Provision of Specialist Liver Services in England
Roger Williams, CBE, MD, FRCP, FRCS, FRCPE, FRACP, FACP (Hon)
Director, the Institute of Hepatology, University College London
Key Words:
Staffing: Consultant Hepatologists: Specialist Nurses; Dedicated clinics; Radiology;
Support facilities, Liver Transplants
Word Count: 3,384
Correspondence:
Professor Roger Williams, CBE
Director, the Institute of Hepatology
69 – 75 Chenies Mews
London, WC1E 6HX
Tel: 020 7679 6510
Fax: 020 7380 0405
Email: roger.williams@ucl.ac.uk
The survey was carried out under the auspices of
the Foundation for Liver Research and the British Liver Trust
Acknowledgements:
The tireless work of Ms Anne Gilbert with the questionnaire is gratefully
acknowledged, as is an educational grant from Schering Plough Ltd
Abstract:
Information on the current provision of specialist liver services in England – of major
importance in the setting up of commissioning contracts – was obtained by a
questionnaire survey. Thirty four liver centres were identified, including 6 centres for
liver transplantation, and 49 other hospitals where some services were provided.
Substantial deficiencies in staffing levels were recorded, particularly in consultant
hepatologist posts and in specialist nurses. More specialist services for outpatients and
more clinics to bring down long waiting times were needed. The provision of alcohol
services was poor and radiological facilities were the commonest identified bottleneck
in support services. Transplant centres had greatly superior staffing and facilities and
carried out a substantial amount of non-transplant work. The setting up of additional
centres would add greatly to the overall provision of specialist liver care in the country
and recognition of hepatology as a distinct specialty is essential if the considerably
increased burden of liver disease predicted for the next 20 years is to be met.
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The commissioning of specialised hospital services has, over the years, been the subject
of repeated reorganisation [1].
Initially based on the Regional Health Authorities
(“Regional Specialties”), their organisation in the early 1990’s was transferred to the
then newly established District Health Authorities. In 1997, following a number of
critical reports, responsibility was given back to the regions with the establishment of
Regional Specialty Commissioning Groups (RSCGs). More recently, with the NHS
Plan of 2001, the responsibility for commissioning was passed to the Primary Care
Trusts (PCTs) with a performance management role being given to the Strategic Health
Authorities. Commissioning was to be based on the ‘Definition Set’ for hepatology
drawn up by the RSCGs (Department of Health website, 2002). Set No.19 (adult)
picked out the following areas as requiring specialised facilities and expertise:- complex
hepatobiliary disorders; liver tumours; complications of cirrhosis; and viral hepatitis.
However the funding of such specialised services within the new national tariff system
based on Health Resource Groups (HRG’s) is still to be decided as are systems for the
accreditation of such services. In the recent report of the main professional bodies in
Hepatology, entitled: “National Plan for Liver Services UK” [2] it is envisaged that
some 10-15 hospital centres will provide specialised services through a series of
managed clinical networks. The necessity for an even distribution around the country is
emphasized. New arrangements will have in addition to take into account the existence
of the separate, NSCAG-funded, centres for liver transplantation of which there are 6 in
England and where because of the requirements of transplant patients, investigatory
facilities and staffing have to-date been largely concentrated.
The aim of the present Survey was to determine the staffing and facilities for hepatology
patients currently in place through the country.
3
Scotland and Wales which have
different administrative arrangements for specialised services were excluded from the
survey.
DESIGN AND RESULTS OF SURVEY:
Members of the British Association for the Study of the Liver and of the Liver Section
of the British Society of Gastroenterology, who would be expected to have a
predominant interest in hepatology, were initially contacted to identify some 83
hospitals where hepatology services were provided. Of these, 34 answered ‘yes’ to the
question, ‘Do you run a Hepatology Centre?’ and this report is largely based on the
information provided by these hospitals. Included in them are the 6 centres where liver
transplantation is carried out, namely the Queen Elizabeth Hospital, Birmingham;
King’s College Hospital and the Royal Free Hospital in London; Addenbrooke’s
Hospital, Cambridge; Royal Victoria Infirmary, Newcastle and St. James's Hospital,
Leeds (paediatric programmes were excluded). The remaining 49 hospitals reported a
more limited provision of hepatology services. The questionnaire comprised sections
on the population and PCTs served by the centre, the current levels of staffing with
consultants, junior staff and nurse specialists, and the availability of specialised support
facilities. There were also questions on what were considered to have been successful
developments during the past few years and what were considered currently to be the
major bottlenecks in providing an adequate service.
1.
