Kidney patient transport audit 2012

Patient
Transport
Audit
2012

Kidney Care

Better Kidney Care for All

Reader page
Title

Kidney Patient Transport Audit 2012

Authors

Carol Davies, Dr James Hollinshead, Margaret Holmes, East Midlands
Public Health Observatory
Katrina Kirkby, James Medcalf, Beverley Matthews, NHS Kidney Care

Publication date

March 2013

Target audience

Kidney community ‐ commissioners and providers of kidney transport
services, patient groups, clinical directors, lead nurses, network
managers
NHS England (formerly NHS Commissioning Board)
Hospital trusts and Clinical Commissioning Groups

Circulation list

Kidney dialysis centres
Commissioners and providers of kidney transport services
Kidney patient groups
Clinical Commissioning Groups

Description/
purpose

This publication draws together the key findings from a national audit
of the experience of patient transport services. A survey of all people
receiving haemodialysis was conducted in October 2012, asking about
their experience of transport to and from haemodialysis, and
comparing this with national standards. This audit is the third in a
series of audits previously performed in 2008 and 2010. It was
commissioned by NHS Kidney Care.

Cross Ref

National Kidney Care Audit. Patient Transport Survey Report on the
2010 Survey. NHS Kidney Care 2011. Specialised Commissioning Group
reports
http://www.kidneycare.nhs.uk/resources_old/reports/patient_transp
ort_survey_report/

The full 2008 and 2010 national reports are available on the NHS
Information Centre for Health and Social Care website
http://www.ic.nhs.uk/

Superseded docs

n/a

Action required

Commissioners and providers of kidney transport services and patients
may use this report to assess and benchmark their service against
other providers and against national guidelines.

Timing

Ongoing

Contact details

caroldavies1@nhs.net

Contents

1. Foreword

2. Acknowledgements

3. Summary of discussion points

4. Introduction

5. Methodology

6. Results – Patient Questionnaire
6.1 Response rate
6.2 Age of patients
6.3 Mode of transport
6.4 Payment for transport
6.5 Journey distance
6.6 Travelling time for patients
6.7 Waiting time for pickup for journey to dialysis
6.8 Waiting time at unit for dialysis to start
6.9 Waiting time for pick up for journey after dialysis
6.10 Patient satisfaction

7. Results – Unit Manager Questionnaire
7.1 Eligibility criteria and patient payment support
7.2 Review of patient transport arrangements
7.3 Charging for hospital arranged transport
7.4 Commissioning and contracting arrangements
7.5 Monitoring contracts for renal patient transport
7.6 Impact of transport on clinical care
7.7 Additional comments from the unit manager questionnaires
7.8 Discussion points

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References

Appendix 1
Appendix 2
Appendix 3
Appendix 4
Appendix 5
Appendix 6
Appendix 7
Appendix 8
Appendix 9
Appendix 10
Appendix 11
Appendix 12
Appendix 13

Patient questionnaire
Unit manager questionnaire
Survey frequently asked questions
Number of responses and response rate by country and strategic clinical
network
Number of responses and response rate by main unit
Mode of transport to dialysis by country and strategic clinical network
Mode of transport to dialysis by main unit
Proportion of patients with journey time to dialysis less than 30 minutes, and
journey distance less than 10 miles by country and strategic clinical network
Proportion of patients with journey time to dialysis less than 30 minutes, and
journey distance less than 10 miles by main unit
Proportion of patients travelling by hospital arranged transport with waiting
times less than 30 minutes by country and strategic clinical network
Proportion of patients travelling by hospital arranged transport with waiting
times less than 30 minutes by main unit
Proportion of patients where transport needs met always or most of the
time, by country and strategic clinical network
Proportion of patients where transport needs met always or most of the
time, by main unit

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1. Foreword

I am delighted to welcome this, the third survey into transport for dialysis patients, which follows
audits carried out in 2008 and 2010.

More than 11,000 patients completed this survey, from 246 of the 256 haemodialysis units in
England, Wales and Northern Ireland.  This is an impressive response rate, and thanks are due to all
participating patients, and to units for their co‐operation and enthusiasm in delivering the audit.

At national level, most findings are very similar to previous surveys, but there is evidence that
improvements are being made. For example, more patients are being collected from their home
within the target of 30 minutes of expected pick‐up time (81 per cent of patients collected within
this time frame, compared to 76 per cent in 2010).

However, the aggregate numbers drawn from so many dialysis units could mask real and important
changes in individual centres, both improvements and deterioration. Some unit level information is
included in this report, but further unit‐specific reports containing more detailed local data will be
released in May 2013.  Units should look at, and act upon, their own local data, bearing in mind that
patient transport is about patient experience. Talk to your local Kidney Patient Association and
individual service users to gain insight. And it shouldn’t stop at unit level ‐ strategic clinical networks
must use the information in this report to assess what needs to be done to drive improvements.

There are some real positives to take from this report. Just under 90 per cent of respondents said
their current transport arrangements met their needs either all or most of the time.  When things
work well, transport is seen as much more than a means of getting from A to B.  It contributes to an
improved quality of life for dialysis patients and in some cases is even seen as a positive therapeutic
experience!  Some of the patient comments are powerful endorsements: “Hospital transport is a
great help ensuring attendance to the hospital regularly.  Without it, life may have lost its meaning.”

Despite high levels of overall satisfaction, there remain many examples of poor patient experience,
particularly in the time taken to return home after a dialysis session. When providers use multiple
drop offs, patients report 45‐minute journeys taking two hours, and having to sit in cold vehicles for
20 minutes at a time while less able patients are helped into their homes.

Bolton renal unit is a great success story. Two drivers manage two transport buses, working to
ensure that patients are not waiting too long to commence dialysis or to go home. Both drivers have
won awards for their dedication to the service.  This is not an isolated tale, and it is inspiring to know
there are people prepared to go that extra mile to ensure a friendly and efficient service.

While we should celebrate, and learn from, these positives, there is still much to be done to ensure a
consistent, high quality transport service is in place for all who need it. It’s down to the kidney
community ‐ commissioners and providers of kidney transport services, patient groups, clinical
directors, lead nurses, network managers – as well as NHS England, hospital trusts and Clinical
Commissioning Groups, to make sure this happens.

Perhaps most importantly, patients should be involved in the commissioning and monitoring of
transport. The audit demonstrates that patients want to contribute. They have unique insight into
the process and a clear interest in driving up quality.

Donal O’Donoghue
National Clinical Director for Kidney Care, Department of Health

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2. Acknowledgements

The patient transport audit was commissioned by NHS Kidney Care and was carried out by
the East Midlands Public Health Observatory.

Thanks are due to all the patients, dialysis unit managers, staff and administrators who
made this survey possible through their support and hard work.  We also thank the patients,
patient representatives and patient transport commissioners who attended the workshop
held in May 2012 and advised regarding the conduct and content of the survey.

We also acknowledge the commissioners and managers of the previous surveys carried out
in 2008 and 2010: the Healthcare Quality Improvement Partnership and the NHS
Information Centre for Health and Social Care, particularly Dr Alistair Chesser who was the
author of the 2010 survey report.

From 1 April 2013, NHS Kidney Care moves into NHS Improving Quality (NHS IQ), a new body
that has been created to bring together the wealth of knowledge, expertise and experience
from a number of NHS improvement organisations. For more information, email
enquiries@nhsiq.nhs.uk

Public Health England was also established on 1 April 2013, to bring together public health
specialists from more than 70 organisations into a single public health service to protect and
improve the nation's health and wellbeing, and to reduce inequalities. For more
information, see www.gov.uk/phe

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3. Summary of discussion points

6.1 Response rate
 The findings of the audit are based on 11,190 patient responses from 246 of the 256
units known to provide haemodialysis in England, Wales and Northern Ireland.  With
such high participation rates the audit is likely to reflect the national picture with respect
to haemodialysis patient transport.
 Variation in the number of responses, and response rate, should be considered when
interpreting unit level results.
 An overrepresentation of patients using hospital arranged transport compared to
patients using their own car or using public transport is suspected, but this does not
affect the major findings and conclusions of the audit.

6.2 Age of patients
 People aged 24 or younger accounted for less than two per cent of respondents, whilst
older people aged 65 or more accounted for over half, a similar age profile to previous
surveys.

