Recovery, Renewal and Reset of Services to Disabled Children

The University of Newcastle Upon Tyne and NHS North of England Commissioning Support Unit (NECS) require access to NHS England data for the purpose of the following research project:

The Resetting Services to Disabled Children study

The following is a summary of the aims of the research project provided by the University of Newcastle Upon Tyne:

Eight percent of UK children are disabled. Many have complex physical and mental health needs that require care from paediatricians, specialist medical services, psychologists, nurses, and allied health professionals. Disabled children receive care in hospital, community health settings, school and in their homes. In response to COVID-19, disabled children who were at increased risk due to poor respiratory function were advised to shield and the duty to deliver care plans was relaxed during the initial phases of the pandemic. Most community services for children were de-prioritised as efforts centred on those most at risk from the virus. Services stopped and reorganised; some restarted via video link, others face-to-face, but practice varied and has continued to flex and change in response to policy changes. Service managers have described having to respond as ‘daily to changes in planning’. Many parents have reported children’s deteriorating mental health and their own isolation and stress. Impacts on physical health are currently unclear but tele-practice may not suit examination, diagnosis or interventions requiring touch/instrumentation. There is emerging evidence of delays to diagnosis and appropriate treatment for children, increases in abuse, and regional inequity in the health impact of coronavirus. Learning from changes and consequences for children’s physical and mental health and their families’ wellbeing was vital to inform practical policy solutions for integrated service recovery during the recent pandemic, and going forward, is vital to plan for future emergencies.

The Resetting Services to Disabled Children study was commissioned by National Institute for Health and Care Research (NIHR) Policy Research Programme (June 2021 – May 2024) to establish which reconfigurations of services, practices and strategies for disabled children arising from COVID-19 work well and should inform policy on system recovery and planning for future emergencies.

Objectives of the Resetting Services to Disabled Children study include to:

1. Identify service changes and their impacts.

2. Quantify change in disabled children’s contacts with services between five time points: Pre-lockdown (1st April 2019- 22nd March 2020); first full lockdown (Lockdown 1 23rd March 2020- 14th June 2020); post first lockdown (Social Distancing 1 15th June 2020 – 4th November 2020); second and third full lockdowns combined due to the short period between them (Lockdown 2 5 November 2020 – 11th April 2021); and post second lockdown (12th April 2021 – 30th September 2021).

3. Identify factors (child, family, intervention type, provider, organisation) that enabled sustained provision of high-quality services during the pandemic.

4. Ratify agreement across families and professionals on resetting care.

5. Identify benefits and risks of individual changes within and across services.

The study comprises six Work Packages (WP1-6) to address the five objectives (1-5) which, together, aim to establish which reconfigurations of services, practices and strategies for disabled children arising from COVID-19 work well and to inform policy on system recovery and planning for future emergencies.

NHS England Data will only be used in relation to WP2 to address Objectives 1 and 2 of the Resetting Services to Disabled Children study - Quantifying changes in disabled children’s contacts with NHS services between five time points from April 2019 to September 2021, when the English government enforced different social distancing measures, and their impacts. Analysis of the NHS England data will allow the investigation of the change in care during the COVID-19 pandemic and their impacts for children with different conditions, at different ages, and at the stage of diagnosis and management of chronic needs. The data will also allow the investigation of the effect of ethnicity and social deprivation on care and its outcomes during the pandemic. Both factors have been associated with risk of COVID. The findings will form guidance to health, social care, education and third sector services on how services should be organised and delivered to disabled infants and children.

The following NHS England Data will be accessed:

> Hospital Episode Statistics Admitted Patient Care (HES APC), HES Accident & Emergency (A&E) HES Outpatients (OP) and Emergency Care Data Set (ECDS) – necessary to investigate change in children’s contacts with medical services for both planned and unplanned care, and to investigate the impact of changes in services on children’s morbidity. Data on all emergency care assessments and treatments are required to investigate the impact of changes to NHS and care on children's health, as an indicator of severe unplanned care need.

> Mental Health data - necessary to investigate the impact of changes in children's health care during the COVID-19 pandemic on their health outcomes. Mental health care data is requested for inpatient care of children with all diagnoses to investigate if the types and numbers of in-patient mental health episodes of care varied in the year before the COVID pandemic to during the pandemic according to children's health condition, age, ethnicity, sex and deprivation level.

> Civil Registration Mortality – necessary to investigate the impact of changes in services on children’s mortality.

