Patient and Carer Forum - Really Inte... - British Lung Foun...

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Patient and Carer Forum - Really Interesting...

Hi everybody - My first blog post! As a carer for my husband who is a COPD sufferer he asked me to go to a meeting yesterday for the local COPD forum set up by the Respiratory Team. It was really interesting and I thought I would share my thoughts. Firstly there was information given about oxygen therapy and the fear of oxygen has been removed! And something I didn't realise is that oxygen is not necessarily a helpful therapy for all COPD sufferers - I had thought that oxygen was given to everyone as they got worse - but not so! I was amazed to find out that it can be really positive not only enhance quality of life but also help people live longer. There was also a discussion about fatigue and a new "talk" was presented (created by OT students) - which will be rolled out and included in the pulmonary rehab. courses. I personally thought this was a really good inclusion in the pulmonary rehab because fatigue is often underestimated as a very dominant symptom of COPD. I also found out that COPD sufferers should re-attend pulmonary rehab about every two years - but you need to self-refer. There is no automatic call back system. There is also hopefully a new self management plan handbook to be given to all patients by their GPs or respiratory nurses which records all the details of a patient which they can carry with them to advise what meds. they are on etc. This will be really helpful especially at times when patients are ill and needing emergency healthcare - it may have prevented my husband being given the wrong meds! This was a very positive meeting and I was really pleased that I had gone - it was interesting to meet the respiratory team and see their passion to improve healthcare. I hope that you find some of this information useful too. Have a good day and enjoy the sun we have for today! TAD xx

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17 Replies

Thanks for that very interesting, I do think people think once on 02 thats it! I have looked

after people out in the community with COPD they are in their 70's and still going! Val

Hi Tad - how positive you sound this morning! Good to know that the meeting has calmed any fears about oxygen use. There are a lot of changes in the pipeline over the coming months so hopefully other areas of the country will be holding similar meetings to the one you have just described. I think one aspect is that there is going to be a lot more communication and 'joined up thinking' between the various parts of the system - GP's, consultants, occupational therapists, community nurses, voluntary bodies etc. If all the plans work out it will offer us all a much better and more consistent service. Would love to 'chat' some more about it some time, but i'm currently between my rebounder exercises and my treadmill - just stopped for a breather between the two so have to dash now before i lose my enthusiasm ;) Catch you later, P xx

Hi Tad, the meeting seemed very interesting and positive for you. I hope they hurry up with the changes. The book sounds a good idea indeed to carry around with all our details in. I dont have a husband or partner, so no one really knows what meds i am on, when i need urgent treatment, i have a friend who takes me, but he cant remember what meds i am on and i can never remember the names either, but alot of the time, i am on my own. The rehab, i think it should be changed to automatic call back. My doctor refuses to send me to a specialist or consultant, seems to ignore that i constantly feel too tired to do things, though i try my hardest to get on with things. There are alot of changes needed for the good of copd sufferers i think.

in reply to San15

Please speak to the helpline about your non-referral to a consultant. The referral really does need to be made and hopefully they will be able to advise you on how to make this happen.

Hi San 15, I eventually got a referral through the practise nurse to the local respiratory team - perhaps you could ask for a referral to a local respiratory team. You should be getting more help than you are. Your local Breath Easy group might be able to help you. Good luck TAD xx

Hi Tad, yes a very interesting meeting. I would just like to add a little....the book is a great idea, unfortunately it doesnt have enough pages, but that will probably be rectified. I filled mine with all my infections, samples put in and infection names etc etc, but had a bad year so filled it in no time. the rehab as we all know is great, I have been going to a drop in exercise class run by the rehab nurses. It is a trial, but is proving very popular. The nurses bosses came this week to see how it was going, and some of us are going to meet someone from the BLF next week to have afternoon tea before the class, so hopefully this will be rolled out all over the country.It will be ideal for those who have already done rehab, and leave the waiting list shorter for new patients.

So thats something else new.


It would be useful to know where in the UK you are (county will do) so that I can make sure the Regional Team know whats going on in your area.

You mention a self management plan - do you know if thsi is the one produced by the BLF - or something more local ?

Gordon is correct - this is the sort of thing the BLF needs to know about - promoting good practice etc.

If everyone set a location in their community profile when setting one up it would help me and the other BLF bloggers to get the right BLF person to look at the blogs and perhaps feed into discussions etc.



in reply to

Hi Mark, We are in West Yorkshire (Leeds) - sorry I am not very IT literate and will amend my profile! The self management plan is something that is being produced by the respiratory team as far as I am aware - they presented it in the form of a booklet and asked for comments. From the discussion I understood it was local. Hope that helps.

Kind regards, TAD

Hi Mark, i am in shropshire

Hi everyone - I'm the BLF regional manager for the BLF North Region (North East and Yorkshire/Humber). It's great to hear that so many respiratory teams are involving their patients and carers. Some teams have developed their own self management plans and others use the BLF one. Doesn't really matter which is used its the benefit they bring to patient care that matters and helping people to learn more about managing their condition. Our Breathe Easy groups are another great way to get more information. As well as meeting people in a similar situation and making new friends, most groups have regular speakers coming to talk about respiratory (and sometimes non medical) topics. TADAW - we have a group in Leeds and others in W. Yorkshire - check them out on the BLF website.

About twice a year we arrange "network days" for our Breathe Easy groups to get together which go down well. In 2013 we hope to hold a BLF regional conference, so watch this space for the announcement!

Part of my work involves working at a local and regional level with healthcare providers. The BLF is represented at all the Strategic Health Authority (SHA) respiratory boards in England and I personally am involved with NHS North East and NHS Yorkshire & The Humber Respiratory Health Steering Groups.

I'd be really keen to hear from anyone who is involved on a patient/carer forum so if you'd like to get in touch at please do so.

Hope you all have a good weekend and hopefully not too much rain.


All sounds really positive and must be so helpful to many. Pete is not on oxygen but he has lots of complications i.e. COPD caused by sarcoidosis plus he has osteoporosis caused by steroids. He does tend to forget his COPD symptoms though and I am on hand to remind him especially when his chest is bad. It was so good to read your blog and glad the meeting went well. I will try and find out if anything like that is going on in our area. Thanks and good luck to you and your husband. xxxx

Hi, could anybody tell me if there is a breathe easy group near Highbridge in Somerset, I have really bad days and struggle with my breathing, so would probably find it very benificial to attend something like this. I am a regular visitor to this site, but have only posted once, I find it hard to express my thoughts in writing, but one on one discussions with a fellow sufferer, I feel would help.

I have a mobility car & scooter (over 65 so had to buy my own) so venue would not be a problem if such a place excists. Thank you for any replies I might receive.

Hi Drifter

Call the BLF office in Bristol - 0117 300 4080 - and they will give you the conatct details of your nearest group. You can also search for BE groups on our website by goin here -

Call the Helpline - 03000 030 555 - if you want to talk about anything - and remember our Pen Pals scheme - info from the Helpline.



Hi Mark, I am in tayside scotland.

Thanks for that Mark, i will certainly give them a call. Thanks again.

Please also join you local Breathe Easy group.You will make many friends and hear many talks on respiratory issues at their monthly meetings.Membership is FREE

Hello all

I'm looking for a breath-easy group Melton mowbray ,Leicester,Grantham.i had heard one was going to open soon

any support would be great

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