Dear Dr Henderson, Re: Regulation 28 Report to Prevent Future Deaths – Rose Annie Harfleet who died on 30 January 2024.

Thank you for your Report to Prevent Future Deaths (hereafter “Report”) dated 13 May 2025 concerning the death of Rose Annie Harfleet on 30 January 2024. In advance of responding to the specific concerns raised in your Report, I would like to express my deep condolences to Rose’s family and loved ones. NHS England is keen to assure the family and yourself that the concerns raised about Rose’s care have been listened to and reflected upon.

Your Report raises concerns around the management of children with profound disabilities within a hospital setting, and the lack of national or local guidance to assist staff in appropriately managing patients such as Rose, who may be reliant on others to advocate on their behalf. My response to the Coroner has been supported by NHS England’s national Children and Young People and Learning Disability Teams.

From the standpoint of learning disability liaison nurses, there is currently no national accepted protocol for how and when liaison nurses should be engaged in someone’s care. This is due to the fact that different hospitals have a variety of processes for enacting secondary referrals and, to a degree, they should be afforded this autonomy. However, when it is clearly specified and evident that a patient has a specific diagnosis and particular needs arising from their disability then, in accordance with the Trust’s duties under the Equality Act 2010, they should endeavour to make ‘reasonable adjustments’. In cases such as Rose’s, the provision of learning disability liaison nurses is one such adjustment, affording patients and their families a level of assurance that their care will be ‘adjusted’ as needed. I am very sorry to hear that Rose and her mother were not introduced to a learning disability liaison nurse during her time in the Emergency Department. I note that your Report has also been sent to the Royal Surrey NHS Foundation Trust, and hope that they will be able to address this issue further in their own response.

NHS England is due to publish a national competency framework for learning disability liaison nurses, which will help to strengthen some of the processes which determine when the input of liaison nurses should be sought. In addition, it will help to address some of the gaps which have been observed whereby, in some instances, learning Co-National Medical Director NHS England Wellington House 133-155 Waterloo Road London SE1 8UG 7 July 2025

disability liaison nurses are not being consistently notified when a patient with a learning disability is admitted to hospital.

Oliver McGowan Mandatory Learning Disability and Autism Training being made mandatory will further equip all staff to better recognise the need to provide reasonable adjustments. The training is named after Oliver McGowan, whose death highlighted the need for health and social care staff to have better training for treating people with learning disabilities and autism. The Health and Care Act 2022 introduced a statutory requirement that all CQC-registered providers must ensure their staff receive learning disability and autism training appropriate to their role, and the Oliver McGowan Training is the preferred and recommended training for all health and social care staff. On 19 June 2025, the Department of Health and Social Care (DHSC) also launched the Oliver McGowan Code of Practice, setting out clear standards for training on learning disability and autism. In June 2024, NHS England published a Health and Care Passport guidance and template which aims to support personalised care for people with a learning disability and autistic people, including when they go into an acute hospital. NHS England is also undertaking further work to make sure that staff in health settings know whether they need to make reasonable adjustments for people. This includes the development of a Reasonable Adjustment Digital Flag, which enables the recording of key information about a patient, including if a person is autistic or has a learning disability, and their reasonable adjustment needs, to ensure support can be tailored appropriately.    The Trust’s services will still need to determine how they ensure access to reasonable adjustments, such as the input of learning disability liaison nurse support. As above, I note that your Report has also been addressed to the Trust and I would refer you to their response for further information on their local processes. NHS England will also consider their response in due course. I would also like to provide further assurances on the national NHS England work taking place around the Reports to Prevent Future Deaths. All reports received are discussed by the Regulation 28 Working Group, comprising Regional Medical Directors, and other clinical and quality colleagues from across the regions. This ensures that key learnings and insights around events, such as the sad death of Rose, are shared across the NHS at both a national and regional level and helps us to pay close attention to any emerging trends that may require further review and action.

Thank you for bringing these important patient safety issues to my attention and please do not hesitate to contact me should you need any further information.

Dear Dr Henderson,

Further to your Prevention of Future Deaths (PFD) Notice issued on 13th May 2025, following the conclusion of your inquest (3rd March 2025) into the death of Rose Annie Harfleet (aged 12 years) who died on 30th January 2024, we would like to extend our sympathy and condolences to Rose’s family and friends.

