Our five year plan makes me optimistic for the future
Jay has chronic obstructive pulmonary disease, or COPD for short. He explains why he thinks the Taskforce for Lung Health's new five year plan is vital.
Far too many people have no idea what lung disease is like and the impact it has on those living with it. I have COPD – an illness lots of people haven’t even heard of, let alone really understand what it is.
Compared to other illnesses, awareness and sympathy for lung disease is low.
Unless you’re very obviously ill – if you’re in a wheelchair or using an oxygen tank – no one can tell by looking at you that you have lung disease. That means most people don’t realise how many of us are affected.
And it makes it harder to get support. Not only for ourselves but for the family members, acting as informal carers, whose lives are also affected by our disease and diminished capabilities.
But living with COPD is a constant struggle. It is a debilitating, exhausting and sometimes humiliating disease. Even the smallest things can make you feel out of breath. It’s like trying to drive a car with the brakes on.
Living with lung disease can be really isolating and leave people feeling lonely and depressed. That’s why support groups are a lifeline and we need more of them.
They can be formal, like the singing for breathing group I go to or the network of Breathe Easy support groups run by the BLF. The pulmonary rehabilitation exercise programme is another opportunity for lung disease patients to come together and support one another
But Facebook groups and social media can also be so valuable. They’re a space for people to come together, share their feelings and get tips on managing symptoms.
I’ve been really pleased to have taken part in the Taskforce for Lung Health, and make sure that my experiences and the experiences of other patients are properly represented in the final report.
The plan doesn’t cover everything. There’s a lot more we can do to improve things for people with lung disease.
But the five year plan we have come up with is the most comprehensive one that’s ever been written. I’m really optimistic about what we can achieve for the future.
Personally, I’m particularly pleased that the report looks at the emotional effects of lung disease. One of the recommendations is for all respiratory guidelines to include mental health support. Health professionals need to look at the impact illness has on you as a whole – not just on your lungs.
We also recommend that more support groups are set up, run jointly between patients and professionals. I’m lucky, living in London, that there are lots of groups available. That isn’t the case everywhere.
More people with lung disease need to be able to access these groups so they can meet other people with the same illnesses and support each other.
My hope is that the government and the NHS will adopt the Taskforce recommendations so we get changes across prevention, diagnosis and treatment to make life better for people with lung disease.
Most importantly, I want the Taskforce to help raise the profile of lung health so everyone has a better understanding of what life is like with lung disease.
Jay was a Taskforce member from January 2018. He sadly passed away in October 2019. He will be missed.