Executive summary

This report builds on the previously released analysis of 2 surveys on patient and staff experiences of cardiothoracic transplant services in England and Glasgow. The additional analysis in this report provides detailed findings by centre and further patient demographics. The main findings of this additional analysis are:

• patient satisfaction appears to vary by the centre at which patients were listed and/or received their transplant and aftercare, as well as by ethnicity
• among staff, responses varied more by centre and profession rather than whether they were working in heart or lung services. However, responses from lung transplant clinicians were generally more mixed

Background

In October 2024 the Department of Health and Social Care (DHSC) published a report on patient and staff surveys which were done as part of a cardiothoracic information collation exercise (CT ICE) earlier that year. For further information on CT ICE and related work, please read that report.

This report provides additional analysis of those surveys, with detailed findings by centre and further patient demographics.

Methods

This is a shortened section on methodology. For further details, please read the report published in October 2024.

Data collection

Data was collected between March and April 2024 through 2 surveys, referred to as the ‘patient survey’ and the ‘staff survey’.

The patient survey was open to patients at all stages of the transplant care pathway, or their parents and carers. We had 604 valid responses to the patient survey.

The staff survey was open to all professionals involved in heart and/or lung transplantation. Staff could complete either the survey for lung transplantation (‘lung survey’) or heart transplantation (‘heart survey’) or both.

We received:

• 176 respondents to the staff survey
• 152 respondents to the heart survey
• 154 respondents to the lung survey

Some staff responded to more than one survey.

Data cleaning and preparation

Both surveys included mandatory screening questions that allowed us to exclude respondents who:

• were aged 18 or below
• did not consent to their responses being shared with DHSC, NHS England (NHSE) and NHS Blood and Transplant (NHSBT)

Data analysis

This analysis was informed by engagement with patient representatives, in order to take a closer look at the most salient questions for patients and staff. The patient survey analysis covers transplant assessment, transplant and post-transplant experience, communication, mental health, and wellbeing support throughout the transplant pathway. Responses were analysed to identify variation by transplant centre, sex, and ethnicity of patients. Average (mean) scores for centres were calculated to allow for easier comparison. The staff survey analysis covers workforce, resources and relationships with patients and looked at variation by transplant centre and profession.

Caveats

Please note the following caveats when interpreting the results of both surveys:

• the surveys focussed on transplant centres in England. However, it included Glasgow as heart transplants occur there and patients do travel for transplant services
• the results only reflect the views of those who have responded to the surveys
• table 1 below provides a breakdown of transplant volumes by centre in 2023 to 2024 to give context on the size and activity of the centres covered in this analysis
• some transplant centres had a higher number of respondents than other centres. Where we had fewer responses, results are likely not necessarily generalisable to the wider patient and staff population at the centre
• care should be taken when comparing percentages and average scores across centres for patient and staff responses, as the case mix (in terms of respondent demographics and how recently patients accessed services) varies
• the number of respondents of minority ethnic groups is very small. Therefore, proportions and comparisons between ethnicities need to be interpreted with caution
• when comparing clinicians’ percentages across centres, it is important to note that the proportion of staff from Newcastle Adult, Manchester and Harefield is significantly higher than from the other centres
• some clinicians said they work in both Newcastle Adult and Newcastle Paediatric Transplant Services. In this report, we have assigned them to whichever centre they indicated as their first (‘main’) centre
• where patients were listed at more than one transplant centre, these are grouped under the category ‘Multiple’ instead of being assigned to one individual centre. Please see the accompanying data tables for breakdowns which include ‘Multiple’
• values and proportions marked with [c] in the accompanying data tables have had suppression applied. This is to ensure respondent confidentiality due to small sample sizes. Where calculation of the suppressed value was possible, additional secondary suppression has been applied

For a more detailed list of caveats, please read the main report.

Table 1: number of heart and lung transplants conducted between April 2023 and March 2024 by transplant centre

Transplant centre	Heart transplants	Lung transplants (including heart-lung)
Birmingham	35	17
Glasgow	32	0
Great Ormond Street Hospital	23	5
Harefield	44	29
Manchester	19	24
Newcastle (Adult and Paediatric)	46	24
Papworth	38	41

Respondents across the transplant centres

Patient survey

The number of respondents listed at each transplant centre is outlined below (see table 17 of the main report’s accompanying patient survey tables). Please note, the number of respondents answering specific questions for each listing centre may be lower, as respondents may not have answered all questions. Readers can consult the data tables for further detail on sample sizes. Some respondents have received their transplant or post-transplant care at a different hospital to their listing hospital.

There were:

• 33 respondents listed at Birmingham
• 14 respondents listed at Glasgow
• 27 respondents listed at Great Ormond Street Hospital
• 171 respondents listed at Harefield
• 83 respondents listed at Manchester
• 48 respondents listed at Newcastle Adult Transplant Service
• 5 respondents listed at Newcastle Paediatric Transplant Service
• 47 respondents listed at Papworth

Care should be taken when interpreting any results for Newcastle Paediatric Transplant Service due to a small number of respondents.

