Research and analysis

Cardiothoracic information collation exercise: patient and staff survey report

Published 24 October 2024

Executive summary

The Department of Health and Social Care (DHSC) undertook research to understand patient and clinician views on heart and lung transplant services in England. This research consisted of 2 surveys, one aimed at patients and one at clinicians, on which we provide further detail in this report.

One survey was co-produced and was shared with patients and could also be completed by their carers or family members. This survey was open to patients on any stage of the patient pathway and covered the entire patient journey from assessment to post-transplant experience.

Staff working in various roles across the transplant service were invited to complete a ‘clinical’ survey. We refer to this survey as the ‘staff survey’ going forward. Staff could respond to either a survey on heart transplantation, on lung transplantation, or both. Staff were asked about transplantation procedures and management, but also workforce and training. There was an attempt to engage with the whole multi-disciplinary team caring for transplant patients.

We received responses from 604 patients (or their families or carers), most of whom received an organ before 2020. We found:

• most respondents waited between 1 and 3 months between a referral to attend their first appointment. A very small proportion (4%) waited longer than 1 year
• respondents who had received their transplant were generally extremely satisfied with both their operation and time in hospital
• 71% of respondents were not given a choice in location for their post-transplant care, however, 81% of respondents fully understood who was responsible for their post-transplant care
• when asked about health and wellbeing support from their transplant centre, 56% rated their overall health support as ‘excellent or full support’
• male respondents (78%) were more comfortable to raise concerns at all stages of the care pathway compared to female respondents (65%). Similarly, patients identifying as white (74%) felt more comfortable to raise concerns compared to patients identifying as black (57%)

We received responses from 176 members of staff working in transplant services. We found:

• over half of the respondents perceived retention to be a problem, and just under half perceived recruitment to be a problem. When asked about reasons to leave the transplantation team, the majority chose ‘want a better work/life balance or burnout’
• respondents perceived their care of patients on the waiting list positively, nearly 1 in 3 ‘strongly agree’ that their transplant team provides optimal care for patients on the transplant waiting list
• the majority of respondents said that a more standardised donor management protocol of potential ‘donation after brainstem death’ (DBD) patients in the intensive care unit (ICU) could improve heart and lung utilisation. 20% identified the management of potential DBD donors as a significant barrier to organ utilisation
• only a small proportion of respondents (6% or less) perceived ‘severe inequalities’ when asked about health inequalities present across their transplant service

Background

A new fixed-term Implementation Steering group for Organ Utilisation (ISOU) was established by the Department for Health and Social Care (DHSC) in 2023. Its objective is to deliver the 12 recommendations set out in the Organ Utilisation Group’s (OUG) report Honouring the gift of donation: utilising organs for transplant from February 2023.

One of the recommendations set out in the OUG report was for NHS England (NHSE) to undertake a comprehensive review of cardiothoracic services, to ensure these services are sustainable, resilient, and providing the best possible outcome for patients.

In order to inform the formal review carried out by NHS England, a small group of international experts were asked to conduct a cardiothoracic information collation exercise (CT ICE) without a real or perceived conflict of interest.

As part of the CT ICE, DHSC needed to undertake a piece of research to understand patient and clinician views on heart and transplant services in England. This research consisted of 2 surveys, one aimed at patients and one at clinicians, on which we provide further detail in this report.

Methods

Data collection

This research consisted of 2 surveys: a patient survey and a staff survey.

The patient survey was open to people at all stages of the transplant care pathway. Parents and carers of patients under the age of 18 could respond on their behalf, as could family members and carers of patients who were too ill to complete it themselves or had sadly died.​ We refer to the patient and carer survey throughout as simply ‘patient survey’ even though some responses may capture the view of the family member or carer.

The staff survey was open to all professionals involved in heart and/or lung transplant services and the care of transplant patients and their families.

Both surveys were open for 4 weeks over March and April 2024.

Invitations to participate were distributed through ISOU stakeholders including patient representatives, NHSE, NHS Blood and Transplant (NHSBT), and transplant centres. The staff survey was shared with clinical leads at the 7 transplant centres in England and national clinical leads in transplantation who shared it among their contacts.

While the surveys were primarily aimed at those living in England, participants based in Scotland, Wales and Northern Ireland could also respond.

