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No More Passing the Buck: Maya Deserves Better Than This

Dear PALS Team - Royal Marsden Hospital Sutton

Re: Maya Nash - DOB 23.7.2013 | Hospital number ******


I am writing to request your urgent assistance regarding hospital transport arrangements and care coordination for my 12-year-old daughter, Maya, who has complex mobility needs and is dependent on a wheelchair for mobility, following serious concerns about her safety, dignity, and overall wellbeing during her appointment at The Royal Marsden Hospital, Sutton on 29th April 2026.


Firstly, I would like to express our sincere gratitude for the hospital transport service. We recognise that this is an essential and valuable provision for patients and families, and we are thankful that this support is available. However, the way in which the service was delivered on this occasion— has raised significant concerns about its suitability for a child with complex medical and physical needs such as Maya’s.


By way of background, Maya has been under the care of The Royal Marsden Hospital Sutton since April 2017 under the care of Dr Sucheta Vaidya. Maya was previously an able-bodied child and had been in remission from neuroblastoma for nearly five years before relapsing in July 2023. Following this, she underwent clinical trials including treatments at UCL and Southampton General Hospital, and was later transferred to Great Ormond Street Hospital in August 2025 for CAR T-cell therapy (Magneto trial). Sadly, this treatment resulted in complications including CRS and Grade IV ICANS. As a result, Maya now has motor paralysis. While she retains sensation, proprioception, and continence, she has no control of her trunk, hips, or lower limbs. She is unable to reposition or reshuffle herself and is a double-handler, requiring two carers for all personal care, including pad changes, to ensure her safety and dignity.


To clearly demonstrate the impact of yesterday’s arrangements, please see the timeline below:


09:00am – Maya was ready, as instructed, to be prepared 4 hours prior to her 1:00pm transport pick-up appointment

11:00am – Maya was collected from home (Hythe, Kent CT21 6NR). En route, two additional people were collected from Ashford Hospital, prolonging the journey

2:30pm – Maya’s scheduled 30-minute appointment, which she missed due to delayed arrival

Around 4:45pm – IV pentamidine was commenced. This was not administered immediately following her appointment, resulting in unnecessary delay

Around 6:00pm – Maya completed her IV.


For a child with complex needs, this reflects a lack of coordinated, person-centred care planning and contributed to unnecessary prolonged waiting and additional distress which could have been avoided

7:00pm – Day Care unit closed; Maya and her father were transferred to the ward to wait for hospital transport (“passing the buck?”)

Around 10:00pm – Transport finally arrived to take Maya home, but another patient needed to be dropped off first in Dartford, Kent

12:20am – Maya arrived home in Hythe, Kent, after further delays due to additional drop-offs


This meant that what should have been a 30–90 minute appointment became an all-day (over 15-hour) and very late-night ordeal for a seriously vulnerable child.


During transport, Maya was seated for prolonged periods in her wheelchair without the ability to reposition herself, causing hip and back pain, placing her at high risk of skin breakdown, and showing clear signs of distress. Maya, who is immunosuppressed, was also required to travel alongside another patient who was persistently coughing and repeatedly expressing distressing statements about dying from cancer ("I'm fed up waiting for transport today and I'm dying of cancer."). This raises serious concerns regarding infection risk, psychological wellbeing, and overall suitability of shared transport for a child in Maya’s condition. We were concerned that the patient may have been infectious, given the persistent coughing, which posed an unacceptable infection risk to Maya as an immunosuppressed child.


Additionally, my mother-in-law, Dora Nash, was not permitted to travel with Maya, as only one escort was allowed. This is not appropriate for Maya’s needs. Maya requires two carers present to safely carry out personal care, including pad changes, with dignity and appropriate manual handling to reposition her and relieve pressure. In the event of unforeseen delays—such as traffic incidents or major disruption on routes such as the M20, M25, or M26—there would be no safe or dignified way for her needs to be managed within the transport setting. This raises serious concerns about how her basic care needs would be met if she required urgent attention during transit, including situations where she may soil herself and require immediate assistance. It also calls into question where anticipatory care planning has been considered in these arrangements, given that such risks are entirely foreseeable.


