Influencing the guidelines on your care.

[BethanyBateman]

Hi all,

I imagine a lot of you have heard of NICE (the National Institute of Health and Care Excellence). If not, they’re the people who give advice and guidelines to the NHS and social care services, about how to treat certain conditions or support their patients around certain issues.

To ensure their advice is sound, they look at evidence, consult with experts and welcome input from patients and the public. After all, your views are hugely valuable and can highlight the issues that need to be addressed.

I’ve asked you for your thoughts on NICE consultations a couple of times, so that we can help feed back to them on your behalf. But what if the BLF didn’t do that? Or if you weren’t a member of this community, so didn’t see my post?

Now NICE wants to know what people think about patients, carers and the public being involved in their work. They’ve put together a 10 minute, confidential survey and would like you to tell them what you think.

We’ve already given our view. We told them it’s vitally important that patients can help shape NICE guidelines. We also suggested they do more to make more people aware of their role in the NHS and how important it is to get a patient’s perspective on their NHS experience.

But it’s not enough for us to say it - it’s even more important that you have your say. Would you mind taking 10 minutes to follow this link and complete the survey?

snapsurveys.com/wh/s.asp?k=...

You might not know about some of the things they talk about but that’s ok. It’s important that NICE are aware of what you don’t know as well as what you do!

Anyone can fill it in, whether you have a lung condition yourself or have a family member or friend who does. Or if this is just something you care deeply about.

The survey is open till midnight on Sunday 17th January 2016.

Thank you for reading.

Bethany

[mmzetor]

done and sent

[cofdrop-UK]

Thank you Bethany - completed.

cx

[sassy59]

All done Bethany. X

[pegbl]

Done and sent Bethany xx

[clematis5932]

Sorry Bethany unable to complete get to I think the last page then it stops and will not let me carry on

[BethanyBateman in reply to clematis5932]

I'm sorry to hear that Clematis. It seems to be working now so hopefully it was just a temporary glitch!

[Pentreath Volunteer]

Done and dusted!

[Jessy11]

Bethank, thank you for this information.

I've completed & submitted the survey, only took a couple of minutes.😀

[rememdium]

It would be better if patients could insist that there doctors treat them as per NICE guidelines instead of at there own discretion filled in survey

[Lynda1952]

Done and sent Bethany

[katieoxo60]

Thank you for the info Bethany, I have done the survey. I am a member of the steering group in Coventry for changes to meet older peoples need, but feel as we are all patients there should be consultation with everyone of the population not just the minority as is now the case. Often the views put forward are only those of each individual group which is often only the opinion of a committee for that group. But that's just my opinion.

[BethanyBateman in reply to katieoxo60]

I think you're right Katie. While it's probably not possible to consult every single person, far more needs to be done to give everyone a chance of getting involved in some way, if they want to.

[Hidden]

Just to point out to Bethany and you all out there that NICE is predominantly an English service and that in Scotland we have SIGN ...Scottish Inter Collegiate Network which does a similar job within health research.

[BethanyBateman in reply to Hidden]

You're absolutely right Terry. Sorry, I should have pointed that out. NICE only has official authority in England, although many of their recommendations are taken on board in Wales as well.

[Hidden in reply to BethanyBateman]

Thanks for this Bethany. Sorry I left out the 'GUIDANCE' in my SIGN reference. I frequently visit NICE pages and they do great work for medical research, so I am sure that a certain symbiosis works between both agencies.

[Offcut]

Done and sent

[xboxwidow]

Done and sent Bethany

[frank65]

i would like some one to answer me a question at the moment i am on emergency meds dyoxolene + steoroids but would like to know why do i have this rough hourse voice sorry about the spelling been up all night because of the meds but it happens every time i go on the meds and i get the voice and rough throat (why)

[BethanyBateman in reply to frank65]

Hi Frank, I'm really sorry to hear that. I'm not medically trained myself so I'd suggest talking to one of the nurses on our helpline. You can reach them on 03000 030 555. They'll be able to give much better advice than I can.