Got IPF? We're here for you

Louise is running a new service to help people living with IPF. It is as much about listening as it is about offering practical advice.

Our IPF Support Service is here to give advice and listen

Although the support for people living with IPF is a lot better now, lots of patients don't have access to an ILD specialist nurse.  That means you may not have someone to talk to about your day-to-day concerns. You could miss important information about the different kinds of support you could get.

That’s why we decided to set up a new, dedicated IPF support service, so we can offer direct emotional support, and help guide people who wouldn’t have help otherwise. 

What is the IPF support service?

The IPF support service is a free programme designed for people living with idiopathic pulmonary fibrosis. It doesn't matter what stage of your journey you're at. 

If you're using the service, you'll have a single point of contact for 6 months - me! We'll speak once a month, in between your appointments.

It means that you, or your carer, can get emotional support and guidance between medical appointments. It can help you feel better prepared when it's time for your appointment and teach you better ways to manage your condition. 

What kind of topics does the IPF support service cover?

There are lots of things we could talk about, depending on what kind of topics you want to focus on. 

If you’ve recently found out you have IPF, we might talk about your diagnosis, what it means to you and how you're feeling emotionally. We could also talk about what kind of tests you should expect, and what the results mean. 

We could talk about the drugs that are available for IPF, and the best ways to manage any side effects. If you’ve got an appointment coming up, then we could prepare what sort of questions you want to ask your clinician so you get the most out of it.

Sometimes, you just need to talk about the emotional impact of your lung disease.

I can also tell you about benefits you might be entitled to, as well as advice on support groups, or any clinical trials that might be suitable for you - and what to expect if you get involved! 

Exercise is a really important part of keeping well when you have a lung condition - something I know from my background as a respiratory physiotherapist. So if you have questions about pulmonary rehab, exercise, oxygen or managing your breathlessness, I can help, including advice on how to travel safely when you have IPF. 

If you’re a carer for someone with IPF, you might have questions about the best ways to support your loved ones, or want to find out what kind of services there are available to help you. 

Let's talk about palliative care

One of the things I talk about with people is palliative care. A lot of people with IPF think palliative care is only for people who are at the end of their life - but I’m trying to show people that that's not true.

Actually, palliative care services can help you from the beginning, and mean that you’re much more comfortable. 

It also means that you’ll understand better how your disease may progress over time, and perhaps when you do get a bit more unwell, you’ll have more plans in place, and feel more in control. 

It's important to just listen

I’ve seen first-hand how beneficial it can be when someone with IPF has a health care practitioner they can talk to regularly. Someone who can chat to them about their feelings and give them emotional support.

Although the IPF support service does offer lots of practical advice, sometimes you just need to talk about the emotional impact of your lung disease. That’s okay too. 

As of September 2018, we're really busy! So bear in mind that if you don't hear back right away, don't worry - we're working on it, but it might be a couple of weeks.

How to sign up 

If you’d like to sign up for the service, it’s very easy.  Just fill in your details on the website, and I’ll get back to you when I can. Or you can email me directly at [email protected].

I’ll get back to you with a few questions when I can, and we can work out if the service is right for them, then we book you in. 

Sign up for the IPF support service

At the moment, the service is only suitable for people with idiopathic pulmonary fibrosis , and it won’t replace your existing clinical care.  If you’re not suitable for the IPF support service, or need someone to talk to sooner, don’t worry - everyone is always welcome to call our helpline. It’s open Monday to Friday from 9am to 5pm on 03000 030 555. 

IPF nurse helpline BLF

Louise Stanley

Louise has worked with people with IPF for the last 10 years, and is passionate about supporting people with IPF and wants people and their families to receive the highest quality information about their condition.


I Do need reassuring .There is a lot of Questions  I do not get answers from my doctor on .My Sats are dropping .But no one seems to be telling me what I should be doing ?
i have I.P.F and am interested in any information you can give on palliative care.
I am on ofev nintedanib since the 26/8/2018, I had a follow up ,ct scan and was told my results are good, i also arrange blood test for liver count once a month, and have also been told this is alright,via hospital pharmacist where i collect tabs from every 60days. I am 77years of age and wondering if there is anybody in same position.

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17 September 2018