 Two thirds of patients who travel regularly for haemodialysis treatment do so using
hospital arranged transport. Older patients are more likely to rely on hospital arranged
transport, and there has been no change in the proportion using hospital arranged
transport between 2010 and 2012.
 By unit, there is over three‐fold variation in the proportion of patients using hospital
arranged transport.  This requires careful interpretation in the light of local knowledge
regarding application of eligibility criteria.
 The most common reasons for being unable to use private or public transport were
related to ill health or immobility, or lack of access to a car.  However, local units should
investigate whether those reasons amenable to change (including lack of parking) can be
addressed.

 Units may find it more cost effective to reimburse patients using other modes of
transport if this leads to a reduction in reliance on hospital arranged transport.
 Overall 22 per cent of patients pay for their transport to and from dialysis; most
commonly people using public or private transport.
 Only six per cent of patients said they had been given the chance to review whether or
not they have to pay for dialysis transport within the last six months.

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 Patients usually wish to minimise the distance they travel to get to their dialysis unit.
These data continue to provide reassurance that for the majority of patients the
distance travelled to get to their dialysis unit is less than 10 miles.
 Just over six per cent of survey respondents said they were not having dialysis in their
unit of choice, and about two thirds of these said they would prefer to have dialysis in a
unit closer to where they live.  This indicates that this is a relatively small – although
potentially very important – issue.

 Travelling time is important for patients and, except due to local geographical
circumstances, it is recommended that travel time to a haemodialysis unit should be less
than 30 minutes.
 In 2012, 67 per cent of patients had a travel time of less than 30 minutes.  Overall, there
has been no substantial change compared to previous surveys.
 The aggregate numbers drawn from so many dialysis units could mask real and
important changes in individual centres, both improvements and deterioration, and the
local reports will illustrate this important detailed information.
 Patients using public transport have much longer travel times than those using private or
hospital arranged transport.  One in five patients using public transport travel for more
than one hour to reach their dialysis unit.
 There is wide variation in travel time by unit and this emphasises the importance of
taking local knowledge into account when setting and measuring targets.  However,
while a journey time of less than 30 minutes may be difficult to achieve in congested or
sparsely populated areas it is an aspiration worth pursuing as it makes a difference to
the quality of life for patients.
 Patient comments illustrate the frustration of making multiple detours in what would
otherwise be a quick and straightforward journey to and from home. A straightforward
way of reducing transit time for hospital arranged transport patients is to minimise
diversions to collect or drop off other patients where possible, ensuring journeys are
more direct.

 It is recommended that patients using hospital arranged transport are collected within
30 minutes of their scheduled pick up time.
 Overall in 2012, over 81 per cent of patients using hospital arranged transport were
collected within 30 minutes – an improvement since 2010.
 About one third of patients stated that they had an appointment window rather than a
specific pick up time and for about one in eight of these patients the pick up window
was two hours or more, which could cause significant inconvenience to the patient.

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important changes in individual centres, so units should look their own local reports for
this and other waiting time indicators included in the survey.

 It is recommended that patients using hospital arranged transport commence dialysis
within 30 minutes of arrival at the unit.
 Overall in 2012, over 77 per cent of patients using hospital arranged transport
commenced dialysis within 30 minutes of arrival on the unit; an improvement since
2010.

 It is recommended that patients using hospital arranged transport should be collected to
return home within 30 minutes of finishing dialysis.
 In 2012 almost 65 per cent of patients using hospital arranged transport commenced
their journey home within 30 minutes of being ready, similar to the proportions in 2010
and 2008.  However, 12 per cent waited for more than one hour to leave.
 Around 16 per cent of patients using hospital arranged transport say that transport
arrangements have affected the length of their dialysis session, but this happens
relatively infrequently.

 Just under 90 per cent of respondents said that their current transport arrangements
met their needs either all or most of the time.  There have been small improvements in
overall satisfaction levels with each consecutive survey.
 Patients travelling by public transport express much lower levels of satisfaction
compared to patients travelling by hospital arranged or private transport.
 Users of hospital arranged transport were particularly happy with friendliness of staff
and staff understanding of their needs, though far less so with punctuality and with the
number of additional patients collected or dropped off by their vehicle.
 As with other aspects of this audit, the real value will be on reflection and interpretation
of findings, both positive and those which show room for improvement, by local centres.
The detailed unit level reports, published separately, will allow such consideration.

 For many of the questions in the survey a large proportion of respondents indicated that
they did not know the answer.  In some cases this may be because the questionnaire
was completed by people with insufficient knowledge of the transport service.
However, on the whole the questionnaire was completed by the unit manager and it is
an important observation that some are unaware of how transport services are
commissioned, monitored and managed.

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 In over a third of units there was no regular process to review patient eligibility for free
transport or reimbursement for transport services.
 There are high proportions of unit managers who were unaware of the charging
arrangements for hospital arranged transport.
 Over half of unit managers reported that funding for renal transport is clearly identified,
with roughly the same proportion indicating that there is a separate contract in place for
renal transport, and detailed specifications for renal transport service levels are included
in the contract.
 About two thirds of the unit managers indicated there were no limitations on
appointment times for patients due to transport provision.
 Regular contract monitoring with the transport providers was in place in over two thirds
of cases. A similar proportion of units indicated that that patient views were captured in
the monitoring process.
 Transport issues affect dialysis unit staff, either through having to change working
patterns to cover late arrivals or spend time resolving problems. Staff also observe the
physical and psychological impact on patients.

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4. Introduction

What haemodialysis treatment involves

Renal replacement therapy (RRT) is a life‐long treatment for patients with end stage kidney
disease. It takes the form either of kidney transplantation or dialysis treatment. Not all
patients are suitable for a kidney transplant (either because they are not physically well
enough, there is no suitable donor kidney, or the patient may choose not to have a
transplant) and these patients have dialysis. Patients can move from dialysis to having a
transplant, and back to dialysis if the kidney transplant fails (and the cycle can be repeated).
Dialysis can be divided into two broad types or modalities: peritoneal dialysis and
haemodialysis. Peritoneal dialysis is a home based therapy, usually administered by the
patient with or without the help of a carer. Haemodialysis can also be performed at home,
but the overwhelming majority of patients in the UK have their haemodialysis treatment in a
dialysis unit. It is this latter group of patients, who have to travel to and from the dialysis
unit for their treatment, who are the subject of this patient transport audit.

Figure 1 ‐ Numbers of patients on Renal Replacement Therapy on 31/12/10: UK Renal
Registry Report 20111
Renal Replacement Therapy
England 42,660
NI 1,444
Wales 2,590

Kidney Transplantation 48.4%

Haemodialysis 43.9%

Peritoneal dialysis 7.7%

England 20,682

England 18,667

England 3,311

NI 660

NI 721

NI 63

Wales 1,281

Wales 1,091

Wales 218

Most patients on haemodialysis have three treatment sessions per week. Usually these take
place on Monday, Wednesday and Friday or on Tuesday, Thursday and Saturday (to be
effective they need to be evenly spaced). For a small minority of patients the number of
treatment sessions required may vary from two sessions per week to some patients needing
up to five sessions per week. During haemodialysis treatment blood is taken from the body,
pumped through an artificial kidney, and then back into the body. The time spent on the
machine for each patient is usually four hours per session (but may be more or less). Most
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dialysis units run two or three shifts of dialysis per day, so that patients dialyse either in the
morning, afternoon or evening.

How haemodialysis is organised

In 2010 in the UK 21.9 per cent of all RRT patients received dialysis based in a main unit, and
20.5 per cent in a satellite unit, and only 1.5 per cent performed haemodialysis at home.1

At the time of this survey, there were 75 kidney centres performing haemodialysis
treatment in England, Wales and Northern Ireland.  Twelve of these were paediatric units
and 63 were adult units.  Between them they had an additional 181 satellite units so, in
total, there were 257 dialysis units in England, Wales and Northern Ireland. Most renal
centres have a main unit, geographically part of a renal unit in a hospital with inpatient
beds.  In addition most centres also have other supporting services and satellite unit(s),
which may be based in associated hospitals or be free standing. Satellite units are located
within the catchment area of a main centre. Patients in satellite units are under the care of
doctors in the main unit. Satellite units may be run by the main unit, or by an independent
non‐NHS dialysis provider.