Data cleaning and preparation

We included a mandatory screening question at the start of both the patient survey and the staff survey. The purpose of this was to ensure respondents were aged 18 or above, and that they consented to having their responses shared with and used by DHSC, NHSBT, and NHSE. We received 12 responses to the patient survey and 5 responses to the staff survey where consent was not clearly provided, and so these responses were removed from our analysis.

The staff survey asked the same set of questions twice - once for those involved in heart transplant services, and again for those involved in lung transplant services. To reduce survey fatigue for staff involved in both types of services, we gave them the option of automatically copying across their responses from the heart transplant section to the lung transplant section. Therefore, the total number of respondents to the survey on heart transplant services and the total number of respondents to the survey on lung transplants exceeds the total number of respondents to the staff survey, as some respondents answered both surveys. Where the total refers to respondents, this will be 176. Where the total refers to responses this will be a maximum of 306 as we counted 152 responses to the survey on heart transplant services and 154 responses to the survey on lung transplant services.

Data analysis

Analysis of the surveys was guided by the needs of the expert group conducting the review; this influenced how analysis was conducted and which questions were prioritised to provide suitable information to the review. As a result of further quality assurance ahead of publication, a small number of figures have been slightly updated since the interim analysis was shared with experts in April. None of those corrections substantially changed the findings.

The analysis of the patient survey covered transplant assessment, transplant and post-transplant experience, and communication, mental health, and wellbeing support throughout the transplant pathway. Survey responses were analysed to look for variation among patients depending on the year of assessment and year of transplant, the organ(s) needed and whether they had received a transplant, and sex at birth.

The analysis of the staff survey covered workforce and training, pre-transplant management, organ offering and utilisation, transplant and post-transplant process and health inequalities and patient engagement. Survey responses were analysed to look for variation among heart and lung transplant services, transplant centre (where appropriate), and sex at birth.

At times, certain comparisons between centres or subgroups of respondents were deemed unsuitable due to low numbers. Where appropriate, analysts have aggregated results to a level which enables comparison without disclosing sensitive information. Where values have been suppressed due to small sample size this is indicated by ‘c’. Following best practice in NHSBT publications, where appropriate, analysts have aggregated the patients who receive a heart transplant alongside a single or double lung transplant with those patients who receive only a single or double lung transplant.

Caveats

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

• the results only reflect the views of patients and staff who responded to our survey. The patient survey was not open to all organ transplant patients but was distributed via stakeholders and patient networks, therefore introducing a potential sample bias. Most respondents for the patient survey had received their transplant. Results for the patient survey may be more representative of people who had completed the whole transplant journey. The staff survey was distributed to all transplant centres in England and Glasgow. Clinical leads for transplantation also shared it across their networks. Staff were free to respond or not respond to the survey and participation may have been influenced by the effectiveness of local distribution networks
• for the patient survey, results are shown as a proportion of those answering each question unless stated otherwise
• for the staff survey, results are shown as either a proportion of all respondents (176) or responses to each question, taking into consideration that some respondents answered both surveys. Therefore, in some cases the number of responses can be greater than the number of individual respondents
• the patient survey questions asking for the patient’s current age or their age at time of death as well as the patient’s age at time of transplant included the options of both ‘51 to 65’ and ‘65 and over’. Respondents aged exactly 65 years could have reasonably selected either of these categories, and it is impossible to know to what extent this impacts results involving patients’ age
• the staff survey question asking how long they had worked in their role included the options of both ‘2 to 5 years’ and ‘5 to 10 years’. Respondents who had been in their role for 5 years could have selected either of these categories
• some population subgroups were underrepresented in our analysis, including patients from black and Asian ethnic backgrounds, and patients needing and/or receiving both a heart and lung transplant.​ Caution must be applied when interpreting and comparing percentages as totals for certain subgroups may be very small

Results

Patient survey

Respondent demographics

604 people completed the patient and carer survey (and consented to their data being used). 529 of these filled out the survey themselves, and 72 completed it on behalf of someone else, as their parent, family member, or carer. Throughout the report we refer to ‘respondents’ which may be either the transplant recipient or someone who filled the survey out on their behalf, representing the characteristics and attitudes of the transplant recipient.

