Agenda item

The Committee received a presentation from NHS England which provided a recap of the process thus far; an end of public consultation update (key findings of the public consultation taken from the independent report); a decision-making update; and next steps.

The following key points were noted:

9.1. The Consultation ran for a 12-week period, starting on 26^th September 2023 and concluding on 18^th December 2023; views were sought on the strengths and challenges of both options consulted upon, and views were also sought on how some of the challenges could be overcome.

9.2. The consultation was open to all, however specific key stakeholders included: Groups directly impacted (children and young people with cancer or who have experienced cancer (and their families and clinical and non-clinical staff from the hospitals involved); professional bodes; children, young people and their families with related experience; and communities with specific protected characteristics.

9.3. Overall, there were 2669 formal responses to the consultation which included those that had completed the survey (online and in hard copy) as well as face to face conversations and organisational responses. NHS England were happy with the number of responses.

9.4. There was an active petition that received over 10,000 signatures  and comments. It was launched by a group of people with experience or family experience of care at The Royal Marsden. The petition advocated for a different model for the future of the service, where an element of care continues at The Royal Marsden, with those at low risk of intensive care being treated there and those at higher risk of requiring intensive care being treated at St Georges. NHSE reiterated that the purpose of the consultation was to get feedback on the two options presented for the future location of the Principal Treatment Centre and that the national service specification was the driver for the change as specialist children cancer services are required to be on the same site as the children’s intensive care unit.

9.5. There was good reach to affected clinical and non-clinical staff; during the consultation NHE England heard from 155 Royal Marsden staff and 216 St George’s Hospital staff which represented a good proportion of staffing who provide the current service.

9.6. In terms of hearing from those with direct experience, around 16% of respondents were either children & young people who have been affected by cancer or family members and advocates of children and young people who have been affected by cancer. While ideally NHS England would have liked to have heard a little more from children and young people, the reported that they nonetheless had rich feedback from play specialist sessions on wards.

9.7. 16% of all respondents to the consultation were from the South East London ICB area, with a greater level of response coming from South West London. This response rate was reported to roughly align with the proportion of people who currently use the service.

9.8. Many of the SEL responses were from affected clinical and non-clinical staff and NHSE reported that they were happy with the reach into ethnic groups in SEL. There was a slight skew in the age of respondents with most being between the ages of 41-60, it was reported however that there was still a good proportion of responses from children and young people. The Committee were assured that the patient cohort who responded to the consultation was representative.

9.9. In terms of the themes of general feedback from the consultation, the following were highlighted from the independent consultation report:

Ø  There was a desire to have all or most specialist services located in a single location

Ø  Specialist knowledge of children’s cancer care was highly valued

Ø  People wanted a convenient location particularly in terms of car access

Ø  People wanted a location with strong research facilities and a track record

People also wanted:

ØA child-friendly hospital

ØTo preserve the welcoming family friendly atmosphere of The Royal Marsden

ØEn-suite accommodation and good facilities for parents

ØCar park access/dedicated parking

 

9.10. In terms of feedback for the Evelina option, comments with regards to the strengths included:

Ø  It is a purpose-built children’s hospital which has a range of other specialisms including heart and kidney care.

Ø  It has a large children’s intensive care unit with the perception that this would mean that there is capacity for intensive care for children with cancer.

Ø  It has good public transport links given its Central London location

Ø  It is well located for access to local amenities

Ø  It is located close to University College Hospital, if a child or young person needs to travel for radiotherapy.

In terms of strengths raised by NHS staff:

Ø  Staff at the Evelina already work with some children with cancer and children’s cancer services through their existing work

Ø  There are links to adult cancer services through Guy’s and St Thomas’ NHS Foundation Trust

Ø  It uses the same IT system for patient records as The Royal Marsden which would help ensure a smooth transition

 

9.11. In terms of comments made with regards to challenges for the Evelina option, these included:

Ø  A lack of experience and expertise in children’s cancer care and children’s cancer

Ø  It does not provide neurosurgery

Ø  It does not conduct research in paediatric cancer

Ø  It is perceived that it may face significant recruitment issues as it would be heavily reliant on retaining experienced staff from The Royal Marsden

Ø  Concern that staff may not want to work and travel to central London

Ø  It would be difficult for families to access Evelina by car which is a preferred method of transport as well as costly and time consuming

Ø  Family accommodation at Evelina is considered as not being close to the hospital. Eligibility for and the availability of accommodation may not be guaranteed.

Challenges raised by staff included:

Ø  Recruitment to Evelina could have a potential negative impact on the recruitment and retention of staff for other nearby NHS services due to competing demand.

Ø  There is a perception that Evelina lacks space to take on the service.

