I found the publication of the NICE Quality Standard for Sarcoma (link at bottom of page) quite personally rewarding. The process of developing it was fairly intense and took into account a lot of views, some quite trenchantly held. To be a patient in a process at NICE is always one of the better patient involvement experiences there is. I wrote about the Quality Standard a few weeks ago and I have had time to think more about it.
This simple set of six statements could generate a big evolution in the way that sarcoma treatment is delivered in England and I hope the opportunity is not missed. The statements are aimed at Commissioners, Networks and service providers. They set standards for improving the outcomes for patients built upon recent evidence and real experience. They are also intended to help patients understand what to expect.
Sarcoma treatment structures have been reorganised over the past eight years following the NICE guidance on which I also worked. Improving Outcomes for People with Sarcoma has been instrumental in helping us arrive at the 12 treatment specialist centres we have today. Five of them treat bone and soft tissue sarcoma, the other seven soft tissue alone. All of them have a Clinical Nurse Specialist within the multi-disciplinary team (MDT), alongside surgeons, oncologists, radiologists and pathologists.
Some of these centres are multi-site – hospitals linking together to provide the total service. Many of these treatment teams also undertake outreach. Some have outlying diagnostic and treatment units with clinicians who are “extended members” of the MDT. Some also hold clinics in hospitals other than their home centres – recognising that patients often live far from the main site.
Sarcoma specialist MDTs all have a character of their own, reflecting the host organisations and the individual doctors who work in them. Some have special interests (eg younger patients, people with retroperitoneal tumours), or additional qualifications and skills (eg specialist surgical techniques), many are involved in research, and some have oncologists who have an interest in supporting sarcoma patients with gynae or gastrointestinal tumours.
Now the Quality Standard is opening the way for greater networking.
One of the new standards requires retroperitoneal sarcomas to only be treated where there is specific expertise. It is for the NHS England Sarcoma CRG to determine which centres have expertise but the NICE committee was clear that such centres should have a high patient volume and thus be few in number.
All sarcoma MDTs are required to make public the pathways they have with other treatment teams eg for metastectomy and the specific special skills which they have within their own team. This should open up a better understanding of how individual patient experience can be improved. Could this lead to referral between sarcoma MDTs to maximise patient outcomes?
Gynae and GI MDTs are also required to collaborate with sarcoma MDTs on patients they diagnose with sarcoma. This is already a requirement but it is rather patchy and it is questionable whether it adds value for many patients. The Quality Standard puts it onto a new footing. GI and Gynae cancer teams will have to reach out to Sarcoma MDTs because they must agree a care plan for every sarcoma patient. This should build stronger links with Gynae and GI centres which can benefit patients (eg access to trials) but will only do so if the sarcoma teams take active involvement in their care.
There is the opportunity for new guidelines. Bringing practitioners together to share knowledge and experience to create consensus guidelines and discuss treatment protocols is a huge opportunity, if only the cost of doing it can be found. I hope that the British Sarcoma Group can rise to this challenge.
So the next three years will be very interesting. We have a new government promising that the NHS will have new funding. NHS England is starting to look better organised. NICE will remain largely unchanged and with questionable influence. CQC is making waves. Cancer Peer Review is being revitalised. Yes, we might (hopefully) have a practicable process for evaluating and funding new drugs. In all this I want so see sarcoma MDTs working more closely together with some more formal networking and I do believe that we will see an improvement in outcomes for sarcoma patients.
The NICE Quality Standard for Sarcoma can be found here:
https://www.nice.org.uk/guidance/qs78