Who's Who

As Rumer’s Story grows longer, we realise that keeping track of who is who is becoming more difficultindeed, since we’re using pseudonyms, we are having this problem ourselves.

To make things easier, see below for a list, which covers people, organisations, etc. mentioned in all parts of the website and will be added to as more are introduced.

Names/titles are arranged alphabetically (by surname where possible) within each category.

Hospitals

Central London Hospital (CLH)
The main adult hospital managed by Central London Hospital NHS Foundation TrustCentral London Hospital NHS Foundation Trust, whose catchment area we fell within. Helen’s maternity care took place here and various functions such as the Clinical Ethics CommitteeClinical Ethics Committee were shared between CLH and other CLHT CLHT Central London Hospital NHS Foundation Trust hospitals.
First mentioned in Rumer’s Story, part 1 and Complaint about Rumer’s care, part 2
London Paediatric Hospital (aka London Paeds)
Children’s hospital managed by Central London Hospital NHS Foundation TrustCentral London Hospital NHS Foundation Trust. Provided the vast majority of Rumer’s care, including Neonatology, Fetal and PaediatricPaediatric Cardiology, Palliative Care, surgerysurgery, general ward treatmentgeneral ward treatment and intensive careintensive care.
First mentioned in Rumer’s Story, part 5 and Complaint about Rumer’s care, part 2
St. Matthew’s Hospital
Second adult hospital managed by Central London Hospital NHS Foundation TrustCentral London Hospital NHS Foundation Trust. Some CLHT CLHT Central London Hospital NHS Foundation Trust functions were based here, notably Genetics.
First mentioned in Rumer’s Story, part 8
Thames Hospital
The closest hospital to our home geographically, although not the one whose catchment area we fell within. An adult hospital that incorporated fairly comprehensive paediatric facilities, including a paediatric A&E A&E Accident & Emergency department , Neonatal Unit Neonatal Unit Ward for newborn babies and PICU PICU Paediatric Intensive Care Unit . Not managed by CLHT CLHT Central London Hospital NHS Foundation Trust .
First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2

Other Organisations

Central London Hospital NHS Foundation Trust (CLHT)
Organisation that managed the hospitals whose catchment areas we fell within and that provided the vast bulk of Helen’s and Rumer’s care: Central London Hospital, London Paediatric Hospital and St. Matthew’s Hospital. One of many such organisations that run groups of NHS hospitals and other services. Follow the link for more information on NHS Foundation Trusts.
First mentioned in Complaint about Rumer’s care, part 2
City Scans
Non-NHS ultrasound facility offering private scans. We went here for a couple of scans for use as mementos in case Rumer died before birth.
First mentioned in Rumer’s Story, part 10
Doula UK
Organisation representing doulas in the UK.
First mentioned in Rumer’s Story, part 16
Hoskins Medical Centre
Our local GP surgery.
First mentioned in Rumer’s Story, part 1
Improving Access to Psychological Therapies (IAPT)
NHS service offering basic CBT which Helen used in early pregnancy.
First mentioned in Rumer’s Story, part 3
National Health Service (NHS)

The UK’s state-funded healthcare provider. It is something of an umbrella organisation, with much decision-making devolved to trusts that manage groups of hospitals. With a few exceptions such as (in England) prescription charges and dentistry, NHS services are free at the point of use: payment is entirely dealt with through taxation and people using the NHS don’t get involved; they’re not issued with bills or statements and generally don’t know how much the services cost. Whether this is a good thing or not is a hotly contested issue internationally, but the NHS is extremely popular in the UK.

Paid-for, or private, healthcareand even health insuranceare also available, and NHS doctors often offer their services privately on top of their NHS work.