Rose and her mother attended the emergency department (ED) of Royal Surrey County Hospital, on the 29th January 2024, with symptoms of intestinal obstruction. From your PFD notice it appears the need for surgical assessment was recognised but this did not happen before or after transfer to a children’s ward.

Regarding your specific concerns:

1. The management of children with profound disabilities within a hospital setting In September 2024, the Royal College of Emergency Medicine (RCEM) published a Learning Disabilities Toolkit [1]. This resource includes information about how best to approach the management of people with a learning disability and suggestions on how to make reasonable adjustments in an ED setting. The toolkit also makes specific mention of intra-abdominal pathology and aspiration. The RCEM also provide additional online educational resources related to Learning Disabilities [2]. The RCEM feel it would not be appropriate to comment about the care delivered in the in-patient setting.

2. Guidelines - consultation with parents and guardians of children with profound disabilities within a hospital setting The RCEM Learning Disability Toolkit [1] emphasises the importance of listening to family and carers of people with a learning disability in the ED. The RCEM are represented in the group developing the ED version of the national paediatric early warning system (nPEWS) with NHS England. A key component of the nPEWS (and the current draft of the emergency department specific nPEWS score - EDnPEWS) is parental/carer concern [3]. The response from the parent/carer is built into the escalation response. The RCEM is also supportive of the work just commencing via NHS England’s Patient Safety Collaborative, which is looking to test the use of Martha’s Rule in the ED setting. We would also note

that not only does the RCEM Learning Disabilities Toolkit promote specific education and training for ED staff with regards learning disabilities, we recognise that this training is also a mandatory requirement for all healthcare staff [4] and is often delivered very successfully through the eLearning for Health platform [5] as the Oliver McGowan Mandatory Training on Learning Disability and Autism.

3. Nursing and Medical care on the ward The RCEM feel it would not be appropriate to comment about the care delivered in the in-patient setting.

4. The Role of the Learning Disability Nurse The RCEM is fully supportive of Learning Disability Nurses taking on a liaison role within the ED setting for appropriate patients. The RCEM Learning Disability toolkit specifically recommends that a member of the ED staff is identified as a link with the hospital learning disability team. The provision of Learning Disability Nurses within individual hospitals is outside of the remit of the RCEM.

Thank you for bringing Rose’s tragic case to our attention. I hope that the above response gives some reassurance that the RCEM are working to highlight the health inequalities suffered by people with a learning disability and providing resources for EDs to improve the care they deliver.

Dear Dr Karen Henderson,

Re: Regulation 28 Report following the inquest into the death of Rose Annie Harfleet

Thank you for raising the Regulation 28 report with us, following the inquest into the death of Rose Annie Harfleet on 30 January 2024 at Royal Surrey County Hospital part of the Royal Surrey NHS Foundation Trust. We would like to extend our sympathy and condolences to Rose’s family and friends.

We will respond to each of your concerns in turn.

The management of children with profound disabilities within a hospital setting.

Your concerns relate specifically to the availability of national or local guidance. We are unable to comment directly on this point due to it being outside of the remit of our regulatory scope, and there are other respondents who would be best placed to respond directly to this question.

We do however, acknowledge the lack of understanding of patient needs, and poorer treatment outcomes for patients with a learning disability, in the acute setting, is a known problem. There have been a few research studies undertaken. How to improve hospital care for children with learning disabilities specifically focuses on children and Who I am matters is CQC’s thematic review into the experiences of autistic patients and patients with a learning disability from 2022.

With unwarranted variation in care and the poorer outcomes sometimes experienced by people with learning disabilities, autism or both it has been recognised trusts need to Care Quality Commission Citygate Gallowgate Newcastle upon Tyne NE1 4PA Telephone: 03000 616161

sustainably improve many of their services. NHS England introduced the Learning Disability Improvement Standards for Trusts an annual benchmarking exercise to measure trusts performance against a set of standards. These standards provide a benchmark against which all trusts, be they universal or specialist healthcare providers, can measure their performance in delivering services to people with learning disabilities, autism or both, with an aim to drive quality improvement.

