More needs to be done for people with IPF

Mike Kane MP speaks to people affected by idiopathic pulmonary fibrosis (IPF) about why better treatment is needed.

In January 2015, I was fortunate enough to visit Wythenshawe Hospital, not only a hospital in my constituency but also the hospital in which I was born.

My visit was to meet with a group of local people who have a rare lung condition called idiopathic pulmonary fibrosis – otherwise known as IPF. When you have IPF, scar tissue builds up in your lungs. This makes them thick and hard, they become really stiff and this means they’re less able to take oxygen from the air.

People with IPF gradually find it harder to breathe and become very tired. Sadly, there is no known cure for IPF and the average life expectancy is just three years.

Problems for IPF patients

Speaking with people and hearing their stories really drove home for me the problems facing those living with this disease, and the need for action to be taken. Many of them told me about their struggle to get an accurate diagnosis.

With such little awareness of this fatal disease, it can take a long time for someone to be diagnosed with IPF - and misdiagnosis does happen. This leads to a delay in getting the treatment that could give someone more time with their loved ones.

I was told by one gentleman that he was sent away from the clinician and told to google the disease himself. This is not acceptable treatment and shows why we must promote greater understanding of IPF, not just in the general public but health care professionals too.

With awareness of IPF among health care professionals so low, I was delighted to meet with Dr Nazia Chaudhuri - a consultant respiratory physician with a specialist interest in IPF. Dr Chaudhuri works tirelessly for patients at Wythenshawe Hospital and as a result has cut the waiting time for a referral to the clinic in half.

This is a great start for the patients at Wythenshawe, but there is still much more that needs to be done – locally and across the UK.

Showing support

The patients I met with on the day were part of a pulmonary fibrosis support group. The group meets regularly and together they support each other.

Speaking with the group I could tell how difficult it was for all of them to be diagnosed with IPF, to cope with the shock of what lies ahead of them and to find such a lack of support - but this didn't stop them. Everyone in the group had a positive attitude and they would not let a lung condition stop them from living their lives.

The pulmonary fibrosis support group is organised and run by Paul. Paul recently had a lung transplant and it was great to see him on his feet. We should certainly celebrate people like him for giving his own time to support others – but we cannot simply rely on the compassion of people to voluntarily provide services; politicians and the health care community must recognise the need to support those with IPF too.

Later this month, the British Lung Foundation is launching a report on IPF in parliament that will share the experiences of patients and their carers, and make recommendations to improve services and care for those living with this fatal lung condition.

After meeting people living with IPF, I welcome both this report and the work of the BLF making a difference to their lives. I’ll continue to raise awareness of this devastating disease in parliament and fight for better services across the UK.

Find out more about IPF and the work we’re doing to improve the lives of people affected.


Comments

Hi Evelyn, I'm so sorry to hear you've had so little support so far. Unfortunately this is still all too common and why we're campaigning to improve IPF care across the UK. I really recommend giving our helpline a call on <strong>03000 030 555</strong>, Monday to Friday between 9am - 5pm, our nurses are fully qualified to answer any questions and can help to get you the support you need. You can also visit our online community and speak to other people who are also living with IPF at <a href="http://www.blf.org.uk/community" title="BLF web community" rel="nofollow">http://www.blf.org.uk/community</a> All the best, Suzanne British Lung Foundation
I have recently been diagnosed and was given no information other than, drugs which will cost £25,000 per year (but due to side effects it is unlikely I will get them) oxygen therapy or if I am lucky a lung transplant. I live in the Highlands and the nearest support group is 100 miles away.
My husband, Arthur, died from IPF in December. Although he had been diagnosed in February 2013, nobody warned us of how the condition would suddenly escalate. One week he was driving and walking about, albeit on oxygen, the next he was lying in a hospital bed struggling to breathe and in less than 3 weeks he had passed away. He was 87 but had been very young for his age and always active. More must be done to find a cure, but also to educate medical staff about this condition, so that patients and their families can be given better information so that they are better prepared.
My wife Jenny died from IPF just 2 days before last Christmas - she was only 65! She had suffered with a persistent cough for 3 years, but had been wrongly diagnosed with severe Asthma. I urge all family members of such sufferers to press for specialist diagnosis of this terrible disease!
My husband Robert Smith (Bob) has just died from IPF he was diagnosed last February and was well until just before Christmas when he got an infection so was admitted to hospital but deteriorated quickly and died 3 weeks later aged 65. Yes much more needs to be done and we will be collecting money for IPF research in his memory. Kind regards Lorraine Smith

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3 February 2015