Staff survey

The number of responses received for clinicians who work at each transplant centre is outlined below (see table 4 of the main report’s accompanying staff survey tables and note the caveat above about assignment to ‘main’ centre here).

There were:

• 6 responses from heart transplant staff and 8 responses from lung transplant staff at Birmingham
• 6 responses from heart transplant staff at Glasgow (Glasgow only conducts heart transplantations)
• 5 responses from heart transplant staff and 7 responses from lung transplant staff at Great Ormond Street Hospital
• 42 responses from heart transplant staff and 47 responses for lung transplant staff at Harefield
• 21 responses from heart transplant staff and 23 responses from lung transplant staff at Manchester
• 49 responses from heart transplant staff and 51 responses from lung transplant staff for those whose main work location is Newcastle Adult Transplant Service
• 14 responses from heart transplant staff and 9 responses from lung transplant staff for those whose main work location is Newcastle Paediatric Transplant Service
• 9 responses from both heart and lung transplant staff at Papworth

Care should be taken interpreting staff responses for Birmingham, Glasgow, Newcastle Paediatric Transplant Service and Papworth due to a small number of respondents.

Results

Below, headline findings are presented by the centre which patients were listed at (‘listing centre’). Average scores are given by the centre at which patients underwent or are undergoing the transplant pathway. Staff results are given by the centre which staff indicated to be their main centre of work. In the accompanying data tables, all the results can be found organised by question and topic.

Average scores are calculated as the average score for respondents at a given centre for a given service and should be interpreted as ‘out of 5’. ‘5’ denotes the positive end of the spectrum (‘extremely good’ or ‘very satisfied’), whereas ‘1’ denotes the negative end (‘very poor’ or ‘very unsatisfied’).

Centre-level findings

Birmingham

50% of respondents who were listed at Birmingham Transplant Service were informed about the most likely outcome for them, compared to 79% across all centres. 83% of respondents were not informed about transplant outcomes at other centres, compared to an average of 49% across all centres.

Patient satisfaction for the transplant operation process and time spent in hospital was generally high, with average scores of 3.93 to 4.83 across 8 areas:

• being contacted to say organ available
• being prepared for surgery
• the operation
• care in hospital following operation
• being discharged
• information about future assessments
• information about possible complications after discharge
• information about medication

Ratings for health and wellbeing issues scored generally below average, with ‘mental health support’ for the patient’s family and/or carers having an average score of only 1.84, compared to the all-centre mean of 3.12. 

While over 60% of staff felt ‘access to theatre’ was adequate for both lung and heart transplants, scoring a 4 or a 5, no respondent scored more than 3 on the same scale for ‘access to intensive care unit (ICU) beds’ for heart or lung transplants. 

Glasgow 

Patients at Glasgow reported better than average information provision about factors like outcomes and predicted waiting times. 85% of respondents listed at Glasgow were informed about waiting times for transplants across all centres, compared to an all-centre average of 49%. 

Patients at Glasgow rated the advice services more highly than the average across all centres, with an average score for ‘emergency advice 24/7’ of 4.69. 

Glasgow had the highest average score across transplant centres for communication, with an average score of 4.77 across the 3 communication services:

• transplant centre to patient
• transplant centre to GP
• transplant centre to another hospital

Glasgow was also rated above average across measures of support for health and wellbeing issues. 

An above average proportion (83%) of heart clinicians at Glasgow felt that patients in their unit are given enough information to help them make decisions about their care. Access to resources for Glasgow also scored highly, with 83% rating ‘access to theatre’ a 5 and 83% rating ‘access to ICU beds’ either a 4 or a 5.

Great Ormond Street Hospital (GOSH)

Patients at GOSH were generally extremely satisfied with the transplant operation process and time spent in hospital, with 100% of respondents rating satisfaction with ‘being contacted to say an organ was available’ as a 5 and giving a minimum average score of 4.70 for satisfaction on ‘information about possible complications after discharge’. 

Patients felt that GOSH communication with their GP from the transplant centre was generally good (scoring 3.8 out of 5 on average), but the quality of advice from their GP post-transplant was relatively poor (scoring 2.3 out of 5 on average).

Responses for access to resources from staff at GOSH were very varied in terms of how adequate staff thought resource levels were. ‘Access to machine perfusion’ was considered most adequate for heart and lung transplant clinicians. 40% of heart clinicians from GOSH said they did not know about the adequacy of ‘availability of ICU beds’ and ‘access to theatre’.

Harefield 

55% of respondents listed at Harefield were informed about waiting times for transplants across all centres, compared to an all-centre average of 49%. 

Harefield had higher than average scores for satisfaction with the transplant operation process and time spent in hospital, with an average score of 4.69 across the 8 factors scored:

• being contacted to say organ available
• being prepared for surgery
• the operation
• care in hospital following operation
• being discharged
• information about future assessments
• information about possible complications after discharge
• information about medication

Patients at Harefield scored communication higher than the all-centre average, with a mean score of 4.51 for communication between the transplant centre and patients, and 4.06 for communication between transplant centre and GP.

