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OPEN LETTER TO NHS ENGLAND, NHS LONDON & SOUTH EAST & THE SECRETARY OF STATE FOR HEALTH & SOCIAL CARE

December 2023

 

We write to you as a united group of parents who strongly oppose the current NHS London & NHS South East decision to move all paediatric specialist children’s cancer services from The Royal Marsden hospital in Sutton and relocate them within either Evelina London in Lambeth or St George’s hospital in Tooting. We have been vocally opposed to this as part of the internal stakeholder process for several years and have challenged the lack of public engagement throughout the entire pre-consultation phase, with both parents and children who have the lived experience to provide crucial feedback and will ultimately be the ones affected by this decision. 

 

Since the public consultation phase launched late September, we have been able to share our concerns with the general public and garner huge support from thousands of people who are in agreement that this poorly justified proposal needs to be reconsidered.

 

Public backlash to this proposition is mounting considerably with over 10,000 people now having signed our #HearTheMarsdenKids campaign petition and sharing their comments, (attached summary included with this letter for review). We have garnered the attention of national broadcast, print and online media with over 150 press articles and multiple interviews being published, (links to a snapshot of interviews also included below for review).

There are simply too many flaws in both hospitals proposals that showcase that neither option provides a better level of clinical care than what is currently provided at the world leading cancer specialist hospital, the Royal Marsden.

We appreciate that this decision has been based on the national service specification that states that all specialist cancer treatment services for children must now be provided on the same site as a Level 3 children’s intensive care unit (PICU), but we believe this decision needs to be reviewed and reconsidered. Whilst we fully appreciate how traumatic it is for children and their families to receive PICU transfers and treatments; the impact of the decision to close and move all of the world-leading services from The Royal Marsden to an alternative London-based hospital, 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.

We implore you to review our points below which clearly outline why the argument being put forward and the supposed ‘Case for Change’ is fundamentally flawed and will ultimately provide a far worse and more fragmented service for the future of children with cancer in the South East of England:

  •      There is absolutely no guarantee that the new service would exceed, or indeed even meet, the current world-leading treatment programmes in place at The Royal Marsden, especially if housed at Evelina London which is not a cancer specialist hospital. No detail has been submitted on a fully funded delivery plan for either option and it would be absolutely vital to see evidence now that could showcase how either would prove a stronger option and not simply meet an arbitrary specification requirement. There is no evidence because there is no guarantee of this.
  •      We are being told that the closure is needed due to the predicted increased need for PICU for future children’s treatments – we have spoken to leading medical experts who dispute this as many future treatments in development will also minimise the need for PICU so the current figures are unlikely to change. In 2022 only 3 children required PICU transfers from the Royal Marsden to St George’s, this is less than 1% of patients.

 Around 1,400 children, aged one to 15, are under the care of the Principal Treatment Centre for South London and much of South East England at any given time. More than 60% of the centre’s patients are from outside London. All these children would face the extended journey time and continued dual and multiple site locations for treatments. More than 1 in 10 patients have 20+ visits to hospital, with some reaching to over 50 visits per child per year.

  •      This does not solve the issue of single-site care.Patients who do not require PICU but do require radiotherapy, among other treatments currently available at The Royal Marsden, would also all be moved and have to travel elsewhere. If Evelina London won the bid, they would not be able to provide Neurosurgery, so patients would still have to travel to King’s or St George’s hospital. The number of patients who require radiotherapy is far greater than those requiring PICU yet these are not being considered in terms of the huge impact this decision will have on them.
  •      Travel times for the vast majority of patients and their families will be negatively impacted – around 63.6% of patients do not live in South East or South West London determining that for the majority of patients their journey times and travel logistics would be increased. This proposal favours the idea that patients would travel by public transport to reduce their journey time to hospital – parents of critically-ill children with weakened immune systems would simply  not risk this. Both hospitals being proposed  have limited parking available and Evelina London is also within the Congestion Charge zone. NHS London would only provide reimbursements for one member of the family to travel with their child, the other parent would be expected to pay all fees in full.
  •     The Institute of Cancer Research, one of the world’s most influential cancer research organisations, is based on the same site as The Royal Marsden Hospitals in both Chelsea and Sutton. Its teams undertake laboratory-based and translational “bench to bedside” drug development research. They work closely with The Royal Marsden, which is a leading centre for cancer research, and St George’s Hospital. This helps turn discoveries made by scientists into new treatments for patients. The co-location of the research labs and the children’s unit in Sutton enables children for whom there is no known cure to be offered drugs on a compassionate basis. These drugs, formulated for adult cancers are not available for children but target the same abnormalities found in children’s tumours.  Moving these children away from the specialists running these trials would render access to these trials very difficult if not impossible. Neither proposal provides a viable option to navigate this effectively and would ultimately impact this crucial aspect of leading cancer research.
  •      This is estimated to cost around £40millionat a time when the NHS is already underfunded, over-stretched and desperately in need of additional budgets and resources – how can this be justified when there are no actual safety or quality issues with the current offering?
  •      The Oak Children & Young People’s Drug Development Unit (OCYP-DDU) is the largest and most active drug development programme for children and young people in the UK.It is also one of the most active first-in-child clinical trial centres in Europe (where new treatments, drugs, therapy combinations or procedures are tested in children for the first time). 
    This proposal highlights the poor decision that NHS London are prioritising meeting standard National specifications over patient choice & specialist care, spending public money and future research developments.

What is the alternative?

There is a simple and effective solution that has previously been discounted without solid justification and we want to push for it to now be approved. We are in agreement with the suggestion of proposing a ‘risk-adapted’ model whereby any patients who, upon diagnosis, are deemed likely to require PICU services throughout the course of their treatment, would receive their specialist care at St George’s hospital to ensure minimal need for transfers.

For the remaining 93% of patients, they would continue to receive the world-leading specialist care of The Royal Marsden including both in and outpatient appointments, on-site access to research specialists and drug trials and radiotherapy treatment.

This would remove the huge transportation challenges, issues of potentially reduced expertise and cohesiveness of care, remove the huge financial burden on the NHS and maintain the quality of care we all believe is crucial to ensure the best outcomes for our children.

There is no other hospital like The Royal Marsden Cancer Hospital in this country – without this hospital and its staff’s expertise; the future of children’s cancer services for South London and most of the South of England are at huge risk of failing.

We are requesting that as senior officials with vast experience and the necessary power to relook at this decision, that you choose to do so. NHS asked the public for their feedback and thousands have provided it. They, as us, don’t want this move, don’t agree it is in the best interest of patients and do not believe it is a justifiable expenditure of publicly funded money.

Thank you in advance for your time and we very much hope you hear from you soon.

Yours sincerely,

Parents, patients and supporters of the #HearTheMarsdenKids campaign

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