Conversations at the recent British Sarcoma Group conference in London (an excellent event) brought up a growing problem with a recent change in the guidance for GPs considering potential cancer symptoms. The idea is that when a GP has suspicions about a soft-tissue lump he can order a direct ultra-sound scan. When I questioned the chair of the NICE Guideline Group during its development I was assured they had considered all outcomes and my concerns were dismissed. As far as I am aware no specific sarcoma expertise was consulted during the development process.
The question which needs answering is whether the new approach is working for the benefit of patients and/or the NHS.
Prior to the change three years ago a GP was advised to make a 2-week referral to a specialist centre if certain clinical symptoms existed. More patients were actually being diagnosed from non-urgent secondary care referrals or other routes than from the 2-week system. Hence the change, which made direct access to x-rays (for suspected bone sarcomas) and ultra-sound (for soft-tissue tumours) available to GPs so they can diagnose non-malignant tumours or determine uncertainty which requires expertise.
The problems arise because sarcomas are rare, diverse in their histology and can appear in any location on the body – in fact ‘typical’ is not an adjective applicable to sarcoma. The ratio of benign soft tissue tumours to malignant sarcomas is over 100:1. The rarity means ultra-sound imaging technicians have little familiarity with sarcoma although for bone tumours X-rays can be definitive.
We are finding that ultra-sound imaging reports will err on the safe side. Some tumours are clearly benign but if they have any doubt they are likely to say that they cannot be certain. So what do GPs do with this uncertainty? Their uncertainty boundary has shifted so they make a 2-week referral to a specialist centre, even for a tumour which under the old guidance would have been recognised as benign.
Thus specialist sarcoma centres are being overwhelmed by urgent referrals for ‘uncertain’ tumours. Diagnostic expertise is now being exercised by nurses operating triage clinics. This allows their consultant colleagues to spend longer with the fewer potentially malignant cases who come through the triage. The people with sarcoma who would benefit from urgent attention are being hidden in a cloud of benign conditions until a late moment in the process. GPs are allowed to opt out of responsibility for diagnosing the benign condition, hiding behind the ‘uncertain’ ultra-sound. Those with benign conditions suffer a journey to a regional specialist cancer centre only to be told by a nurse that their highly qualified GP must re-consider their case.
Patients are not being respected. The problem is not the principle of the new guidance, but the implementation which has shifted the workload inappropriately. Those picking up the pieces are the specialist centres overloaded with diagnostic work. The new guidance was intended to help them and it is doubtful whether this is leading to earlier diagnosis of malignant tumours either. The whole approach needs review in the light of the experience the sarcoma centres are reporting and any review must be in collaboration with them, rather than imposed by a committee led from primary care.