Location and PCTs/population served
The distribution of the 34 centres around England is shown in Figure 1. Although most
major cities have a liver centre either in a university hospital or a large DGH, these are
not evenly distributed in terms of population size or the number of PCTs served. This
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also applies to facilities for liver transplantation, with the Northwest region, including
the large urban conurbations of Manchester and Liverpool, and the Southwest Peninsula
extending up as far as the Midlands, notably lacking a unit. The median number of
PCTs served by the 28 non-transplant centres is 6, with a range of 1-14. There is also a
wide range for the draining populations recorded, with 6 at more than 1 million,
including two with 4 and 7million. The remaining 22 centres serve between 170800,000 people with a median of 400,000. Each of the 6 transplant centres noted
referrals from all over the country, receiving patients from more than 50 PCTs (highest
300) and with estimated draining populations of 3.5 - 9million. Breakdown of work
load at the transplant centres, showed that substantial numbers of non-transplant cases
were seen by them amounting to an estimated 30-65% of their total referrals. The nontransplant centres recorded an average of around 50% of their patients coming from the
surrounding region and 50% locally generated.
Three of the largest centres –
Southampton, Sheffield and Manchester – emphasized the lack of funding for the
transplant cases referred back to them after transplantation despite the large amount of
work generated by their continuing care.
2.
Staffing
Twelve of the 28 non-transplant centres did not have a designated consultant
hepatologist (Table 1). Of the other 16 centres, 15 had up to 3 hepatology consultants
and 1 more than 3. The majority of consultant staff working in these units were
gastroenterologists (24 compared with 16 hepatologists) and in 11 units, general
physicians also shared the workload. Quite a different picture was seen in the transplant
centres with all 6 having more than 1 hepatologist and 3 with more than 3, along with
fewer consultants in gastroenterology and general medicine. In contrast, of the 49
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hospitals providing limited hepatology services, only 2 had designated hepatologists and
in 47 the workload was managed by gastroenterologists with additional help from
general physicians in 26.
There was at least one Specialist Registrar, with one
exception, in each of the non-transplant centres (Table 1). Just over a half had 1-3 or >3
posts and these numbers were reported by all the transplant centres. As to SHOs, all
except 4 of the non-transplant units had a post with the majority having 1-3 and 4
having >3. Few staff grade positions were in place. With respect to specialist nurses, 5
of the 28 non-transplant units were without such a post for hepatitis. The remaining 23
had between 1-3 posts. The transplant centres were the only units having >3 posts. Few
specialist nurses for alcohol related disorders were in post; 20 centres had no such post
and neither did 3 of the 6 transplant units. The provision of specialist nurses was even
less at the 49 hospitals providing limited services, with hepatitis and alcohol nurses in
only 10 and 2 respectively.
In the answers given to questions on the adequacy of provision of medical staffing, only
10 of the 28 non-transplant and 3 of the 6 transplant centres recorded this as adequate or
excellent. For specialist hepatitis nurses, the corresponding figures were 5 and 1 for the
non-transplant and transplant centres respectively.
3.
Provision of inpatient beds and outpatient clinics
Lack of dedicated hepatology beds was one of the most frequent answers given to the
question on the major limitation to the development of the service. Only 12 of the 28
centres recorded bed allocations as adequate with 4 of the transplant and 20 of the nontransplant centres describing provision as limited. Over half of the 28 non-transplant
units had no designated beds. The remainder had between 6-30 beds with 2 transplant
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and 1 non-transplant centre having a larger number (Table 2).
An even smaller
percentage of the hospitals providing limited services had designated beds:- 16 of the
49.
In answer to the question whether the present number of outpatient clinics adequately
served the population, 21 (17 non-transplant and 4 transplant) replied “no”. Thirteen of
the non-transplant units were holding only 1-2 clinics a week (Table 2) and the waiting
time for a routine appointment was >20 weeks in 3 centres, and >10 weeks for 14
centres. For urgent appointments, 11 of the centres were able to see a patient within 1-2
weeks and 16 within 5 weeks, 3 centres having much longer waiting times (Table 2).
For the hospitals providing limited services, the majority (30 of 49) had waiting times of
10-20 weeks for non urgent cases.
4.
Wish-list for improved service
The commonest request was for additional staff, mainly specialist nurses in the liver
centres and consultant hepatologists in the centres currently providing a limited
provision of services. The need for more consultants in hepatobiliary surgery was
specifically mentioned. Some specialist outpatient clinics had been set up including
one-stop
investigation
of
jaundice
and
nurse-led
venesection
clinics
for
haemochromatosis patients but the number of centres with them was small – 3 only of
the 34 liver centres. The need for more specialist clinics for alcohol related disorders
also figured prominently on the wish-list. Similarly for HCV services only a few centres
had outreach clinics in the community and in prisons - 3 of 34 liver centres and 7 of 49
providing limited services, and a number of hospitals in both groups expressed
continued difficulty in the funding of HCV services (Table 3).
