Involving families
What have we done so far?
As part of our programme to safely and effectively transfer children's cancer services to Evelina London, we're designing the cancer care areas.
Engaging and involving children and families in these designs is crucial.
The Royal Institute of British Architects (RIBA) Plan of Work outlines 8 stages to guide the design and construction of buildings.
We've just completed RIBA Stage 2, in which we developed high-level floor plans to show what will go where in the cancer ward, day treatment and outpatient areas.
As well as shaping our floor plans, this phase has helped guide our approach for the next RIBA stages to make sure that we listen to as many voices as possible to create a well-designed and supportive space.
Find out about all of the ways we're involving patients and families in shaping our future cancer services as well as ways to get involved now and in the future.
We ran a series of online workshops with the design team and visited The Royal Marsden NHS Foundation Trust to gather insights from families of children who are being or have been treated at the existing Children's Cancer Principal Treatment Centre.
We also involved representatives from charities who can share their expertise from working with large numbers of families.
During this phase:
- 2 parent representatives joined the internal panel to select the design team
- 4 people (3 parents and 1 previous patient) contributed to the briefing pack for the design team
- 5 people gave feedback during engagement at The Royal Marsden NHS Foundation Trust's hospital in Sutton
- 7 parents gave feedback during presentations to The Royal Marsden Parent Forum
- 16 people regularly joined online workshops to input into the high-level designs
Most of the patient representatives we worked with received care at The Royal Marsden NHS Foundation Trust or St George's University Hospitals NHS Foundation Trust, and live in Surrey and Kent.
"This has been so rewarding. I really enjoy using my experience to help other families in the future get what they need.
I'm so moved by how committed everyone involved from The Royal Marsden, St George's and Evelina London is to delivering the safe and effective transfer of the children's cancer services.
They all really care and it comes through in every part of this process."
Angus, a parent of a child previously treated at The Royal Marsden NHS Foundation Trust, who has been helping to shape our future cancer services
They said, we did
"The space needs to be like a little nest, where you have everything you need to take care of your child and yourself."
We asked what features families think are essential for our future cancer services.
We've already made some changes to our plans based on this feedback.
They said: The outpatient area must be accessible and include baby change facilities.
We did: There will be two toilets in our outpatient area, one with a baby change facility. All areas will be accessible.
They said: Stress and noise are a concern for families having treatment in a shared area.
We did: We will have a separate treatment room in all areas.
They said: There should be space for parents and carers to wash clothes, shower, and work.
We did: Our plans include a lounge, laundry room and shower. In the next design phase we will discuss the best way to provide space for work.
They said: Food smells may make some children feel unwell.
We did: The kitchens in the inpatient and day case areas will be away from beds and treatment spaces.
They said: Play and wait spaces need to be suitable for all ages.
We did: The ward, outpatient area, and day unit will have separate areas for young children and teenagers.
They said, we are doing
During this design stage, families also gave us more detailed feedback that went beyond the floor plans for the future spaces.
We're using this to develop the next stage of our plans.
They said: Plans for the future service need to be influenced by the current service.
We are doing: We're learning from the current service so we can build on its strengths while also making the most of everything Evelina London has to offer for children and families.
They said: Children and young people need good food to eat while they're in hospital.
We are doing: We will hold discussions about how we can provide catering that is comparable to the service provided at The Royal Marsden. Our catering team is working with The Royal Marsden catering team and we will continue to involve families in this.
They said: We are keen to discuss some of the more detailed design plans.
We are doing: We will be including families in the next stage of the design process, which will be focussed on the detail of all the spaces. This will include storage, art, wayfinding, waiting areas, play areas, teenage space, furnishings, and equipment (including beds, lighting, and activities for children like a gaming area).
They said: It is incredibly important that children and young people can spend time outdoors.
We are doing: We are working to make sure we make the best of the space available so that children with cancer will have access to outside space at every stage of their treatment.
They said: Education provisions need to be suitable for children and young people at all stages of their treatment.
We are doing: We have involved Evelina London School, the infection control teams at Evelina London and The Royal Marsden, and clinical teams in discussions so far. Further discussions will take place in the next design phase.
Engagement activities
A summary of key activities.
Selecting the design team
15 July to 26 July 2024
Patient representatives were on the committee to select the design team. This involved evaluating applications and sitting on the interview panel. We also worked with them to develop a design brief for the successful team.
Including representatives in our involvement strategy
July 2024
We had conversations with patient representatives to make sure that they were happy with our approach to hear from as many people as possible.
Patient representatives recruited to boards
July to September 2024
We established the Partnership Advisory Board and recruited patient representatives to the Programme Delivery Board. By involving patients and families in our boards we can ensure that the voices of families are heard at all stages of planning and directly influence decision making.
Online design workshop
28 August 2024
In this workshop for families and charity representatives we:
- introduced the Evelina London Children's Hospital team and the design team
- explained what we've been working on
- showed how feedback we received during the public consultation has already been included into our very early designs
- received their input on the early designs
Online design workshop
11 September 2024
In this workshop for families and charity representatives we:
- reflected on feedback from the first session
- explained how we have included this feedback in an overview of the floor plans
- received their input on the overview
Online design workshop
25 September 2024
In this workshop for families and charity representatives we:
- showed them the high-level floor plans for children's cancer outpatient and day case areas
- received their input on the floor plans
The Royal Marsden Parent Forum
30 September 2024
We were invited to this forum to give an update on the progress of the children's cancer programme and encourage families to get involved.
Engagement at The Royal Marsden
3 October 2024
We spent time at The Royal Marsden NHS Foundation Trust's hospital in Sutton to speak to families in the children's cancer services. We gathered feedback about our designs and what they felt would be most important to include.
Online design workshop
9 October 2024
In this workshop for families and charity representatives we:
- gave updates on the high-level floor plans and asked for feedback on moving to the next stage of the design process
- gave them the opportunity to ask clinical staff members questions
- explained the next steps in the design process and how we would like them to be involved
Visit the Evelina London website for more information about the future children's cancer services at Evelina London.
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