The importance of patient transport for haemodialysis patients

The lifelong nature of RRT, combined with the need for haemodialysis patients to attend
treatment three days a week, make the amount of time travelling to and from dialysis very
important. Patients, carers, healthcare professionals and commissioners all recognise that
patient transport should be seen as an integral part of the treatment for haemodialysis
patients. This importance was recognised in The Renal National Service Framework (2004).2
‘Adequate transport is so important to people on haemodialysis that it plays a vital role
in the formation of patient views and attitudes towards dialysis. Good transport systems
can improve patient attendance, and shorter travel times can improve patient co‐
operation if the dialysis treatment frequency needs to be increased. Efficient transport
facilities reduce interruption of patients’ social life and may therefore improve their
quality of life. ‘2
The Renal Association haemodialysis guidelines recommend that ‘Except in remote
geographical areas the travel time to a haemodialysis facility should be less than 30 minutes
or a haemodialysis facility should be located with 25 miles of the patients’ home. In inner
city areas travel times over short distances may exceed 30 minutes at peak traffic flow
periods during the day. Haemodialysis patients who require transport should be collected
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from home within 30 minutes of the allotted time and be collected to return home within
30 minutes of finishing dialysis.’3 Although they acknowledge that this guidance may not be
practical in some circumstances, such as patients who require specialist services such as
paediatric centres.

There is evidence that the distance a patient lives from, and the travelling time to, their
nearest dialysis unit are related to the acceptance rate on a dialysis programme4, and
adherence with treatment and outcomes5, suggesting travel time is an important factor in
equity of access to treatment.

Other important means of reducing transport time for patients are outside the scope of this
audit. One of these is for more patients to have their dialysis treatment at home, by
increasing the availability of home based therapy, and efforts continue to be made to
support this. Another is to ensure that dialysis units are built in locations close to where
patients live and with good transport links. Other issues such as parking availability can
impact on transport to dialysis. There is guidance available for parking close to the dialysis
unit6, and a lack of spaces may make driving impossible making patient transport the only
option in some cases.

Kidney patient transport audit measures

Patients who travel to dialysis can be divided into four broad transport categories: those
who walk (a small percentage); those who drive or are driven in a private car or taxi; those
who travel by public transport (bus, train); and those who use hospital arranged transport.
Hospital arranged transport may take the form of an ambulance, a multi‐occupancy vehicle
or a car.

When assessing the quality of hospital arranged transport, it is not just travelling times
which are important to patients. The time spent waiting to be collected from home for the
transport to arrive, the time spent waiting on the dialysis unit for treatment to commence,
and the time spent waiting for transport to travel home all contribute to the length of the
dialysis day. All these facets of transport are covered in this audit. Other important
dimensions of patient transport considered within the remit of this audit include; whether
patients had to pay for their travel and/or parking, the overall satisfaction level of patients
with patient transport services and the impact of transport issues on clinical care (for
example shortening of dialysis sessions).

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The 2008 and 2010 Patient Transport Surveys

National kidney patient transport surveys were carried out in 20087 and 20108, when all
non‐home based haemodialysis patients in England, Northern Ireland and Wales were asked
about their most recent experience of travel to and from dialysis including travel and
waiting times, and about their satisfaction with their transport arrangements. In a separate
survey, conducted at the same time, commissioners and dialysis unit managers were asked
about how they delivered their transport service and how they measured its quality.

The audits aimed to enable providers, commissioners and patient groups to benchmark the
current state of transport provision and to understand some of the barriers and challenges
to improving transport for dialysis patients.

The 2010 report made eight recommendations8:

1. There should be clear and transparent commissioning arrangements for transport for
haemodialysis patients. The lines of accountability and means of monitoring performance
should be agreed between commissioners, hospital trusts, dialysis units and transport
providers. Mechanisms for resolving complaints and appeals and for rectifying suboptimal
performance without delays should be included in this framework.

2. Commissioners should take responsibility and ensure that they are able to monitor and
enforce quality in transport provision for their haemodialysis patients. They should create
mechanisms which enable them to understand transport performance. This might include
regular audit and meetings with dialysis unit managers and transport providers to discuss
performance and mutual interests.

3. Dialysis providers should be involved in the transport service which their patients use.
Issues of eligibility, standards of performance, and quality of service should be explicitly
agreed, monitored and enforced. There should be close liaison between secondary care
transport officers and dialysis unit managers.

4. Patients should be involved in the commissioning and monitoring of transport. The audit
demonstrates that patients want to contribute. They have unique insight into the process
and a clear interest in driving up quality.

5. Dialysis units should continue to aspire to journey times as short as possible and certainly
less than 30 minutes for all patients. We recognize that this cannot always be achieved.
Minimising diversions to pick up other patients for those with longer journeys should be
encouraged, though there is a balance to be struck with the cost and environmental impact
of many vehicles doing similar journeys.
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6. New dialysis units should always be planned with patient transport an important factor in
the location of the unit. Proximity to the homes of patients and good road and public
transport links are of paramount importance. Home based dialysis treatment should always
be seriously considered, especially for those patients who would have a significant journey
time to their nearest dialysis unit.

7. Patients who are able to use their own means to get to dialysis should be encouraged and
empowered to do so.

8. All dialysis units should carry out regular audit of patient transport, including discovering
the views of its patients.

These recommendations were subsequently reinforced in the NHS Atlas of variation in
healthcare for people with kidney disease.9

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5. Methodology

The 2012 audit, led for the first time by NHS Kidney Care, was planned to continue the time
series of data collection that commenced in 2008 and 2010, and also examine areas where
services could be better or differently provided to improve transport provision.  The
methodology used in 2012 was very similar to that used in 2008 and 2010 to ensure validity
in comparing the results of the three surveys directly.

A workshop was held during the planning stage of the survey, attended by ten patients,
patient representatives and patient transport commissioners. Its main aim was to inform
development of the 2012 transport survey by obtaining views of stakeholders;
understanding patients’ concerns regarding transport and whether these were captured by
the survey.

The 2012 audit consisted of two questionnaires. The first was designed to ask patients about
their journey in to the dialysis unit on the day of the audit, and about their most recent
journey home from dialysis (included in Appendix 1).  The second was sent to dialysis unit
managers and is shown in Appendix 2.

The questionnaire for patients included questions about:
o What mode of transport they used for these journeys (hospital arranged transport,
private car, public transport, walking or taxi)
o Where they had travelled from in relation to the dialysis unit, to enable distances of
journeys to be calculated
o For those using hospital transport, the waiting time from scheduled pick‐up time to
when the transport set off (both pre and post dialysis)
o Transit time for the outward and homeward journeys
o Satisfaction with the service, globally and with respect to specific criteria
(cleanliness, politeness of staff etc)
o The number of other patients picked up or dropped off during the journey
o Whether patients pay for their transport

The questionnaire was almost identical in content and format to the 2008 and 2010 surveys
for patients, with only minor modifications to wording on a small number of questions being
made to reduce ambiguity, in response to feedback from patients from previous surveys. A
small number of additional questions (on the impact of transport on clinical care) were
added in 2012 to address issues raised at the patient survey workshop.

The patient questionnaire was given to all patients receiving dialysis in participating units on
either 17 October or 18 October 2012. These dates were chosen because they captured
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weekday journeys, avoided school or national holidays, were felt to be representative of
‘average days’, and mirrored the days chosen in October 2008 and October 2010 for the
previous surveys. By distributing the questionnaire on two consecutive days all patients who
had dialysis on three or more days per week (and many of the small number of patients who
received dialysis only twice per week) in participating units were captured once.  A small
number of units were not able to administer the surveys on the planned days, mainly due to
local administrative reasons.  In most of these units the survey was carried out on the same
days during the following week and it is not expected that this is likely to cause any
reliability issues for results from these units.

All known dialysis units (256) in England, Wales and Northern Ireland were invited to
participate, including all 12 paediatric units. A total of 246 units returned patient
questionnaires (see Section 6 of this report).  Dialysis unit staff were asked to encourage
patients to complete the questionnaire. Written and verbal reassurance was given to all
patients that their responses would be treated confidentially, anonymised and collated so
that it would not be possible to trace replies back to individuals. Help was given by dialysis
unit staff to those who requested it, including translation when possible. All patients were
assured that participation was voluntary and would not affect the care they were given.  A
copy of the frequently asked questions document issued to dialysis unit staff is included in
Appendix 3.