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In answer to a question on ‘bottlenecks’ (data not tabulated) 18 of 34 liver centres
considered that the number of outpatient clinics was inadequate for the needs of the
local population with less than a third expressing satisfaction with the current
arrangements and current waiting times for appointments. Of the 49 limited providers,
29 felt the number of clinics did not adequately serve their population, 17 did and 3 did
not comment.
Although pathology services were described as excellent/adequate by the majority of
centres, radiology facilities were recorded as limited in a quarter of the centres as well
as in 2 transplant centres. This is in keeping with replies to the wish-list question for
improving services, which included better radiological services and specific mention of
the need for TIPSS, ultrasound guided liver biopsies and other procedures carried out by
radiologists (Table 3).
The majority of the liver centres recorded good links with the HDU/ITU (21 of 34 and
26 of 49 centres respectively) and a need for more ITU beds figured only on the wishlist of the liver transplant centres. The majority of the liver centres as well as the
limited providers had integrated links with oncology services - 24 and 31 respectively.
The successful development of links with Hepatobiliary services was mentioned by only
5 units. A number of the centres particularly the limited providers, commented on the
need for better links with the transplant centres. Amongst the administrative issues
raised (data not tabulated), the commonest were funding provision for referred cases
and difficulties arising because of the lack of recognition of Hepatology as a clinical
specialty.
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DISCUSSION:
Mortality from liver disease is increasing in the UK. In the year 2000 it killed more
men than Parkinson’s disease and more women than cancer of the cervix. Death rates
from alcoholic liver disease have doubled in the past 10 years and as pointed out by the
CMO in his Report for 2000, men in the 40-60yrs working age group are mainly
affected. Because of the long natural history of hepatitis C infections, the number of
cases of chronic liver disease from this cause is expected to treble by 2020. Only
43,000 out of an estimated total number of 720,000 cases of HCV infection in the UK,
are as yet diagnosed. Around 6,000 persons with hepatitis B positivity are estimated to
be coming into the country each year through legal immigration alone and there is likely
to be a similar number who are HCV positive. Consequent on the rise in cirrhosis
prevalence, primary hepatocellular cancer is also increasing in frequency, as is that of
the other primary liver tumour - cholangiocarcinoma. Fifty percent of the 30,000 cases
with colo-rectal carcinoma seen each year, will have liver metastases, one fifth of whom
would be suitable for resectional surgery. Steato-hepatitis as a result of rising levels of
obesity and diabetes in the population is being referred to in the USA as the ‘new
epidemic of cirrhosis’.
Advances in therapy are nevertheless encouraging.
Thus
antiviral therapy is successful in a substantial percentage of cases of chronic HCV and
HBV infection. Complications of cirrhosis are better treated and more effective forms
of liver support devices are currently under clinical trial. On the horizon are exciting
developments in the transplantation of isolated hepatocytes for genetic disorders.
But are there the expert staff and facilities in place to manage all this? The liver
surgeons required for the hepatic resections already referred to - are few in number, as
are oncologists specialising in liver tumours. And where too are the trained consultant
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hepatologists, along with the virologists, needed for the ever expanding load of chronic
HCV and HBV infections? In the survey report entitled “Hepatitis C in the UK: A
review of prevalence and service delivery” [3] only 40% of the consultants provided a
fully comprehensive service and even amongst the latter group, a quarter did not have
access to in-house liver histopathology and 29% were without nurse counselling
services.
The results of the present survey show all too clearly that very few of the 28 nontransplant liver centres identified in England are currently providing a full range of liver
services. Deficiencies in staffing at all levels are staggering. Nearly a third of the
centres do not have a single consultant hepatologist in post.
A surprising number do
not have even one specialist hepatitis nurse and the provision of specialist staff for
alcohol related disorders is dismally low. The failure to provide dedicated liver beds for
hepatology services and insufficient outpatient clinics, with unacceptable waiting times
for appointments contribute to major limitations in service provision. The lack of
sufficient expansion in the support departments – particularly in radiology - is a further
limitation. The apparent paucity of links with hepatobiliary services merits comment in
the light of the emphasis placed on combined development of specialised liver and
hepatobiliary services in the document “National Plan for Liver Services UK” [2]
already referred to.
The question then has to be addressed as to how staffing levels and expertise are to be
improved with all the current manpower shortages in the NHS. SpRs in
gastroenterology currently have only a limited exposure to hepatology training and
because of this the SAC recommended the introduction of an additional 6th year for
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those wanting to specialise in this area. Unfortunately this was not acceptable to
government/ Department of Health and neither so far is the recognition of hepatology as
a distinct sub-speciality of gastroenterology.