The situation is further compounded by inappropriate transport scheduling. Maya is routinely collected excessively early to accommodate other patients, which is not suitable given her condition. Sharing confined transport with multiple unwell passenger(s) places her at increased risk of infection.


In addition, there are prolonged delays in arranging return transport, resulting in her remaining on the hospital ward unnecessarily for extended periods (where in fact, it was meant to be a day care appointment)m to sign consent forms). Whilst we are grateful that a bed was provided, this does not mitigate the impact of these delays. We would also like to sincerely thank the ward senior nurse, Abigail, for her kindness and attentiveness in ensuring that Maya had a sandwich at tea time and that her NG tube was accessed for water feeds, which we greatly appreciated. However, Maya was still left waiting until 10:00pm with only that sandwich provided at tea time, which was insufficient, leaving her hungry for several hours. The café was closed by this time (they close at 5pm). Although Maya and her father Terence Nash could have considered ordering takeaway food, this was not a viable option due to the lack of clear communication regarding transport arrival times. They were given varying estimates ranging from 8:00pm through to 10:00pm (transport could turn up at any time), making it extremely difficult to plan or safely order food (Uber food delivery) without risking missing the food delivery. Due to additional patient drop-offs, Maya is subjected to prolonged periods in her wheelchair to accommodate transport arrangements for others—this does not meet her clinical or basic care needs.


This situation:


-Caused Maya to miss her scheduled appointment. Two more people had to be picked-up enroute to The Royal Marsden. Unfortunately, the driver also got lost and was heading to Gatwick airport- this did not help with the situation, hence missing her scheduled appointment. But we understand that these things can happen.

-Exposed her to infection risk

-Left her in prolonged discomfort and pain due to inability to reposition (Maya was silently whimpering).

-Placed Maya in situations where her manual handling needs could not be safely met, compromising her dignity and basic care needs.

-Failed to accommodate her requirement for two carers.

-Is not compatible with person-centred care and raises serious safeguarding concerns.


I would be very grateful for your urgent assistance with:


-Reviewing yesterday’s events and supporting immediate improvements please

-Ensuring Maya is clearly documented as a double-handler requiring two carers

-Updating her transport needs to specify: “requires 2 escorts for personal care/manual handling needs”

-Arranging dedicated/direct transport for future appointments, with no additional patient pick-ups and with appropriate timing aligned to her appointments

-Supporting improved coordination of her care plan to avoid unnecessary delays between treatments or procedures


This is particularly important with Maya’s upcoming CT planning scan and radiotherapy appointments, where consistency, safety, and minimising distress and infection risks are essential. This concerns Maya’s care under the Children Act 1989 and Children Act 2004, where the child’s welfare is the paramount consideration. We are also mindful of the NHS duty to provide safe, dignified, and appropriate care at all times, particularly where complex disability and manual handling needs are present.


Thank you for your support in ensuring that Maya’s care is safe, dignified, and appropriate to her complex needs. Given the seriousness of the concerns raised, I require a prompt response please outlining what immediate actions will be taken to prevent a recurrence, particularly in light of her upcoming CT planning scan and radiotherapy at The Royal Marsden Hospital, Sutton within the next week or two.


Following the delays and transport issues, Maya did not settle into bed until after 1:00am. By this time, she had developed noticeably swollen legs and an increasingly puffy face. This is deeply concerning and highlights the physical impact these failures are having on her wellbeing. My family and I strongly feel that it is not acceptable that transport and discharge arrangements are contributing to a deterioration in her condition.


I would appreciate a clear response within a defined timeframe please, including the steps that will be taken to ensure her safety, comfort, and dignity are prioritised going forward.

P.s. We have submitted an application for a WAV (wheelchair accessible vehicle) via Motability Scheme on 30th March, on the day Maya was discharged from Great Ormond Street Hospital. And we have been informed yesterday by the Vehicle Dealer that the whole process could take as long as 4-6 months from start to finish.


Best wishes,

Dellanie Nash

(On behalf of my daughter Maya Nash)

Email sent to PALS Royal Marsden Hospital Sutton on Thursday 29th April 2026.


Reply received on 30th April 2026:

Dear Dellianie


I'm so sorry to learn of Maya's very long day. She must be exhausted. Kent & Medway ICB provide Maya's transport and the contractor is G4S. Complaints and feedback should be made via the G4S feedback portal or by calling 0800 953 413.


