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Child B is currently under investigation for significant gastrointestinal symptoms, including chronic constipation, defecatory incontinence, and associated multisystem features. I am concerned that there may have been an attempt to label her condition as “functional” despite clear and documented evidence of structural, neurological, and genetic contributors to her symptoms.
Summary of Key Findings:
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These findings and referrals strongly indicate a complex, organic cause of symptoms involving gastrointestinal motility, connective tissue fragility, neurological regulation, and potential immune/allergic drivers.
Functional Labelling is Inappropriate:
The Rome IV criteria for functional bowel disorders specifically state that such diagnoses should only be made in the absence of identifiable structural, inflammatory, metabolic, or neurological causes. In Child B's case, multiple red flags are already present, including:
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To attribute this complex clinical picture to a functional disorder risks mismanagement, stigma, delayed intervention, and emotional harm to the child and family. This also has implications for educational support, EHCP funding, and access to specialist care.
Request:
I respectfully request that any reference to “functional gastrointestinal disorder” be reviewed and removed from her records unless and until all organic causes have been fully investigated and definitively excluded. Further, I request that:
1. Diagnostic follow-
2. Her bowel and continence needs are recognised as part of a neurogenetic and structural disability profile.
3. This medical complexity is accurately reflected in all clinical summaries, EHCP documents, and multidisciplinary planning.
I trust that Child B's case will be approached with the diagnostic rigor and multidisciplinary support it requires I have requested Martha’s rule since 24 June and kings have consistently refused me they have also demanded Child B be awake during nasal peg being inserted which she was unable to do and I find a breach of reasonable adjustments given you can have under anaesthesia
On Fri, 25 Jul 2025 at 08:51, Jo wrote:
FYI
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From: Jo
Date: Fri, 25 Jul 2025 at 08:46
Subject: Re: Ref: 6373 & 6374
To: COMPLAINTS (KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST) <kch-
Despite repeated emails to PALS and Dr. Rupasinghe, Child B was only seen on the ward after I physically attended and demanded she be reviewed on 18 July, following an A&E admission on 16 July. Since then, there has been no meaningful update, no structured clinical review, and no escalation to appropriate specialists, despite documented bradycardia, ongoing fatigue, nutritional decline, chronic gastrointestinal symptoms, and clear immune dysregulation concerns.
To date, only basic electrolytes were checked on the ward, and I have not been given the results of those tests, which I understand were drawn on or around 24 July. Prior to that, the broader blood panel arranged by Colchester was only completed after I demanded it—and even then, it failed to include key tests linked to Child B’s family history and known clinical risks, such as, immunoglobulins, antibodies, or cytokine profiles and despite known very low esr 2 years ago as per sibling!
The only relevant tests included from our family’s known clinical profile by Colchester were homocysteine and cortisol, but both were taken at approximately 1:00 PM, which significantly compromises their clinical value:
• Cortisol: As per standard NHS and endocrine guidelines, morning cortisol must be drawn between 8:00–9:00 AM. A 1:00 PM sample does not meet diagnostic standards and cannot reliably be used to assess adrenal function.
• Homocysteine: National guidance advises fasting morning collection. Afternoon draws may result in false reassurance, particularly in patients with suspected methylation or B-
Moreover, I have submitted evidence that Child B may have IL-
Jo
On Fri, 11 Jul 2025 at 11:39, COMPLAINTS (KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST) <kch-
Dear Jo,
Thank you for your complaint which has been logged under case ref XXXX & XXXX. I am sorry that you have had cause to contact us and regret that it has been necessary to bring these matters to our attention.
I am writing to confirm that your complaint has been logged and Lisa Mercer, the Complaint Officer assigned has been included in this email to help aid any future contact.
It would also be helpful to understand if you need any adjustments to help with making the service accessible to you. If you need communication support such as an interpreter or information in another language, audio, Braille, Easy Read or large print, please let us know.
Please note we will be sending your response in writing via email, unless you inform us otherwise.
If you have any further questions or queries then please do not hesitate to contact us.
Kind Regards
Patient Complaints Team
0203 299 4618 -
Email: kch-
At King’s, we are a KIND, RESPECTFUL TEAM
From: Jo
Sent: 06 July 2025 10:02
To: COMPLAINTS (KING'S COLLEGE HOSPITAL NHS FOUNDATION TRUST) <kch-
Subject: Urgent Clinical governance kings & CQC
This message originated from outside of NHSmail. Please do not click links or open attachments unless you recognise the sender and know the content is safe.