The manager of each dialysis unit was identified, and invited to complete the manager’s
questionnaire at the same time as the patient questionnaire was sent out. Each dialysis unit
received a manager’s questionnaire which was completed and returned by 202 of the
known 256 units (see Section 7 of this report).

Return of patient and unit manager questionnaires was followed up by email and telephone.
The questionnaires were collated and analysed by staff at the East Midlands Public Health
Observatory.

This report includes a high level summary of the results, and in addition some information
analysed by country, Strategic Clinical Network (SCN) and unit is included in tables in the
appendices.

The Way Forward: Strategic Clinical Networks10 confirmed that NHS England (formerly the
NHS Commissioning Board) will host SCNs from April 2013. These networks will work across
the boundaries of commissioning and provision to advise commissioners, support change
projects and improve outcomes.  This report includes data analysis at SCN level.  SCN has
been allocated on the basis of the location of the main dialysis unit, rather than address of
residence of the patient.

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The main renal centre analysis included in the appendices include data relating to the main
renal unit and all their satellite units (where applicable).  For the purposes of this report,
satellite unit data are summed to give an overall main unit figure.  However, where possible,
satellite unit level data will be included in the forthcoming detailed unit reports.

An important feature of this survey is the ability to look at change over time, across the
three surveys in 2008, 2010 and 2012.  However, some caution is necessary in interpretation
of trends.  Longitudinal studies involve repeated observations of the same variables and,
unlike cross‐sectional studies, they track the same people over time.  Therefore the
differences observed in those people are less likely to be the result of temporal confounding
differences.  Although there will be a large degree of overlap, the cohort of patients
responding to the 2012 survey will not be the same groups of people that responded in
2008 and 2010.  This is due to the flow of patients between treatment modalities over time,
affecting their eligibility for participation, and also patients eligible to participate at both
time points may have chosen not to respond on one or both occasions.  This methodological
issue means that it is possible that any changes between 2008 and 2012 may be due to
changes in the participating cohorts at each time point rather than true change in the whole
population over time.  However, the expected high degree of overlap between the two
cohorts means that it is reasonable to assume that there is validity in comparing the results
of the three surveys directly.

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6. Results – Patient Questionnaire

The purpose of this report is to present the general trends and findings of the audit at a
national level, with results summarised for England, Northern Ireland and Wales combined,
unless otherwise specified. Tables including results at country, Strategic Clinical Network
and unit level are included as appendices. More detailed unit level results will be published
separately during 2013.

6.1 Response rate

The findings of the audit are based on 11,190 patient responses from 246 of the 256 units
known to provide haemodialysis in England, Wales and Northern Ireland, of which 12 units
specifically treat paediatric patients.  Ipswich dialysis unit (and its associated satellite)
declined to take part in the audit on this occasion and another eight units (all satellites)
initially agreed to participate but for various reasons were unable or unwilling to administer
the survey.  Overall, therefore, responses are available for over 96 per cent of all dialysis
units.  This is comparable to the unit response rate achieved in previous surveys.

The overall patient response rate is estimated at 61 per cent, based on the number of
patients reported having regular haemodialysis outpatient treatment by units at the time of
the survey. However, not all units reported the exact number of patients receiving dialysis
on survey days, and for these units the denominator has been estimated using data from
reports made to the UK Renal Registry and the NHS Kidney Care Dialysis Capacity Survey.

Although the number of paediatric hospital‐based dialysis patients is small, the response
rate (81 per cent) is particularly high.

The variation in response rate by country, SCN and main unit is shown in appendices 4 and
5.  The highest number of responses (2,863 patients) was from London SCN whereas the
highest response rate (86 per cent) was from South East Coast area units.  The unit‐level
response rate ranged from 31 per cent (Hull) to 92 per cent (Royal Sussex County Hospital).
Findings for units with low response rate should be interpreted with caution.  This reduces
the number of questionnaires available for analysis, but also raises questions about
response bias and whether the patients that have responded are ‘typical’ of the whole
patient group.

19 | P a g e

Discussion points

 The findings of the audit are based on 11,190 patient responses from 246 of the
256 units known to provide haemodialysis in England, Wales and Northern
Ireland.  With such high participation rates the audit is likely to reflect the
national picture with respect to haemodialysis patient transport.

 Variation in the number of responses, and response rate, should be considered
when interpreting unit level results.

 An over‐representation of patients using hospital arranged transport compared
to patients using their own car or using public transport is suspected, but this
does not affect the major findings and conclusions of the audit.

6.2 Age of patients

The age profile of patients participating was similar to that in previous surveys.

People aged 24 or younger accounted for less than two per cent of respondents, whilst
older people aged 65 or more accounted for over half, showing the continued trend of end
stage kidney disease being more prevalent in this group. These findings are consistent with
those of the Renal Registry, which found the median age of prevalent haemodialysis
patients in the UK in 2010 was 65.5 years1, though comparison with registry data suggests
there was a relatively lower response rate in younger compared to older adults.

20 | P a g e

Figure 2 ‐ Age of respondents, 2012
<25 years
2%

25‐39 years
6%

80+ years
17%
40‐54 years
16%

55‐64 years
17%
65‐79 years
42%


Patients said

“I am very grateful for the patient transport.  I am on a low income, can’t drive, have
restricted mobility and dialyse early morning.  I will find it a real struggle to get to and
from dialysis without the patient hospital transport.”

“I have no choice but to use my own car to dialysis as I travel there from work four times a
week.  After dialysis I always feel awful and I suppose it’s really unsafe to drive myself but I
have no choice because transport only pick you up from home but I come from a place of
work.”

“I travel in my own car but employ a driver at a cost of £90 per week.  I simply feel too
exhausted to face a lengthy journey home in the hospital transport and I feel I have no
other option but to provide my own transportation.”

Background

Dialysis units should have medical criteria for deciding who is eligible for hospital arranged
transport, as it is expensive to deliver and often impractical to offer it to all patients
irrespective of need.
21 | P a g e

Patients were asked to give details of their mode of travel to and from dialysis, and this was
grouped into three categories: hospital arranged, public or private transport.  Hospital
arranged transport includes hospital transport and ambulance service vehicles as well as
cars or taxis arranged or provided by the hospital.  Private transport includes patients who
travelled in their own car, were brought in a car by family or friends, or arranged a taxi
themselves.  It also includes a small number of patients who walk to their dialysis sessions.

Data on mode of transport requires careful interpretation depending on local
circumstances.  On the one hand, low levels of use of hospital transport could indicate
empowerment and facilitation of patients to use alternative more convenient means (for
example by organising reimbursement of costs for those who travel privately).  On the other
hand, it could indicate over‐strict application of eligibility criteria and ‘rationing’ of hospital
arranged transport.  Units should have clear criteria for judging eligibility for hospital
arranged transport, and regularly audit their performance against these criteria.

Results

Just over 66 per cent of patients of all ages who responded to the survey use hospital
arranged transport to travel to dialysis. A further 29 per cent use private transport and five
per cent use public transport.  These proportions are almost identical to those found in the
2010 survey.  It should be noted that these figures only relate to the 61 per cent of all
patients who completed the survey and it is not known whether the non‐responders had a
similar pattern of transport use compared to the responders.

Figure 3 ‐ Mode of transport to travel to dialysis, 2012
Public
transport
5%
Private
transport
29%
Hospital
arranged
transport
66%

22 | P a g e

Almost all patients (95 per cent) used the same mode of transport to travel to and from
dialysis.  Most of the remainder used hospital arranged transport in one direction and
private transport in the other.

As might be expected, older patients tend to be more dependent on hospital arranged
transport (84 per cent of those aged 80 or more use hospital arranged transport, compared
to 56 per cent of those aged less than 65).

Appendix 6 shows variation by mode of transport by SCN; Yorkshire and the Humber
provide the highest rate of hospital arranged transport at 79 per cent, compared to London
which only provided 54 per cent.  However, in London 15 per cent of patients used public
transport.

As mentioned above, the unit level results (appendix 7) require careful interpretation in the
light of local knowledge regarding application of eligibility criteria.  There is wide variation in
mode of transport by unit with the proportion of patients using hospital arranged transport
ranging from 35 per cent (Southend) to over 90 per cent (Hull).