I have asked the relevant nurse practitioner to investigate the timing of the administration of Maya's Pentamidine infusion and to make contact with you.


Regards


***** ****

Patient Liaison Advisor/Bereavement Officer

The Royal Marsden NHS Foundation Trust


Oh well, I honestly believe that the PALS response felt insensitive and marked by indifference, reducing a 15-hour ordeal to a “long day” rather than acknowledging a serious failure in safe, compassionate care. Redirecting the issue elsewhere came across as “passing the buck”, without recognising that Maya’s complex needs were not properly accounted for. The Royal Marsden NHS Foundation Trust has a duty of care to provide safe, anticipatory care and safeguard her wellbeing.


When I read the initial response, naturally I felt a wave of anger. I started constructing and typing my reply straight away — the kind that comes from pure frustration and hurt. But I also fell asleep, which kind of stopped myself in the process, giving me a pause. Because this isn’t about venting, it’s about getting the right outcome for Maya. In fact, I feel asleep so the angry email never get sent. In the meantime, Maya’s CNS (Clinical Nurse Specialist) emailed with a sincere apology. That moment shifted something — a reminder that behind the system, there are individuals who do care and are trying to make things right.


Emailed to me by Maya’s CNS on 1st May 2026:


“Hi Dellanie,


I am so sorry to hear that Maya had such a difficult time with Transport on Wednesday. Tia has spoken toG4s Transport team regarding these issues, and they have advised that a clinician fills out the MTA (Must Travel Alone) form. I have filled this in and sent it to G4s with a booking request for transport on 07.05.26. A request for two escorts has also been made. . If you would like to make a formal complaint, please email km.pts1@nhs.net.

Again I am really sorry that Maya and Terry such a poor experience on Wednesday.


Best Wishes,


******”


As to which I have immediately replied to Maya’s CNS:


Hi ******,


Thank you for completing the MTA (Must Travel Alone) form.


Could you please confirm whether transport will be arranged to be readily available once Maya’s appointment has finished, to take her and two carers home? Or will there still be a waiting period until transport becomes available?


On Wednesday 29th April, although Maya finished by 6pm, the transport request was handed over to the night shift. Terry was then advised that collection could be anytime between 8:00pm and 10:00pm, as the vehicle was still at another hospital.


It would not be appropriate for Maya to be left waiting for several hours unnecessarily after her appointment, so I’d appreciate clarification on how this will be managed going forward.


Thank you for your help,

Dellanie


Let’s see what Maya’s CNS says!


Now that I’ve had a few days to come up for air and reflect on what happened on 29th April, I’ve rewritten what I would have said in that moment. When you step back, the details don’t soften — they become clearer, heavier, harder to accept.


This is what advocating for a child with cancer, disability and complex needs looks like. It is constant. It is exhausting. And it is never something you get to switch off. You don’t stop fighting for what is right for your child, even when you’re running on empty and your child is the one who has already been pushed past their limit.


Maya was brougbt home well past midnight that night. She was in pain, swollen, and utterly depleted after a 15-hour ordeal that should never have happened. The anger and helplessness of that moment doesn’t just disappear with sleep — it lingers, because you’re left holding a child who has paid the price for systems that didn’t hold her safely enough.


My proposed reply to PALS The Royal Marsden hospital:


“Dear ***** ****


Thank you for your response and for escalating the timing of Maya’s Pentamidine IV infusion.


Whilst I acknowledge your reply, I must be candid in stating that the wording felt generic and did not reflect the seriousness or safeguarding implications of the concerns raised. This situation goes far beyond a “long day”; it represents a series of systemic failures that had a direct and detrimental impact on Maya’s safety, dignity, and wellbeing.


Maya’s experience on 29th April was a 15-hour ordeal that left her in pain, visibly swollen, and extremely distressed. Following this, she was bed-bound for a couple of days and unable to engage with her physiotherapy session on Friday 1st May due to significant pain. The PT/OT do home visits for her sessions and they could see for themselves the suffering Maya went through the night before. Maya’s symptoms escalated to the point that morphine had to be administered, and we needed to request a new prescription from our GP, as the existing bottle had last been opened in August 2025.