The level of the Data will be:

> Identifiable – NHS number is required to enable the DSCRO to pseudonymise the data into the correct pseudonymisation key. The pseudonymisation key allows the linkage to the NHS England Datasets and is also used on the datasets being received directly from the Trust. The key is bespoke to this project.

Some sensitive fields have been requested. Data on ethnicity is required because in the UK general population, people from BAME (Black, Asian and minority ethnic) backgrounds were at greater risk of COVID-19. It is unclear if this risk extends to disabled children; this research will estimate risk for disabled children from different ethnic groups. Full date of death is required to enable the comparison of outcomes at different time periods before, during and after the COVID-19 pandemic, with time periods occurring at different points within a month. Month and year of death will not allow accurate analysis.

The Data will be minimised as follows:

> Limited to a study cohort identified by NECS – cohort is comprised of disabled children aged 0-19 years who have a diagnosis that usually requires multi-disciplinary care: cerebral palsy, attention deficit hyperactivity disorder, autism spectrum disorder, acquired brain injury, and syndromes associated with intellectual disability (Down Syndrome, Di George, neurofibromatosis, foetal alcohol, tuberous sclerosis).

> Limited to data between April 2019 and September 2021; The data period requested is minimised to one year prior to the COVID-19 pandemic and the period during the pandemic.

> Limited to the following geographic areas: cohort minimised to include five NHS Foundation Trust boundaries that differ in region, demography of the population served and organisation of services.

Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust as the research sponsor, and the University of Newcastle Upon Tyne as the main collaborator, are joint controllers as the organisations responsible for ensuring that the Data will only be processed for the purpose described above.

The Department of Health and Social Care (DHSC) has commissioned the University of Newcastle Upon Tyne to undertake the work. DHSC does not specify what data are required to deliver the work nor how the data shall be processed to achieve that purpose. Such decisions are taken by the University of Newcastle Upon Tyne.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject. Scientific research will be undertaken to investigate which contacts with NHS services changed during the COVID-19 pandemic and the association between change in care and health outcomes. Services to disabled children continue to be challenged by workforce reductions and increasing waiting lists. There is still a need to understand the impact of changes in healthcare to disabled children during COVID-19 to inform service redesign and remodelling and future emergencies. This research is therefore in the public interest as, to the University of Newcastle Upon Tyne’s knowledge, no other research has conducted a similar analysis.

The funding is provided by NIHR Central Commissioning Facility (CCF). The funding is specifically for the study described. Funding is in place until the end of May 2024.

The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

NECS is a processor acting under the instructions of the University of Newcastle Upon Tyne. NECS’s role is limited to linking data supplied by NHS England and local services. NECS will apply a second pseudonymisation to the data prior to their provision to the University of Newcastle Upon Tyne. NECS are acting as processors to maintain confidentiality.

Microsoft Limited provides IT hosting services to NECS and will store the Data as contracted by NECS.

Two Public and Patient Involvement and Engagement advisory groups (4-6 parent-carers; 4-6 disabled young people) have been set up. These groups will advise on study conduct and dissemination. The PPI Lead will be the primary contact for the Parent Advisory Group. The research team have consulted with chairs of local Parent Carer Networks in the National Network of Parent Carer Forums, a voluntary organisation of parent carer who have come together to support the development of statutory services for children with special educational needs and disabilities. The parent carers and support organisations have strongly supported the need for the research and have been involved in the design of the study. In total, up 80 parent-carers across eight local authorities considered the study design. These parent-carers are of both sexes, are diverse in age (30’s – 60’s), are both working and not working, and are from ethnic backgrounds, reflecting the populations they serve. Some of the group have additional needs/disabilities. The children of the parent carers consulted range in age from preschool to early twenties and have a wide range of needs. They are educated in a range of settings: mainstream, day and residential special schools, and at home. The use of routine data without consent was judged by the parent-carers consulted to be appropriate because it would give the study access to data without more intrusively involving families, and it was felt that consent was gained at source (with the opt out of NHS England data).

The Co-Investigator and member of the leadership team is the Director of the Council for Disabled Children, the umbrella body for the disabled children's sector which has a membership of over 300 voluntary and community organisations and an active network of practitioners that spans education, health and social care. They have consulted widely with parents and professionals and voluntary organisations supporting them about the research aims and objectives. Throughout the pandemic, the Council for Disabled Children’s Friendship, Learning, Achieve, Reach and Empower (FLARE) group of disabled young people have continued to meet and provide advice to government on their experience of the pandemic. They have been vocal about the way in which young people’s needs have been marginalised and have talked about social isolation and loss of friendships, falling behind at school and exam stress fears. Some are worried about adapting back to face-to-face learning and the consequences of school refusal. About half of the FLARE members have lost or seen changes to their social care that has impacted their emotional wellbeing and/or mental health. They are clear that research which identifies how best services for children and young people can be protected would be welcome.