Reasons for not using private or public transport

For the first time in 2012, patients who used hospital arranged transport were asked to
indicate the reasons preventing them from using private or public transport.  The most
common reasons were inability to walk long distances, being unable to drive or not having
access to a car, or feeling too tired or unwell after dialysis.  Those ‘unable to drive’ include
patients who had their driving licences revoked for medical reasons.   Other reasons
included relatives being unable to provide transport due to other commitments or their own
health problems; fears for safety using public transport especially following late sessions;
and isolation with no social or support network.

However, a reasonably large proportion of patients also cited organisational reasons that
might be amenable to local change – the cost, lack of convenient public transport and lack
of nearby parking.

The detailed unit level reports, to be published separately, will include analysis of these
results and this will allow reflection on whether local action can be taken to empower more
patients to exercise choice over their mode of transport.

23 | P a g e

Figure 4 ‐ Reasons for using hospital arranged rather than private or public transport, 2012

% of hospital transported patients

70%
60%

54%

53%

51%

50%
40%
30%

25%

22%

20%
10%

5%

0%
Unable to walk Unable to drive or
long distances don't have a car

Too tired or
unwell after
dialysis

Too expensive

No convenient
public transport

Lack of nearby
parking

Discussion points

 Two thirds of patients who travel regularly for haemodialysis treatment do so
using hospital arranged transport. Older patients are more likely to rely on
hospital arranged transport, and there has been no change in the proportion
using hospital arranged transport between 2010 and 2012.

 By unit, there is more than three‐fold variation in the proportion of patients
using hospital arranged transport.  This requires careful interpretation in the
light of local knowledge regarding application of eligibility criteria.

 The most common reasons for being unable to use private or public transport
were related to ill health or immobility, or lack of access to a car.  However,
local units should investigate whether those reasons amenable to change
(including lack of parking) can be addressed.

24 | P a g e


Patients said

“I appreciate this free service offered to us, I feel lucky to have this provided.”

“Some patients get it free while I have to pay and it is irritating when the costs go up for
paying patients.”

“I estimate that travelling to dialysis costs me in excess of £2000 per year and some sort of
financial assistance towards independent travel would be of enormous help.”

Background

Hospital arranged transport, though the most expensive form of transport to provide, is
almost always free at the point of use.  The 2010 survey report suggested that units may
find it more cost effective to reimburse patients using other modes of transport if this leads
to a reduction in reliance on hospital arranged transport.  If patients have to pay for public
transport, for parking or for fuel, without the possibility of reimbursement, there is a clear
disincentive to using these forms of transport.

Patients were asked if they had to pay for their transport to dialysis; if they paid and then
claimed it back; or if they did not pay at all.   Moreover, patients were then asked if they had
been given the chance in the last six months to review whether or not they had to pay for
dialysis transport.

Results

Overall, 78 per cent of patients do not pay for their transport to and from dialysis; five per
cent pay and a further 17 per cent pay but then claim back the amount.  There is clear
variation in payment by transport type, with almost all users of hospital arranged transport
either not paying or claiming the cost back.  In comparison, 51 per cent of private transport
users and 42 per cent of public transport users have to pay for their travel costs.

25 | P a g e

Figure 5 ‐ Payment for transport by mode of transport, 2012
100%

98%

% of patients

80%
60%

58%
51%

49%

42%
40%
20%
2%
0%
Do not have to pay or pay then claim
back
Hospital arranged transport

Private transport

Have to pay
Public transport

Overall, only six per cent of patients said they had been given the chance to review whether
or not they have to pay for dialysis transport within the last six months. It might be
expected that the opportunity for review would be greater among those who currently pay
for their own transport, but only eight per cent of this group said they had been given the
chance for review.

Discussion points

 Units may find it more cost effective to reimburse patients using other modes of
transport if this leads to a reduction in reliance on hospital arranged transport.

 Overall 22 per cent of patients pay for their transport to and from dialysis, most
commonly people using public or private transport.

 Only six per cent of patients said they had been given the chance to review
whether or not they have to pay for dialysis transport within the last six months.

26 | P a g e


Patients said

“Up until March I was having to travel approx 40 miles each way to dialysis and back.  All
the travelling and constant changing of drivers was aggravating me condition.  Because of
how all the travelling was affecting me it was decided for health reasons to move me
closer.  Since then health, energy, mental well being have all improved.”

“My journey takes a longer time because the drivers do not take a direct route, this adds
on over 20 miles to my journey.  Something needs to be done about it.”

“The unit I attend is a satellite unit and patients come from a wide range of areas.  The
ambulance service seem to have no idea what patients live close to each other and they
put patients on the same transport who live in totally opposite directions.  This causes a lot
of distress as it means patients travel miles out of their way before getting home.”

Background

Patients usually wish to minimise the distance they travel to get to their dialysis unit,
although a small number may actively choose to dialyse on a unit further away from home
for specific reasons. Some patients who live in rural areas have long journeys despite having
dialysis in the unit closest to where they live.  The survey asked patients whether they were
dialysing in the unit of their choice, and how far away that unit is from where they travel
from.

Distances were estimated by asking the patients the postcode of the address they travelled
from and calculating the distance between that and the postcode of the unit in which they
were treated. Where patients did not know or were not willing to give their postcode, they
were asked to provide an estimate of the journey distance.

Results

Almost three quarters of patients had a journey distance to dialysis of up to ten miles.  A
small, but significant, proportion had a journey distance of over 20 miles.

27 | P a g e

In 2010 it was found that approximately 80 per cent of patients live within ten miles of their
dialysis unit.  However, the apparent reduction in this proportion may be due to different
methods and computer software packages used to calculate journey distance and should be
interpreted with caution.  Journey time, described in the following section, is likely to
provide a more consistent measure of change in the daily burden of travel.

Figure 6 ‐ Journey distance, 2012
21‐40 miles
7%

More than
40 miles
1%

11‐20 miles
18%
0‐5 miles
51%
6‐10 miles
23%

Appendix 8 shows variation by SCN; in London over 90 per cent of patients live within 10
miles of their dialysis unit compared to only 57 per cent in the South West.  This variation is
also reflected at unit level and, as might be expected, units situated in urban areas on the
whole have a greater proportion of patients living in close proximity (Appendix 9).

Patients were asked if they visited the dialysis unit of their choice, and if not, whether they
would prefer to dialyse in a unit closer to home.  Across the whole survey sample just over
six per cent said they were not having dialysis in their unit of choice, indicating that this is a
relatively small – although potentially very important ‐ issue.  This is the same proportion as
found in the previous survey in 2010.

Of those people not dialysing in their unit of choice, about two thirds said they would prefer
to have dialysis in a unit closer to where they live.  As might be expected, this varied by
journey distance with patients living furthest away being substantially more likely to say
they would prefer to dialyse closer to home.

28 | P a g e

Discussion points

 Patients usually wish to minimise the distance they travel to get to their dialysis
unit.  These data continue to provide reassurance that for the majority of
patients the distance travelled to get to their dialysis unit is less than 10 miles.

 Just over six per cent of survey respondents said they were not having dialysis in
their unit of choice, and about two thirds of these said they would prefer to
have dialysis in a unit closer to where they live.  This indicates that this is a
relatively small – although potentially very important – issue.


Patients said
“There are two wheelchair patients living in the opposite direction to me and the last thing
you want after dialysis is a tour of the area.  Also one patient lives on the first floor of a
block of flats and it usually takes 15‐20 minutes to get her home and it’s no fun sitting in
the cold draughty vehicle after already sitting 4 hours on the machine and sometimes up to
an hour waiting for transport.”

“My only complaint is when I have to travel so far to where I live in an ambulance, going up
over the hills to drop off other patients, sometimes I’m on board for two hours when my
journey should only take 45 minutes.”

“I have to travel in to dialysis with another patient who lives nowhere near me and is not
on the route to hospital.  This means that I spend up to two hours sitting in a very
uncomfortable vehicle.  I have a lower spine injury and this gets very uncomfortable and
painful.”