Guidelines - consultation with parents and guardians of children with profound disabilities within a hospital setting

Speaking with and respecting patients’ families is a key aspect of the mandatory learning disability and autism training (aka the Oliver McGowan training) so all clinicians involved should be aware of this. A difficulty with regard to the implementation and regulation of providing this training has been the delay to the publication of the Code of Practice. This will give providers and CQC staff clearer guidance on the requirements of the training and for CQC to regulate. Interim guidance is available on our website.

Nursing and Medical care on the ward

We last assessed the Children and Young Persons Assessment Service Group in June
2024. This was a focused planned assessment which looked at 6 priority quality statements. Parents we spoke with spoke positively about the team approach taken by those caring for their children. One parent spoke about an awareness of the needs of their individual child and how it had been particularly important there had been a multidisciplinary approach, drawing on different people’s expertise and knowledge as their child had multiple needs. The assessment only reflected a snapshot of time and from the information provided. It is not a reflection of the experiences of Rose and her mother. We acknowledge this and that this may have been very distressing for Rose’s family.

Rose’s case is being reviewed in line with the Care Quality Commission’s Specific Incident Guidelines. These guidelines describe the process for the organisation to take criminal enforcement action against providers, where a single specific incident, resulted in avoidable harm or exposure to a significant risk of avoidable harm, the incident and resulting harm provides evidence of a serious breach of a prosecutable regulation by the provider and the breach was the responsibility of the provider.

Role and Provision of the Learning Disability Nurse

The nursing team had access to a dedicated paediatric learning disabilities nurse, although this was a time limited service, which resulted in them not being available during Rose’s admission.

If you have any questions about this letter, you can contact our National Customer Service Centre using the details below:

Telephone: 03000 616161

Email: Enquiries <Enquiries@cqc.org.uk>

Write to: CQC Operations South Citygate Gallowgate Newcastle upon Tyne NE1 4PA

If you do get in touch, please make sure you quote or have the reference above reference number to hand. It may cause delay if you are not able to provide it to us.

Dear Dr Henderson,

Thank you for conducting a thorough and detailed review of the care provided to Rose Harfleet at the inquest which concluded on the 5rd March 2025. I would like to once again take the opportunity to extend our sympathy and condolences to Rose’s family and friends and to again apologise for the failings in Rose’s care that were identified during the inquest. I welcome the opportunity to address the concerns which you have raised in your Prevention of Future Deaths report issued on the 13th May 2025. In response to the concerns raised in the Prevention of Future Deaths Report:
1. The management of children with profound disabilities within a hospital setting Much of the national guidance refers to ‘people’ and is often based on reviews/studies related to adults with Learning Disabilities. Guidance which specifically addresses the management of children with profound disabilities within a hospital setting is limited and drawn from a number of other associated documents. The Trust has a Learning Disabilities and/or Autism Policy to Support Children and Adults with Learning Disability and/or Autism. This has been developed in accordance with other national and local guidelines, including the Mental Capacity Act 2005, Learning from lives and deaths – People with a learning disability and autistic people (LeDeR) policy (2021), NICE NG93 mental capacity, reasonable adjustments and quiet areas, NG11 restraint, Autism Spectrum Disorder in Adults; Diagnosis and Management – Clinical Guide CG142 (NICE 2016), NHSE LD&A Programme 2025 Digital flagging and hospital passports and the Equality Act (2010). Specifically the Trust policy includes an emergency admission flow chart and information about supporting carers and engaging with them in decision making including care and interventions. As part of our commitment to engage in person centred care, the Trust also engages with the national Learning Disability Improvement Standards Programme, led by NHS England. The latest annual benchmarking exercise was undertaken in 2024-25 which assessed the Trust’s performance across four areas, namely respecting and protecting rights, inclusion and engagement, workforce development and specialist care and support. This exercise has identified key areas of progress, as well as priority areas for development over the next year.