The North of England Data Services for Commissioners Regional Offices (DSCRO) will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number and Date of Birth) for the cohort to be linked with NHS England data.

Prior to this a pseudonymisation process will be applied:

a) North of England DSCRO will generate an external pseudo key and share this with the five NHS Foundation Trusts who will be supplying data to North of England Commissioning Support Unit (NECS). NECS will not receive a copy of the external key.

b) North of England DSCRO will generate a mapping table that can be used for re-identification, using the external pseudo key

c) The organisations supplying the patient lists, will pseudonymise the list using a pseudonymisation@source tool and supply the patient list and the patient's month and year of birth to NECS

d) NECS will collate the pseudonymised patient lists

e) NECS will share the pseudonymised patient list and the patient's month and year of birth with North of England DSCRO

f) North of England DSCRO will use the mapping table to re-identify the NHS Numbers on the patient list

g) North of England DSCRO will validate the NHS Number by using the patient's month and year of birth against the Patient Demographic Service (PDS) data the DSCRO holds and retrieve the patient's full date of birth

h) North of England DSCRO will share the clear patient list (NHS number) and the patient's date of birth with NHS England

NHS England will provide the relevant records from the HES, ECDS, deaths and mental health datasets to North of England DSCRO. The Data will

> contain directly identifying data items including NHS Number which are required to enable the DSCRO to pseudonymise the data into the correct pseudonymisation key.

A further pseudonymisation process will then be applied:

a) North of England DSCRO will pseudonymise the data using the external pseudo key (generated by the pseudonymisation@source tool)

b) North of England DSCRO will send the pseudonymised data extracts to NECS

c) NECS will apply a second pseudonym to the pseudonymised data, using an internal pseudonym, which no other organisations hold

d) NECS will transfer the twice pseudonymised data to the University of Newcastle Upon Tyne

The Data will not be transferred to any other location.

The Data will be stored on servers at the University of Newcastle Upon Tyne and NECS.

The Data will be accessed onsite at the premises of the University of Newcastle Upon Tyne.

The Data will also be accessed by authorised personnel via remote access.

The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

The Data will not leave England at any time.

Access is restricted to employees or agents of the University of Newcastle Upon Tyne and North of England CSU. All such individuals are substantive employees of the University of Newcastle Upon Tyne or North of England CSU.

All personnel accessing the Data have been appropriately trained in data protection and confidentiality.

Death data will be linked to the other NHS England datasets to investigate if disabled children were more likely to die during the COVID-19 pandemic, and if mortality was associated with child (age, diagnosis, sex, ethnicity, IMD) and care factors (type of procedure, speciality, frequency of hospital inpatient, outpatient and A&E care).

The Data will be linked at person record level with data obtained from local services on children’s contacts with community medical and non-medical NHS practitioners.

For each child in the cohort, local services will provide the following data for each contact between 1 April 2019 and 30 September 2021:

•date of contact

•purpose of contact: diagnostic assessment / review or management or treatment

•method of contact: face-to-face / phone / video conferencing

•contact with: professional group or specified team if multidisciplinary team

•service: e.g. autism diagnostic team / complex needs / child protection or safeguarding etc

•setting in which contact took place: school/education, hospital, community clinic, home, other

•attendance of child at contact: attended / did not attend

Children will be identified by their pseudonymised NHS number. Data will be sourced from electronic patient records held by each participating site.

Together, the data from NHS England and data provided by local services is expected to show disabled children’s contacts with NHS services provided by multidisciplinary teams across settings before and during the pandemic.

The Data will not be linked with any other data, other than what has already been described above.

The identifying details will be stored in a separate database at the North of England DSCRO to the linked dataset at the University of Newcastle Upon Tyne used for analysis. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

Researchers at the University of Newcastle Upon Tyne will not receive data on which NHS trusts treated the children, minimising risk of making identification. Diagnosis words and operation words (with pseudo child ID) will be copied into an Excel file. Clinicians in the research team will check the file and replace any diagnosis or operation word with a higher order word if this information could identify a child (e.g. Sturge Weber syndrome will be recoded as genetic disorder; Deep Brain Stimulation will be recoded as neurosurgery). Diagnoses and operations in the linked data file will be recoded using the clinicians’ higher order codes. North of England CSU will reveal the area supplying data once the recoding has occurred and children cannot be identified.