346 respondents (57%) identified as male and 258 (43%) as female, with a majority (89%) identifying as white. 88% of respondents currently reside in England with 11% in the rest of the UK.

Of the 492 respondents who had received their transplant at the time of being surveyed:

• 4% were aged 5 or younger (18 respondents)
• 9% were 6 to 18 years old (42 respondents)
• 21% were 19 to 35 years old (104 respondents)
• 27% were 36 to 50 years old (135 respondents)
• 37% were 51 to 65 years old (181 respondents)
• 2% were over 65 years old (12 respondents)

For context, as of March 2024 there were around 500 patients on cardiothoracic organ transplant lists in the UK and 4,200 patients alive following a cardiothoracic organ transplant, while 57 patients died waiting for transplant in the year to March 2024. While the patient survey had a reasonable response rate compared to the population of interest, the results may not be reflective of all groups.

Organ(s) for transplant

Of the respondents:

• 374 (62%) were assessed, waiting for, or had received a heart transplant
• 183 (30%) were assessed, waiting for, or had received a double lung transplant
• 30 (5%) were assessed, waiting for, or had received a heart transplant and a single or double lung transplant
• 17 (3%) were assessed, waiting for, or had received a single lung transplant

Stage of transplant journey

Most respondents had been through all stages of the transplant pathway when they completed this survey. All respondents answered this question.

Almost 8 in 10 lung or heart-lung transplant respondents had received their transplant, and 83% of heart only respondents had received theirs.

8% of lung or heart-lung transplant respondents were on the waiting list compared with 5% of heart only respondents.

Table 1: Which stage of the transplant care pathway are you or the patient currently at? ‘c’ in the table means the result is suppressed due to small sample size.

Stage	Lung or Heart-Lung transplant: %	Heart only: %
Suspended from the waiting list​	c	c
Don’t know​	c	3%
Completed the assessment and awaiting the decision about listing​	3%	0%
Completed the assessment and was not suitable to be placed on the transplant waiting list​	3%	2%
Referred for assessment for a transplant​	5%	5%
On the transplant waiting list​	8%	5%
Received a transplant less than a year ago​	10%	9%
Received a transplant more than a year ago​	69%	74%

Year of assessment

485 respondents had received their transplant and gave the year grouping in which their transplant was received. 28 respondents were awaiting assessment.

Table 2: number and percentage of transplant recipients by year of transplant

Cohort	Number	Percentage
Before 2000	137	28%
2000 to 2009	233	48%
2010 to 2019	60	12%
2020 to 2024	55	11%
Total	485	100%

Transplant assessment waiting time

443 respondents answered the question about how long they waited between a referral and attending their first appointment; 65 respondents answered ‘don’t know’.

The most common waiting time was between 1 and 3 months with 28% of respondents giving this as their waiting time. Around 1 in 3 of all respondents (32%) reported waiting less than a month (those who waited less than a week and those who waited between 1 week and 1 month). This was 41% of just heart transplant recipients and 18% of just lung recipients. More than 1 in 4 of those receiving a heart-lung transplant (26%) received them within a month.

1 in 4 heart transplant recipients (25%) waited for a period between 1 month and 3 months and 30% of just lung transplant recipients also had this wait time. 39% of heart-lung transplant recipients waited for this period.

4% of patients waited more than a year between referral and attending their first appointment. This was 3% of heart only transplant recipients and 5% of only lung transplant recipients.

Between 2000 and 2009, 35% of respondents noted waiting less than a month between their referral and attending their first appointment. Between 2020 and 2024, this was also 35% of respondents. The waiting time with the biggest increase was between 1 and 3 months, which increased from 22% of respondents between 2000 and 2009, to nearly a third of respondents between 2020 and 2024.  

Figure 1: How long did it take between being told that you or the patient would be referred to a transplant centre for assessment, to attending first appointment?

By year of assessment (2000 to 2024). This figure excludes ‘don’t know’ and ‘more than 1 year’.

