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, CBEDirector, the Institute of Hepatology69 – 75 Chenies MewsLondon, WC1E 6HX

Tel: 020 7679 6510Fax: 020 7380 0405Email: 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

A bstract:

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. Scotland and Wales which have

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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 170-

800,000 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 non-

transplant 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 non-

transplant 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 wish-

list 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 non-

transplant 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 6 th 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

With >3 1-3 1 WithoutConsultants

Hepatology 1 (3) 7 (3) 8 (0) 12 (0) Gastroenterology 9 (1) 13 (3) 2 (0) 5 (2) General Physician 7 (1) 2 (1) 2 (0) 18 (3)

Junior Medical Staff Specialist Registrar 3 (3) 10 (3) 12 (0) 1 (0) SHO 4 (1) 9 (4) 12 (1) 4 (1) Staff Grade 0 (0) 4 (1) 9 (2) 21 (3)

Specialist Nurses Hepatitis 0 (2) 7 (3) 16 (1) 5 (0) Alcohol 0 (0) 7 (1) 7 (3) 20 (3) Other 1 (1) 7 (1) 3 (2) 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

> 30 beds 6-30 beds 1-6 beds Without Inpatient Beds 1 (2) 9 (3) 3 (1) 15 (0)

> 5 clinics/wk 3-5 clinics/wk 1-2 clinics/wk Without Outpatient

Clinics5 (4) 10 (1) 13 (1) 0 (0)

> 20 weeks 10-20 weeks 5-10 weeks < 5 weeks Waiting times: Routine 3 (0) 14 (3) 9 (3) 0 (0)

> 10 weeks 5-10 weeks 2-5 weeks < 2weeks Urgent 1 (0) 2 (0) 16 (2) 11 (4)

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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

Centres

Liver (and transplant) Limited ProvidersAdditional Specialist Nurses 11 (0) 20More Consultant Staff 3 (2) 10Setting up of Alcohol Service 4 (2) 7More Specialist Clinics 2 (0) 6Funding for HCV Services 4 (1) 7Better Radiological Service 2 (4) 1Facilities for TIPPS/Liver Biopsy 3 (0) 2Protected Inpatient Beds 4 (3) 2Increase in ICU/HDU Beds 0 (2) 1Better links with Transplant Centres 2 (-) 5

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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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