Researchers from the University of Newcastle Upon Tyne and NECS will process the Data for the purposes described above.

The expected outputs of the processing will be:

> Regular briefing papers reporting findings will be sent to local policy makers (local authority Special Educational Needs and Disabilities (SEND) Leads, Designated Medical Officers (DMOs), Designated Clinical Officers (DCOs), and commissioners) and national policy leads (NHS England and NHS Improvement Learning Disability and Complex Needs leads; Association of Directors of Children’s Services).

> Submissions to peer reviewed journals; two submissions expected. Target journals are the British Medical Journal (BMJ) and the Developmental Medicine and Child Neurology journal.

> Plain language summaries to be shared with families, the Council for Disabled Children other support organisations, such as Contact, Cerebra, Scope, National Autistic Society, Autistica, and Mencap, via social media such as X and Facebook.

> Presentations at British Academy of Childhood Disability and the European Academy of Childhood Disability annual meetings, which focus on neurological disability conditions.

The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

> Journals

> Information about the study, its aims, design and status will be made available on the study website

> Meetings (online) and webinars will be held with local policy makers (local authority SEND Leads, DMOs, DCOs, and commissioners) and national policy leads (NHS England and NHS Improvement (NHSE/I) Learning Disability and Complex Needs leads; Association of Directors of Children’s Services).

> Social media

> Conference presentations

Publication in peer reviewed journals is expected to be complete by 2025.

The study is expected to:

1. Create an agreed set of recommendations and strategies to ensure renewed health and social care services for disabled children are equitable and effective in reducing children’s mortality and increasing health and wellbeing of the children and their families.

2. Identify the factors that enable or threaten renewed and reset services delivery.

3. Produce an agreed minimum service for rapid deployment in future emergencies and risks associated with a lack of minimum service provision.

The study is expected to lead to the creation of policy guidance that can be adopted by the United Kingdom and other countries to address what provision should be given to disabled children and families during national emergencies. This will include practice recommendations on how services should be provided to meet the needs of disabled children and their families now as we reset the NHS and social care, and what would be a minimum acceptable service for times of emergency and lockdown.

The use of the data could:

> help the system to better understand the health and care needs of populations.

> lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.

> advance understanding of regional and national trends in health and social care needs.

> inform planning health services and programmes, for example to improve equity of access, experience and outcomes.

> inform decisions on how to effectively allocate and evaluate funding according to health needs.

> provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice which need to be addressed.

> support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

Across the project, the University of Newcastle Upon Tyne will disseminate information to key stakeholder groups who use, provide and commission services to inform practical policy solutions to service resetting. This includes parent carers; disabled young people; allied health practitioners; community paediatricians; education staff; neurodisability paediatricians; psychologists; SEND leads from education; social workers; commissioners of services; national policy leads. The key policy makers at a local level are DMOs, DCOs, SEND leads, commissioners and Parent Carer Forum chairs. The University of Newcastle Upon Tyne will meet with each of these stakeholder groups in regular national meetings to ensure timely impact of the findings.

The findings and guidance produced are expected to support those responsible for setting policy; enabling them to ensure that in any future emergency high quality health, education and care services for disabled children would be maintained. The guidance should enable planning that will reduce child physical and mental health morbidity and mortality that has been associated with the COVID-19 emergency and inequalities in impact of COVID-19. Countries, regions and localities will use the guidance to plan prospectively, enabling them to react quickly in emergencies with short or longer preparation periods. This agreed minimal service is expected to avoid the deterioration in health during an emergency. For professionals, the guidance should create clarity about what their role should be in supporting children and families, reducing uncertainty and professionals stopping provision. For example, it should allow NHS managers and commissioners, governors and head teachers at schools, and social care directors to create plans that are relevant to their local population (such as accounting for deprivation or families for whom English is a second language), ensuring inequality in provision is reduced through local solutions. Given service managers’ concerns about continual changes to policy and practice, guidance is also expected to reduce workforce stress by providing a clear blueprint for managing future emergencies and enable disaster planning.

University of Newcastle Upon Tyne will be engaging with the National Network of Parent Carer Forums across England, who will use the findings in their work with local authorities and health services to plan local service provision for disabled children.

Yielded Benefits is not a requirement for new applications.