Background

Travelling time is important for patients, who usually have to make the journey to and from
the dialysis unit three times per week. The Renal Association haemodialysis guidelines
recommend that ‘Except in remote geographical areas the travel time to a haemodialysis
facility should be less than 30 minutes or a haemodialysis facility should be located within
29 | P a g e

25 miles of the patients’ home. In inner city areas travel times over short distances may
exceed 30 minutes at peak traffic flow periods during the day.’3

The 2010 transport audit recommended that ‘Dialysis units should continue to aspire to
journey times as short as possible and certainly less than 30 minutes for all patients. We
recognise that this cannot always be achieved. Minimising diversions to pick up other
patients for those with longer journeys should be encouraged, though there is a balance to
be struck with the cost and environmental impact of many vehicles doing similar journeys.’8

Travel time depends on the local geography and traffic conditions and these factors cannot
be influenced by dialysis units.  However, factors which can be influenced are the time when
dialysis commences and finishes (for example avoiding the rush hour), and, for those on
hospital arranged transport, ensuring that a direct route is travelled with minimisation of
dropping off and picking up other patients en route.

Results

Patients were asked how long their journey had taken on the day of the survey and on their
most recent journey home.  More than two thirds of the respondents to the survey had a
travelling time of 30 minutes or less, with no substantial change between 2008, 2010 and
2012.

Figure 7 ‐ Travel time to dialysis 2008, 2010 and 2012
% all patients with journey time <30 mins

100%
90%
80%
65.6%

68.2%

67.3%

2008

70%

2010

2012

60%
50%
40%
30%
20%
10%
0%

30 | P a g e

Figure 8 Travel time to dialysis by mode of transport, 2012
90%

84%

80%

% of patients

70%

62%

60%
50%
40%

42%

42%

32%

30%
20%
10%

17%

14%
7%

2%

0%
Hospital arranged
transport
Less than 30 mins

Private transport
30 to 60 mins

Public transport
Over 60 mins

Just over 39 per cent of hospital arranged transport users travelled for 30 minutes or more
compared with 16 per cent of patients who used private and 59 per cent public transport.
Almost one in five patients who used public transport had a journey time to dialysis of more
than one hour.

Appendix 8 shows variation by SCN; the proportion of patients with travel time less than 30
minutes ranges from 59 per cent (South East Coast) to 79 per cent (Yorkshire and the
Humber).  The table also demonstrates the importance of local geography as, for example,
within London SCN a high proportion of patients live within ten miles of their dialysis units
but the proportion with travel times under 30 minutes is much lower.  This is undoubtedly
due to traffic congestion en route to the unit.  The variation at unit level (shown in appendix
9) is even wider and unit staff are best placed to assess whether their findings are
acceptable after taking local knowledge on transport networks and geographical factors into
account.

31 | P a g e

Discussion points

 Travelling time is important for patients and, except due to local geographical
circumstances, it is recommended that travel time to a haemodialysis unit
should be less than 30 minutes.

 In 2012, 67 per cent of patients had a travel time of less than 30 minutes.
Overall, there has been no substantial change compared to previous surveys.

important changes in individual centres, both improvements and deterioration,
and the local reports will illustrate this important detailed information.

 Patients using public transport have longer travel times compared to patients
using private or hospital arranged transport.  One in five patients using public
transport travel for more than one hour to reach their dialysis unit.

 There is wide variation in travel time by unit and this emphasises the
importance of taking local knowledge into account when setting and measuring
targets.  However, while a journey time of less than 30 minutes may be difficult
to achieve in congested or sparsely populated areas, it is an aspiration worth
pursuing as it makes a difference to the quality of life for patients.

 Patient comments illustrate the frustration of making multiple detours in what
would otherwise be a quick and straightforward journey to and from home. A
straightforward way of reducing transit time for hospital arranged transport
patients is to minimise diversions to collect or drop off other patients where
possible, ensuring journeys are more direct.

32 | P a g e


Patients said

“There is too much waiting for transport to arrive, delay in pick up is the biggest problem
as unable to start dialysis on time.”

“Having a two hour appointment window is too long, you have to be ready early in case
transport call early.”

Background

For most patients, dialysis treatment itself lasts four hours or more, and takes place for the
majority of patients three times a week. Both before and after dialysis, patients would like
to be collected and to arrive on time, with minimal waiting either for transport or to
commence dialysis once they have arrived. Being collected from home too early is also a
problem for some patients ‐ if this occurs regularly, patients have to be ready and prepared
to leave home before their scheduled time, further affecting quality of life.

Though the uncertainties of road conditions make it difficult for transport providers to be
absolutely punctual at all times, a 30 minute window of waiting time is thought to be a
reasonable standard for transport providers and dialysis units to work to.  The Renal
Association haemodialysis guidelines recommend that ‘Haemodialysis patients who require
transport should be collected from home within 30 minutes of the allotted time.’3

Survey participants using hospital arranged transport were asked whether they were picked
up from home at the appointed time (and if not how early or late), and also if they had a
specific pick up time or an appointment ‘window’.

Results

Overall in 2012, over 81 per cent of patients using hospital arranged transport were
collected within 30 minutes of their scheduled pick up time.  This is a substantial
improvement from 76 per cent in 2010 and 75 per cent in 2008.

33 | P a g e

Figure 9 ‐ Waiting time for pick up for journey to dialysis for patients travelling by hospital
arranged transport 2008, 2010 and 2012

% waiting time for pick up <30 mins

100%
90%

81.4%
75.0%

76.0%

2008

80%

2010

70%
60%
50%
40%
30%
20%
10%
0%
2012

However, 12 per cent of hospital arranged transport patients were collected more than 30
minutes before their assigned collection time from home (four per cent were picked up
more than 60 minutes early).  In addition, seven per cent of patients using hospital arranged
transport were collected more than 30 minutes after the assigned time (two per cent were
collected more than 60 minutes late).

Figure 10 ‐ Waiting time for pick up for journey to dialysis for patients travelling by
hospital arranged transport, 2012

57%

60%

% waiting time for pickup

50%
40%
30%
20%
10%

15%
4%

8%

9%
5%

2%

0%
Over 1 hour 30 to 60 mins 10 to 30 mins Within 10
early
early
early
mins of time

10 to 30 mins 30 to 60 mins Over 1 hour
late
late
late

34 | P a g e

About one third of patients stated that they had an appointment window rather than a
specific pick up time.  For most of these the pick up window was less than one hour.
However, for about one in eight of these patients the pick up window was two hours or
more, which could cause significant inconvenience to the patient.

Appendix 10 shows variation in achievement of collection within 30 minutes of the
appointed time by SCN; in Yorkshire and The Humber over 90 per cent of patients were
picked up within 30 minutes compared to only 69 per cent in the East Midlands.  This
variation is even wider at unit level (appendix 11) ranging from Russells Hall where 48 per
cent of patients were picked up within 30 minutes, to Colchester which achieved 100 per
cent of collections on time.

Discussion points

 It is recommended that patients using hospital arranged transport are collected
within 30 minutes of their scheduled pick up time.

 Overall in 2012, over 81 per cent of patients using hospital arranged transport were
collected within 30 minutes – a substantial improvement since 2010.

 About one third of patients stated that they had an appointment window rather
than a specific pick up time and for about one in eight of these patients the pick up
window was two hours or more, which could cause significant inconvenience to the
patient.

important changes in individual centres, so units should look their own local reports
for this and other waiting time indicators included in the survey.



35 | P a g e


Patients said

“Transport mainly comes too early to get to the renal unit for my appointment. Being early
doesn’t necessarily mean you get on the machine earlier.  I would sooner be at home for
over an hour than sitting on a hospital bed.  It’s bad enough being stuck on the bed for 4
hours not being able to move for 3 days a week, I don’t want to spend longer in hospital
than I have to.”

“My transport picks me up an hour and a half before my dialysis treatment.  I live 3 miles
away and I have to sit around at the hospital for the remaining time until my dialysis
treatment begins.”

Background

The Renal Association haemodialysis guidelines recommend that ‘Haemodialysis patients
who require transport should not have to wait more than 30 minutes after they arrive at the
dialysis unit to commence their treatment.’3

Survey participants using hospital arranged transport were asked, once they arrived at the
unit, how long they had to wait before the start of their dialysis session.

Results

Overall in 2012, over 77 per cent of patients using hospital arranged transport commenced
dialysis within 30 minutes of arrival on the unit; an improvement from 75 per cent in 2010
and 73 per cent in 2008.

