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| Making the Case for
Investment in an Integrated Continence Service |
Integrated Continence Service
A Source Book for Continence Services
The Continence Foundation
307 Hatton Square, 16 Baldwins Gardens, London EC1N 7RJ
Tel: 020 7404 6875 Fax: 020 7404 6876
E-mail: continence.foundation@dial.pipex.com
PREFACE
Two key developments make this publication timely: the NHS is re-organising
its primary care services into Primary Care Groups (and soon into
Primary Care Trusts); and the Department of Health has issued guidance
on best practice for the delivery of continence services. This guidance,
prepared by an expert working party, results from concern at Ministerial
level about weaknesses in the current service.
But it is unlikely that many PCGs or PCTS will give high priority
to continence services unless the arguments for investing in them
are powerfully deployed.
This booklet brings together relevant facts and figures from which
continence specialists can make a compelling case. It relates primarily
to England but can readily be adapted to use elsewhere in the UK.
In producing this booklet we have had much valuable help from Veronica
Haggar (Association for Continence Advice), Sue Thomas (Royal College
of Nursing Continence Care Forum) and Mandy Wells (representing
Incontact); and their organisations together with the Association
of Chartered Physiotherapists in Women's Health lend the publication
their support.
David Pollock
Director
The Continence Foundation
March 2000
|
CONTENTS
1. The New NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda |
MAKING
THE CASE FOR INVESTMENT IN AN INTEGRATED CONTINENCE SERVICE
1. THE NEW NHS GUIDANCE
The Department of Health has issued guidance (Department of Health,
2000) on continence services which sets out the need for |
identification at primary practice level of all patients with
incontinence;
full assessment leading to first-line treatment in the primary
care setting, with treatment/ management plans agreed with individual
patients;
integrated continence services, run by a Director of Continence
Services who would usually be a specialist continence nurse or
physiotherapist, bringing together under agreed protocols and
procedures primary, secondary and tertiary care, including specialist
diagnostic and treatment services;
continence services to be comprehensive, embracing urinary and
faecal incontinence, children and adults, at home and in homes,
and bringing together all relevant health disciplines, social,
educational and psychological services, users and carers ( see
also section 13.
)
|
The
guidance does not explicitly recommend joint commissioning of a continence
service by more than one Primary Care Group (or Primary Care Trust)
but it is implicit throughout that this is what is intended. For example,
the Guidance states in para. 3.2 that "properly integrated continence
services should . . . be based upon and evolve from local continence
advisory services" (which typically do cover more than one PCG); and
the pattern recommended - with the integrated continence service sitting
between primary practices and the local acute NHS Trust and working
in liaison with various local authority services - fits best a model
where several PCGs or PCTs are collaborating.
This
booklet does not seek to summarise the Guidance, copies of which are
available on this website in the campaigns
section. Rather, its purpose is to provide in ready-reference format
the information Continence Specialists will need to promote the case
for full implementation of the Guidance to those responsible for commissioning
continence services, notably local Primary Care Groups (and in the
near future to Primary Care Trusts).
Given
that the new policy has not been issued as expected as near mandatory
"action guidance" but as advice on good practice, and has been circulated
only to selected members of the boards of health authorities, NHS
trusts and primary care groups, the degree to which it is implemented
will depend even more heavily than had been expected on assiduous
and well informed lobbying by continence specialists.
We
hope that the booklet will be of assistance. It presents the information
topic by topic, with statements, examples and sources, rather than
as a developed argument in connected prose. It is thus a flexible
resource on the basis of which continence services can make a case
for maintaining, adapting and building on whatever has already been
achieved locally.
Reference:
Department of Health (2000): Good Practice in Continence Services.
Department of Health, London.
1. The New NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
|
2. THE ORIGIN OF THE GUIDANCE
The
new guidance was drafted by an expert group chaired by Professor
Paul Abrams of the Bristol
Urological Institute. This group was appointed by Paul Boateng,
then Under Secretary at the Department of Health, in the wake of
considerable public and Parliamentary concern over the inadequacies
of some local services (Patients Association, 1998; Anthony, 1998).