The latter is essential if all the new
research and knowledge in this field is to be brought into the NHS. The considerable
costs of specialised liver work underlies the need for appropriate funding and
accreditation of standards within the new tariff structure. PCTs need to be provided
with full knowledge of what is available. What also has to be taken into account, as
pointed out by one of the respondents to the survey, is the current dependency of
hepatology services on academic rather than NHS sources in many of the centres in our
major cities.
It is apparent too from this survey that non-transplant liver cases referred to the
transplant centres benefit greatly in terms of investigatory facilities and availability of
expert staff. Increasing the number of transplant centres in the country would be one
way of enhancing the level of provision of liver services generally. Furthermore, large
areas of the country are without a transplant centre at present, notably the Northwest,
(including Manchester and Liverpool) and the Southwest peninsula.
It has been
estimated that a patient living in Leeds is four times more likely to be referred for a liver
transplant than if their home is in Cornwall. Some years ago an imaginative proposal
was put forward for an additional centre serving the West Country, centred on Oxford
and including the cities of Plymouth, Bristol and Southampton and with a fully
integrated network of medical and surgical hepatology. It is to be hoped that the
findings of this survey will inform and stimulate further debate on an appropriate
organisational pattern as well as funding for specialist services in hepatology including
liver transplantation.
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Bibliogaphy:
1
Williams R. Direct and Indirect Constraints on Commissioning Specialist
Medical Care in “They’ve Had a Good Innings: Can the NHS Cope with an
Ageing Population?” Ed. David G Green and Benedict Irvine, CIVITAS: the
Institute for the Study of Civil Society.
2
Moore K, Thursz M, Mirza DF. National Plan for Liver Services – Specialised
Services for Hepatology, Hepatobiliary and Pancreatic Surgery. 2003. Report
prepared for the British Association for the Study of the Liver.
3
Parkes J, Roderick, P, Bennett Lloyd B, Rosenberg W. Hepatitis C in the United
Kingdom: A review of prevalence and service delivery. 2003. Report prepared
for the British Association for the Study of the Liver.
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Table 1: Staffing numbers for the 34 Hepatology centres, shown
separately for the 28 non-transplant and 6 transplant units (in brackets)
Number of Units
1-3
1
With >3



Consultants
Hepatology
Gastroenterology
General Physician
Without
1 (3)
9 (1)
7 (1)
7 (3)
13 (3)
2 (1)
8 (0)
2 (0)
2 (0)
12 (0)
5 (2)
18 (3)
Junior Medical Staff
 Specialist Registrar
 SHO
 Staff Grade
3 (3)
4 (1)
0 (0)
10 (3)
9 (4)
4 (1)
12 (0)
12 (1)
9 (2)
1 (0)
4 (1)
21 (3)
Specialist Nurses
 Hepatitis
 Alcohol
 Other
0 (2)
0 (0)
1 (1)
7 (3)
7 (1)
7 (1)
16 (1)
7 (3)
3 (2)
5 (0)
20 (3)
19 (2)
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Table 2: Provision of dedicated Inpatient Beds and Outpatient Clinics in
the 28 non-transplant and 6 Transplant Centres (in brackets) along with
Waiting Times for Routine and Urgent Clinic Appointments

Inpatient Beds

Outpatient
Clinics

Waiting times:
Routine
Urgent
> 30 beds
1 (2)
6-30 beds
9 (3)
1-6 beds
3 (1)
Without
15 (0)
> 5 clinics/wk
5 (4)
3-5 clinics/wk
10 (1)
1-2 clinics/wk
13 (1)
Without
> 20 weeks
10-20 weeks
5-10 weeks
< 5 weeks
3 (0)
> 10 weeks
1 (0)
14 (3)
5-10 weeks
2 (0)
9 (3)
2-5 weeks
16 (2)
0 (0)
< 2weeks
11 (4)
14
0 (0)
Table 3: The commonest replies to the question “Do you have a wish list
for improving local Hepatology provision?” Numbers given for the 34
Liver Centres and 49 providing a limited range of services
Additional Specialist Nurses
More Consultant Staff
Setting up of Alcohol Service
More Specialist Clinics
Funding for HCV Services
Better Radiological Service
Facilities for TIPPS/Liver Biopsy
Protected Inpatient Beds
Increase in ICU/HDU Beds
Better links with Transplant Centres
Centres
Liver (and transplant)
Limited Providers
11 (0)
20
3 (2)
10
4 (2)
7
2 (0)
6
4 (1)
7
2 (4)
1
3 (0)
2
4 (3)
2
0 (2)
1
2 (-)
5
15
Figure legend:
Figure 1:
Location of the 34 hepatology centres in England identified in the
Survey
Available at the following link:
http://www.bsg.org.uk/pdf_word_docs/hepservices.ppt
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