“Homecare should make life easier, not harder”: Reflecting on experiences of homecare medicines services for people with CF

Last year, Cystic Fibrosis Trust submitted evidence to a parliamentary committee in the House of Lords as part of an inquiry into homecare medicines services. 

87% of those who responded to our survey experienced problems with the home delivery of their medicines for CF. 

These difficulties are adding to an already high treatment burden. One respondent said, “it’s another thing that we must deal with and sort out, on top of everything else. It doesn’t make it easier in my opinion - quite the opposite.”  People with CF and their families felt the homecare medicines services lacks understanding about the complexity of CF. They were concerned about the impact on their specialist CF multidisciplinary teams who ensure people are not left without vital medicines and believed that a lack of accountability has allowed the poor service to persist for too long. 

A lack of communication was highlighted by people with CF as a key issue. Problems include prescription medicines being delivered when they haven’t been ordered, difficulties contacting the homecare medicines services via phone and email, and a lack of understanding of the complexity of CF medicines. People with CF also highlighted that deliveries can be unreliable, with items and deliveries regularly missed as well as late deliveries and the lack of flexibility with timeslots. They told us that this affects day-to-day life and adds to the burden of living with CF.

Last year, the parliamentary committee published their report, Homecare medicines services: an opportunity lost, which references our submission and the experiences of people with CF. The committee heard evidence which included incidents of delays and errors by companies providing homecare medicines services, showing that the system is not working as it should be. 

The report suggests several recommendations to improve experiences of homecare medicines services, such as:

• a consistent set of performance metrics to track different providers and understand the scale of the problem for patients
• a review of the regulatory environment
• increased transparency on the patient experience.

The government have published their response and accepted some of the recommendations, such as making homecare medicines services more transparent and accountable by naming a senior NHS official as responsible for the system nationally. 

Cystic Fibrosis Trust has been working with other charities and clinical membership bodies and have published a joint statement here.

We will continue to ensure the experiences of people with CF are continued to be heard by key stakeholders as work continues. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects almost 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.