Living with a lung disease
Summary
We want people with lung disease to live full and active lives and continue to do the things that are important to them and to their families.
At the moment the health service is set up to help when things go wrong, rather than to help people stay well.
What's the issue?
Too many people are left in the dark about important decisions about their care. They feel they are not being listened to and are left out of conversations about what is being planned for them.
How do we solve it?
- We want people with a lung disease to have a personalised care and support plan.
- We want patients to be free to access the information they need and update their plans when they want, and to give permission for families and carers to do the same
Our vision for the future
People with lung disease will have more say over their care and patients, families and carers will have the knowledge they need about lung disease. Patients will be able to create their personalised plan and be able to use and change the plan where appropriate.
“Every effort should be made for patients to influence important decisions about the care, and for the people who are important to them to be involved.”
Steve Jones, Chair, Action for Pulmonary Fibrosis
What's the issue?
Good treatments are available which don’t use drugs. In particular, pulmonary rehabilitation, a programme of exercise and advice for people with a long-term lung condition.
They are some of the most effective ways of caring for people for lung disease. But these treatments not available to all patients.
How do we solve it?
- We want more patients to be able to have pulmonary rehabilitation
- We want more support groups for patients, their families and their carers
- We need more research into treatments that don’t use drugs.
Our vision for the future
We want every patient who would benefit to be referred to pulmonary rehabilitation, and for every patient, family member and carer to know about nearby support groups which they can access. We want the patient experiences of other treatments that don't use drugs to be listened to be included in decisions about care.
Pulmonary rehabilitation is the most beneficial treatment I have received. This is not only for the education provided but more importantly for the education given.”
Colin Failes, living with idiopathic pulmonary fibrosis
“Being told you have IPF is devastating but if you come to a support group and put out your hand, somebody will hold it.”
Malcolm Mason, who had idiopathic pulmonary fibrosis
What's the issue?
Pharmacists are well placed to check people are taking the right medication, safely and effectively. But at the moment there’s a limit on the number of reviews that pharmacists may carry out. A further problem is that the outcome of these reviews is not always shared with the patient’s GP which can mean the patient can end up being asked the same things again.
How do we solve it?
- We want the cap on reviews to be lifted so pharmacists can help more people
- We want GPs and pharmacists to work more closely together, sharing information that will help to improve the care patients receive.
Our vision for the future
We’ll see more medication reviews, which means more people will get the right medication and will be better able to manage their illness. Then they will be able to live better and more of the things they want to do.
“As a community pharmacist, who is passionate about lung health, I am always looking for the opportunity to help patients with their medication, whether this is through counselling, MUR or supporting with self-care.”
Angela Chalmers, community pharmacist