This was exacerbated when the Government without notice closed a
loophole, previously countenanced by the Treasury, whereby VAT could
be avoided on NHS purchases of continence pads for home delivery
(Continence Foundation, 1998). Protests were successfully coordinated
from national level and the Department of Health was led to setup
the review group with a remit to draft the guidance.
References:
Continence
Foundation (1998): The Politics of Continence. Continence Foundation,
London
Anthony B (1997): The Provision of Continence Supplies by NHS Trusts.
Middlesex University School of Health, Biological and Environmental
Sciences, for Incontact.
Patients Association (1998): The Priority Given to Commissioning
Health Services for Elderly People and those with Incontinence Problems
by Health Authorities. Patients Association, Harrow, Middlesex.
1. The New NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
3. PREVALENCE OF INCONTINENCE
There is no uniformity of definition of incontinence in the many published
studies, but a Royal College of Physicians working party (1995) produced
a useful if conservative synthesis of all the studies available to
them - this is quoted in section 4 below (Calculating
the local numbers affected).
Two other studies are worth noting (on which see also section
8(a)):
(a) A MORI poll (Brocklehurst, 1993) which gave the following percentages
of positive answers to the question "Have you ever suffered from any
of these health problems? . . . Bladder problems, e.g., leaking, wet
pants, damp pants": |
|
|
|
|
|
per
cent |
| Age |
n |
Ever |
In
previous year |
In
previous 2 months |
In
previous week |
| Men
|
|
|
|
|
|
| 30-49 |
867 |
2.0
|
1.5 |
0.8 |
0.8 |
| 50-59 |
315 |
5.4 |
2.5 |
2.5 |
2.5 |
| 60 |
701 |
13.3 |
7.3 |
5.3
|
3.7
|
| Total
|
1883 |
6.6 |
3.8 |
2.8 |
2.2 |
| Women |
|
|
|
|
|
| 30-49 |
921
|
10.9 |
7.2 |
5.4 |
3.6 |
| 50-59 |
363
|
15.4 |
9.1 |
6.3 |
5.2 |
| 60 |
840 |
16.8
|
11.7 |
10.2
|
8.3 |
| Total |
2124 |
14.0 |
9.3
|
7.5 |
5.7 |
|
| (b)
The Medical Research Council team in Leicester have found in a survey
of 10,226 adults aged over 40 (constituting a 70% response from those
approached) that more than one in three had clinically significant
symptoms of bladder problems. Their figures (Perry, 2000) for incontinence
are significantly higher than in the MORI poll quoted above or the
RCP review quoted in the next section. |
|
|
|
|
per
cent |
| Symptom |
Severity |
Women |
Men
|
Total |
| Nocturia |
Twice
a night + |
20.9 |
19.9 |
20.5
|
| Incontinence |
Several
times a month + |
20.2 |
8.9 |
14.9 |
| Urgency |
Most
of the time or overwhelming |
8.8 |
5.4 |
7.3 |
| Frequency |
Hourly
+ |
9.1 |
6.1 |
7.8 |
| Straining |
Most
of the time |
0.5 |
0.7 |
0.6 |
| Pain |
Most
of the time |
0.5 |
0.4
|
0.5
|
| Any
of these |
|
38.8
|
28.5 |
34.1 |
|
| Most
people with clinically significant symptoms did not find them bothersome
or want help, but the numbers who did remain significant: the following
are percentages of the total sample: |
|
|
|
|
per
cent |
| Felt
need |
Severity |
Women |
Men
|
Total |
| Bothersome |
A
lot of bother or moderate/severe problem |
8.0 |
6.2 |
7.2
|
| Want
help |
Yes |
3.8 |
3.8 |
3.8 |
| Socially
disabling |
A
lot of impact on activities, social life, relationships, feelings
OR quality of life |
3.2 |
2.2
|
2.8 |
|
NB:
3.8% wanting help is 3,800 per 100,000 population aged over
40.
|
(c)
A study by Brenda Roe et al (1996) based on 53% response from a survey
of 11,500 people aged 18+ in two areas reported a point prevalence
of incontinence at least twice a month of 9%, and a period prevalence
of 23%.
