Appendix
Anonymised list of interviewees and background details
in Organising care around patients

Appendix: Anonymised list of interviewees and background details

Name Principal health issue(s) discussed Background
(gender, age, equality group, social education or status)
Interview with (and date) Key issues
Chapter 2: Pregnancy and childbirth
Cathy Recently gave birth Female, 30s
White English
Healthcare professional
Jeremy
February 2020
Very difficult birth, mostly well handled, with a few lapses in care; some reflections on what constitutes good maternity care; implications for professional practice.
James Carer for mum with dementia and now new dad Male, 50s
White English
Secondary education, professional
Naomi
February 2020
As new dad, positive experiences of being included by maternity staff. Trauma of birth for his partner not well handled by NHS.
Chapter 3: Children and young people
Dan Teenage boy. Story told by dad, Jonathan Male, 16
White British
Middle-class professional background
Naomi
June 2020
Experience of hospitalisation for acute illness during the COVID-19 pandemic.
Jim Young man living with severe disabilities who died aged 36. Story told by parents Justin and Lucinda Male, from birth to 36
White English
Middle-class professional background
Naomi
June 2020
Difficulties of caring for a young man with serious disabilities.
Eve Remembering a childhood diagnosis of type 1 diabetes Female Naomi
January 2018
Finbar Scoliosis. Story told by parent Eileen Male, teenager
Middle-class background
Naomi
December 2019
Length of time to get to see specialist consultant in tertiary facility. GP (and mum) knew diagnosis but they still had to go through hospital consultant for onward referral. Mum tracked and chivvied tertiary unit for appointments and to make sure operation was scheduled. Experience of support group very helpful.
Chapter 4: Managing a long-term health condition as an adult
Katie Diabetes, other conditions Female, 50s
White English
Secondary education. Not able to work
Naomi
April 2018
Ups and downs of getting good care for type 1 diabetes and complications. Postcode lottery battle to get continuous testing device on the NHS. Kindness of some of the GPs at the practice – also not having to repeat oneself. Very difficult to access mental health support to tackle the psychological impact of this long-term condition; husband has never been offered support as a carer.
Tim Epilepsy Male, 30s
White English
Middle-class background
Jeremy
January 2020
Difficulty of living with epilepsy; stigma; drugs balancing act; importance of family and friends; great nurses and paramedics; good and bad doctor experiences; difficulty of finding a good specialist; pros and cons of support groups: “I am more than epilepsy”.
Joanna Various long-term conditions, including rare condition. Also parent carer of child with long-term conditions Female, adult
White English
Professional
Jeremy
January 2020
High-handed doctors; difficulty of getting diagnosis; fragmentation of care; poor basic administration; difficulty of getting improvements without formal complaints.
Jasmin Lupus Female, 30s
BAME
Middle-class
Jeremy
February 2020
Four years to get a diagnosis of lupus; “I knew something was wrong. I wasn't listened to”; private doctors got to the bottom of the problem; “my whole body was shutting down”; pros and cons of belonging to a support group; poor experience of NHS physiotherapy; generally having to battle.
Venetia Chronic fatigue syndrome Female, late 20s
White English
University degree. Works in admin
Naomi
June 2017
Lack of support for the condition, particularly from GP; pros and cons of support group; having to search oneself to understand the condition; lack of local clinical service.
Chapter 5: Adult acute care and cancer
Jill Accident – dislocated knee Female, 50s
White English
Professional, former teacher
Jeremy
January 2020
Waiting for an ambulance; pain; great nurses; brusque doctors; successful rehab but had to fight for it; poor organisation of wound care.
Andrea Surgery – gallbladder operation Female, older
White English
Left school at 16. Manual work in hotel industry
Naomi
December 2019
Successful outcome; pleased with lack of waiting; care seemed to be well coordinated; surprised to be treated in a private hospital as an NHS patient.
Lucy Sepsis Female, older
White English
Retired healthcare professional
Naomi
April 2018
Hospitalised with sepsis; experience of different quality of care and treatment on different wards; problem with accessing medical records between hospitals; patient lives with severe and enduring mental illness.
Shona Breast cancer Female, 40s
BAME
Jeremy
June 2020
Experiences of being diagnosed with breast cancer; treatment and of living as a cancer survivor.
Chapter 6: Mental health and mental illness
Audrey Family member of mental health service user Female, 30s
White English
Healthcare professional
Naomi
December 2016
Length of time to get diagnosis of severe mental health problem for family member.
Stanley Mental health – bipolar disorder Male, 40s
Black African
Jeremy
December 2019
The importance of seeing the person; the importance of work to mental health; stigma.
Alan Mental health – bipolar disorder Male, 40s
White English
University degree
Jeremy
December 2019
Continuity of care; therapeutic relationship; poorly designed services; patient participation as a route to personal development.
Nathan Mental health Male, teenager
White, English, gay
Jeremy
January 2020
Human qualities of the therapist; continuity of care; being believed; impact of diagnosis/misdiagnosis; labelling; importance of NHS/school liaison; importance of good receptionists.
Lucy Lifelong severe and enduring mental illness Female, older
White English
Retired healthcare professional
Naomi
April 2018
Lack of communication between hospital and primary care for mental health problems.
Chapter 7: Older age and end of life
Robert Bowel and heart problems Male, 80s
White English
University degree, retired manager
Naomi
January 2020
Involved in patient participation after retirement; various illnesses, including stomach problem, heart attack and joint problems; fragmentation in the NHS; lack of clarity on role of district/community nurse.
Rabiya Carer of mum with dementia Female, 30s
Muslim Asian
University degree, professional
Naomi
February 2020
Struggles with getting diagnosis for mum; experiences of discrimination; poor support from general practice and other parts of NHS and social care; one episode of real kindness from a physio.
James Carer for mum with dementia and now new dad Male, 50s
White English
Secondary education, professional
Naomi
February 2020
Looked after mum for many years, put life on hold to do this; issues and good and bad stories; patient participation, particularly around needs of carers.
Sheila Wife of man with a diagnosis of dementia Female, 60s
White English
University degree, retired professional
Naomi
December 2017
Difficulty in getting diagnosis; battle to get care in place; poor experiences of GP practice.
Kauri Carer of dad who had pancreatic cancer Female, 40s
Sikh Asian
University degree, professional
Naomi
February 2020
Many episodes of excellent care and support from hospital and GP; delay in diagnosis; three-month hospital stay; end-of-life care supported by district nurses, visiting hospice staff and GP; challenge from managing the wider family.

Organising care around patients

Stories from the frontline of the NHS

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