There are educational resources available nationally relating to Learning Disabilities and Autism (LD&A). Locally the Trust has a number of resources available for staff which supports staff awareness of both adults and children accessing services with a Learning Disability. This includes information about the following:  The Learning Disability & Autism Championship Network – the Trust has champions across many areas, including the Paediatric and Adult Emergency Departments, and Hascombe Childrens Ward. The Champions receive specific training 6 times a year from the Learning Disability and Autism Team within the hospital. In total there are currently 49 champions in the Trust.  Easy read leaflets titled ‘Going to Hospital’ for children in the Emergency Department and ‘Where does it hurt?’ picture communication card.  A pictorial ‘Hospital Communication Book’ which is available on all wards, and within the Emergency Department and is downloadable from the Trust intranet.  Posters have been developed for Adult and Paediatric ED waiting areas to ask patients to let us know on check in if they have a neurodiversity.  Our digital patient record flag system provides early notification of children presenting to the Trust with a Learning Disability. There is also a specific national mandatory training package that addresses the needs of patients with LD&A called the Oliver McGowan Training. The Trust began its collaboration with Surrey Heartlands Integrated Care Board in 2023 to support the implementation of Oliver McGowan Mandatory Training on Learning Disabilities and Autism across Surrey. This standardised training is required for all staff, with completion of either Tier 1 or Tier 2 depending on their role within the Trust. The first stage of both tiers consists of an eLearning module, accessible via the Trust’s My Learning portal, and this is mandatory for all staff, regardless of their clinical or non-clinical role. Tier 2 training then progresses to either a full-day face-to-face session or a one-hour interactive online training, both of which are delivered by experts by experience. This training is provided by an external organisation approved by Surrey Heartlands Integrated Care Board and remains available to all Trust staff via the My Learning portal. Availability of face-to-face training is restricted to 30 candidates per session in order to support the wellbeing of the training team, some of whom have lived experience of Learning Disability and Autism. The Trust has procured training sessions to support roll out across the Trust over the next year. The full implementation of the training program is in its final phase, introducing the one-hour online interactive session, which has recently been made available through the training provider. Completion rates are monitored by the Deputy Director of Nursing and the Adult Learning Disability and Autism Clinical Nurse Specialist. Training is actively promoted through internal communication channels, including staff bulletins, posters, and internal networks. 89% of our Paediatric staff have completed, or are booked to complete, the face-to-face training, the remaining 11% have recently started in post and have completed their on-line training and are awaiting their face-to-face training. In the Emergency Department 100% of Paediatric nursing staff have completed their on-line training and are awaiting their face-to-face training. In addition to this mandatory training, we continue to provide Trust-specific training, integrating it into staff clinical induction program. The Trust Learning Disability and Autism Team also provide Learning Disabilities and Autism awareness training to new starters to the Trust, Foundation Year 1 and Foundation Year 2 Doctors, International Nurses, and as part of the Health Care Assistant Care Certificate Course. Bespoke training is also provided across the Trust tailored to the specific needs of departments delivering care.

The Trust has also reviewed the Royal College of Emergency Medicine’s (RCEM) Learning Disabilities Toolkit, published in September 2024 which promotes specific education and training for Emergency Department staff.

2. Guidelines - consultation with parents and guardians of children with profound disabilities within a hospital setting The Oliver McGowan training and the RCEM Learning Disabilities Toolkit both promote the importance of engaging with, and listening to, the family or other carers of patients with LD&A and this guidance is equally relevant to all patients with profound disabilities of whatever cause. Several of the nationally available paediatric early warning scores designed to detect the deteriorating patient and trigger additional clinical review also contain a parameter for staff and / or family / carer concerns. The Trust is not however aware of any specific national guidance on consultation with the parents and carers of children with profound disabilities although the Trust recognises that this is an essential part of good clinical practice. Whilst not specifically related to children with profound disabilities, the Trust is aware of Martha’s Rule, and have been selected to be part of Phase 2 for implementing this. Work has commenced to address the three metrics for delivery for adults and children.  Patients will be asked, at least daily, about how they are feeling, and if they are getting better or worse. This information will be acted on in a structured way.  This escalation route will also always be available to patients themselves, their families and carers, and advertised across the hospital.  All staff will be able, at any time, to ask for a review from a different team if they are concerned that a patient is deteriorating and their concerns are not being responded to.
3. Nursing and Medical care on the ward The Trust recognises that the care provided to Rose both in the Emergency Department and following admission to our Paediatric ward did not meet the high standards that we would expect and that communication with Rose’s mother was inadequate. As documented in the response to question 2 above the importance of communicating with, and listening to, the patient’s family and carers is embedded within the Oliver McGowan Training, the RCEM Learning Disabilities Toolkit and the national paediatric early warning scores. All clinical staff receive mandatory Oliver McGowan training and appropriate training for staff in the use of early warnings scores. In addition to this all Paediatric nurses completed training in confident discussions and raising concerns, pain management, Patient Early Warning Score (PEWS), escalations of care and completed simulation training. 7 overseas nurses have also completed the Evelina Hospital Principles of Paediatric Nursing Training Course.
4. LeDeR Role The Trust Adult Learning Disability Liaison service is provided by Surrey and Borders Partnership who are commissioned by Surrey Heartlands Integrated Care Board to provide 1 whole time equivalent (wte) band 7 and 0.8wte band 6 Adult Learning Disability nurses. This service supports patients with a Learning Disability who are registered with a Surrey Heartlands GP who are aged 18 and over. There is no commissioned service for a paediatric Learning Disability and Autism nurse.