References:
Brocklehurst JC (1993) Urinary incontinence in the community - analysis
of a MORI poll: British Medical Journal 306: 832-4
Perry S et al (2000): An epidemiological study to establish the prevalence
of urinary symptoms and felt need in the community: the Leicestershire
MRC Incontinence Study: Journal of Public Health Medicine 22: 3: 427-434
Roe B et al (1996): An Evaluation of Health Interventions by Primary
Health Care Teams and Continence Advisory Services on Patient Outcomes
related to Incontinence. Health Services Research Unit at Oxford University.
ISBN 1 874551 15 4 and ISBN 1 874551 200 (Summary volume available
from the Continence Foundation)
Royal College of Physicians of London (1995): Incontinence: causes,
management and provision of services. Royal College of Physicians,
London. ISBN 1 873240 97 X
1. The New
NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
|
4. CALCULATING THE LOCAL NUMBERS AFFECTED
You can apply the percentages quoted above to the national population
and to your local population. Alternatively, use the figures from
the Royal College of Physicians study (1995). These are for people
living in their own homes (see section 7(a) below
for those in residential and nursing homes and long-stay hospitals)
and are set out in the table below.
If you do not know your local population figures by age and sex,
your Health Authority Public Health Department or your NHS Trust
will have them.
Alternatively:
in England and Wales, for health authority populations by
sex and age, consult "1991 Census: Key Statistics for New Health
Areas - England and Wales" (ISBN 011 691 6990) and for local authority
populations telephone the Population Estimates Unit (01329 813318)
or check the Office of National Statistics website (http://www.statistics.gov.uk);
in Scotland consult the General Register Office website http://www.gro-scotland.gov.uk
and in the Data Library click Population Estimates - 1998 mid-year
and download table 4 or else obtain "Mid-1998 Population Estimates
- Scotland" (ISBN 1-874451-55-9) (the same estimates) from Customer
Services, GRO for Scotland, Ladywell House, Ladywell Road, Edinburgh
EH12 7TF;
in Northern Ireland consult the website
http://www.nisra.gov.uk (look under Statistics/Demography) or
contact the General Register Office (tel 028 9025 2032, fax 028
9025 2044, Oxford House, 49-55 Chichester Street, Belfast BT1 4HL)
for mid-year population estimates for local authorities; for health
board figures, write to the Census Office, Macauley House, 2-12
Castle Street, Belfast BT1 1SA.
| Sex
& age group |
Prevalence
(%) * |
UK
population** |
Hence
UK total affected |
Local
population |
Hence
local total affected § |
| |
Min |
Max
|
(
' 000) |
Min |
Max |
|
Min
|
Max
|
| a |
b |
c |
d |
b
x d |
c
x d |
e |
b
x e |
c
x e |
| URINARY
INCONTINENCE |
| Women,
15-44 |
5 |
7 |
12,210,000 |
610,500 |
854,700 |
|
|
|
| ditto,
45-64 |
8 |
15 |
6,795,000
|
543,600 |
1,019,250 |
|
|
|
| ditto,
65 + |
10 |
20 |
5,473,000 |
547,300 |
1,094,600
|
|
|
|
| Total
Women |
|
|
24,478,000 |
1,701,400 |
2,968,550 |
|
|
|
| Men,
15-64 |
3 |
19,359,000 |
580,770 |
|
|
|
| ditto,
65 + |
7
|
10 |
3,798,000 |
265,860 |
379,800 |
|
|
|
| Total
Men |
|
|
23,157,000 |
846,630 |
960,570 |
|
|
|
| Total
Urinary |
|
|
47,635,000
|
2,548,030 |
3,929,120 |
|
|
|
| FAECAL
INCONTINENCE |
| 15-64 |
0.4 |
0.4 |
38,364,000
|
153,456 |
|
|
|
| 65+ |
3 |
5 |
9,271,000 |
278,130 |
463,550
|
|
|
|
| Total
Faecal |
|
|
47,635,000 |
431,586 |
617,006 |
|
|
|
| incl.
