Cerebal palsy and maternity services (FOI)

​Request

A 

What records are kept of babies born each year with cerebral palsy and how are they accessed?

B 

What other types of conditions in maternity or post birth are kept to record the total numbers arising each year?

C 

Are records kept of deaths during birth of mothers or babies still born or who died shortly after or during birth?

D 

How many other data points are collected to record maternity outcomes for mothers and babies and what are they?

E 

How long are these records kept and where can they be accessed by the public other than through FOI's?

F 

Who inspects the Maternity services and how many times have they in the last 20 years?

G 

If any reports have been written about these issues what are they and where are they accessible to the public if at all?

H 

How many children have been born with Cerebral Palsy since 2002 in each year and how many mothers and babies have died in those years during or after birth as a result of problems at birth?

I 

How many children are registered with Cerebral Palsy with Health and how many have been registered at social security?

Response

A

Not all babies born with cerebral palsy at Jersey General Hospital will have an immediate diagnosis at birth. The signs of cerebral palsy usually appear in the first few months of life, but many children are not diagnosed until age 2 or later. Diagnosis is only recorded in the hospital's Patient Administration System (PAS) if the patient is admitted to hospital and the diagnosis is recorded by a clinician in the patient notes.

B 

Pregnancy, childbirth and the puerperium (O00 – O99)

Chapter contains the following blocks:

Pregnancy with abortive outcome (O00 – O08)

Oedema, proteinuria and hypertensive disorders in pregnancy, childbirth and the puerperium (O10-O16)

Other maternal disorders predominantly related to pregnancy (O20-O29)

Maternal care related to the fetus and amniotic cavity and possible delivery problems (O30-O48)

Complications of labour and delivery (O60-O75)

Complications predominantly related to the puerperium (O85-O92)

Other obstetric conditions, not elsewhere classified (O94-O99) – includes a wide variety of conditions (circulatory, respiratory, digestive, skin)

Certain conditions originating in the perinatal period (P00 – P96)

Chapter contains the following blocks:

Fetus and newborn affected by maternal factors and by complications of pregnancy, labour and delivery (P00-P04)

Disorders related to length of gestation and fetal growth (P05-P08)

Birth trauma (P10-P15)

Respiratory and cardiovascular disorders specific to the perinatal period (P20-P29)

Infections specific to the perinatal period (P35-P39)

Haemorrhagic and haematological disorders of fetus and newborn (P50-P61)

Transitory endocrine and metabolic disorders specific to fetus and newborn (P70-P74)

Digestive system disorders of fetus and newborn (P75-P78)

Conditions involving the integument and temperature regulation of fetus and newborn (P80-P83)

Other disorders originating in the perinatal period (P90-P96)

Congenital malformations, deformations and chromosomal abnormalities (Q00 – Q99)

Chapter contains the following blocks:

Congenital malformations of the nervous system (Q00-Q07)

Congenital malformations of eye, ear, face and neck (Q10-Q18)

Congenital malformations of the circulatory system (Q20-Q28)

Congenital malformations of the respiratory system (Q30-Q34)

Cleft lip and cleft palate (Q35-Q37)

Other congenital malformations of the digestive system (Q38-Q45)

Congenital malformations of genital organs (Q50-Q56)

Congenital malformations of the urinary system (Q60-Q64)

Congenital malformations and deformations of the musculoskeletal system (Q65-Q79)

Other congenital malformations (Q80-Q89)

Chromosomal abnormalities, not elsewhere classified (Q90-Q99)

C

Yes. Outcome of the delivery is recorded on the Patient Administration System for both baby and mother. All deaths are registered, and cause of death is determined by the medical practitioner or other qualified certifier, who uses his or her clinical judgement in completing the medical certificate of cause of death, including documentation of the morbid conditions and events leading to the death (including perinatal deaths). Cause of death for all deaths are also subsequently coded by Office for National Statistics (ONS) annually, according to the 10th revision of the ICD (ICD-10) and its coding rules.

Numbers of stillbirths registered annually in Jersey can be found in the Office of the Superintendent Registrar Annual Report:

Annual Statement - Office of the Superintendent Registrar (gov.je)

D 

The below tables show the data points collected and recorded in the Patient Administration System for baby and mother outcomes:

Data Source: Hospital Patient Administration System (TrakCare, Report MAT23A)

Data Source: Hospital Patient Administration System (TrakCare, Report MAT23A)

E

Health and Community Services (HCS) has adopted the National Health Service (NHS) Retention Schedule, as attached.

HCS will be moving towards the NHS 2021 Code of Practice for Records Management (date yet to be confirmed), which can be found at:

Records Management Code of Practice (nhsx.nhs.uk)

F

We are not currently inspected by an independent organisation such as the Care Quality Commission (CQC). However, there have been reviews of Jersey's Maternity services, including the review undertaken by the Health and Social Security Scrutiny Panel in 2021, the findings of which are in the public domain.

The Health and Social Security Scrutiny Panel's 2021 report entitled 'Review of Maternity Services' can be found at:

Review of Maternity Services (statesassembly.gov.je)

G

Please see the Births, fertility and breastfeeding 2021 report at:

Births, fertility and breastfeeding 2021 (gov.je)

H

The Government of Jersey does not hold a central list of residents diagnosed with cerebral palsy.  Data in the EMIS clinical system is held by GPs rather than by the Government, and data on diagnoses of cerebral palsy may be held within this system. It is estimated that to undertake a search or all possible codes within EMIS and conducting a data quality assessment (as this data is not owned and validated by Government of Jersey) would exceed the time limit of 12.5 hours provided under the Freedom of Information (Jersey) Law 2011.  Article 16 of the Freedom of Information (Jersey) Law 2011 has therefore, been applied.

Local data on neonatal deaths and infant mortality can be found in the published Births and Breastfeeding Profiles:

Public Health Intelligence -Births and Breastfeeding statistics 2021 (gov.je)

I

Health and Community Services does not maintain a register of patients with cerebral palsy. Therefore, the information is not held, and Article 3 of the Freedom of Information (Jersey) Law 2011 applies.

Customer and Local Services (Social Security) only hold data for those who have been awarded the impairment component of income support, and their medical condition is recorded against their claim. Records show there are currently 12 children aged 0 – 17 years old who have cerebral palsy.

Article Applied

Article 3 - Meaning of "information held by a public authority"

For the purposes of this Law, information is held by a public authority if –

(a) it is held by the authority, otherwise than on behalf of another person; or

(b) it is held by another person on behalf of the authority.

Article 16 - A scheduled public authority may refuse to supply information if cost excessive

(1) A scheduled public authority that has been requested to supply information may refuse to supply the information if it estimates that the cost of doing so would exceed an amount determined in the manner prescribed by Regulations.[2]

(2) Despite paragraph (1), a scheduled public authority may still supply the information requested on payment to it of a fee determined by the authority in the manner prescribed by Regulations for the purposes of this Article.

(3) Regulations may provide that, in such circumstances as the Regulations prescribe, if two or more requests for information are made to a scheduled public authority –

(a) by one person; or

(b) by different persons who appear to the scheduled public authority to be acting in concert or in pursuance of a campaign,

the estimated cost of complying with any of the requests is to be taken to be the estimated total cost of complying with all of them.