In addition, the Royal Surrey Foundation Trust funds 1 wte Adult Clinical Nurse Specialist (CNS) and 1 wte Children & Young People’s CNS. They provide support to patients with Learning Disability as well as autistic patients. They can provide support to patients from any geographical area. This provision is unique to the Royal Surrey, in that we are the only Trust within our ICB with a designated Children and Young People’s (CYP) Learning Disability and Autism Clinical Nurse Specialist. The CYP Learning Disabilities and Autism Nurse Specialist works Monday – Friday, 08:00 – 16:00. Rose arrived in the Emergency Department on Monday 29TH January and an initial assessment was undertaken at 13:14. Rose was then clerked by an Emergency Doctor at 16:27. Very sadly, Rose passed away before the CYP Learning Disability Nurse returned on Tuesday 30th January, when the CYP Learning Disability Nurse provided support to Rose’s family. There was potentially an opportunity for the CYP Learning Disability Nurse to have been contacted by the Emergency Department team following Rose’s arrival at 13.14 and prior to the clerking by the Emergency Doctor. The Emergency Department team have been reminded of the presence of the Learning Disability Nurse during working hours and that they can be contacted to help support staff, patients and their families. The Trust is also aware of the National Confidential Enquiry into Patient Outcome and Death (NCEPOD). NCEPOD is currently conducting a study on acute illness in individuals with a Learning Disability, commissioned by Healthcare Quality Improvement Partnership (HQIP). The aim is to identify avoidable and modifiable factors in the care of patients with a learning disability who are admitted to hospital in a critical condition. This is mainly related to adults with a Learning Disability. RSFT’s Learning Disability and Autism Clinical Nurse Specialist for adults, an intensive care consultant, and the sepsis lead nurse have all been selected as reviewers for this study and are actively participating in case evaluations. During a recent review meeting, the Learning D&A nurse proposed Quality Improvement projects, including the development of a Learning Disability Admission Checklist at RSFT. This checklist will provide key prompts for staff when admitting patients to Emergency Departments and establish a system to record reasonable adjustments that help ensure equitable access to Trust services. The Trust is taking this initiative forward in Quarter 3, 2025. Thank you for the opportunity to respond to your concerns and I hope that the information contained within this letter is useful. Royal Surrey Foundation Trust will continue to promote education and training addressing the care of patients with profound disabilities and will take forward quality improvement work such as the Learning Disability Checklist mentioned.

Dear Dr Henderson,

Re: RCPCH Response to the Inquest Touching the Death of Rose Annie Harfleet A Regulation 28 Report – Action to Prevent Future Deaths

Thank you for sharing your report with us regarding the tragic and untimely passing of Rose Annie Harfleet. I was very sorry to hear of Rose’s death.

We have considered your report carefully and respond below to the four concerns noted.

1. The management of children with profound disabilities within a hospital setting

The RCPCH Facing the Future standards describe how paediatric care should be delivered to provide a safe and sustainable, high-quality service that meets the health needs of every child and young person. Our Facing the Future: Emergency Care Standards apply to all persons up until the age of 18. These standards aim to ensure that urgent and emergency care is fully integrated to ensure children are seen by the right people, at the right place and in the right setting. We are currently in the process of review, revision and update of our current standards, to be published in Autumn 2025.