Waiting time	2000 to 2009 %	2010 to 2019 %	2020 to 2024 %
Less than 1 week	15%	9%	7%
Between 1 week and 1 month	20%	21%	28%
Between 1 month and 3 months	22%	27%	31%
Between 3 months and 6 months	13%	17%	18%
Between 6 months and 1 year	8%	7%	5%

Outcome of assessment and transplant listing

For the 508 respondents who had an assessment, following the assessment:

• 88% were listed for a transplant
• 8% were too well to need a transplant
• 3% were either too high risk, or too unwell to be able to have a transplant
• 1% did not want to be listed for a transplant

Of the 441 respondents who answered with their transplant listing centre, almost 4 in 10 were listed at the Harefield transplant centre (39%), followed by 19% being listed at Manchester.

Table 3: Which transplant centre are (or were) you or the patient listed with?

Centre	Number	%
Birmingham	33	7%
Glasgow	14	3%
Great Ormond Street Hospital	27	6%
Harefield	171	39%
Manchester	83	19%
Newcastle - adult transplant service	48	11%
Newcastle - paediatric transplant service	5	1%
Papworth	47	11%
Listed at more than one transplant centre	8	2%
Other	5	1%
Total	441	100%

Of the 445 respondents who were listed at their first appointment, nearly 8 in 10 were told about the most likely outcome for them (79%), for example how long they might have to wait for a transplant. However, other information was not given as thoroughly, with only 1 in 3 given information on transplant outcomes at other transplant centres, and almost 1 in 2 (49%) were given information on waiting times at other centres.

Figure 2: information provided at first appointment

Information	% Yes	% No	% Don’t know
Were you or the patient provided with information about transplant outcomes at other transplant centres?	33%	49%	18%
Were you or the patient provided with information about how long the waiting times for transplants were in all transplant centres?	49%	38%	13%
During the assessment process did the transplant centre provide information about the most likely outcome for you or the patient?	79%	14%	7%

77% of respondents were aware of their listing status, be it non-urgent, urgent or super urgent and 47% had a risk communication tool assessment with the transplant assessment team to help assess outcomes based on their individual circumstances.

Factors important in choice of transplant centre

Of the 445 respondents who rated the importance of various factors in the choice of centre, the factor rated as ‘extremely important’ across most respondents was transplant centre excellence, followed by survival rates. ‘Other patient recommendations’ were only rated as ‘extremely important’ for just under 3 in 10 respondents. Interestingly, travel distance was most rated as ‘not important at all’ with a quarter of respondents selecting this.

Figure 3: How important would you consider each of the following points in deciding where to be listed for a transplant?

Factors for decision	% ‘1 (not important at all)’	% ‘2’	% ‘3’	% ‘4’	% ‘5 (extremely important)’	Total
Other patient’s recommendation	14%	9%	24%	22%	30%	100%
Travel distance	25%	9%	17%	16%	33%	100%
Short waiting time	8%	8%	20%	22%	42%	100%
High transplant activity	6%	5%	14%	27%	48%	100%
Clinical team recommendation	4%	2%	10%	21%	63%	100%
Enough information for informed choice on treatment	2%	2%	9%	20%	67%	100%
Survival rates	7%	5%	9%	11%	67%	100%
Transplant centre excellence	4%	2%	5%	14%	75%	100%

Transplant and post-transplant experience

81% of all respondents (492 people) said they had received a transplant.

Those residing in England were most likely to have either not had their transplant, or had the transplant prior to 1999, with only 23% of respondents residing in England receiving their transplant between 2020 and 2024.

This means the views shared by respondents (and their family members or carers) about their transplant experience may not be reflective of transplant services today. 

We also do not know the extent to which the COVID-19 pandemic may or may not have shaped patients’ experiences.

Most respondents received heart only (30%) or lung only (41%) transplants between 2010 to 2019. 21% of heart only transplant recipients had not yet received their transplants compared to 17% of single or double lung transplant recipients. 13% of heart only transplant recipients received their transplants before 1999 compared to 8% of single lung or double lung transplant recipients.

Operation and time in hospital

Respondents who had received their transplant were generally extremely satisfied with both their operation and time in hospital.