In addition, just as Maya had been recovering from a cough, her symptoms appeared to return shortly after this journey. While this cannot be confirmed and attributed to the other transport passenger, there are serious concerns about possible exposure during shared transport with an unwell passenger who was persistently coughing and verbally expressing distress about being “dying of cancer.” Given Maya’s immunosuppressed condition, this raises significant infection control concerns.


Overall, this raises serious concerns about the safety and suitability of the current transport and care coordination arrangements.


While I understand that transport is commissioned via Kent & Medway ICB and delivered by G4S, I do not feel it is appropriate to separate responsibility in this way. The arrangements in place reflect the clinical information and requirements provided by the treating team. In Maya’s case, her complex needs — including being a double-handler, requiring two carers, and requiring robust infection control considerations — were not adequately reflected in the transport provision. And I will be honest that your advice to contact the local ICB to make a complaint to them felt like “passing the buck”. The ambulance crew were doing what was instructed to them. One patient + 1 escort.


As her treating Trust, The Royal Marsden NHS Foundation Trust has a duty of care to ensure that services delivered on its behalf are safe, anticipatory, and safeguard her wellbeing, particularly given her vulnerability as a child with significant medical and physical needs.


I appreciate that Maya’s Clinical Nurse Specialist has been in touch, and as a family, we are very grateful for that support. However, I would welcome clear clarification on how transport will be managed going forward.


Specifically:

- Will transport be arranged to be available promptly once Maya’s appointment has finished, to take her and two carers home?

- Or should we expect the usual waiting period of several hours after Maya’s appointments until transport becomes available?


On Wednesday 29th April, although Maya finished at approximately 6:00pm, the transport request was handed over to the night shift. Terry was advised that collection could be anytime between 8:00pm and 10:00pm, as the vehicle was still completing other journeys. This resulted in a prolonged and unnecessary wait. If Maya had left the Royal Marsden hospital at 6:00pm, she would have been home at a more decent time and not well past midnight. But that’s without taking account that she was asked to be ready to go at 9:00AM.


It would not be appropriate for Maya to be left waiting for several hours after treatment, given her condition and care needs. I would therefore appreciate confirmation of what measures will be put in place to prevent this from happening again.


I look forward to your response.


Kind regards,

Dellanie Nash

(Advocating for my child Maya Nash)“


Shall I send this proposed reply to see it through? Or shall we just make our own arrangements, hire a WAV [Wheelchair Accessible Vehicle], find our way when there’s little help and no compassion? This is absolutely exhausting me!


If you have read this far, thank you! Truly.


We understand that hospital transport will collect Maya from home and take her directly to her appointments at The Royal Marsden Hospital. However, based on recent experience, we are deeply concerned that there may still be several hours of waiting after her treatment has finished before return transport becomes available. We understand that the NHS transport is not a private taxi firm. It is free but certainly it isn’t meeting Maya’s clinical needs.


For Maya, who is already physically vulnerable and unable to reposition herself, this is not just inconvenient — it has a real impact on her comfort, pain levels, and overall wellbeing.


Because of this, we are now seriously considering privately hiring a wheelchair accessible vehicle (WAV) to ensure Maya can travel safely, directly, and without unnecessary delays until her own WAV grant is approved and in place.


If you feel able to support us with WAV hire costs, we would be incredibly grateful.


PayPal (gift):


Bank transfer:

Mrs Dellanie Nash - Lloyds Bank

Sort code: 30-93-34

Account number: 40263960

Reference: Maya’s Journey


Monthly cost


Every single contribution, no matter the amount, helps us protect Maya’s comfort, dignity, and safety during a very critical stage of her treatment.


From the bottom of our hearts, thank you for standing with Maya and helping us carry her through this journey.


Some days, advocacy feels like paperwork. Other days, it feels like survival. And sometimes it feels like sitting in the dark after midnight, holding your child and wondering how something so preventable was allowed to happen.


But when it’s your child, you don’t get to step away from it. You learn to speak up, even when your voice shakes. You learn to keep going, even when you’re exhausted. Because silence is never an option when it comes to your child’s safety, dignity, and care.


And so we continue — not because we want to fight, but because we have to protect.


“Parents will move mountains, rewrite systems, and fight battles they never asked for — because their child is worth every step.”





 
 
 

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