Governance Team
King’s College Hospital NHS Foundation Trust
Denmark Hill
London SE5 9RS
Subject: Formal Complaint – Diagnostic Failures, Immunology Oversight, and Discharge Against Clinical Evidence in the Care of Child A and Child B.
Dear Sir/Madam,
I am raising a formal complaint regarding serious and ongoing failures in the clinical care of my daughters — Child A and Child B — whose cases were partially managed under services at King’s College Hospital.
These failings include:
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1. Child A – Discharged from Immunology and Gastroenterology Despite Active Investigation
Child A was discharged from both immunology and gastroenterology at King’s while investigations were incomplete, and I had advised she was having abnormal results flag up these include -
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Dr. Doffinger explicitly recommended follow-
2. Child B – Ignored Immunology Red Flags
Child B's records, including documents from Nottingham Children’s Hospital (2016–2017), showed:
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Despite being made aware of this history, King’s failed to initiate any immune follow-
3. Diagnostic Overshadowing and Historical Bias
I am deeply concerned that historical psychosocial narratives, contributed to inappropriate minimisation of genuine clinical risk — including:
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4. Inappropriate Conditions on Care – Dr Andrea Turner (Colchester)
Dr. Andrea Turner (Colchester General Hospital) made access to psychological care for Child B conditional upon her attending a joint appointment with both paediatrics and psychology. This was communicated through her PA in writing, who stated that if Child B found a joint appointment too overwhelming, then “psychology input will not be possible via Acute Paediatrics at Colchester Hospital.”
This effectively amounts to a withdrawal of psychology support based on Child B's neurodivergent needs and trauma history. It:
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5. Enabling of Local Mismanagement – Dr Rupasinghe (King’s)
Dr. Rupasinghe, involved in Kristina’s care at King’s, was aware of the immunology issues and Addenbrooke’s input. He failed to act on:
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By deferring Child A’s care back to a known failing system, Dr. Rupasinghe and King’s as a whole became complicit in the ongoing mismanagement and diagnostic neglect.
6. Child A Now Has No Paediatric Oversight or – Immunology Appointment at Addenbrooke’s Cancelled Without Explanation
Since Child A was discharged from King’s, her care has been left fragmented and unsupported. Most seriously:
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This represents a safeguarding failure. Without any lead clinician — and with Colchester having shown repeated clinical bias — Child A is now clinically stranded.
Formal Requests
In light of these serious concerns, I request:
1. A full internal review into Child A’s discharge from both immunology and gastroenterology at King’s.
2. Immediate re-
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3. A full immunology referral and assessment for Child B, including review of MBL, white cell trends, and family-
4. A safeguarding and governance review into:
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5. A written response outlining next steps and what King’s will do to prevent further harm.
6. That King’s College Hospital assume direct responsibility for Child A's paediatric oversight by formally designating Dr. Wacks — who has already seen her sister, Child B — as Child A's named paediatric consultant and do the same for Child B
7. That King’s urgently refer Child A to Great Ormond Street Hospital (GOSH) Immunology to ensure her care is led by a specialist centre with experience in immune dysregulation and rare paediatric phenotypes.
This case should have had Martha’s law applied and a senior review taken place especially given that Dr Rupasinge had chosen advise from Colchester over his own colleague Dr Wacks, Prof Thomson and Great Ormond St Spinal Team
Please acknowledge this complaint and confirm your process for formal investigation. I am happy to provide further documentation if needed and am prepared to escalate this complaint to NHS England, the GMC, or the CQC if these concerns are not addressed transparently and in full.
Sincerely,
Jo
Ignored Expert Recommendations – Professor Mike Thomson (May 2023)
Child B was reviewed by Professor Mike Thomson, a Consultant in Paediatric Gastroenterology, who made a series of urgent clinical recommendations following his review on 10 May 2023. These included:
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FBC, ESR, LFTs, U&E, calcium, phosphate, ferritin, coeliac screen, total IgA, IgE, zinc, B12, folate, vitamin D, TFTs, faecal calprotectin, elastase, and more.
Despite the above, many of these investigations were never carried out by Colchester, and King’s failed to intervene, even after this expert letter was shared.
This represents a further breach of continuity of care and places Child B at risk due to:
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