First mentioned in Rumer’s Story, part 1 and Complaint about Rumer’s care, part 2
Natural Death Centre
Charity that provided advice and information on processes around death and particularly things like burial in natural locations such as woodlands. We took advice from them about burying Rumer in our garden at home.
First mentioned in Rumer’s Story, part 15
Remember My Baby
Charity offering professional photography for the families of babies who die around the time of their birth. We approached them with a view to potentially using their service in the event that Rumer died at this time.
First mentioned in Rumer’s Story, part 14
Support Organisation For Trisomy 13/18 (SOFT UK)
Charity to support families affected by trisomies 13 (aka Patau’s Syndrome) and 18 (aka Edwards’ Syndrome). Not to be confused with the American charity with similar aims, SOFT. We contacted SOFT UK for advice while Helen was pregnant.
First mentioned in Rumer’s Story, part 15

Units & Wards

Accident & Emergency (A&E)Central London Hospital
Emergency department at CLH CLH Central London Hospital , covering both CLH and London Paeds London Paeds London Paediatric Hospital . Rumer was taken here by ambulance in respiratory distress shortly after being discharged from Blyton Ward.
First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2
Accident & Emergency (A&E)Thames Hospital
Emergency department at Thames Hospital. Incorporated a paediatric A&E, including an area for children who needed short-term observation to stay for up to 24 hours. Rumer was taken here by ambulance after she stopped breathing at home.
First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2
Antenatal Clinic
CLH CLH Central London Hospital clinic at which general antenatal services were provided. We had a couple of meetings and classes here.
First mentioned in Rumer’s Story, part 11
Blyton Ward
General paediatric ward at London Paediatric Hospital. It was a large ward containing medical and surgical HDUs HDU An intermediate level of care between that of a normal ward and intensive care as well as standard beds, both on the open ward and in single rooms known as cubicles. The ward was split into bays of around 48 beds each, some of which were from time to time reserved as respiratory bays in order to group patients with respiratory infections together, away from those with different issues.
First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2
Early Pregnancy Unit (EPU)
CLH CLH Central London Hospital drop-in unit for problems in early pregnancy.
First mentioned in Rumer’s Story, part 1
Fetal Cardiology Unit
Outpatient unit at London Paediatric Hospital providing echo scans Echocardiogram A specialised type of ultrasound scan looking in detail at the baby’s (or in this case the fetus’s) heart and cardiology prenatally.
First mentioned in Rumer’s Story, part 5
Fetal Medicine Unit (FMU)
Outpatient unit at CLH CLH Central London Hospital at which pregnancy screening and ongoing management of high-risk pregnancies took place. We had all of our scans here (apart for the private memento ones).
First mentioned in Rumer’s Story, part 2
Neonatal Unit (NNU)

London Paediatric Hospital ward (but located on the CLH CLH Central London Hospital site) for newborn babies in need of more-than-trivial medical treatment. It was split into three levels of care: Neonatal Intensive Care Unit (NICU) for the sickest babies, High Dependency Unit (HDU) as an intermediate stage and Special Care Baby Unit (SCBU) for those with fewer needs. These were housed in multiple rooms of various sizes; one such room was designated as HDU on one side and SCBU on the other. The idea was that babies who entered at one of the higher levels progressed through the lower one(s) until they were ready to go home.

The NNU also housed a couple of rooming-in rooms that contained an adult double bed as well as the baby’s medical facilities; these were generally used for parents to have a night alone with their baby just before going home, with the nursing and medical staff within easy reach. Once discharged, babies would not be readmitted to the NNU should they need to return to hospital but would now fall under Paediatrics.

The NNU was also home to the Neonatal Community TeamNeonatal Community Team.

First mentioned in Rumer’s Story, part 10 and Complaint about Rumer’s care, part 2
The Oregon Suite
CLH CLH Central London Hospital ’s midwife-led birth centre. We had a number of meetings in the birthing rooms here.
First mentioned in Rumer’s Story, part 11
Paediatric Intensive Care Unit (PICU)

Unlike on their Neonatal Unit, under Paediatrics at London Paediatric Hospital, intensive care was separated out into a completely different unit from the normal ward and HDU HDU An intermediate level of care between that of a normal ward and intensive care levels of care, with its own doctors, nurses and management.

PICU was a large open floor, divided into a few large bays. As on Blyton Ward, there were also a few side-rooms (cubicles) for those who were especially infectious, and children with similar infections were grouped together on the main floor. PICU took children of all ages, but during our time thereat least outside the cardiac baythe vast majority seemed to be babies.

