The role of an Advance Care Planning Clinical Nurse Specialist
If you want to find out more, or are interested in developing RDCs at your hospital, please contact the CSEP team at csep@myeloma.org.uk
Danish research (1) has shown that cancer patients who initially presented with vague, non-specific symptoms, took longer to diagnose, had worse outcomes and a poorer experience than those with site specific symptoms. NHS England has funded RDCs as a four-year pilot to improve the diagnostic pathway for patients presenting with non-specific symptoms. Historically, as there was no established pathway, these patients often went back and forth between primary and secondary care, leading to delays in diagnosis, higher rates of late, or emergency, stage presentation and poorer patient outcomes. RDCs were introduced to provide a clear route of referral and expedite the process from referral to diagnosis so that patients who do have cancer are referred onward to receive treatment as soon as possible. The RDCs support the NHS Long Term Plan and the 28-day Faster Diagnosis Standard.
Rapid Diagnostic Centre (RDC) Advanced Clinical Practitioner, Christopher Blackham, and Service Improvement Lead, Carole Goodchild, describe the role that RDCs play in diagnosing patients experiencing non-specific symptoms. Both are based at the Friarage Hospital, Northallerton, part of the South Tees Hospitals NHS Foundation Trust.
Could you explain how the service started and what prompted it?
Initially we commenced a “vague symptoms” pilot for one year in November 2018. Following successful evaluation of our pilot, and that of the national trial (2), we established the South Tees RDC NSS pathway in 2020.
Our non-specific symptoms pathway is secondary care led and locally referred to as the RDC. We encourage referrals to be made for patients who present with vague symptoms such as weight loss, fatigue, nausea, loss of appetite, abdominal or bone pain. More importantly, we encourage clinicians to refer to us when they are worried about the patient and have a “gut feeling” that they may have cancer.
To date, we have received over 2,700 referrals, with 13% being found to have cancer. 13% is greater than the national average for RDC NSS pathways and we attribute this to our accepting referrals from a wide range of referral sources, including hospital wards, emergency departments, urgent treatment centres as well as those from primary care. We also encourage internal referrals from colleagues who are concerned about patients under their care. Our service model is to provide patients, colleagues and GPs with a single point of contact from referral, through the diagnostic pathway to discharge.
Can you briefly outline the RDC pathway?
Within two weeks of the initial referral, patients are telephoned by a member of the RDC team to discuss their symptoms, review any test results, and decide if a CT scan is needed before their clinic appointment.
Patients are then seen face-to-face in clinic, by either a senior nurse or doctor. During their first visit, patients are given 45-minute appointment times, this allows time for a full clinical history and examination. Once a patient’s tests results have been received and reviewed at the multidisciplinary team (MDT) meeting, an RDC team member will contact the patient with next steps. If patients are diagnosed with cancer, they will be referred to the appropriate specialty MDT team. If cancer is excluded, but we are able to confirm other diagnosis, patients will be referred onward to the appropriate specialist team/s for onward care and management. Once we are able to rule out any sinister cause for symptoms we will discharge patients back to their GP for continued care.
How has the service developed since starting?
The service has evolved and has been refined since we started. GPs are asked to conduct initial tests (known as filter function tests) to first try and determine a cause of the patient’s symptoms. The filter function tests have been adapted locally to include myeloma screening, after some myeloma diagnoses were initially delayed. Unlike some other RDCs, we will still see patients even if not all of the filter function tests have been reported. We feel this works well as patients are on a diagnostic pathway rapidly and they can contact us if they have any questions or concerns. If a filter function test does come back indicating a site-specific issue (e.g. a raised Prostate Specific Antigen or positive Faecal Immunochemical Test), patients can then be redirected to the appropriate referral pathway quickly.
In the last year, we have opened a satellite RDC clinic in Guisborough to improve accessibility for those patients based in East Cleveland, or who are unable to travel to Northallerton. We are also looking to provide a further outreach RDC clinic in central Middlesbrough, where there are more health inequalities, and to increase local access to the service.
Whilst cautious of implementing an open self-referral service, the team have attended community meetings, farmers markets and have left business card in places to give patients access to a phone call. These actions have been triggered by late presentations of advanced cancer in harder to reach members of the population, such as the farming or traveller communities. These interventions have prompted a small number of patients who have self-referred to the service.
Another key part of the RDC’s development has been getting involved in clinical trials. We were privileged to have supported the NHS-Galleri research trial and to be part of the cancer biomarker trials, which is an ever-growing field of research.
What resources and staffing are required to run the service?
