Research has found that for many patients diagnosis is too slow, so an alliance of patients, professionals and charities is campaigning for earlier action

An e-petition is fast gathering signatures from patients, practitioners, charities and healthcare professionals across the UK, all calling for concerted action to ensure patients are diagnosed early enough to make a real difference to the quality of their lives.

Reviews underpinned by a strong body of clinical research over the past 10 years by organisations including the National Audit Office and the King’s Fund have shown that for far too many patients, diagnosis is slow, often leading to higher financial and non-financial costs to patients, their families, the NHS and the taxpayer.

Early diagnosis means therapies and interventions have a better chance of success, and can cost the NHS less in the long-term. It also improves patient outcomes. This petition aims to galvanise the considerable support out there for more focus and emphasis on the value of early diagnosis.

The Early Diagnosis Alliance calls for:

  • Secured ring-fenced funding for early diagnosis implementation for which NHS trusts will be held accountable
  • NICE to develop a quality care standard for early diagnosis across all disease areas
  • The Health Select Committee to investigate the barriers and possible solutions to implementing a system-wide early diagnosis approach
  • A discussion in Parliament on the issue of poor implementation of good practice in early diagnosis nd
  • Reduction in the length of time from when a patient first presents to the GP/hospital to when a formal diagnosis is made. For example reducing the average 7.5 year diagnosis time for Endometriosis, a painful gynaecological condition which affects 1 in 10 women during their reproductive years.

The e-petition is being led by Endometriosis UK and a collaboration of organisations and charities including:

  • Stroke Association
  • Epilepsy Society
  • MS SocietyNational Rheumatoid [NRAS]
  • Kidney Research UK
  • Arthritis and Musculoskeletal Alliance [ARMA]
  • Samantha Dickson Brain Tumour Trust
  • Sickle Cell & Young Stroke Survivors
  • Alzheimer’s Society
  • Patients Information Network [PIN]

The petition came about through discussion between GE Healthcare, Endometriosis UK and a number of other disease campaigning groups about how to drive the importance of effective implementation of an early diagnosis approach up the Department of Health and NHS priorities.  

Endometriosis UK has spearheaded the campaign because of the disease’s 7.5 year average diagnosis time during which patients can suffer debilitating pain, depression and fatigue affecting their quality of life and their ability to work or play an active role in their communities.

Even though evidence showing that early diagnosis of disease is more cost effective, and better for patients and the finances of a health system, the uptake of improved clinical pathways that begin with early diagnosis is slow and inconsistent.

Aiding efficiency

The sustained financial pressure on the NHS, combined with the implementation of reforms driven by the Health and Social Care Bill, could exacerbate short-term cuts to diagnostic services and further delay capital expenditure on diagnostic technologies. 

Clearly, making up to £20bn of savings by 2014-15 is a monumental challenge for the NHS. The quality, innovation, productivity and prevention drive will push developments in the right areas, but all too often the need for immediate financial savings leads to the final ‘P’ - prevention – and even a third ‘P’, the patient, being sacrificed.

Earlier diagnosis can lead to conditions being prevented in their entirety. Where prevention is not possible, in cases like rheumatoid arthritis, early diagnosis can still increase the likelihood of remission and lead to a far improved outlook for patients rather than allowing them to develop a debilitating long term chronic condition.

In July 2011, GE Healthcare wrote to 650 MPs with a briefing by Karen Taylor, the former director of value for money studies at the National Audit Office. It highlighted the fact that the intense focus on reforms was at risk of distracting the health service from making crucial changes to care pathways geared towards diagnosing patients earlier.

There are 2 million women with endometriosis in the UK, 300,000 people are annually diagnosed with cancer, 150,000 suffer a stroke and 32,000 are diagnosed with rheumatoid arthritis. In many of these cases, earlier diagnosis would lead to better outcomes for sufferers and lower costs of medical intervention.

By better patient outcomes, we’re talking about the time between first presentation and first accurate diagnosis.

Saving money today by cutting spend on the best diagnostic technology will lead to increased spending for the NHS tomorrow as more aggressive, late and often ineffective therapies are prescribed to patients who suffer all the more along the way because they have not received an early, accurate diagnosis.

System-wide approach

Together we are calling for a system-wide, disease agnostic approach to early diagnosis that puts the patient first and measures short term financial savings against a long term perspective. We believe earlier diagnosis will benefit the NHS financially and most importantly will improve the quality of lives of those sufferers who as a result of earlier diagnosis have been prescribed more effective, tailored and personalized therapy.

As the report by Karen Taylor concludes, commissioners are currently in survival mode. As the reforms take place, and the financial pressures continue to bite, there is an urgent need to ensure that the health service clearly grasps and acts on the barriers to patients obtaining an early diagnosis and the advantages it entails for patients and the economics of both the healthcare system and the wider economy.

The Early Diagnosis Alliance e-petition 

GPs and Hospitals should be better supported to be able to diagnose people more quickly.

We are asking the government to invest in the diagnostic tools across all diseases to ensure that we, the public, do not suffer undue pain and are diagnosed early enough to make a real difference to the quality of our lives.

There should be greater education of healthcare professionals to develop a better awareness of the range of possible causes of the symptoms particularly of the common chronic conditions.

Early detection and diagnosis of disease aims to prevent unnecessary pain, suffering and in some cases permanent disability or death by ensuring effective treatment and intervention. Delays in diagnosis can lead to an increase in the cost of treatments and a decrease in patients’ contribution to society. Therefore early diagnosis makes better economic and social sense.

We therefore urge the government to ensure that necessary diagnostic tools and improved education to enable early diagnosis in all disease areas is at the forefront of NHS care.

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