Drive to Survive and Thrive: the Cystic Fibrosis Multi-Professional Team

Thursday, October 26, 2023

Respiratory Futures spoke to Jamie Duckers, Mari Lea-Davies, Charlotte Addy and Carwyn Bridges on behalf of the All Wales Adult Cystic Fibrosis multi-professional team (MPT). The team elaborated on the importance of the MPT in the management of Cystic Fibrosis, and the value it provides to patient care.

Providing high-quality care for cystic fibrosis (CF) involves a range of expertise. What specific roles in the multi-professional team (MPT) are often involved in CF care?

There is no “I” in TEAM, but there is a “ME”. The most overlooked member of the Cystic Fibrosis MPT is the person living with CF (PwCF). We have moved away from the “patient” passively staring up from their bed surrounded by scrubs and masks. The analogy we use is that PwCF should be the Formula 1 driver and the CF MPT are the support team to enable the PwCF to reach their goals.

Just like the Formula 1 support team the CF MPT needs to be agile, collaborative and display great communication skills and an ability to compromise.

The team is large and may include:-

- Nurses (clinical nurse specialists (CF, diabetes), ward nurses, healthcare support workers)

- Physiotherapists and physiotherapy/exercise technicians

- Dieticians and dietetic support workers

- Doctors (CF, General Practitioners, diabetes, fertility/ obstetric, hepatology, renal, bone, ENT, transplant, palliative care)

- Advanced CF Practitioners

- Pharmacists and pharmacy technicians

- Clinical Psychologists

- Social workers

- Youth workers

- Occupational therapists (less frequently working exclusively within CF)

- Research teams

- Service managers

- Clinic coordinators

- Data entry clerks

- Microbiologists and microbiology laboratory technicians

- Radiologists and radiographers

- Respiratory physiologists

- Trainees- of all the above disciplines

What are the benefits of involving the MPT in the care of people with CF?

Due to Cystic Fibrosis being a complex, multisystem disease the lived experience of PwCF does not separate the day to day management of symptoms and treatments neatly into the remit of different professionals. A workable and appropriate solution to the conundrum of chronic management is best found at the centre of a conversation between PwCF and an appropriate compendium of professionals. Being able to tackle multiple problems across multiple systems requires multiple people – with a multitude of skills – and the ability to work together to find the best solution for that individual.

CF multi-professional working allows the team to truly co-produce an individualised, holistic care plan based on evidenced based practice from each profession. This leads to better health outcomes and an improved overall quality of life for PwCF.

The rate of change within CF (management, and prognosis) over the last decade has meant that the positive advances in treatment have kept the team on its toes. This has been made simpler to manage by the cohesive nature of the MPT. We might not quite manage the 1.8 second tyre change but the CF team is certainly the envy of many services in the NHS.

MPT working also brings benefits to the healthcare providers by facilitating sharing of skills, supportive working environment and resilience. Developing each other’s skills and knowledge through multi-professional education allows everyone in the team to feel confident in addressing people’s needs – whether it is a youth worker helping support decision making in adolescence or a physio technician feeling more confident in managing diabetes during an exercise session.

How does MPT involvement change over a patient’s lifetime? Does it differ significantly with the transition from paediatrics to adulthood?

Formula 1 teams consider and prepare for all eventualities to give their drivers the optimum advantage. CF teams endeavour to do the same for the PWCF they work with. At different stages the needs of PWCF change and the ability of the team to adapt and provide the right support are key. For example, the “pit stop” may be a Transition from paediatrics to adulthood which involves a shift in the focus of care from family-centred to patient-centred, with an increased emphasis on independence and self-management. The composition of the MPT may change, and the services provided will adapt to the evolving needs of the individual. Proper planning and coordination are essential to ensure a smooth transition and continuity of care.  

A brake failure might be the new diagnosis of CF diabetes which needs a different skill mix to attend the Pit stop and ensure the driver is back on track and performing optimally.

The rate of change within CF (management, and prognosis) over the last decade has meant that the positive advances in treatment have kept the team on its toes. This has been made simpler to manage by the cohesive nature of the MPT. We might not quite manage the 1.8 second tyre change but the CF team is certainly the envy of many services in the NHS.

What are some of the main challenges facing the MDT in providing CF care in the UK?

Just like the Formula 1 team we need to be prepared for all driving conditions (CF care becoming more complex), the development and introduction of new technologies (novel therapies for CF), more drivers (expanding PWCF populations), new tracks (PWCF having new goals) and making sure we train the next generation of teams including empowering our drivers (PWCF). We have to do this to a high standard in a cost effective manner and present data on outcomes that are important to our “sponsors” (Registry/Commissioners). At the same time ensuring we are supporting our “drivers” to drive their own way – with care tailored to their needs. 

As an adult service, our biggest current challenges come from the increasing shift away from lives dominated by CF, in and out of the pits constantly, to a life unlimited by CF with world travel and podium finishes. Supporting a growing and ageing CF population through education, employment and parenthood into retirement, grandparenthood and older age is shifting the way we approach care, the skills our teams need and broadening the input PwCF need across a lifespan.

What are some innovative ways that the above challenges could be addressed? Have you seen any of these in practice?

Our major focus to date has been on adapting our care to fit the changing needs of PwCF including:

- Joint projects promoting wellbeing, activity and healthy eating including a virtual mindspa, an online HEEL programme and zoom Q&A sessions with the team

- Online exercise and wellbeing hub “Beam” with challenges involving both the PWCF and MPT to engender a feeling of moving towards a collective goal. This includes an annual Tour de France cycling challenge and a 12 days of Christmas creatively costumed exercise challenge.

- Widespread use of virtual clinics supported by remote monitoring including home spirometry and the Project Breathe dashboard.

- Creation of a team Twitter feed to share resources, increase communication – in Welsh and English – and promote Beam challenges

- Weekly multi-professional education sessions supported by in situ simulation teaching

- A joint art project with @fourinfour “You Scrub up well” helping PwCF show how it impacts their lives, how that has changed and share that with a wide audience