Driving diagnosis: Spotlight on Dr Fenella Willis

Dr Fenella Willis spoke to us about her work to improve myeloma diagnosis

Other News // 27th September 2021

This Blood Cancer Awareness Month, we’re turning the spotlight on the dedicated band of consultants, GPs and laboratory scientists working away behind the scenes to break down the barriers to early detection, speed up referrals and ensure myeloma isn’t missed.

We spoke to Dr Fenella Willis, consultant haematologist at St George’s Hospital in London, Myeloma UK trustee and Chair of  the Myeloma UK Early Diagnosis Steering Committee, about her ongoing efforts to create a diagnostic roadmap for GPs and laboratories, and raise awareness of myeloma.

Who are you and what do you do?

I’m a consultant haematologist at St George’s Hospital in London specialising in blood cancers. My area of interest is myeloma.

What is your role in myeloma diagnosis?

Generally, we see patients when they’ve been referred through direct routes from their GP or through an emergency route. Our role is to determine whether a patient has myeloma and  decide what treatment is needed and when. We also need to assess which risk  group the patient  falls into by considering how advanced the myeloma is, the level of complications and the genetics of their myeloma.

Diagnosing myeloma involves a series of tests. There’s the general test that a GP would routinely do, which is your full blood count. Then there are more specialist tests: this would involve detecting and measuring paraprotein and light chains in the blood and/or urine, and detecting and measuring myeloma cells and their genetics in the bone marrow via a bone marrow biopsy. The final part is getting some imaging, which is very important in myeloma to assess the level of bone disease and to look for soft-tissue disease, or extramedullary disease, in other body sites. Putting all that together we can usually paint a picture confirming the diagnosis of myeloma and make a decision about a treatment plan.

What is most important for a timely diagnosis?

Number one is educating GPs.  A lot of work is being done with the support of Myeloma UK to help GPs understand what to look out for and who is more likely to have myeloma. One of the things that has come up time and time again looking at GP records is that anaemia is an early indicator of myeloma. Patients often start developing anaemia up to a year to two years before they develop other signs of myeloma. If a blood test doesn’t detect iron deficiency, we really need GPs to be doing other tests, including serum protein electrophoresis, to look for myeloma. Then there is MGUS (monoclonal gammopathy of undetermined significance). We know that all patients with myeloma have this pre-existing condition. The question is: Are we appropriately monitoring patients with MGUS and making sure  we pick up the early indicators that the disease might be progressing to myeloma before a patient gets significant symptoms? There is a lot of work being done to try and look at ways of improving the follow-up and detection of MGUS.

How have you been involved in the Myeloma UK early diagnosis work?

What’s happened in the myeloma world over the last 10 to 20 years in terms of the development of drugs is fantastic – patients are living longer and have a better quality of life. But what we still have not cracked and what’s still a big clinical problem is delayed diagnosis. Yes, once we’ve diagnosed the patient, we’re now getting better outcomes, but we’ve still got this delay in getting to the point of diagnosis. We’re still seeing patients with significant bone disease or kidney impairment and potentially ending up on lifelong dialysis. They’ve taken eight to 10 months to get to the point of diagnosis despite going back to their healthcare professionals on numerous occasions. There’s often a lot of anger from patients, which I can totally understand. But it’s not as straightforward as just saying, ‘Well, it was missed’. It’s not necessarily that it was missed, it was not really thought about because the symptoms took quite a lot of time to reach a critical point.

Can you tell us more about the educational resources you’ve been working on: who are they for and why?

When we first started the Myeloma UK Early Diagnosis Steering Committee, we worked with UK NEQAS, the National External Quality Assessment Service, to look at the quality of laboratory services. This included how they recorded abnormal serum and urine protein electrophoresis results and if they put messages out to GPs  or clinicians about those results. We found that there was a lack of consistency in terms of reporting and many laboratories weren’t flagging up significant abnormal results. So, we developed a traffic-light system for GPs that really simplifies how to interpret serum and urine protein electrophoresis. This GP Myeloma Diagnostic Tool gives very clear guidance as to which patients need an urgent referral, which patients need a two-week rule referral, which patients need a routine haematology referral and which patients don’t need to be seen in haematology at all. We’re also trying to give more support and guidance to the laboratories themselves and we’re currently working on developing guidelines to make sure we’re picking up cases and reporting them appropriately.

What does best practice look like?

Communication is really important. Having a laboratory flagging system that highlights to the haematologist in the hospital that there are abnormal results is key. One of the things that I can do from that is either pick up the telephone or email my colleague and say, ‘Look, this result has been picked up, they’ve got a mild kidney injury. I think that’s relevant. Do you want us to come and see your patient on the ward?’.  No one ever says, “Don’t come”.  They’re always delighted that you’ve picked it up. Equally, GPs really appreciate that communication. Our laboratory often phones the GPs directly to say, ”This patient needs to be referred under the two-week rule” or, “This patient needs to have an urgent appointment”.

What should healthcare professionals do to learn more about myeloma?

The Myeloma UK website is very useful. It has a wealth of information for healthcare professionals and nurses and it’s also very accessible for patients. The Myeloma UK Infodays are also very informative and allow patients to discuss their disease with other patients and network, which is very important.

What is the Myeloma UK Early Diagnosis Steering Committee (EDStC) and what does it do?

We developed the Early Diagnosis Steering Committee five years ago and the main focus is to improve myeloma diagnosis. We divided it into subgroups working on guidelines, follow-up and management, and clinical practice. There’s a number of strands but the overall remit is to try and work out ways in which we can start to chip away at this delay in diagnosis. There isn’t going to be one solution, there’s going to be multiple solutions to try and bring that delay down. It’s going to take quite a lot of work and development.

What has been the EDStC’s biggest project so far?

All the education  tools around GPs, the GP Myeloma Diagnostic Tool, the Myeloma and MGUS GP guide and the Macmillan 10 top tips. It’s all ongoing but that’s quite a big component of what we’ve done so far. There are also plans for a laboratory-based excellence programme,  similar to the Myeloma UK Clinical  Service  Excellence  Programme (CSEP) to promote best practice and get the best diagnostic pathway for patients. And there’s the work we did with Costello Medical to highlight the healthcare cost of delayed myeloma diagnosis in the UK. One of the difficulties to changing clinical practice is trying to understand and show the impact of a delayed diagnosis in terms of health economics. At the moment, we’re trying to see if we can get some large datasets to further populate this health economic model to better illustrate the financial cost of delayed diagnosis.

You can learn more about myeloma diagnosis, our Early Diagnosis Research Programme and the educational material available for HCPs on the Myeloma UK website.