Heartlands Cystic Fibrosis Centre
Charity 1074745
Overview
Summary
Heartlands Cystic Fibrosis Centre appears to be a specialist, regionally oriented charity embedded around an NHS clinical service rather than a general-purpose health charity. Its role combines improving the care environment and resources for adults with cystic fibrosis with patient support, research and public education. The available evidence suggests an organisation using charitable fundraising to extend a clinical centre's capacity while also developing more participatory, lived-experience-informed support resources.
Operational geography
No operational geography is currently available for this organisation.
Areas of work
- Education/training
- The Advancement Of Health Or Saving Of Lives
- The Prevention Or Relief Of Poverty
Who they help
- Children/young People
- People With Disabilities
How they help
- Makes Grants To Individuals
- Provides Advocacy/advice/information
- Provides Buildings/facilities/open Space
- Provides Human Resources
- Provides Other Finance
- Provides Services
- Sponsors Or Undertakes Research
Discoveries involving this organisation
The Atlas has not published any Discoveries involving this organisation yet.
Observations
A charity built around a specialist clinical hub
The charity appears to function as an enabling layer around the Heartlands CF service: raising or directing resources toward facilities, equipment and patient-facing improvements at a defined centre serving a wider region.
Why it matters
This distinguishes it from charities that primarily deliver independent community services. Its influence may lie in strengthening a specialist NHS care setting and the experience of people referred to it across the West Midlands.
Show evidence
“To provide and assist in the provision of equipment and facilities for the relief of patients at the Heartlands Cystic Fibrosis Centre.”
Source:Charity Commission“The Charity provides a centre of excellence for the medical care of adult patients suffering from cystic fibrosis for the whole of the West Midlands region.”
Source:Organisation
Care improvement extends beyond clinical treatment
The organisation appears to treat quality of life, information and emotional support as part of cystic fibrosis care, alongside equipment and medical research.
Why it matters
This suggests potential relationships with patient-support, mental-health, education and peer-network organisations, not only healthcare funders or research bodies.
Show evidence
“It also promotes research into the causes and treatment of cystic fibrosis, provides counselling services and furthers public education about the condition.”
Source:Organisation“We are developing a new website to support a weight management programme designed specifically for adults living with cystic fibrosis.”
Source:Organisation
Signs of lived-experience-led resource development
The planned weight-management website may indicate a move from providing information alone toward co-produced support shaped by people living with cystic fibrosis.
Why it matters
This could make the centre a useful partner for organisations experienced in peer support, digital inclusion or participatory health-resource design.
Show evidence
“Many people with CF have told us that hearing from others with lived experience is one of the most valuable parts of any support resource.”
Source:Organisation“We would love your help.”
Source:Organisation
- How the charity is governed and operationally related to University Hospitals Birmingham NHS Foundation Trust.
- Whether its counselling, grants and research activity are delivered directly, commissioned or funded through partners.
- How many people use the service, and which West Midlands communities are reached or under-represented.
Remaining uncertainties
- Recent annual reports and accounts showing expenditure across equipment, patient support, research and fundraising.
- Service, referral and beneficiary data, including geography, age and lived-experience feedback.
- Information on clinical, voluntary-sector and research partnerships.
Additional evidence needed
Charity Commission profile
Activities
The Charity provides a centre of excellence for the medical care of adult patients suffering from cystic fibrosis for the whole of the West Midlands region. The Charity seeks to continually improve the centre for the benefit of patients. It also promotes research into the causes and treatment of cystic fibrosis, provides counselling services and furthers public education about the condition.
Charity objects
TO PROVIDE AND ASSIST IN THE PROVISION OF EQUIPMENT AND FACILITIES FOR THE RELIEF OF PATIENTS AT THE HEARTLANDS CYSTIC FIBROSIS CENTRE