Our currently available Facing the Future: Emergency Care Standards (2018) contain a dedicated chapter on children with complex medical needs. Three of these standards have particular relevance:

• Standard 49: Triage systems must consider the additional requirements of prioritising care for children with complex medical needs.
• Standard 50: When treating a child with complex medical needs, the need to consider early escalation for senior review should be included in all training and induction.
• Standard 51: When treating a child with complex medical needs, staff should ask to see the child’s emergency care plan.

The revised standards are due to be published in Autumn 2025 and will be shared with all relevant professionals working in emergency care settings. I will share your report with the Chair of our Intercollegiate Committee for Emergency Care who is leading this work for their information.

2. Guidelines - consultation with parents and guardians of children with profound disabilities within a hospital setting

Good medical practice, produced by the General Medical Council, sets out the principles, values, and standards of professional behaviour expected of all doctors. This includes requirements that doctors must “treat all patients fairly and without discrimination, including those with disabilities” and that “doctors are required to consider and respond to the communication needs of all patients, including those with disabilities.” RCPCH has no authority over provision of nursing care on wards but notes that the Nursing and Midwifery Council states how nurses “must take account of individual differences, capabilities and needs” and “use a range of communication skills and technologies to support person-centred care and enhance quality and safety”.

3. Nursing and Medical care on the ward - the importance of listening and responding to Rose’s mothers ongoing concerns

Our response to point 2 above recognises the responsibility of clinicians to listen and respond to patients and their families. All parents are experts in their own children, however this is often particularly the case in those children with complex needs.

RCPCH are actively supporting the role out of Martha’s Rule. Martha’s Rule is a patient safety initiative currently being piloted in England which aims to empower all staff, patients and their families to seek an independent medical review if they feel their concerns about a patient’s care are not being adequately addressed. The rule is designed to give families the ability to directly request an expert review by a senior clinician not within the immediate care team, potentially identifying critical issues before they result in harm. 

By establishing this right to an independent review, Martha’s Rule improves ability to recognise and respond to deterioration by incorporating parents and families as part of the team. It formalises an escalation route for parents, carers and families to use to ensure their concerns are listened to and acted on and encourages transparency and collaboration.

RCPCH contributed to the early working groups for Martha’s Rule, sharing our members expertise on the unique and complex paediatric environment, in particular highlighting the challenges associated with paediatric ICU availability, the need for workforce training and capacity building in order to implement this important patient safety initiative. We continue to engage with NHS England as data from the pilot sites emerge

In addition, RCPCH are committed to the introduction, embedding and appropriate standardisation of Paediatric Early Warning Systems (PEWS) within the four nations. PEWS are designed to effectively recognise and respond to the deterioration of children or young people in a healthcare environment. A parental escalation process is essential to any effectively PEWS. We have been collaborating with NHS England and the Royal College of Nursing to develop a single national PEWS for England since 2018 and are supportive of equivalent processes across the UK.

4. LeDeR Role

The RCPCH has no authority over provision of access to learning disability liaison nurse. We do make reference to the importance of the support of these professionals in our revised Facing the Future Standards for Emergency Care, which are due to be published in Autumn
2025.

It is my understanding that the revised standards will include the following standard:

• EDs should have a lead professional for CYP with complex medical needs, learning disability and or those who are neurodivergent and access to advice and support from a Learning Disability Liaison Nurse.

Thank you for seeking our views and reminding us of the importance of this work. Our sincere condolences are with Rose’s family.

Dear Dr Henderson,

Thank you for the Regulation 28 report of 13 May 2025 sent to the Secretary of State / the Department of Health and Social Care about the death of Rose Annie Harfleet. I am replying as the Minister with responsibility for disabilities and SEND at the Department of Health and Social Care.

Firstly, I would like to say how saddened I was to read of the circumstances of Rose’s death and I offer my sincere condolences to her family and loved ones. The circumstances your report describes are very concerning and I am grateful to you for bringing these matters to my attention.

The report raises the following concerns:
• the management of children with profound disabilities within a hospital setting and specifically the lack of relevant guidance;
• consultation with parents and guardians of children with profound disabilities within a hospital setting;
• nursing and medical staff recognition of the importance of listening to the voices of parents and guardians where a patient is unable to advocate for themselves; and
• the adverse impact on care when Learning Disability Liaison Nurses are not offered as a matter of course.

I will outline actions being taken within the Department to address the first three concerns raised in the report. As NHS England oversees workforce within the NHS, it will address the final concern in its separate response and any other relevant actions on the other concerns raised.

