Living with a lung condition: supporting patients and families

We want every person with a lung disease to have a personalised plan of care and support, which includes all the information about their condition, treatment and management. And we want families and informal carers to be given the choice to be included.

A personal view: getting information and support from others

Sarah and William

Sarah Johnson’s sons Thomas, 13, and William, 3, have asthma. “On quite a few hospital visits we were told William had bronchiolitis or a viral-induced wheeze,” says Sarah. On a later visit a doctor said he needed asthma medicines and put him on a preventer inhaler, reliever inhaler and a medicine to keep airways open.

Thomas was diagnosed with asthma after a year or so of getting pains in his chest, mostly after or during exercise. One day when he was 12, he had particularly bad pains in his chest when he was playing rugby and started panicking. “I took him to hospital and he had ECG tests done for his heart, but then the doctor tried him with a blue reliever inhaler and it made an almost immediate difference,” says Sarah. “He used it for a while but needed it more and more often, so the doctor decided to put him on a preventer inhaler as well."

The children’s symptoms tend to be severe chest pains, and William’s wheeze sounds like a little whistle. “I’ve realised that asthma is more than just struggling to breathe,” says Sarah. “It is about having inflamed or sensitive airways that need to be soothed by preventer inhalers so they don’t react to triggers with symptoms like wheezing and a tight chest or coughing at night.

“I wish my doctor had recommended the Asthma UK website when they were first diagnosed as knowing there are other parents out there going through similar experiences is really helpful. Understanding more about asthma helps to build my confidence when I’m helping them deal with asthma symptoms.”

Too many people are left in the dark about critical aspects of their treatment and care. They feel they are not being listened to and left out of conversations about what is being planned for them. This limits the control patients have over their day-to-day lives. It also makes it more difficult to manage and cope with their own symptoms.

Helping patients find out about their care

The British Lung Foundation COPD Patient Passport helps patients find out whether they are receiving the care they are entitled to, and what they should do if not.

It takes 10 minutes to complete and the information provided is entirely confidential. Patients answer ‘yes’ or ‘no’ to a series of questions about their care. At the end they receive a personalised passport which can be shared with their doctor or nurse.

The passport tells patients about the care they should expect and offers a guide to what to ask during consultations. It also helps to develop a picture of current patient experience.

The patient passport was developed in conjunction with the Primary Care Respiratory Society (PCRS) and members of British Lung Foundation Breathe Easy groups. The printed passport was distributed to every GP practice in the UK.

Plans should be available to patients in different formats, and updated with any new information. People should be able to give permission for families and carers to access the information they need, and to update the plans when they want.

We want it to be easier for people with a lung disease, their families and their carers to join support groups. Meeting other people who share and understand their condition and having face to face access to advice can make a big difference.

The benefits of a support group

Malcolm and Steve
Malcolm (left) and Steve (right)

People living with a chronic lung disease often feel lonely and isolated. Support groups are a great way to meet other people with the same disease, learn more about your disease and support each other emotionally.

Action for Pulmonary Fibrosis facilitates a network of 70 support groups across the UK. Groups are organised by health care professionals and patients and generally meet every two months. Meetings vary in size from 20 to 60 people and take place in hospitals or community and church halls. Most meetings have an outside speaker and include time for discussing and socialising. Talks may be on clinical topics, such as oxygen therapy, or a wide range of other topics.

Malcolm Mason, 71, had been a member of the Papworth Hospital support group for more than five years and  joined the new Mid-Essex support group in Chelmsford. He said: "At support group meetings you meet people who are on the same journey as you and can support each other. Being told you have IPF is devastating but if you come to a support group and put out your hand, somebody with hold it. We are all here for each other." Sadly, Malcolm has died since sharing his story. 

Steve Jones, 69, an IPF patient for eight years, says he was initially a bit scared of going to a support group, but came out with a spring in his step. “People were so warm and friendly,” he says. "I learnt so much about IPF and how to live with the disease. It was really empowering."

The benefits of a support group

The BLF Integrated Breathe Easy (IBE) group in Eastbourne, East Sussex, has 25-35 regular members.

The group’s chair is Kim Cole, who lives with a long-term lung disease.

Kim says that one of the group’s great strengths has been that, through the IBE model, they work very closely with NHS partners. The group is working with physiotherapists and Brighton University to develop an ongoing programme to follow on from pulmonary rehabilitation. The group also engages with a varied range of speakers, like:

  • pharmacists
  • inhaler technique specialists
  • herbalists
  • physiotherapists
  • welfare advisers
  • mental health experts
  • stress incontinence nurses

The group, now in its third year, meets monthly. Singing is a very popular activity among group members. They also have the benefit of their own allotment with raised beds, which is accessible for members with mobility problems. Once a year the group has an annual outing and a popular Christmas party. The group is self-funding and raises money for the British Lung Foundation.

Kim says that co-ordinating the group is time-consuming, but the positive impact for members makes it all worthwhile. “Living with lung disease can be isolating, frightening and lonely, so members really enjoy meeting other people who understand the impact that living with a lung condition has on life.”

Measures of success

Data need: Patient-reported experience of whether they have a personalised care and support plan to be measured in proposed new patient survey, with a baseline established within one year.

An increase from 43 to 80 in the number of Integrated Breathe Easy groups supported by commissioners, to be monitored by the British Lung Foundation.

An increase in the number of patients accessing an Integrated Breathe Easy group, with individual groups required to collect and report data.

An increase from 70 to 100 in the number of pulmonary fibrosis support groups, to be collected by Action for Pulmonary Fibrosis.