Patients who had received a transplant were asked to rate their satisfaction on the operation and their time in hospital for 8 different factors, and respond with a rating ranging from:

1 - very unsatisfied - the level of care, support and overall experience was poor, to

5 - extremely satisfied - the level of care, support and overall experience was excellent

The 8 factors respondents were asked to rate their satisfaction for, were:

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

Various numbers of respondents rated their satisfaction for each factor, ranging from 445 who rated their experience with being contacted to say an organ was available, to 470 who rated their care in hospital following the operation.

Each of the 8 factors received an ‘extremely satisfied’ rating by at least 74% of respondents, and ‘satisfied’ or ‘extremely satisfied’ by at least 87% of respondents. Being contacted to say an organ was available was rated with ‘extremely satisfied’ by the highest proportion of respondents, at 89%.

Generally, the proportion of respondents who scored ‘very unsatisfied’ was low across all factors with the highest being 5% of respondents scoring ‘very unsatisfied’ for information about future assessments.

Post transplant care - location

Of the 492 patients who had received a transplant:

• 71% said they were not given a choice for the location of their post-transplant care
• 20% said they were given a choice
• 9% answered ‘Don’t know’

We also asked respondents if they had been given the option of receiving at least some of their post-transplant care closer to their home. Of the answers:

• 23% said that it was not necessary, as they lived close to the transplant centre
• 18% said they were given the option
• 53% said they were not given the option
• the remainder answered ‘Don’t know’

Post transplant care - understanding responsibility and seeking advice

When asked if respondents understood who was responsible for their care and where they could go for help:

• 81% said they fully understood
• 17% said they knew who was responsible for some of their care, but not all
• 3% said they did not know who was responsible for their care

Respondents were asked to rate, if relevant, their satisfaction with post-transplant advice, received through their GP, the patient advice line and emergency advice.

Of those who sought advice through their GP practice post-transplant, 40% rated their experience as poor or very poor.

Emergency advice (24/7) was rated the most highly, with 63% scoring it as excellent and 5% rating it as very poor.

The patient advice line, which is only available during working hours, but 7 days a week, was rated similarly with 58% scoring its service as excellent and 8% as very poor.

Figure 4: How would you rate the quality of the following services in providing advice after your transplant?

Satisfaction with service	%  ‘1 (very poor)’	% ‘2’	% ‘3’	% ‘4’	% ‘5 (excellent)’	Total
Advice through GP	22%	18%	22%	16%	22%	100%
Patient advice line	8%	4%	14%	15%	58%	100%
Emergency advice	5%	5%	12%	15%	63%	100%

Communication, mental health, and wellbeing support throughout the transplant pathway

Respondents were asked to rate communication across the transplant pathway and the support received from transplant centre(s) across a range of factors. They were also asked whether they felt comfortable to raise concerns at any stage of the care pathway.

Perception of communication

Respondents were asked to rate 3 communication routes. Communication from the transplant centre to other hospital, from the transplant centre to GP, and from the transplant centre to the patient, scoring from ‘1 (very poor)’ to ‘5 (excellent)’.

Respondents were more likely to rate communication between the transplant centre and patient as ‘excellent’, compared to communication between the centre and their GP and/or other hospitals. Specifically, respondents rated:

• communication between the centre and patient most highly, with 66% scoring it as excellent and 4% rating it as very poor
• communication from the centre to the patient’s GP not as highly, with 45% rating it excellent. However, only 8% rated it as very poor, so the communication was more average or satisfactory
• communication between the transplant centre and other hospitals as relevant to fewer people, with 49% rating it as excellent

Figure 5: perception of communication

Communication with service	% ‘1 (very poor)’	% ‘2’	% ‘3’	% ‘4’	% ‘5 (excellent)	Total
How well do you think the transplant centre communicated to the GP?	8%	7%	15%	24%	45%	100%
How would you rate the communication between the transplant centre and other hospital team?	8%	7%	16%	20%	49%	100%
How well do you think the transplant centre communicated with you or the patient?	4%	4%	10%	17%	66%	100%

Perception of support

Respondents were asked to rate the support they received from the transplant centre across 6 different factors from ‘1 (very poor or no support)’ to ‘5 (excellent or full support)’.

Of the respondents who said they needed support, nearly 1 in 3 (30%) said they did not receive fertility advice or the advice they received was poor. We also found that, of those who said they needed support from their transplant centre, almost 1 in 4 (24%) said their family members and/or carers did not receive mental health support, or the support they received was poor or very poor. However, 56% rated their overall health support as excellent or full support.

