Families 'terrified' over proposals to move children's cancer services from Sutton

Parents Jenny and Steve with their son Lewis on the day they received the news he was in remission in June 2016 <i>(Image: Jenny Houghton)</i>
Parents Jenny and Steve with their son Lewis on the day they received the news he was in remission in June 2016 (Image: Jenny Houghton)

Thousands of people have thrown their support behind parents campaigning for a children’s cancer centre to remain at two South London hospitals, with families “terrified” at proposals which could see services moved to Central London.

NHS England is proposing to move the centre providing specialist children’s cancer treatment services based at The Royal Marsden Hospital, in Sutton, and St George’s Hospital, in Tooting, to one location.

The NHS is consulting the public on two options for the future location of the centre for children aged 15 and under which covers South London, Kent, most of Surrey, Medway, East Sussex, Brighton and Hove – St George’s and the Evelina Children’s Hospital in Lambeth.

Your Local Guardian: Parents Jenny and Steve with son Lewis and daughter Ella
Your Local Guardian: Parents Jenny and Steve with son Lewis and daughter Ella

Parents Jenny and Steve with son Lewis and daughter Ella

Services are not expected to move before 2026.

Parents of children who have been treated at the centre have launched a campaign against both options as they mean services would move from The Royal Marsden, a world-leading cancer specialist hospital.

More than 6,800 people have signed a petition supporting the campaign, which says children’s cancer services in South London and much of the South East are at “huge risk of failing” if facilities are moved.

It comes after a new national service specification in 2021 outlined very specialist children’s cancer treatment services must be on the same site as a paediatric intensive care unit and other specialist children’s services.

The Royal Marsden does not have a paediatric intensive care unit on site, meaning a small number of children with cancer requiring intensive care are transferred safely by ambulance from the hospital to St George’s every year.

In the petition, parents argued moving services from The Royal Marsden would cause “far more complications, inconsistencies in treatment and potentially hugely lengthy increases in travel times and logistics for families, at what is already a terrifying and incredibly stressful time for them”.

They said there is no guarantee the new service would exceed, or even meet, the level of care provided at The Royal Marsden.

The parents added future children’s cancer treatments could minimise the need for paediatric intensive care, while patients who need radiotherapy would still need to travel to another hospital.

They want a risk-adapted model to be put in place instead, which would see patients deemed likely to require intensive care services upon diagnosis receive specialist care at St George’s to minimise any need for transfers, while the remaining patients would continue to receive specialist treatment at The Royal Marsden.

Jenny Houghton’s 14-year-old son Lewis was diagnosed with cancer just before his sixth birthday in 2015 and treated at The Royal Marsden.

He has been in remission for eight years.

Ms Houghton is part of the parent stakeholder group opposing the proposals, which has been involved in the consultation process since 2019.

The 45-year-old told the Local Democracy Reporting Service (LDRS) parents of children receiving treatment at the centre are “utterly terrified” at the proposals, while the group is also “terrified for the families who have children yet to be diagnosed who are going to be affected”.

She said the group had continually raised concerns about the proposals in meetings prior to the public consultation.

She told the LDRS: “We feel very much like we’ve been part of this process as a tick-box exercise to show that they can say they’ve been listening to parents.

"They absolutely haven’t and they’ve shut us down at every point because they disagree with what we say.”

NHS data shows 84 out of the 1,373 children treated by the centre in 2019/20 had intensive care – 15 came from The Royal Marsden.

The centre treated 536 children as inpatients that year, with 335 of these children from outside of London.

Ms Houghton said parents of critically-ill children are “beside themselves at the prospect of having to travel into Central London” for treatment and that it is “not a feasible option and is incredibly dangerous” for many, particularly given how many patients live outside of the capital.

Immunosuppressed children, she added, “can’t be around their closest family members in case they catch a cold which could be fatal – they absolutely can’t travel on a Tube and a train”.

She told the LDRS: “I’m based in Ewell. When my son was in treatment, we could get to The Royal Marsden in six minutes.

"For us to get to the Evelina you’re looking at around an hour, let alone the additional costs that it would take. It just doesn’t add up, it’s not justifiable.”

Ms Houghton described The Royal Marsden as “incomparable” and the prospect of services being moved from the hospital as “terrifying”.

About the campaign, she said: “We’re doing this because we know what it’s like to go through this and we don’t want anybody to have anything less than the care that you receive at The Royal Marsden.”

She added: “It’s been really emotional, really frustrating and exhausting being part of this for so long but there’s no part of me that feels I can stop until we have gone as far as we can to get this heard and hopefully get this rethought.”

St George’s previously said it plans to build a new centre housing “fantastic medical facilities, state-of-the-art research facilities and recreational, educational and therapeutic spaces”, along with family accommodation, if successful in the consultation.

It said families would be able to drive to the centre and park in dedicated spaces, which would eliminate the “risk of infection to vulnerable kids from public transport”.

A spokesperson for Evelina London Children’s Hospital said its proposal is the only option that would mean the centre is based at a dedicated children’s hospital, bringing the region in line with international best practice. They said leading children’s cancer experts would work with the hospital’s world-class specialist children’s teams, researchers and facilities.

The spokesperson added: “We understand that the parents of current patients may have concerns about some aspects of the proposed changes. As part of NHS England’s proposals, the vast majority of the current expert clinical team will also move to the new centre.

"That means that most children and their families will continue to be supported by the clinicians they already know and trust, providing consistency and continuity in their care.

“If successful with our bid, we are committed to working closely with the current teams at the Royal Marsden and St George’s, and with families and children, to ensure this continuity of care and to create the comprehensive children’s hospital our region needs and deserves.

“This would include the provision of free, dedicated parking for the new children’s cancer centre in addition to the existing ‘home away from home’ free accommodation for the families of children being treated at Evelina London in the dedicated 60-bedroom Ronald McDonald House, the largest in London.”

An NHS spokesperson said: “We understand that people are passionate about services for children with cancer and we welcome all feedback on our proposals.

"To provide the very best care for children with cancer, specialist children’s cancer services and children’s intensive care need to be on the same site. Currently these services are on different sites and the NHS is consulting on bringing these services together either at Evelina London Children’s Hospital, Lambeth or St George’s Hospital, Tooting.

“The consultation is aiming to hear from as wide a range of voices as possible about where the future cancer centre should be located. We are asking people to tell us their views on the good points and drawbacks of each option, as well as ideas for making these proposed changes go smoothly. We would like to encourage all those with an interest in our proposals to visit our website, find out more and share their views with us.”

A spokesperson for The Royal Marsden NHS Foundation Trust said it is important any parent who wishes to share their views on the consultation can do so.

Professor Nicholas van As, medical director at the trust, added: “The current service at The Royal Marsden is assessed as high-quality and safe, and a third of children treated in the hospital are able to access clinical trials through our world leading Oak Paediatric and Adolescent Oncology Drug Development Unit. It’s important that the benefits currently available to children at The Royal Marsden are retained in the future.”

The link to the consultation documents, including the questionnaire where members of the public can provide their views, is here.

The NHS will make a final decision after reviewing feedback and considering all information.

The consultation closes on December 18.