36 | P a g e

Figure 11 ‐ Waiting time for start of dialysis session for patients travelling by hospital
arranged transport 2008, 2010 and 2012

100%
90%

% wait to start dialysis <30 mins

73.0%

75.0%

77.5%

2008

80%

2010

2012

70%
60%
50%
40%
30%
20%
10%
0%

However, as shown in the figure below, five per cent of patients waited more than one hour
to commence dialysis and a further 18 per cent waited between 30 and 60 minutes.

Figure 12 ‐ Waiting time for start of dialysis session for patients travelling by hospital
arranged transport, 2012

More than one
hour
5%

30 to 60 mins
18%

Less than 10
mins
28%

10 to 30 mins
49%

Appendices 10 and 11 show that there is large variation in time between arrival at the unit
and commencement of dialysis by SCN and unit.  In some units all, or almost all, patients
commenced dialysis within 30 minutes.  However, in other units only about half of patients
were able to commence dialysis within this time frame.

37 | P a g e

Discussion points

 It is recommended that patients using hospital arranged transport commence
dialysis within 30 minutes of arrival at the unit.

 Overall in 2012, over 77 per cent of patients using hospital arranged transport
commenced dialysis within 30 minutes of arrival on the unit; an improvement since
2010.




Patients said

“For the return journey there can be people waiting to go back to the same area but all are
not picked up, waiting for a full car load of people or being forgotten about completely are
usually the main problems.  When patients come off dialysis they are tired and just want to
get back to their own homes with their own comforts and not wait on other patients to
have a full car.”

“There is one driver who will not wait after 6pm and I have to adjust my dialysis time
accordingly.”

Background

The Renal Association haemodialysis guidelines recommend that ‘Haemodialysis patients
who require transport should be collected to return home within 30 minutes of finishing
dialysis.’3
Survey participants using hospital arranged transport were asked, once they had finished
dialysis and were ready to leave, how long they had to wait before they actually left the
dialysis unit.  Also, two additional questions were asked to address concerns raised by
patients during the planning of the survey.  Firstly, if they were not ready at the normal time
for their journey home but were likely to be so within 30 minutes, would the driver wait for
them to be ready or leave without them.  Secondly, patients were asked whether transport

38 | P a g e

arrangements had ever affected the length of their dialysis sessions; for example having to
reduce dialysis time because of transport problems.

Results

Overall in 2012, almost 65 per cent of patients using hospital arranged transport
commenced their journey home within 30 minutes of being ready.  This is similar to the
proportions in 2010 (66 per cent) and 2008 (63 per cent).

Figure 13 Waiting time to leave unit for patients travelling by hospital arranged transport
2008, 2010 and 2012

100%
90%
% wait to leave <30 mins

80%
70%

63.0%

66.0%

64.7%

2010

2012

60%
50%
40%
30%
20%
10%
0%
2008

However, as shown in figure 14, 36 per cent of patients using hospital arranged transport
waited for more than 30 minutes after they were ready to commence their journey home;
including 12 per cent who had to wait more than one hour to leave.

39 | P a g e

Figure 14 ‐ Waiting time to leave unit for patients travelling by hospital arranged
transport, 2012

More than 2
hours
2%
1 to 2
hours
10%

Less than 10
mins
23%

30 to 60 mins
24%

10 to 30 mins
41%

Appendices 10 and 11 show that there is large variation in the time patients wait to
commence their journey home, with some units showing much room for improvement.  In
other units (including Plymouth, Sunderland and Doncaster) all or almost all patients
departed within 30 minutes.

During planning of the survey, patients raised concerns about the stress caused by
potentially missing transport home if the end of their dialysis session was delayed.  Patients
who used hospital transport for their journey home were asked if they were not ready at
the normal time for their journey home but were likely to be so within 30 minutes, would
the driver wait for them to be ready or leave without them.  Most (81 per cent) said the
driver would wait but a significant number (19 per cent) said the driver would leave without
them.

A total of 16 per cent of patients using hospital arranged transport also said that transport
arrangements had affected the length of their dialysis sessions in the past (for example
having to reduce dialysis time because of transport problems).  This compares to 15 per cent
of patients who use public transport and only four per cent of private transport users.
However, for most people such impact appears to be relatively infrequent (median of three
occasions over the previous three months).

40 | P a g e

Discussion points

 It is recommended that patients using hospital arranged transport should be
collected to return home within 30 minutes of finishing dialysis.

 In 2012 almost 65 per cent of patients using hospital arranged transport
commenced their journey home within 30 minutes of being ready, similar to the
proportions in 2010 and 2008.  However, 12 per cent waited for more than one
hour to leave.

 Around 16 per cent of patients using hospital arranged transport say that transport
arrangements have affected the length of their dialysis session, but this happens
relatively infrequently.




Patients said
“Our taxi drivers are kind, considerate and helpful and having a regular driver is nice – you
build up a relationship with them and fellow travellers and give each other mutual support
and friendship at a difficult time in your life.”

“The transport services are excellent, the drivers are professional, competent and very
friendly and they really understand the problems and needs of the patients.”

“Hospital transport is a great help ensuring attendance to the hospital regularly.  Without
it, life may have lost its meaning.  This singular service has I believe saved lives for many ….
it’s most helpful to lonely patients or those who live alone in their respective apartments a
long way away from the various hospitals.”

Background

Questions regarding satisfaction with transport arrangements were included in the 2008
and 2010 surveys, and high levels of satisfaction with many aspects were found. Comments
made by patients suggest that the attitude and care shown by drivers and other staff are at

41 | P a g e

least as important as how long the travel process takes in determining how they respond to
questions about satisfaction.

In common with previous surveys, in 2012 all patients were asked to rate their overall
general satisfaction with their current transport arrangements.  In addition, patients using
hospital arranged transport were then asked to rate their level of satisfaction with various
specific aspects of the service (including, for example, cleanliness, comfort and friendliness
of staff).

Results

Overall in 2012, just under 90 per cent of respondents said that their current transport
arrangements met their needs either all or most of the time.  Figure 15 shows that there has
been a small improvement in overall satisfaction levels with each consecutive survey.

Figure 15 ‐ Patient satisfaction: needs met all or most of the time 2008, 2010 and 2012
100%
Transport meets needs all or most of the time

86.5%

87.4%

89.5%

2008

90%

2010

2012

80%
70%
60%
50%
40%
30%
20%
10%
0%

However, satisfaction levels vary substantially by mode of transport.  Only two per cent of
users of hospital arranged transport said their needs were not met, compared to 12 per cent
of users of public transport.

42 | P a g e

Figure 16 ‐ Patient satisfaction: needs met all or most of the time by mode of transport,
2012
100%
90%
80%

89%

94%

72%

% of patients

70%
60%
50%
40%
30%
16%

20%

12%

9%

10%

3%

2%

2%

0%
Needs met all/most of the Needs met some of the
time
time
Hospital arranged transport

Private transport

Needs not met
Public transport

Appendix 12 shows variation by in overall satisfaction by SCN; levels were generally high in
all areas, and highest in Yorkshire and the Humber, where over 94 per cent of patients said
their transport needs were met all or most of the time.  More variation is seen at unit level
(appendix 13) and in many cases satisfaction was either at, or approaching, 100 per cent.
Even in the unit with the lowest satisfaction rating (Nottingham) over 78 per cent of patients
said their needs were met all or most of the time.

Patients who used hospital arranged transport were additionally asked to rate their
satisfaction with various aspects of the service they received on a five point scale (very
happy, happy, neutral, unhappy, very unhappy). Figure 17 shows that patients were largely
happy or very happy with all aspects of the service in the majority of dimensions mentioned,
though far less so with punctuality and with the number of additional patients collected or
dropped off by their vehicle.   Around 90 per cent of patients were happy or very happy with
friendliness of staff and staff understanding of their needs, and this was reflected by free
text comments made by many people expressing the high value they place on this aspect of
the service.

43 | P a g e

Figure 17 ‐ Patient satisfaction (happy or very happy) with hospital arranged transport,
2012

100%

91%

90%

89%

88%

86%
80%

% happy/very happy

80%

78%
71%

70%

62%

60%
50%
40%
30%
20%
10%
0%
Friendliness of
Staff
Cleanliness
staff
understanding
of needs

Ease of acess

Cost

Comfort

Number of
patients
picked up

Punctuality

Discussion points

 Just under 90 per cent of respondents said that their current transport
arrangements met their needs either all or most of the time.  There have been
small improvements in overall satisfaction levels with each consecutive survey.

