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Improving patients’ experiences of diagnosis

While people will respond and cope in different ways, being diagnosed with a health condition, whether treatable or not, can be a life-changing time. ‘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.

The UA is a member of National Voices, a coalition of more than 200 like-minded charities, whose recent report, People’s Experiences of Diagnosis, reveals that the diagnosis process simply isn’t working for many patients. February 2024 statistics, for example, show that the proportion of patients waiting six weeks or more for diagnostic tests is now 20.8%. Not only is the process of getting a diagnosis increasingly challenging, but declining access to wrap-around support is impacting on patient care afterward.  

On 27 June, the coalition published a series of follow-on proposals based around three key themes; together they make up our collaborative vision for improving patients’ experiences. After all, diagnosis is a process filled with anxiety and fear of the unknown, so it is important that people feel well supported and empowered throughout their journey.

Our vision

Theme 1: What can be done now? Making best use of existing provisions

  • Adjustments and adaptations to enable access – People facing health inequalities must not have an inferior diagnosis experience. Instead, it must be accessible and appropriate to the individual, in compliance with the Accessible Information Standard
  • Provide better support while waiting – unsurprisingly, the priority for many patients is to reduce waiting times for appointments
  • Listen to patients – there needs to be a shift in culture among healthcare professionals towards listening to, and believing, patients

Theme 2: Offer wrap around support for newly diagnosed patients

  • Better communication around diagnosis – improving the way that professionals communicate diagnoses, and continuity of care are key priorities
  • Make sure people have a plan – giving people a clear plan of what to expect is really important in reducing stress and enabling people to cope with their conditions better
  • Provide access to support groups – patients should routinely be referred to specialist organisations including peer support groups and patient organisations like the Urostomy Association

Theme 3: What needs to happen in the longer term?

  • Collect better data – agencies must be better at collecting data so a deeper understanding can be developed about the true depth and breadth of patients’ concerns, and to mitigate against health inequalities
  • Upskill, co-ordinate and increase the workforce – improving GP awareness, particularly of rarer conditions, is required and a more specialist workforce created to undertake diagnosis of less common health concerns
  • Embed health equality in all new innovations – innovations such as Community Diagnostic Centres, and the move into AI, must recognise the potential impact on health inequalities at their inception and have a clear plan to address them.

It is so important that health and social care leaders understand the real-life concerns of patients. We stand alongside other National Voices’ members in believing that these proposals would make a significant difference to people living with mental and physical health conditions and disability.