The publication of an NHS Quality Standard for Sarcoma in January raised a lot of questions. At the top of the list is “what is it for?” After all we have the NICE Improving Outcomes Guidance (IOG) as the key document that the NHS is meant to observe.

To give us an insight into the Quality Standard and how it will help make things better for patients we asked Sarcoma UK’s Founder Roger Wilson, who was recruited by NICE to provide a patient perspective on the development work, to give us the inside track.

What’s the idea behind the Quality Standard?
The objective is to provide a concise summary that can help drive measurable improvement in provision of services for people with sarcoma. The people who can deliver improvement are clinical practitioners, NHS commissioners, and service providers.

How was it developed?
NICE has a number of standing committees working on quality standards. This helps ensure that a common approach is taken. One of the committees was nominated to undertake the sarcoma standard and they recruited six sarcoma ‘experts’ to help them. These were: Sam Hackett - Clinical Nurse Specialist, Royal Marsden Hospital; Prof Rob Grimer - Orthopaedic Surgeon, Royal Orthopaedic Hospital, Birmingham; Prof Meirion Thomas - Surgeon, Royal Marsden Hospital;

Prof Jeremy Whelan - Medical Oncologist, University College London Hospital; Dr Phil Robinson - Radiologist, St James Hospital, Leeds; Roger Wilson - patient.

It’s a big topic - how did they approach the work?
It was quickly agreed that the primary focus should be on diagnosis and primary treatment. There are also some areas where the NICE IOG is not working well and there is a need for consistency in some core clinical activities. Standards are also meant to have an evidence base to them so they are not just conjured out of the air.

What does the Quality Standard look like?
It is six statements in plain language that anyone can understand. Each has an explanation and guidance for different groups of people who will use it. There are also some cross references to other Quality Statement which are relevant to sarcoma treatment. There are quite significant implications for some patients and for our MDTs around the country.

Can you talk us through them?
1. Sarcoma advisory groups and sarcoma multidisciplinary teams (MDTs) have pathways for referral and diagnosis in place for people with suspected sarcoma.

This reinforces the NICE IOG. It recognises that about 60% of patients get to a recognised sarcoma treatment centre quickly but about 40% do not. Where initial diagnosis happens in another speciality there must now be a formal referral pathway in place so that these patients do reach a centre with sarcoma expertise. It is also an invitation for sarcoma MDTs to identify and learn best practice.

2. Adults, children and young people with bone sarcoma and adults with soft tissue sarcoma have their care plan confirmed by a sarcoma MDT and treatment delivered by services designated by the sarcoma advisory group.

The use of the term 'care plan' makes it clear that a sarcoma MDT's role here is not nominal. If it is appropriate it should become actively involved. The primary point is ensuring there are local pathways for patients diagnosed with GIST, gynae, H&N and skin sarcomas. These patients must be treated with consistency, observing accepted guidelines. There is a role here for provision of guidelines by the BSG.

3. Sarcoma MDTs publish information about their shared pathways, activity and patient outcomes, including information on site‑specific sarcomas.

By publish this means make publicly and readily available. It suggests that current MDT websites (which are generally badly maintained) need updating regularly. This is an important opportunity for development of a true sarcoma network which shares information, encourages and supports speciality interests (eg gynae sarcoma) and develops consensus guidelines. Build knowledge and expertise together. Deliver better patient outcomes.

4. People with a retroperitoneal sarcoma are referred before having any treatment to a sarcoma treatment centre with special expertise in managing this type of tumour.

We now have the data which shows us that retroperitoneal treatment in a high volume centre has benefits for patients. We already know that a radical, rather than conservative, approach to primary therapy is also important. This is not an invitation to every sarcoma MDT to demonstrate that it offers a service for 6-8 patients each year. It is an invitation to NHS England and the centres with established expertise to work with commissioners to develop a network approach for treatment of these patients.

5. Surgeons performing planned resections of sarcomas are core or extended members of a sarcoma MDT.

Once a sarcoma is diagnosed the most likely treatment route is surgery. Even if diagnosed by a non-sarcoma MDT the surgeon must collaborate with the local sarcoma MDT over the treatment plan and then be nominated as an ‘extended member’ by the sarcoma MDT. This creates the opportunity for sarcoma MDTs to collaborate over nomination of regional sarcoma specialists in gynae sarcomas, for example. There should be at least regional consistency in the way sarcoma MDTs operate this Quality Standard, ideally there will be national consistency.

6. People with sarcoma are supported by an allocated key worker with specialist knowledge of sarcomas and their treatment.

This is not just a reinforcement of the CNS or others such as physios who take on the key worker responsibility. Nor is it just about sarcoma MDTs. It is an unequivocal statement which says that every clinical location treating sarcoma must have a key worker who is knowledgeable about sarcoma and who covers its sarcoma clinics and treatment areas. It apples to site specific MDTs treating sarcoma, any local hospitals in which they see patients and to extended member treatment sites.

What ambitions do you have from this work?

In England we have 12 sarcoma MDTs and a number of centres where doctors treat sarcoma in association with those MDTs. In Wales there is an MDT in the south and the north uses the GMOSS MDT based in Manchester. Scotland is self-contained and these standards do not apply. There is an informal network in some places bringing MDTs together but there is also some competition as standards call for centres to see a minimum of 100 new patients a year.

The Quality Standards are an open invitation to the Sarcoma MDTs to develop a network approach. Most patients will still be treated in their local centre but there will be greater consistency in treatments, the benefit of wider experience from consensus sharing and guidelines brought together by doctors with a shared special interest. This will be possibly most important for patients diagnosed outside a sarcoma MDT. In many cases their treatment would go ahead with the unit which diagnosed them but the special needs that sarcomas bring with them will be recognised and handled appropriately.