Figure 6: How would you rate the support you or the patient received from the transplant centre for the following health and wellbeing issues?

Support topic	% ‘1 (very poor or no support)’	% ‘2’	% ‘3’	% ‘4’	% ‘5 (excellent or full support)’	Total
Fertility advice	30%	17%	13%	15%	26%	100%
Mental health support: family or carers	23%	18%	16%	12%	32%	100%
Social care support	21%	13%	18%	14%	35%	100%
Mental health support: patient	12%	10%	17%	18%	43%	100%
Overall health support	6%	6%	12%	20%	56%	100%
Side effects of medicine	8%	8%	10%	17%	57%	100%

71% of male patients said that fertility advice was not required compared to 56% of female patients. Of those who felt fertility advice was required (males = 100, females = 133), male patients were more satisfied with the advice than female patients, with 30% of males rating the advice as excellent compared to 22% of females.

For patients who required social care, 35% of those identified as white and 38% of those identified as Asian felt it was excellent, whereas only 22% of those identified as black thought the same. 56% of black patients and 50% of mixed patients who utilised or required social care support felt it was very poor.

Raising concerns

Respondents were asked about their comfort level in raising concerns at all stages of the transplant journey, with answer options of:

• yes - I felt able and comfortable raising concerns at all stages along the care pathway
• mostly - I felt able and comfortable raising concerns at most stages of the care pathway
• partly - I did not feel able and comfortable to raise concerns at some stages of the care pathway
• no - I did not feel able and comfortable raising concerns at any stage of the care pathway

78% of males felt completely able and comfortable to raise concerns at all stages of the care pathway (answering ‘Yes’), compared to 65% of females. However similar proportions of male and female patients answered either ‘Yes’ or ‘Mostly’ when asked about their comfort level in raising concerns.

57% of black patients felt completely able and comfortable to raise concerns at all stages of the care pathway, compared to 74% of white patients. 14% of black patients said they did not feel comfortable raising concerns at any stage of the care pathway compared to 3% of white patients. It is worth noting, however, that the number of white and black patients it is not equal.

Staff survey

For ease, throughout this chapter the survey on heart transplant services is referred to as ‘heart survey’ and the survey on lung transplant services is referred to as ‘lung survey’.

Staff could respond to the heart survey alone, the lung survey alone, complete both surveys separately, or complete the heart survey and indicate that their responses would also apply to the lung survey.

While there were 176 staff respondents, there were 152 responses to the heart survey, 36 responses to the lung survey, and 118 heart survey responses which would also apply to the lung survey. Therefore, the number of responses is greater than the number of respondents.

The analysis is presented by ‘heart’ and ‘lung’, referring to the respective survey of those transplant services, not necessarily the professional’s only affiliation.

Respondent demographics

176 respondents answered the staff survey, of which 149 worked in adult heart transplantation, 136 in adult lung transplantation and a smaller number in paediatric heart (33) and paediatric lung (29) transplantation.

Most respondents to either survey worked as transplant surgeons, with 15% of respondents holding this role. Overall, 25 respondents worked as transplant physicians, 23 respondents worked as recipient co-ordinator, 16 were specialist nurses and 12 critical care specialists. Please note that respondents were able to choose multiple roles and could respond to both or either survey.

Most respondents were working in Newcastle’s adult transplant service (60), followed by Harefield (51), Newcastle’s paediatric transplant service (25), Manchester (24), Papworth (10), Birmingham (8), Great Ormond Street Hospital (7), and Glasgow (6). The split between respondents working in heart and lung transplant services is relatively even.

Of the 176 respondents, less than 20 (11%) have worked in their current role for less than 2 years. 76 respondents (43%) have been in their role for more than 10 years.

Over half of respondents said they dedicate on average 75% to 100% of their working hours to the transplant service.

Workforce and training

Respondents were asked whether retention and recruitment currently posed a problem within their role and/or specialty and transplant centre. Retention was perceived a problem for over half of respondents to both surveys (51% heart survey and 52% lung survey) and recruitment was a problem for just under half of respondents to both surveys (48% heart and lung survey). Less than 1 in 3 respondents did not think retention or recruitment are problematic (28% heart survey and 27% lung survey).