 

9.12. In terms of feedback for the St George’s option, comments with regards to the strengths included:

Ø  It is part of a well-established Principal Treatment Centre, with services and pathways already on place.

Ø  It has existing links with The Royal Marsden

Ø  Some neurosurgery is offered on site and a well-established children’s cancer surgery service

Ø  Easy access by car

Ø  Lots of private rooms with ensuite facilities and family accommodation nearby.

 

 

9.13. In terms of comments made on the challenges for the St George’s option, these included:

Ø  The current estate was described in some feedback as being outdated and facilities as poor.

Ø  Perceived lack of privacy on the ward

Ø  Perception that the research proposition is not strong, with lack of experience in running clinical trials for children with cancer

Ø  Difficult for families to access including by car. Costly and time consuming for families to travel and there is not enough family accommodation.

Challenges raised by staff included:

Ø  Perceived financial constraints at St George’s Hospital

Ø  Disentangling existing relationships to set up the new PTC could be challenging.

Ø  It does not use the same IT system for patient records as The Royal Marsden which could negatively effect the transition.

 

9.14. Comments made about the strengths of the Radiotherapy proposal which included: 

Ø  There are benefits associated with consolidating radiotherapy expertise and services in one location.

Ø  There is existing knowledge and experience of staff at University College Hospital

Ø  Other treatments are available there (e.g. proton beam therapy)

In terms of the challenges of the radiotherapy proposal, comments included:

Ø  Challenges of transport of very sick children into central London

Ø  Some families would face longer journey times to UCH to receive radiotherapy treatment, when compared to The Royal Marsden

Ø  Concerns about the capacity and resourcing of UCH to take on the service.

Ø  Potential negative experience of disjointed care.

 

9.15. A range of other ideas were put forward through the consultation including some alternative proposals. These included a risk-adapted model that retains the PTC at Royal Marsden and St George’s; a 3 stage solution; and the utilisation of the new hospital to be built in Sutton, next to The Royal Marsden.

 

9.16. Some respondents across the stakeholder groups also expressed some criticism of the consultation itself which included:

ØThe perception that the consultation was biased or the result had already been decided as a preferred option had been identified.

ØA feeling from a few parents, carers and advocates that their feedback has not been listened to (during pre-consultation)

ØA feeling of doubt from some parents, carer and members of staff that their feedback could actually affect the decision-making process.

 

9.17. Detail was provided on the planned decision-making process noting that activity is underway within NHS England to consider the themes from the consultation feedback.  NHS England provided an outline of arrangements for decision making with the detail of when the decision to be confirmed.  They also outlined some of the areas of focus after decision-making. It was noted that NHS England will look to return to the JHOSC when a decision has been made.

 

9.18. It was reported that service will not move until the end of 2026 and there is a lot more work that will be done in the meantime including more detailed plans on the environment of the hospital; travel and access; as well as a focus on maintaining research and looking after staff in the service.

The Committee then proceeded to make a number of queries and comments with regard to the consultation feedback and the proposals in general. The key points from this discussion included:

9.19. Concern was expressed over the affordability of travel costs and accommodation, particularly if families need to find nearby hotels if they cannot use the nearby accommodation or require additional rooms for example, if they have other children they need to bring with them. It was reported that in terms of family accommodation, both potential locations already have the ability to have families stay if receiving treatment, but there are nuances to consider including the facilities on offer and how close they are to where children are being treated. It was explained that consideration will also need to be given to what additional capacity might be required. It was reported that the costs of accommodation could be subsidised if the usual accommodation is not available.

9.20. Concern was expressed about the additional expected travel costs by road, in light of the anticipated charges for both the Blackwall and Silvertown tunnels which will impact South East London residents (in addition to the ULEZ and congestion zone charges which had been discussed previously.)

9.21. It was noted that analysis into additional travel costs has been done and continues which has been focussed on the costs of driving as well as having examples of potential increases in public transport costs. It was reported that further analysis will be available in the next iteration of the impact assessment. It was noted that there will be a travel and access working group, which both potential options have committed to setting up.

9.22. It was reported that reimbursement schemes are already in place for people receiving cancer services, and it is highly likely that families will be eligible for reimbursement but there may be some work required to help people understand what is available and how to access it.

9.23. It was noted that shared care units (POSCUs) were also part of the service specification for Paediatric Oncology that was published in November 2021. It was explained that significant changes and investment are planned, to increase the level of care that children receive closer to home. It was reported that this work should ensure that only the patients with the greatest need would need to go to the Principal Treatment Centre for very specialist care. It was noted that both options for the future location of the PTC would meet the national service specification.