 Patients travelling by public transport express much lower levels of satisfaction
than patients travelling by hospital arranged or private transport.

 Users of hospital arranged transport were particularly happy with friendliness of
staff and staff understanding of their needs, though far less so with punctuality
and with the number of additional patients collected or dropped off by their
vehicle.

 As with other aspects of this audit, the real value will be on reflection and
interpretation of findings, both positive and those which show room for
improvement, by local centres.  The detailed unit level reports, published
separately, will allow such consideration.

44 | P a g e


Each dialysis unit received a unit manager’s questionnaire, which was completed and
returned by 202 of the known 256 units, a response rate of 79 per cent. This is similar to the
response rate achieved for the comparable unit manager survey in 2010.

The topics in the survey included eligibility criteria and patient payment support,
arrangements for review of patient’s transport needs, management of transport contracts
and quality monitoring.

Not all of the unit managers responded to each of the questions. The proportions presented
in the tables in this section represent the proportions of the total number of responses for
each question, excluding missing data.  In all cases unless otherwise stated the proportion of
missing values for each question was within acceptable limits (less than 5 per cent).

7.1 Eligibility criteria and patient payment support

As shown in table 1, almost all units said that all users of non‐emergency renal patient
transport services travel for free.  Over two thirds of units indicated that there are published
criteria for providing free and appropriate transport for renal patients; however fewer units
indicated that there are published criteria for providing free and appropriate transport for
escorts or carers. More than one in five units indicated that there are no clear arrangements
for dealing with appeals and complaints about decisions on whether to provide free
transport and a similar number did not know whether such arrangements exist.

Many units (61 per cent) have published criteria for providing reimbursed transport for
renal patients; fewer have published criteria for providing reimbursed transport for escorts
or carers.  However, many unit managers didn’t know if there were published criteria
available or not. About 40 per cent of units had clear arrangements for dealing with appeals
about decisions on the provision of reimbursed transport; however two thirds did not know
if there were arrangements in place.

Although a high proportion of units reported that there was free reliable parking close to
the unit, this still means that such a facility is not available in one out of five units.

45 | P a g e

Table 1 Eligibility criteria and patient payment support


Yes

No

Don't
know

Users of non‐emergency renal patient transport services
travel for free
Published criteria for providing free and appropriate
transport for renal patients
Published criteria for providing free and appropriate
transport for escorts/carers
Clear arrangements for dealing with appeals & complaints
about decisions on providing free transport
Published criteria for providing reimbursed transport for
renal patients
Published criteria for providing reimbursed transport for
escorts/carers
Clear arrangements for dealing with appeals & complaints
about decisions on providing reimbursed transport
Patients/carers can reliably park for free close to the
haemodialysis unit if they wish to

94%

4%

2%

68%

24%

8%

42%

32%

26%

59%

22%

19%

61%

25%

13%

29%

40%

31%

40%

24%

36%

80%

19%

1%

7.2 Review of patient transport arrangements

Table 2 shows that nearly two thirds of unit managers reported that there is a regular
review of each patient’s transport service needs at least every 12 months, although many
units do not undertake a regular review. Fewer reviews of eligibility for free transport and
reimbursed transport take place.

Separate assessment of transport service needs for the journey to the unit, and the journey
home following dialysis, is a concern that has been raised by patients and just over a half of
unit managers indicated that they were assessed separately within their unit.

46 | P a g e

Table 2 Review of patient transport arrangements


Regular review of each patient’s
transport service needs
Each patient’s eligibility for free
transport reviewed regularly
Each patient’s eligibility for reimbursed
transport reviewed regularly

Yes
Yes
Yes
approx approx approx
every every every
3 m
6 m
12 m
48%
14%
7%

No

Don't
know

23%

8%

27%

10%

10%

39%

14%

14%

6%

9%

42%

29%

7.3 Charging for hospital arranged transport

Around a quarter of units have a policy on charging, and roughly the same proportion report
that the Healthcare Travel Costs Scheme (HTCS)
(www.nhs.uk/nhsengland/Healthcosts/pages/Travelcosts.aspx) is widely publicised to
patients. A lower proportion state that the HTCS covers arrangements for reimbursement.
For these questions, in addition to those who answered ‘don’t know’, almost three quarters
of respondents left the question blank.  This suggests that awareness of charging
arrangements is generally poor, even in staff involved in this area.

Table 3 Charging for hospital arranged transport


Yes

No

Don't
know

Clear policy on charging

22%

37%

41%

Healthcare Travel Costs Scheme is widely publicised to
patients
Charging arrangements cover patients entitled to
reimbursement through the Healthcare Travel Costs
Scheme

23%

42%

35%

17%

17%

65%

47 | P a g e

7.4 Commissioning and contracting arrangements

Over half of unit managers reported that funding for renal transport is clearly identified,
with roughly the same proportion indicating that there is a separate contract in place for
renal transport. A similar proportion of unit managers reported having detailed
specifications for renal transport service levels included in the contract.  However, just
under one in three of the units indicated that there were patients involved in defining the
required service levels for renal transport. Around half of units have a single renal transport
coordinator in place.  A lead negotiator was identified for taxi contracts and volunteer
drivers in many units, although over a third didn’t know if there was a lead in place. Nearly
two thirds of unit managers did not know if taxi and volunteer drivers received formal
training to enable them to show an awareness of patient needs and dignity.

In response to the questions on equity of provision of appointment times in relation to
transport, about two thirds of the unit managers indicated there were no limitations on
appointment times due to transport provision.  In the last year, one third of unit managers
said limitations in transport provision meant that patients had not been offered a complete
choice of dialysis place and time. A similar proportion said that all dialysis appointment
times were not accessible to all patients regardless of where they lived or how they are
transported

Table 4 ‐ Unit manager responses to questions about contract arrangements

Yes
No Don't
know
Funding for renal transport is clearly identified
56% 23% 21%
A separate contract is in place for renal transport

58%

22%

20%

There is a detailed specification for renal transport defining the
required service levels to support the contract
Patients are involved in defining the required service levels for
renal transport
There is a single renal transport co‐ordinator or bureau in place

56%

12%

32%

30%

36%

34%

49%

43%

8%

There is a lead negotiator identified for taxi contracts and
volunteer drivers
Taxi and volunteer drivers receive formal training to enable them
to show an awareness of patient needs and dignity
In the last year, limitations in transport provision mean patients
have not been offered a complete choice of dialysis place & time
All dialysis appointment days & times accessible to all patients
regardless of where they live or how they are transported

41%

24%

34%

24%

14%

62%

32%

62%

6%

65%

34%

1%

48 | P a g e

7.5 Monitoring contracts for renal patient transport

The majority of units indicated that there were regular contract monitoring meetings with
the transport providers, and most unit managers reported that they captured patient views
as part of the monitoring of service quality. About one third of units reported that they
published transport performance as part of their monitoring of service quality.

Just over half of unit managers indicated that they do not receive notification of the
numbers and/or details of aborted journeys undertaken by the patient transport service
provider.

Table 5 ‐ Unit manager responses to questions relating to monitoring as part of contract
arrangements

Yes
Yes
Yes
No
Don't
approx approx approx
know
every every every
3 mths 6 mths
12
mths
Regular contract monitoring meetings
39%
14%
10%
21%
17%
held with the transport provider
Patients’ views captured regularly as
27%
13%
28%
20%
12%
part of the monitoring of service quality?
Transport performance published as
15%
5%
15%
41%
25%
part of the monitoring of service quality

7.6 Impact of transport on clinical care

To address concerns raised by patients during the planning of the survey regarding the
impact of transport on clinical care, unit managers were asked whether, in the last year,
transport arrangements had dictated the length of the dialysis session that they were able
to offer a patient.  One in five unit managers (19 per cent) said that in the last year,
transport arrangements had dictated the length of the dialysis session either often or very
often, and a further 46 per cent said this happened ‘sometimes’.

49 | P a g e

Kidney patient transport audit 2012

Kidney patient transport audit 2012

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