Local patient advocacy groups ?

[PaulineHM]

Hello,

I need some help please ?

Is there anyone here in U.K. who is a member of a local respiratory patient advocacy group feeding into their local ICB or similar please.

As a patient rep there have been some initial discussions to set one up here where I live in the south of England.

If anyone can share their experiences of such an advocacy group with me please I would be happy to hear from you.

Confidentially guaranteed.

Pauline

[Ergendl]

Sorry, the closest I've got is to be on my surgery Patient Participation Group and attend regular reorganisation of the local heath authority meetings before Covid struck - certainly not respiratory focused although I mentioned respiratory care at times. Seemed like the NHS bureaucracy were moving deckchairs while the Titanic sank.

Wishing you all the best for this new group if it goes ahead, that it creates some great changes to improve healthcare rather than degenerating into a defensive talking shop for those looking after their jobs.

[PaulineHM in reply to Ergendl]

Awww thanks, yes thanks for sharing your experiences in this field re. bureaucracy...

I think I must be so fortunate here in Gloucestershire with the ICB. They are so welcoming and so willing to involve me as a patient rep, however I am the only one and sometimes the amount to give my time to is overwhelming- hence we (the ICB Resp group ) are looking at a patient advocacy group. for those of us with Respiratory Conditions. this means we can include people with other resp conditions too.

My local PPG has only recently been reconstituted after the pandemic. It is slow but getting there.

Go well,

Pauline

[lovejoyliz]

Hi Pauline,

I would sugest that you do a google search for Patient Participation Group in South England and you may just find something there.

Best of luck

[PaulineHM in reply to lovejoyliz]

Thank you for that, I have done and nothing comes up for PPG's other than those for Primary Care - this would working with ICB Respiratory group.

I will keep trying.

Go well.

Pauline

[katieoxo60]

I would contact the British Lung foundation, or Asthma UK . British Lung foundation offer breatheasy groups in certain areas and will help with starting up one in your area or maybe near by . Worth a try. Good luck.

[PaulineHM in reply to katieoxo60]

Hi Katie, ( again hehe )

The nearest Breathe Easy group is 40 miles away and with a different ICB . There is nothing in this county at all.

To start a new Breathe Easy group face to face here is not something I am really able to get into. My lung condition is too severe now and my self care is too important to ignore. Brain is ok atm haha. I can manage lots on line too which life much easier.All the big meetings are on line. I am so fortunate.

I have considered a local online Breahte Easy group which may be possible? I need to speak to the #ALUK about it I think ?

Go well,

Pauline x

[katieoxo60 in reply to PaulineHM]

Hi Pauline I think I spoke to you before about a breatheasy group. Not the answer for you it seems. There are lots of groups on Health unlocked maybe one might be of use to your circumstances. Its not easy to start a face to face group these days since the virus pandemic. But one way is to start a coffee morning . We do one at Arthritis Action. You need Zoom access of course. I am not familiar with the sign in requirements for such groups. But worth a try or join an existing one. Good Luck