
April 8, June 10, Aug 12, Oct 14, Dec 9.
Meetings are always on a Wednesday at 1.00pm to 3.00pm.
