Myeloma UK helps pave the way for earlier diagnosis

Today we launch our report ‘A Myeloma UK Rapid Review of Non-Specific Symptom Pathways’ that looks at how NHS England’s Non-Specific Symptoms (NSS) pathways can help diagnose myeloma earlier.

Our Senior Policy Officer, Sarah tells us more about it.

I’m excited to share that today we are launching our report ‘A Myeloma UK Rapid Review of Non-Specific Symptom Pathways’ that looks at how NHS England’s Non-Specific Symptoms (NSS) pathways can help diagnose myeloma earlier.

Our supporters will be all too familiar with the barriers to an early diagnosis of myeloma, the non-specific symptoms often mean that it takes several GP visits before a referral happens. When the NSS pathways were announced in England we were hopeful that they could be a real game changer in improving early diagnosis.

Through our research, we found that there were variations in how the NSS pathways operate, and we’ve taken the learnings from this to shape our recommendations on how to make sure that the NSS pathways deliver for myeloma patients. This includes things like routine commissioning of a myeloma screening test but also additional support and education for GPs.

The time for action is now so we are calling for our recommendations to be enacted across the 21 Cancer Alliances in England and by NHS England because we know that people with myeloma can not wait. These recommendations can have a huge impact on improving early diagnosis. We will be meeting with key policymakers over the next year to talk about our report because together we can find ways to speed up diagnosis and reduce harmful delays.

I’m delighted to share a little bit more about this piece of work and our recommendations.

What are NSS Pathways?

NSS Pathways are an alternative diagnostic route, brought in by NHS England, that can be used by GPs when people present with vague and non-specific symptoms.

It aims to:

  • Speed up diagnosis.
  • Reduce the number of times people have to visit their GP before referral.
  • Reduce the number of people diagnosed through A&E who are often diagnosed at an advanced stage.

The pathways offer a diagnostic route for patients who otherwise may not have met existing criteria for an urgent referral.

What did we do?

We wanted to make sure that NSS pathways are working for myeloma patients, so we looked at how they are currently operating at four cancer alliances across England.

Our research found some variation in the way NSS pathways are run, which is mostly due to the flexibility given to Cancer Alliances to adapt to the needs of local populations. Key differences include how the pathway is delivered and the availability and use of myeloma-specific pre-referral tests.

We then held interactive workshop sessions with haematologists, clinical nurse specialists (CNS), GPs, pathway managers and patient representatives. Some had expertise in the design, implementation, and evaluation of NSS pathways. Others were more familiar with existing routes to myeloma diagnosis.

In the workshops we considered the research findings. We focused on areas which might support the earlier diagnosis of myeloma via an NSS pathway and discussed the potential barriers and benefits. Three specific areas stood out as a starting point for discussion. These three areas were haematology input into the team providing the NSS pathway, GP awareness of the NSS pathway and adding a myeloma screen to the bundle of NSS pre-referral tests.

The workshops highlighted potential challenges to introducing a myeloma screen as a pre-referral test before an NSS pathway referral as well as the overall advantages of its inclusion.

One of the difficulties for myeloma is GPs not recognising vague symptoms as an indicator of a potential diagnosis. Introducing a myeloma screen into the pre-referral testing would assist GPs by reducing the diagnostic burden for them having to ‘think’ of myeloma as a possible diagnosis.

Introducing a myeloma screening test is one of several recommendations we have derived from insights gained by our research and the workshop discussions.

Below further recommendations from the report are outlined for NHS England and Cancer Alliances to consider in order to meet the critical diagnostic need of myeloma patients.

As well as the availability and routine commissioning of a myeloma screening test prior to referral to an NSS pathway, these include:

  • Access to myeloma specific NSS data – published across the 21 cancer alliances, this is essential to validate the efficacy of introducing myeloma specific interventions in NSS pathway design. Ensuring standardised and optimised myeloma diagnosis.
  • Educational support for GPs and health care professionals in relation to myeloma diagnosis, NSS pathway awareness and support for the interpretation of test results.
  • Increased collaboration between NHS England, cancer alliances and the third sector to collaborate and share data, best practice, and outcomes to improve the NSS pathway.
  • Commitment from NHS England to finance and resource NSS pathways to ensure future sustainability.

Whilst our project focused on the diagnostic unmet need in myeloma, some of our recommendations have the scope to support the earlier diagnosis of all cancers.

What are patients’ perspectives of being diagnosed with myeloma via an NSS pathway?

We spoke to two patients who were diagnosed with myeloma via an NSS pathway to learn more about their referral and diagnosis experience.

The patients we spoke with considered their diagnosis via this route to be timely and praised the streamlined service and support provided to them.

“I would consider I had quite a timely diagnosis, the diagnosis was very quick…”

Anonymous – patient diagnosed by Leeds Teaching Hospitals NHS Foundation Trust NSS Service.

The above patient commented that they would have attended A&E if the GP had not referred via this route for further investigation. This highlights the need for this pathway as a diagnostic alternative for patients who do not fit the criteria for an urgent suspected cancer referral.

Another patient praised the pathway and the NSS clinical nurse specialist who acted as a single point of contact whilst they had investigations.

“I would endorse them (NSS pathways), my clinical nurse specialist went through the thread of the needle – she wasn’t going to let go until they found something…”

Anonymous – patient diagnosed by Calderdale and Huddersfield NHS Foundation Trust NSS Service.

Both patients indicated they would advocate for more awareness of the existence of NSS pathways. They also agreed a campaign aimed at raising the awareness of the vague symptoms which could be associated with cancers like myeloma is important to increase symptom awareness amongst the public.

Are there NSS pathways in the devolved nations?

There are non-specific symptom pathways operating in Wales, Scotland and Northern Ireland. Although the pathways have slightly different names and variation in how they operate, all are designed to offer an alternative diagnostic route for patients with vague and non-specific symptoms.

  • Scotland – Rapid Cancer Diagnostic Services (RCDS)
  • Wales – Rapid Diagnosis Clinic (RDC)
  • Northern Ireland – Rapid Diagnosis Centres (RDC)

Wales has been the first of the devolved administrations to publish an evaluation of the pathways in December last year, with Scotland publishing an evaluation in February. The evaluations share insights which correlate with key findings from our project at Myeloma UK, such as concern over the future sustainability and funding of pathways, data access issues and lack of GP awareness of the pathway.

We know NHS England have been evaluating how NSS pathways are operating nationally over the last few years and we eagerly await a final evaluation report.

We are calling for our recommendations to be enacted by NHS England, cancer alliances and NSS pathway providers to ensure that the innovative NSS pathway is an effective alternative route to diagnosing myeloma early. Over the next year, we will be sharing this with key policymakers to encourage them to take on our recommendations.

Read the ‘A Myeloma UK Rapid Review of Non-Specific Symptom Pathways’ report to learn more about our recommendations.

What is a cancer alliance?

Cancer alliances are local partnerships between hospital clinicians, GPs and other local leaders who collaborate to improve cancer care and services. They work with health and social care organisations across a particular area. There are 21 in England.

What is a myeloma screen?

Some GPs have the option to request a ‘myeloma screen’ which is a bundle of blood tests, while others need to request a combination of individual blood tests to help identify abnormalities which could indicate myeloma.

Close-up photograph of a hand holding a mobile phone.

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