First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2
Radiology UnitCLH
This unit at Central London Hospital housed an MRI scanner which we made use of twice during Helen’s pregnancy.
First mentioned in Rumer’s Story, part 5

Teams

Accurate Fetal Scanning Study (AFSS) Research Team
We participated in this study during Helen’s pregnancy, as facilitated by Claire Kennedy, a Fetal Medicine Unit junior doctor Junior Doctor A doctor who has not yet attained the rank of consultant. Covers a wide range of grades, from Foundation Year doctors in their first couple of years after leaving medical school up to Senior Registrars who have considerable autonomy and their own training responsibilities. Junior doctors move between training positions on a regular basis, often to different hospitals and even different parts of the country. who was also part of this team.
First mentioned in Rumer’s Story, part 5
Clinical Ethics Committee (CEC)
A team that met both regularly and on an ad-hoc basis in order to discuss and make recommendations about ethical issues that arose in the clinical practice of any part of [[previous text]] CLHT CLHT Central London Hospital NHS Foundation Trust . Members included CLHT and external clinicians, a legal and medical ethics advisor and a lay member. Not all members attended every meeting. Part of the committee met in July 2015 in order to discuss Rumer’s case.
First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2
Dale Team
Central London Hospital caseloadCaseload midwifery team that covered the area we live in. The team worked mainly in the community, with most appointments taking place at home.
First mentioned in Rumer’s Story, part 1
Neonatal Community Team
A team of London Paediatric Hospital nurses based in the Neonatal Unit who managed the transition home for babies discharged from the NNU NNU Neonatal Unit . The team liaised with other clinicians and with us prior to Rumer’s discharge from the NNU, visited us at home and continued to assist after her admittance to Paediatrics.
First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2]]
Paediatric Palliative Care Team
A small team at London Paediatric Hospital comprising a part-time consultant Consultant A doctor who has completed their training. Unlike junior doctors, consultants are generally employed in permanent positions. Consultants are responsible for care given by junior doctors as well as their own, and it is common for patientsparticularly those with complex needsto be allocated a named consultant to manage their needs on a longer-term basis. and one or two specialist nurses. The team’s intended role was often somewhat unclear to us, but broadly their remit was to manage the palliative care needs of children with life-limiting conditions Life-limiting condition A condition which is expected to shorten a person’s life compared to what might be expected if they did not have the condition and their familiesfor example, by serving as a link between the hospital and the local children’s hospice. They became involved during Helen’s pregnancy after we received Rumer’s trisomy 18 diagnosis.
First mentioned in Rumer’s Story, part 10 and Complaint about Rumer’s care, part [[part no]]
Steeple Team
Central London HospitalHospital-based midwifery team that dealt with women with high-risk pregnancies.
First mentioned in Rumer’s Story, part 10

Departments

Complaints
Managed complaints about CLHT CLHT Central London Hospital NHS Foundation Trust .
First mentioned in Complaint about Rumer’s care, part 2
Genetics
CLHT CLHT Central London Hospital NHS Foundation TrustCentral London Hospital NHS Foundation Trust department based at St. Matthew’s Hospital dealing with the investigation and diagnosis of, and guidance about, conditions suspected to have a genetic link. They became involved during Helen’s pregnancy when we sought guidance while deciding whether to have an amniocentesis Amniocentesis Procedure whereby a sample of amniotic fluid is removed for diagnostic testing. Carries a low risk of miscarriage. .
First mentioned in Rumer’s Story, part 7
Information Governance
CLHT CLHT Central London Hospital NHS Foundation Trust department managing control of and access to documents and other information held by the trust, including Subject Access Requests and Freedom of Information requests.
First mentioned in Rumer’s Story, part [[part no]] and Complaint about Rumer’s care, part 2
Patient Advice and Liaison Service (PALS)
CLHT CLHT Central London Hospital NHS Foundation Trust department with a public-facing desk at each site offering advice to patients about things such as making a complaint, as well serving as a conduit for patients to communicate with hospital staff if they are unable to do so directly for any reason. A standard service available at all NHS hospitals.
First mentioned in Complaint about Rumer’s care, part 2

