PIF responds to launch of Diagnosis Connect service

The Patient Information Forum (PIF) welcomes the news that some patients with long-term conditions will now be automatically be signposted to specialist charities at the point of diagnosis. Diagnosis Connect will refer patients with long-term conditions directly to trusted charities and support organisations. This is a welcome first step. However, we are now keen to work with DHSC to expand the scheme to include more PIF TICK certified organisations.

PIF chair Sue Farrington said: "Trusted information is not a luxury, it is an essential part of care – and those organisations that are best-placed to provide it should be central to this initiative. To ensure that signposting is safe, credible and inclusive, only organisations that meet recognised quality benchmarks – like the PIF TICK – should be featured. Otherwise, we risk directing people to information that may be incomplete, inaccessible, unverified, or inappropriate.

"We urge policymakers to take this opportunity to build a truly inclusive and evidence-led approach – one that supports all patients, especially those with rare and long-term conditions, with the credible and trusted information they need and deserve."

PIF looks forward to hearing more details about how organisations will be selected for inclusion in the referral pathway. We will also be working with our membership to lobby for the scheme to be expanded across a greater range of conditions.

Diagnosis Connect

Diagnosis Connect is due to be launched in 2026 and will support a quarter of a million people in its first two years. The initial focus will be on diabetes, mental health and lung conditions with plans to scale up over the next few years. The Government is initially working with The Richmond Group to pilot the service.

Many of the Richmond Group charities are already PIF TICK certified, including Asthma + Lung UK, Alzheimer's Society, Breast Cancer Now, the British Heart Foundation, Macmillan Cancer Support, Mind, The MS Society, Parkinson's UK, Rethink Mental Illness and Versus Arthritis.

Sarah Sleet, chief executive of Asthma + Lung UK, said: "We are delighted to see Diagnosis Connect being taken up by the government, an approach Asthma + Lung UK has already championed as a game-changer for people newly diagnosed with lung conditions." 

Mark Winstanley, chief executive of Rethink Mental Illness, said: "This initiative is an important step forward, strengthening the third sector’s vital role in complementing the NHS and ensuring people get the support they need."

Read more about Diagnosis Connect on the GOV.UK website here.