The management of children with profound disabilities within a hospital setting

Increasing knowledge and awareness of staff

To improve awareness of learning disability and autism within the health and social care system, under the Health and Care Act 2022, from 1 July 2022 Care Quality Commission (CQC) registered providers are required to ensure their staff receive specific training on learning disability and autism appropriate to their role. This will help to ensure that staff have the right knowledge and skills to provide safe and informed care. To support providers to meet the statutory training requirement, we have been rolling out the Oliver McGowan Mandatory Training on Learning Disability and Autism to the health and adult social care workforce: this specifically highlights the difference that listening to parents can make.

We are aware of the specific challenges faced by those living with rare conditions such as Mosaic Trisomy 17. The UK Rare Diseases Framework was published in January 2021. One of its four priorities is increasing awareness among healthcare professionals. With over 7,000 rare diseases, it is not possible for healthcare professionals to receive comprehensive training on every condition. It is therefore important that they are aware of rare diseases more broadly and are alert to considering them. This includes providing training and resources to enable healthcare professionals to recognise rare diseases in patients and be aware of potential specialist treatment needs, as well as signposting to support and care pathways.

In England, we have now published four action plans setting out how we will address the priorities of the UK Rare Diseases Framework. To ensure delivery and accountability, each action lists an owner, desired outcomes and how we will measure and report on progress. Further information on the 2025 England Rare Diseases Action Plan can be found at

Tailored care

We expect public services to be adhering to existing responsibilities to provide reasonable adjustments and tailored care for people with specific needs. For example, under the Equality Act 2010, public sector organisations are required to make changes in their approach or provision to ensure that services are accessible to disabled people as well as to everybody else. In addition, each Integrated Care Board must have an executive lead for learning disability and autism who will support the board in: addressing health inequalities; supporting equal access to care across all health services; and improving overall health outcomes.

There is work underway in NHS England to make sure that staff in health settings know when they need to make reasonable adjustments for people. This includes the development of a Reasonable Adjustment Digital Flag, which enables the recording of key information about a patient, including if a person is autistic or has a learning disability, and their reasonable adjustment needs, to ensure support can be tailored appropriately.

In June 2024, NHS England published a Health and Care Passport guidance and template which aims to support personalised care for people with a learning disability and autistic people, including when they go into an acute hospital. Long-term ambitions The 10 Year Health Plan will set out how the NHS needs to change to ensure everyone has access to high-quality care and how we can enable health and social care services to work better together to provide joined-up care. As part of the Plan’s development, we have been engaging with members of the public and healthcare staff for the last six months to understand what is not working as well as it should and what the potential solutions are. We ran seven in-person deliberative events across the country with the public and we held a specific workshop with people with a learning disability and autistic people to ensure their views were captured. The rich insights we have gathered from these different events and surveys are now being analysed and are informing the Plan to help make the NHS fit for the future. The importance of patient voice and parent/guardian advocacy

All NHS bodies and private and third sector providers supplying NHS services are required by law to have regard to the NHS Constitution when performing their health service functions. The NHS Constitution sets out rights for patients, public and staff. It outlines NHS commitments to patients and staff, and the responsibilities that the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively.

It also details that patients have the right to be involved in planning and making decisions about their health and care, where appropriate this right includes family and carers of those receiving treatment. Alongside this right, the NHS Constitution also sets out that the NHS pledges to work in partnership with those receiving treatment, their family, carers and representatives.

As part of the government’s 10-year plan and transforming the NHS from analogue to digital, the government will create a more modern NHS by bringing together a single patient record, summarising patient health information, test results, and letters in one place, through the NHS App. It will put patients and their advocates in control of their own medical history, meaning they do not have to repeat it at every appointment, and that staff have the full picture of patients’ health.

Another important initiative to empower patient voice and parent/guardian advocacy is Martha’s Rule. This gives patients and their families who are concerned about deterioration in their physiological condition the right to initiate a rapid review of their case, 24 hours a day, from someone outside of their immediate care team. When requested, this rapid review will inform whether any new or additional action needs to be taken to ensure patients receive the most appropriate care and treatment – which may include escalation.

I hope this response is helpful. Thank you for bringing these concerns to my attention.