Staff at Harefield rated adequacy of access to resources with significant variation, though generally scored 3 or above. For example, 52% and 51% of heart and lung clinicians scored ‘access to theatre’ as a 4 or 5 (with around a third answering ‘Don’t know’) and around 40% of heart and lung clinicians scoring ‘access to staff’ a 4 or a 5 (with 29% heart and 28% lung answering ‘Don’t know’). Less than 5 of both the 42 heart or 47 lung clinicians scored ‘access to machine perfusion’ a 1 or 2. 

Manchester 

Patients at Manchester scored advice services highly, with an average score of 4.51 for ‘emergency advice 24/7’, and 3.36 for ‘GP Practice’ (the highest mean for all centres, although this reflects only the experience of a patient’s post-transplant advice received from their GP).

Patients in Manchester rated health and wellbeing support relatively highly, with average scores ranging from 4.52 for overall health support to 3.17 for ‘fertility support’, which was generally the lowest scored factor for transplant centres. 

No staff at Manchester scored ‘access to staff’ as a 1. Lung clinicians at Manchester scored ‘access to ICU beds’ highly, with around 70% rating as a 4 or a 5. ‘Access to theatre’ was also scored highly, with 67% of heart and 70% of lung clinicians scoring a 4 or a 5. 

Newcastle Adult Transplant Service 

61% of patients at Newcastle Adult Transplant Service were not informed about waiting times at all transplant centres.

Patients were generally happy with the transplant operation process and time in hospital, with average scores of above 4 across 6 of the following 8 factors of interest:

• being contacted to say organ available
• being prepared for surgery
• the operation
• care in hospital following operation
• being discharged
• information about future assessments
• information about possible complications after discharge
• information about medication

Patients were less satisfied with advice services, and health and wellbeing support. For example, the average score for ‘support on side effects of any transplant medication’ was 3.32 compared to an all-centre average score of 4.07. 

Responses from heart and lung clinicians at Newcastle Adult services were very varied. 30% of heart clinicians and 33% of lung clinicians scored ‘access to staff’ as a 1 or 2, with 3 being the modal score with 29% for heart and 25% for lung (27% of heart clinicians and 25% of lung clinicians answered ‘Don’t know’). 

Newcastle Paediatric Transplant Service 

Access to resources for Newcastle Paediatric heart and lung clinicians generally scored better than for Newcastle Adult services, with more than 40% of heart clinicians scoring ‘access to staff’ as a 4 or 5 and 56% of lung clinicians scoring a 3, 4 or 5 (22% answering ‘Don’t know’). 

Papworth 

Patients at Papworth reported generally high scores for their satisfaction with the transplant operation process and time in hospital, with average scores above the all-centre average for all 8 factors:

• being contacted to say organ available
• being prepared for surgery
• the operation
• care in hospital following operation
• being discharged
• information about future assessments
• information about possible complications after discharge
• information about medication

Patients at Papworth rated communication between the transplant centre and patient, transplant centre and GP, and transplant centre and other hospitals highly, with average scores of 4.68, 4.40 and 4.43 respectively.

Patients at Papworth reported varied satisfaction with health and wellbeing support, ranging from an average score of 2.83 for ‘mental health support’ for the family/carers to 4.36 for ‘support on side effects of any transplant medication’.

100% of heart and lung clinicians at Papworth scored ‘access to staff’ as 3 and above. ‘Access to machine perfusion’ was scored less highly than for some other centres, with two-thirds of heart clinicians and 56% of lung clinicians scoring this a 3. 

Demographic-level findings

The following paragraphs summarise results by sex and ethnicity for health and wellbeing support questions in the patient survey.

Female patients generally reported lower satisfaction on health and wellbeing support than male patients. For example, 24% of female respondents rated the mental health support as 1 or 2 compared to 14% of male respondents, with the same percentages reflected in social care support ratings. 

The vast majority of respondents were White. Generally, White respondents reported higher levels of satisfaction with health and wellbeing support than Black or Asian respondents, although this varied from question to question. For example, 51% of White patients rated mental health support as 4 or 5 compared to 38% of Asian patients and 21% of Black patients. However, overall health support was rated highly and similarly across all ethnicities, with 57% of Black patients scoring a 4 or 5, compared to 63% of Asian, 75% of Mixed and 71% of White.

Profession-level findings

Most medical professionals working in heart transplant units agreed that there was the right skill mix in their unit, although this varied by profession. This included:

• 58% of nurses
• 84% of transplant surgeons
• 75% of transplant physicians

This was broadly reflected for lung transplants, with the same percentage of nurses and lung transplant surgeons agreeing there was the right skill mix, and a slightly lower percentage (63%) of transplant physicians agreeing.

Responses on what are significant barriers to organ acceptance and utilisation, and who was responsible for patients in the event of an emergency post-transplant varied considerably across the profession.