Both surveys asked for the most common perceived reasons for people leaving the transplant team. The majority of respondents chose ‘want a better work/life balance or burnout’ (67% heart survey and 66% lung survey), followed by ‘higher salary offered elsewhere’ (48% heart survey and 50% lung survey). Around 1 in 3 respondents mentioned new positions being taken either abroad (32% heart survey and 37% lung survey) or in the UK (32% heart survey and 34% lung survey).

Figure 7: What do you believe to be the most common reasons for people leaving the transplant team?

Reasons for leaving	% Heart	% Lung
Career break	5%	6%
Other	7%	8%
Not applicable - no one has left	9%	6%
Left the profession for a career change	11%	14%
Team culture	24%	25%
Accepted a new position in the UK	32%	34%
Accepted a new position abroad	32%	37%
Higher salary offered elsewhere	48%	50%
Want a better work/life balance and burnout	67%	66%

Respondents were also asked about retention. Overall, salary was deemed the most important factor for retention by close to 1 in 4 (23%) respondents. However, this was 20% of female respondents and 28% of male respondents. While salary was most important to male respondents, female respondents most highly valued a ‘positive team ethos’ (23%). ‘Support from the trust (for example, transplantation given a priority within the trust)’ was deemed most important by around 1 in 5 respondents overall (22%) with similar results between male (21%) and female (22%) respondents. 

Figure 8: rank the following factors (for retention) in order of importance for you

Factors for retention	% female	% male
Salary	20%	28%
Support from the trust (for example, transplantation given a priority within the trust)	22%	21%
Positive team ethos	23%	10%
Work/life balance	18%	13%
Career development and progression opportunities	10%	14%
Professional recognition (for example, peer support for salary uplift)	2%	7%
Training opportunities	3%	4%
A well organised rota	2%	3%

When asked whether the team in their transplant unit had the right skill mix, around 3 in 4 respondents said ‘yes’ (75% heart survey and 73% lung survey). When asked whether their transplant unit included a transplant manager around half of respondents said ‘yes’ (48% heart survey and 51% lung survey) and around 1 in 4 said ‘no’ (26% heart survey and 25% lung survey).

Respondents were asked whether they believe continuous professional development should be mandatory. Just under 3 in 4 respondents said ‘yes’ (72% heart survey and 74% lung survey) and less than 1 in 20 said ‘no’ (4% heart survey and 3% lung survey). However, only around 1 in 3 respondents (31% heart survey and 29% lung survey) said there is currently a minimum number of procedures set for them to be performed in a certain timescale to maintain their competency.

Pre-transplant management

Both surveys asked respondents to rate how well they believe their unit manages various aspects of the patient journey. Respondents were asked to rate each aspect on a scale from ‘1 (very poor)’ to ‘5 (extremely well)’. The responses were that:

• almost 1 in 6 respondents (14% heart survey and lung survey) rated communication between centres as ‘extremely well’. Most respondents rated this with a ‘4’
• around 1 in 3 respondents (27% heart survey and 30% lung survey) rated access to patient assessment as ‘extremely well’
• around 1 in 5 respondents (20% heart survey and 21% lung survey) rated management of referral networks as ‘extremely well’. Most respondents rated this with a ‘4’
• the majority of respondents (61% heart survey and 64% lung survey) rated availability of clinic slots with a ‘3’ or higher
• the multidisciplinary team (MDT) efficiency was generally rated very highly with 1 in 3 respondents (30% heart survey and 34% lung survey) rating it as ‘extremely well’
• MDT collaborative was rated equally positively with around 7 in 10 respondents (68% heart survey and 71% lung survey) rating it with a ‘4’ or ‘5’
• more than half of respondents (55% heart survey and 58% lung survey) rated the follow up of patients on the waiting list as ‘4’ or ‘5’

Nearly 1 in 3 respondents (32% heart survey and 31% lung survey) said they ‘strongly agree’ with the statement that their transplant team provides optimal care for patients on the transplant waiting list.

When asked which team member is responsible for managing the transplant waiting list, the majority of respondents chose ‘recipient co-ordinator’ (36% heart survey and 36% lung survey), followed by ‘transplant physician’ (24% heart survey and 24% lung survey).