The service is predominantly nurse led. There are a small team of cancer care co-ordinators and administrative resource to support both the clinicians and patients.
Despite being the only non-medically led cancer pathway in the trust, we are well supported by clinicians within our multidisciplinary team, who provide a wide range of specialist expertise. This helps us identify a broader range of problems other than cancer, including pancreatic insufficiency, large vessel vasculitis, infective endocarditis, spinal canal stenosis, musculoskeletal problems, as well as mental health problems and dementia. Currently, of the non-cancer patients, almost 50% of our patients receive a confirmed diagnosis of another illness.
What impact has the service had on patients, families/carers and colleagues?
The service has had a positive impact on patients and their families, and their feedback has been overwhelmingly positive. Patients benefit from having rapid reassurance, particularly if they have had cancer in the past and are worried about a recurrence. As they are only on the pathway for a short period of time, patients feel like their journey to an answer has been significantly shortened. Having a single point of access for all tests is also beneficial, and the team keep patients regularly updated on test results, which is well received. Patients are encouraged to telephone our helpline if they have any questions or concerns, and their families can also be updated if given consent by the patient.
As initial appointments are 45 minutes long, patients feel like they are being listened to during this time. Giving patients extended time to discuss their issues relieves the pressure on GPs, who may need 4 or 5 separate appointments to cover everything. We have a good relationship with our local GPs and arrange regular educational sessions outlining what we do and how to access us. We also promote the use of our helpline, which is open to GPs to discuss any patients if they are unsure whether to refer to the RDC.
Can you offer any advice for other hospitals wanting to provide a similar service?
With the current high demands on the NHS, our service is lucky as we have proactive people who believe in the process and who don’t think of an RDC as a “test and discharge” service. The key is to engage clinicians, who have a broad experience of caring for patients with a range of symptoms. It is important that teams at RDCs take a holistic approach, looking at multiple issues and making sure there is a clear plan in place, which is clearly communicated. It is also important that if a significant diagnosis is not found that they receive the right follow up e.g. when a patient with weight loss is found to not have cancer, we would encourage them to keep a food diary, weigh themselves regularly and, if indicated, we would refer them onto the dietetics service for further input. We feel this holistic approach is very valuable for patients.
We are also very lucky to have passionate and enthusiastic team, who regularly speak to hospital teams about the benefits of referring to our service. This has worked particularly well when colleagues are discharging patients from hospital. Referring to the RDC on discharge ensures that any follow up investigations are not missed and concerns of any cancer are followed up. We work closely with the hospital teams so that they know what the final diagnosis of their patients were and to feedback for their learning.
Another key factor in our success has been having excellent relationships with colleagues on site. This is particularly true of the hospital’s radiology team, who have engaged well when we ask for short-notice appointments or further information regarding a patient’s scan results. They are more than happy to provide further advice and clarification if needed and consultant radiologist input to our MDT has been essential.
It is also very important not be too strict in terms of referral criteria. We would always rather see patients than have them attending multiple GP appointments or going to A&E for help with their symptoms. We never reject a referral without giving advice to the referrer. Where patients are not suitable for our pathway, we will always redirect with a recommendation such as a referral to a more appropriate service, watchful wait, or a trial of treatment, with the allowance for GPs to call back for further clarification if needed.
2024 is an exciting time our RDC as we transition from the 4-year pilot of NSS pathways to becoming a business-as-usual service within the NHS. We look forward to continuing to grow and establishing ourselves fully as a commissioned service.
Christopher Blackham, RDC Advanced Clinical Practitioner (ACP), Friarage Hospital
Carole Goodchild Service Improvement Lead, Friarage Hospital
South Tees Hospitals NHS Foundation Trust
There is variation in the delivery and design of Non-Specific Symptoms pathways due to the flexibility given to Cancer Alliances to tailor pathway models to their population and service needs. NSS pathway models can be primary or secondary care based.
Friarage Hospitals RDC is an example of a secondary care based NSS pathway model.
At Myeloma UK, we undertook a rapid review of NSS pathways and compiled accompanying recommendations to support NHS England and NHS Cancer Alliances to deliver early myeloma diagnosis. Read the ‘A Myeloma UK Rapid Review of Non-Specific Symptom Pathways’ report to learn more about our recommendations.
Citations
- Vedsted P, Olesen F. 2015. A differentiated approach to referrals from general practice to support early cancer diagnosis – the Danish three-legged strategy. Br J Cancer 112 Suppl 1: S65-9
- https://www.cancerresearchuk.org/health-professional/diagnosis/accelerate-coordinate-evaluate-ace-programme/non-specific-symptoms-pathway
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