Our vision for improving patient experience of diagnosis

People’s experience of diagnosis

‘Diagnosis’ is the process of identifying a disease, condition, or injury from its signs and symptoms. But the process of diagnosing someone is more than just figuring out what is clinically wrong with them. It is a process that is full of important learning moments for patients and the NHS.

At National Voices, we hear time and time again that diagnosis is not working for patients. Not only is the process of getting a diagnosis becoming increasingly challenging, but the wrap-around support is simply not there. This is having a significant impact on patient care and the journey experienced by many post-diagnosis.

Our report

In June 2024, we published a new report, People’s experiences of diagnosis, which brings together insights from people with lived experience and our members on the entire process of diagnosis – from trying to get an appointment for a diagnostic referral, to undergoing tests, and experiences post-diagnosis.

The report covers the themes of challenges in diagnosis, inequalities in diagnosis, and new innovation in diagnosis, before concluding with nine recommendations for improving patient experience of diagnosis.

These nine recommendations, taken from this extensive piece of work, were used to form Our vision for improving patient experience of diagnosis.

Our vision for improving patient experience of diagnosis

National Voices’ Vision for improving patient experience of diagnosis, supported by 58 of National Voices members sets forth nine key recommendations. If acted upon, National Voices believes these recommendations will significantly improve people’s experiences of not only diagnosis, but health and care more widely.

These nine proposals fall under three themes; what can be done in the short term, offering wrap around support for newly diagnosed patients, and what needs to happen in the longer term.

They are as follows:

1. Adjustments and adaptations to enable access  
2. Provide better support while waiting  
3. Listen to the patient  
4. Better communication around diagnosis  
5. Make sure people have a plan  
6. Provide access to support groups  
7. Collect better data to understand the drivers of diagnostic health inequalities, and act on it rapidly  
8. Upskill, coordinate and ultimately increase the workforce  
9. New innovations must have health equity embedded from the start 

Acknowledgements

Johnson & Johnson Innovative Medicine provided a grant towards this project and had no input into the project or this report. 

We would like to thank our member organisations and people with lived experience for sharing their insights and inputting on this work, including Age UK, Allergy UK, Alzheimer’s Society, Asthma+Lung UK, Compassion in Dying, Crohn’s & Colitis, Dementia UK, Diabetes UK, Endometriosis UK, Equally Well UK, Juvenile Arthritis Research, Macular Society, Myaware, National Axial Spondyloarthritis Society, National Rheumatoid Arthritis Society, Pancreatic Cancer, Parkinson’s UK, Prostate Cancer UK, Resuscitation Council UK, Rethink Mental Illness, Shine Cancer Support, Stickler Syndrome UK, Stroke Association, The Neurological Alliance, Thomas Pocklington Trust, Thyroid Trust, and others.