Midwives

Billy
Midwife who taught the Central London Hospital general hospital antenatal class that we attended.
First mentioned in Rumer’s Story, part 11
Elysia Crouch
Fetal MedicineFetal Medicine midwife at Central London Hospital. She acted as our link to the Fetal Medicine UnitFetal Medicine Unit.
First mentioned in Rumer’s Story, part 9
Rosa Deacon
Bereavement midwife at Central London Hospital. She left the hospital before the end of the pregnancy.
First mentioned in Rumer’s Story, part 10
Mollie Evans
Dale Team caseload midwife from Central London Hospital. As our named midwife, the idea was that we would see Mollie for most midwife appointments; she would co-ordinate our midwifery care and she or another member of her team would hopefully be at Rumer’s birth.
First mentioned in Rumer’s Story, part 2
Grace
Dale Team caseload midwife from Central London Hospital.
First mentioned in Rumer’s Story, part 2
Khushi Holloway
Central London Hospital Consultant Midwife who ended up dealing with the pregnancy closely alongside Mollie Evans.
First mentioned in Rumer’s Story, part 10
Ophelia Somers
Central London Hospital midwifeMidwife who worked in the Fetal Medicine UnitFetal Medicine Unit and Pregnancy Assessment UnitPregnancy Assessment Unit; we saw her on various occasions in both.
First mentioned in Rumer’s Story, part 18
Zainab
Central London Hospital midwifeMidwife in charge of Steeple Team. She left the team before the end of the pregnancy.
First mentioned in Rumer’s Story, part 11

Obstetrics & Fetal Medicine

Clayton Conroy
Consultant obstetrician at Central London Hospital.
First mentioned in Rumer’s Story, part 2
George Donnachie
Fetal MedicineFetal Medicine consultant at Central London Hospital. He saw us for most of our scans and ended up also taking over the role of being our link obstetrician from Jody Ellis.
First mentioned in Rumer’s Story, part 2
Jody Ellis
Central London Hospital consultantConsultant obstetrician from the clinic that covered Dale Team’s area. She was initially our link obstetrician.
First mentioned in Rumer’s Story, part 2
Claire Kennedy
Fetal MedicineFetal Medicine junior doctor from Central London Hospital who participated in many of the appointments with George Donnachie. She was also involved in fetal MRI scans and a research projectresearch project that we took part in.
First mentioned in Rumer’s Story, part 4

Fetal & Paediatric Cardiology

Dr Cook
London Paediatric Hospital juniorJunior doctor who we saw for Rumer’s first fetal echos.
First mentioned in Rumer’s Story, part 5
Evan Marshall
Fetal CardiologyFetal Cardiology professor at London Paediatric Hospital. Rumer’s link cardiology consultant prenatally.
First mentioned in Rumer’s Story, part 5
June Winter
London Paediatric Hospital Cardiac Liaison Nurse. She acted as our link to Fetal CardiologyFetal Cardiology.
First mentioned in Rumer’s Story, part 6

Genetics

Miray McClellan
GeneticsGenetics consultant at St. Matthew’s Hospital. We saw her at our first Genetics appointment, before receiving the trisomy 18 diagnosis.
First mentioned in Rumer’s Story, part 8

Neonatal Unit

Ida Leigh
NeonatalNeonatal consultant at London Paediatric Hospital. Initially Rumer’s named consultant.
First mentioned in Rumer’s Story, part 19

Palliative Care

Tegan Blackman
Paediatric Palliative CarePaediatric Palliative Care consultantat London Paediatric Hospital.
First mentioned in Rumer’s Story, part 19
Jessica Duncalfe
Paediatric Palliative CarePaediatric Palliative Care nurse from London Paediatric Hospital who usually accompanied Tegan Blackman.
First mentioned in Rumer’s Story, part 19

Hospital/Trust StaffOther

Estelle Lawlor
There was a change of Chief Executive at CLHT CLHT Central London Hospital NHS Foundation Trust during Rumer’s life. Estelle Lawlor was the incoming Chief Executive, to whom we submitted our complaint. She replaced [[Pseudonym]].
First mentioned in Complaint about Rumer’s care, part 2

Doulas

Nelly Lister
Pregnancy yoga teacher who was local to us. She also worked as a doula and ended up co-ordinating the complex doula arrangements for our situation.
First mentioned in Rumer’s Story, part 3

Miscellaneous

Melech Kladivo
SOFT UK representative who responded to our request for help during Helen’s pregnancy.
First mentioned in Rumer’s Story, part 15
Paula
City Scans sonographer who undertook our first private memento scan as well as Helen’s ovulation scans prior to conception.
First mentioned in Rumer’s Story, part 10