What the recent general election means for the CF community

The new government is prioritising swift reforms aimed at improving access to healthcare, aligning closely with our mission to ensure that people with CF have access to the right care at the right time.  One of the key initiatives announced is an increase in the number of weekly NHS appointments available, particularly during evenings and weekends. We welcome the pledge to reduce waiting times, but its success will rely on meaningful engagement with the medical workforce and resolving ongoing disputes with healthcare professionals.

Localised healthcare services

The government’s shift towards more localised healthcare services referred to as the Neighbourhood Health Service, is designed to deliver care within local communities, to detect and address health issues sooner. New services like the Community Pharmacist Prescribing Service aims to make healthcare more accessible and efficient for all. For people with CF, this could mean more convenient access to necessary medications and support in their local community.

Mental health and workforce initiatives

Expanding mental health services is another critical area of focus. The government’s commitment to strengthening the mental health workforce is essential for providing comprehensive care to people with CF, who can often face additional mental health issues alongside physical health challenges. Significantly, the implementation of a long-term workforce plan for the NHS, including regular and independent workforce planning is vital for training and retaining the specialised psychologists needed for high-quality multidisciplinary CF care.

Air quality and CF

Government action on air quality could have a profound impact on those with CF. Poor air quality exacerbates respiratory conditions, and the government’s commitment to improving air quality could lead to better health outcomes for people with CF. We welcome steps to phase out smoking, the biggest cause of lung disease in the UK, and the potential reduction in deaths from lung conditions. 

Advancing science and innovation

The government’s focus on enhancing the UK’s science and innovation sector provides unique opportunities for further advancing CF research and treatment. By advocating for policies that support research and innovation, we can help accelerate the development of new treatments for CF.

Supporting carers

We must not overlook the critical role of unpaid carers, many of who support people with CF. As our population ages, it is vital that the government prioritises the needs of millions of unpaid carers. These carers, often facing financial difficulties and significant stress need more support and recognition to continue their invaluable work.

Engaging with the new government and parliament

We have launched an intensive advocacy campaign to ensure the needs of the CF community are addressed by the new government:

• Engagement with Key Ministers: We have written to the Secretary of State for Health about critical issues including access to modulator therapies for those with rare mutations, the introduction of free prescriptions for people with CF in England, addressing the gaps in the recruitment and retention of psychosocial professionals in CF multidisciplinary teams, and the interrupted supply of pancreatic enzyme replacement therapies such as Creon. 
   
• Social security reforms: Our correspondence with the Secretary of State for Work and Pensions includes advocating for the reform of social security to remove unnecessary personal independence payment assessments, increasing statutory sick pay to reflect the real living wage, and ensuring that assessments are informed by professionals with an understanding of conditions like CF.
   
• Environmental health advocacy: We have reached out to the Secretary of State for the Environment to address toxic air pollution and propose a lower alert threshold for air quality warnings to help those with respiratory conditions make better-informed decisions during periods of high air pollution. 
   
• Parliamentary engagement: We have engaged with backbench MPs and Peers regarding Creon supply issues, rallying support across the political spectrum to address this pressing issue our community is facing. 
   
• Strategic opportunities: We will take advantage of influencing opportunities around the upcoming autumn budget and will actively participate in discussions the review of the NHS by Lord Darzi that the new government has announced. These platforms will be critical for advocating for the sustained and increased investment in healthcare and research. 

With the legislative agenda taking shape, we will remain flexible and proactive. We will monitor all announcements and policy developments to make sure the voices of the CF community are heard. For example:

1. The proposed Employment Rights Bill aims to strengthen statutory sick pay and make flexible working the default from day one, providing opportunities to lobby for the further reforms we are campaigning for.
2. Swift action on the Tobacco and Vapes Bill aligns with our call to stop marketing nicotine products to children and for further research into the health impacts of vaping.
3. We will work with MPs on the Renters’ Rights Bill, which could help improve living conditions for people with CF in rented accommodation, enforcing standards and protecting tenants from no-fault evictions, which is crucial for those in vulnerable housing situations.
4. The Children’s Wellbeing Bill will also provide a chance to improve education about CF in schools and ensure that children with CF receive the psychological support they need.

How you can help

Your voices are powerful in shaping policies that affect CF care. We encourage you to reach out to your local MPs, share your own experiences with them, and advocate for the needs of the CF community. For further information and tips visit campaigning hub.