First of all, thank you to everyone who has already completed this survey. This is a reminder, so if you have already taken part thank you - please do share among friends and anyone you think it may be relevant for.
For those of you who haven't seen our last few posts, we are writing a major idiopathic pulmonary fibrosis (IPF) policy report that will be launched in parliament early next year. It aims to provide a comprehensive overview of services for people with IPF across the country.
With your help, we will highlight regional differences in care quality, share best practice and develop recommendations for the NHS and the Department of Health, so we can encourage them to drive improvements for all people with IPF, their carers and families.
This anonymous survey will take about 15 minutes to complete and is open to anyone in the UK with IPF. As a carer or family member of someone with IPF, you can support the person you care for by answering the questions on their behalf.
My Husband had IPF and passed away from it in February. We are in The South West and were under Musgrove Hospital in Taunton. I know you have asked for people who are still here but I don't think there was enough care from The Specialist Or The Respiratory Nurse. As soon as The Specialist told us My Husband had about a year left he shook our hands and said goodbye. We knew nothing much of this disease and were more or less in the dark. I texted the Respiratory Nurse on a few occassions that we couldn't get my Husbands oxygen up from the eighties to the nineties which I had looked up and found it had to be. In the end I had to ask for a review and he was then put on twenty four hour oxygen. We had a District nurse come in I think it was once and a lady from the Hospice came once a week. The Dr came in when asked to. It would have been nice to have had more support from the Hospital. It was a very scary thing for us both to live with. Sadly my husband was told a year last October and he died on February the 28th. Four months after being told a year. He died from heart failure. He didn't have enough oxygen in his body. He had already died about four or five times before the last time in front of me. His brain brought him back and one time I brought him back.
Dear Mavary, I'm so sorry to hear about your husband and the experience you've had with his diagnosis and care. Please do fill in our survey, we want to hear from patients, carers AND family. Your experiences are extremely important to us and just as valuable.
And please know, our support groups and Helpline are here for you just as they are for patients, so if you would like to speak to someone please call 03000 030 555 or to find out if there is a group near you please visit blf.org.uk/breatheeasy.
There's just one day left to have your say on IPF care in your area. Whether you're a patient, loved one or carer, please take part in our short online survey, which closes tomorrow 29 October. Your experiences will have a direct impact on our policy report which will be launched in Parliament next year. Click to begin: blf.org.uk/Page/Your-views-...
Sorry I missed the deadline for my response. My I Pad was down for a few days and I never got your message till last night. I would have liked to respond. I did meet an ex MP on a cruise and had a few words with him. He said to put it in writing and he would see what he could do as he still had friends in Parliament. I haven't heard anything back yet. I don't expect I will now.
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Proof of disability and carer.
Big thank you (bottle update)
My dad graduated from ICU today! Severe Pneumonia 
Just to say thank you everyone.