9.24. An update was sought on the provision of free hospital transport further to previous discussions; it was reported that where people do not drive or cannot use public transport, there is non-emergency hospital transport available. It was explained that this is dedicated transport, provided by the hospitals which collect and take children to their appointments. It is a scheme that all hospitals have in place with eligibility criteria; it was reported that children with cancer are likely to meet that criteria. The Chair commented that such transport will be needed particularly for people in more remote areas.

9.25. Updates were also sought on plans to provide dedicated parking spaces; it was noted that both potential options are reviewing the car parking in the whole of their estate. Both options plan to provide a level of dedicated car parking at least equivalent to that available at The Royal Marsden. It was reported that during the implementation period, plans will be worked up for mobility volunteers or hospital staff to make sure children are safe in that environment.

9.26. The Medical Director at The Royal Marsden reported that the two consulted options – Evelina and St Georges cannot physically replicate the arrangements that are in place at The Royal Marsden in terms of car parking and access via car such as being able to drop people at the front door for example. It was reported that it was clear from the consultation that access and easy vehicle access was very important to people.

9.27. Concern was expressed about discontent among health professionals in recent times, and particular concern was expressed about nurses for the service if they are required to drive to a new location and what can be done to ensure they can afford to do that.

9.28. Concern was also expressed about car parking for staff which can be difficult and expensive.

9.29. A Member commented that they would not want to see the workforce diluted with support staff and that the high excellence of care currently provided at The Royal Marsden needs to be maintained. It was commented that a package of wraparound support needs to be provided for staff.

9.30. NHS England reported that they want to give certainty to staff about the future of the service and to make a decision in a timely way to allow more detailed planning work to take place. Specifics for staff and packages/support that can be made available will be worked through.

9.31. In terms of travel costs for staff, NHS England advised that there will be protections for staff carried over in this area for a period of time after a move. It was recognised that not everyone will want to transfer over, and that during the transition period, the chosen hospital would need to plan and work on any gaps that exist.

9.32. The Medical Director at The Royal Marsden reported that 60% of their staff live local to Sutton and others tend to live outside of the M25. It was reported that 80% of their paediatric staff either drive to work or live close enough to work to cycle or use a local bus; it was commented that a high proportion of staff from the service will not move due to their own circumstance and will not commute into central London. It was commented that not all staff will move from The Royal Marsden for either option.

9.33. Concern was expressed by Members about the potential for competition with other nearby hospitals/Children’s hospitals such as Great Ormond Street if the future location of the PTC service is to be in Central London, given the high density of hospitals.

9.34. NHS England reported in response to a query that they will be supporting the hospitals concerned in communicating with staff over the coming period. It was acknowledged that change can create anxiety and work with hospitals is being prioritised; there was work with Trusts in the run up to the publication of the consultation report and it was explained that this work will continue with Trusts up to and after a decision is made.

 

9.35. The Chair proceeded to summarise the key points/comments the Committee would like to include in their formal response to the proposals, that will be submitted to NHS England; this included comments made at the meeting with relation to:

Ø  Travel and other incidental costs (e.g. ULEZ, Congestion Charges and tolls for river crossings, accommodation for families)

Ø  Workforce Concerns including concerns about capacity and which staff would move as well as the potential for competition with other hospitals in Central London.

Ø  The local support offer (POSCUs)

 

9.36. It was also commented that in terms of comments the Committee had made previously about the delivery timescale, that the Committee would want to hear from NHS England again after a decision has been taken and that certainty for patients and staff would be welcome.

 

9.37. The Committee went onto consider whether they had a preferred option of the two being consulted upon. A Member of the Committee expressed an alternate view and a preference for services remaining at the current sites of The Royal Marsden and St Georges given the excellent service delivered currently and the good links already in place between the two hospitals and commented on the importance of the quality of treatment. As a result, the Committee’s conclusion was non-unanimous, however in terms of the two options presented, by significant majority and based on the evidence presented and considered, the Committee’s recommended/preferred option was for Guys and St. Thomas’ NHS Foundation Trust’s Evelina London Children’s Hospital to be the future location of the Principal Treatment Centre.  

RESOLVED:

·  That the presentation be noted

·  That the comments made under the item with relation to: Travel and other incidental costs (e.g. ULEZ, Congestion Charges and tolls for river crossings, accommodation for families); Workforce Concerns; and the local support offer (POSCUs) be included in the Committee’s formal response to NHS England on the proposals.

·  That the Committee’s preferred option of Guy’s and St Thomas’ NHS Foundation Trust’s Evelina London Children’s Hospital to be the future location of the Principal Treatment Centre to be included in the formal response.

·  That NHS England be invited to come back to the Committee once a decision has been made.