Response to NHSE consultation on changes to Paediatric Oncology
Joint response regarding the paediatric oncology service change
Our view is that the consultation is insufficient and does not discharge the duty to consult as it fails to meet the Gunning Principles for Consultations.
You can read the joint statement from Healthwatch Merton and Healthwatch Richmond here.
In light of this NHSE response, we ask for a more detailed case for change that clearly sets out the expected improvements/benefits that the changes will generate for patients and families, for more detail on travel and for more detail on the impacts on other services.
You can read about the previous steps taken regarding the paediatric oncology service change and its impact on South West London families below.
NHS England has been promoting a public consultation about two new potential sites for the paediatric oncology treatment centre that serves South West London. They insisted that the service must move from its current location at the Royal Marsden Hospital, citing safety concerns. Some parents of current service users disagreed with this decision and said that the service must remain where it is.
Where will the service go?
The paediatric oncology centre is currently based at the Royal Marsden Hospital. The options for the new sites are the Evelina Hospital and St George’s Hospital. NHS England says that from their assessment of both potential new sites so far, that there is a slight preference for Evelina Hospital. They stress that the ongoing public consultation will influence the final decision.
Who does the change impact?
In 2019/20, the Royal Marsden paediatric oncology treatment centre served 536 children as inpatients in South West London, South East London, Kent and Medway, Surrey, East Sussex, and Brighton and Hove.
NHS England does not plan to move the site until at least 2026. Most current patients will have completed their treatments by then.
The move will therefore primarily impact future patients and their parents, carers, and friends. Some Royal Marsden staff will also be invited to take up posts at the new treatment centre. NHS England has spoken with current patients and staff to understand the impact of the move. This is captured in their consultation report. (An Easy Read version is also available).
Other people will be affected as well. For example, if staff move from the Royal Marsden, this will impact other patients under their care. The result of moving patients to a new site might also impact other patients already being treated at that site.
The site move might also impact children, their loved ones, and staff in paediatric oncology centres in neighbouring catchment areas, especially Southampton Hospital. This is because not all future patients will want to travel to Central London for care, which might lead to more people seeking care in these alternative hospitals.
Why are there plans to move the treatment centre?
New NHS England national guidance states that the primary treatment centre for paediatric oncology must have a paediatric intensive care unit onsite. This is to reduce the risks inherent to transferring very sick children who need these services. Currently a small number of children are transferred each year from The Royal Marsden to St George’s for intensive care. The vast majority are transferred safely, though in 2011 the transfer was linked to the fatality of a young child.
What do current and former patients and their parents think about this change?
A 2020 report shows that consultations with parents in the initial phase to determine whether there was a need to move the treatment centre at all suggested agreement with the idea for the treatment centre to be co-located with a paediatric intensive care unit.
However, a group of parents are now working hard to fight this move and to keep the paediatric oncology centre at the Royal Marsden. They think that it is unlikely that either of the proposed sites can offer the quality and overall experience of care available at the Royal Marsden. Many are also concerned about increased travel times and other travel complications with reaching these sites. They have approached local council members in South West London and are circulating a petition.
How can I let NHS England know my views?
The consultation period closed on 18 December 2023.
What role has Healthwatch played in these consultations?
The South West London Healthwatch collaborative (comprised of Healthwatch Croydon, Merton, Kingston, Richmond, Sutton, and Wandsworth) are watching NHS England patient engagement closely. We have so far:
- Participated in a pre-consultation with NHS England to help guide their approach to the now open public consultation. In response to our request, NHS England provided evidence showing that they had meaningfully engaged patients during the current consultation as well as to inform their initial decision to move the primary treatment centre.
- Provided representation at meetings where we have heard from concerned patients. We advocated that NHS England respond to the points that parents raised in their consultation report. We have reviewed this and are satisfied that most concerns have been accurately acknowledged. We are following closely to ensure that there is a satisfactory plan for addressing these concerns.
- Shared NHS England’s responses and patient concerns with the Mayor of London’s office. They are conducting an independent assessment about this service change to ensure that meaningful engagement occurs and that good data and evidence drive the selection of the new treatment site.