Around 1 in 2 respondents (49% heart survey and 51% lung survey) said that patients are reviewed by an anaesthetist before going on the waiting list.

Organ offering and utilisation

The majority of respondents (57% heart survey and 60% lung survey) said that ‘yes’, a more standardised donor management protocol of potential ‘Donation after Brainstem Death’ (DBD) patients in the Intensive Care Unit (ICU) could improve heart and lung utilisation.

Similarly, only 1 in 5 respondents (20% heart survey and 21% lung survey) said that ‘yes’, enough donor information is made available to implanting centres.

Across all centres, 1 in 5 respondents (20%) identified the management of potential DBD donors as a significant barrier to organ utilisation. A similar proportion identified the screening of potential DBD donors (17%) and lack of workforce (17%) as significant barriers.

Transplant and post-transplant process

Respondents were asked how they perceived access to resources needed to support the transplant operation by rating access to those resources on a scale from ‘1 (very poor access)’ to ‘5 (extremely good access)’. The responses were that:

• a small proportion of respondents (4% heart survey and lung survey) said their access to staffing is ‘very poor’; about 1 in 10 respondents to the lung survey (11%) and a similar proportion of respondents to the heart survey (14%) said they have ‘extremely good access’ to staffing
• around 1 in 5 respondents to the heart survey (22%) and similarly to the lung survey (17%) said they have ‘extremely good access’ to the theatre. The majority of respondents (63% heart survey and 60% lung survey) rated access to the theatre with a ‘3’ and higher
• respondents rated access to ICU beds similarly to access to the theatre with around 1 in 5 respondents (22% heart survey and 20% lung survey) rating access as ‘extremely good’ and a very small proportion (3% heart survey and 5% lung survey) rating access as ‘very poor’
• access to machine perfusion was perceived very similar, around 1 in 5 respondents (22% heart survey and 20% lung survey) said they have ‘extremely good access’ and more than half (57% heart survey and 55% lung survey) rated access to machine perfusion as ‘3’ or above

Both surveys asked who oversees the long-term management of a patient post-transplant and in both surveys 8 in 10 respondents (81% heart survey and 82% lung survey) identified the transplant centre as responsible. 1 in 10 respondents (11% heart survey and 10% lung survey) said this would be ‘shared care’. In the event of an emergency, 2 in 5 respondents (41% heart survey and 40% lung survey) said the transplant centre would be responsible while 1 in 3 respondents (33% heart and lung survey) said that local Accident and Emergency (A&E) would be responsible.

Health inequalities and patient engagement

Respondents were asked to consider the extent of health inequalities present across various aspects of the transplant service. Respondents were asked to rate the perceived inequalities from ‘1 (no inequalities)’ to ‘5 (severe inequalities)’. Between 1 in 4 (when asked about inequalities in access to post-transplant follow-up care) to 2 in 5 (when asked about access to referral for assessment) respondents chose the ‘Don’t know’ option. This means the results of this question have to be interpreted with caution. However, it is worth noting that across all of the potential aspects, only a small proportion (6% or less) of respondents perceive ‘severe inequalities’.  

Just under 1 in 3 respondents (28% heart survey and lung survey) said ‘yes’ greater diversity in the workforce would improve engagement with people from all backgrounds, while about 1 in 5 respondents (22% heart survey and lung survey) said ‘no’.

The majority of respondents, almost 4 in 5 (78% heart survey and 79% lung survey) said ‘yes’ patients are given enough information to help them make decisions about their care.

Regarding the use of the ‘patient transplant risk communication toolkit’ respondents were almost evenly split between those who ‘never’ use it (14% heart survey and lung survey) and those who ‘always’ or ‘usually’ use it (17% heart survey and 18% lung survey).

Only a small proportion of respondents said that patients are not engaged in service design and improvement (5% heart survey and 3% lung survey). The most commonly used method for engaging patients was ‘ad-hoc patient feedback’ (47% heart survey and 51% lung survey) followed by patient complaints (43% heart survey and 47% lung survey), local transplant patient groups (40% heart survey and lung survey) and patient questionnaires (39% heart survey and 40% lung survey).