85+ |
15
|
1,089,000 |
163,350 |
|
|
|
* Royal College of Physicians (1995)
** Office of National Statistics - figures for 1997.
§ e.g., if you have 50,000 women locally aged 45-64, then the minimum
number who are likely to be incontinent is 50,000 x 8 / 100 = 4,000
and the maximum number 50,000 x 15 / 100 = 7,500. (Then, if only
2,000 women in this age group are on your local records as having
continence problems, you can deduce that at least 2,000 and maybe
up to 5,500 have not presented, indicating the need for local awareness
campaigns.)
Reference:
Royal College of Physicians of London (1995): Incontinence: causes,
management and provision of services. Royal College of Physicians,
London. ISBN 1 873240 97 X
1. The New
NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
5.
THE NATURAL HISTORY OF INCONTINENCE
Incontinence can affect anyone at any age, although data are scarce
about its incidence, spontaneous remission rates and risk factors
(Hamper et al, 1997). Those with a disability may be more at risk.
Nocturnal enuresis is a widespread disorder in children (Johnson,
1998) but is more common in boys (Chiozza, 1998). Urinary symptoms
become less common with age in children, but are still reported by
a significant number of healthy teenagers (Swithenbank et al, 1998).
In younger adult women stress incontinence is predominant (Thom, 1998)
with pregnancy and vaginal delivery as the major risk factors (Foldspang
et al, 1998). Menopause is also considered a risk factor but this
is not generally backed up by epidemiological studies (Thom and Brown,
1998). Urge and mixed incontinence are more common in older women
but still affect 10-15% of incontinent younger women (Thom, 1998).
In adult men incontinence rates increase with age (Malmstein et al,
1997). Enlargement of the prostate and surgical treatment of the prostate
are significant risk factors (Diokno, 1998). The overactive bladder
accounts for 50% of incontinence in men (Payne, 1998).
Incontinence is most prevalent in the elderly and is particularly
common in the frail aged in long-term health care settings. It is
associated with cerebrovascular disease, drug usage and environmental
factors affecting those with impaired mobility.
Urinary incontinence can be treated successfully in a great many cases
with proper assessment and appropriate management (Moilanen et al,
1998, Samuelsson, 1997, Wishaw, 1998). Despite this, a significant
number of sufferers do not seek help. Reasons for this may be that
incontinence is an embarrassing problem (Jay et al, 1998); it may
not be seen as abnormal, and treatments are often viewed as too invasive
or unsuccessful (Keller, 1999). (See also section 6.)
Faecal incontinence is an under-reported condition. The problem increases
with advancing age (Norton, 1996), being most common in the frail
aged in long-term care. The commonest cause of faecal incontinence
in healthy women is childbirth trauma (Kamm, 1994). |
| References:
Chiozza M et al (1998): An Italian epidemiological multicentre study
of nocturnal enuresis: British Journal of Urology 81:suppl 3: 86-89
Diokno A (1998): Post prostatectomy urinary incontinence: Ostomy
Wound Management 44:54-8, 60
Foldspang A et al (1999): Prevalent urinary incontinence as a correlate
of pregnancy, vaginal childbirth and obstetric techniques: American
Journal of Public Health 89:209-12
Hamper C et al (1997): Prevalence and natural history of female
incontinence: European Urology 32:suppl 2: 3-12
Jay J et al (1998): Urinary incontinence in women: Advanced Nurse
Practitioner 6:32-7
Johnson M (1998): Nocturnal enuresis: Urological Nursing 18:259-73
Kamm M (1994): Obstetric damage and faecal incontinence: Lancet
344: 730-733
Keller S (1999): Urinary incontinence: occurrence, knowledge, and
attitudes among women aged 55 and older in a rural Midwestern setting:
Journal of Wound Ostomy and Continence Nursing 26:30-38
Malmsten U et al (1997): Urinary incontinence and lower urinary
tract symptoms: an epidemiological study of men aged 45-99: Journal
of Urology 158:1733-7
Moilanen I et al (1998): A follow up of enuresis from childhood
to adolescence: British Journal of Urology 81:suppl 3:94-97
Norton C (1996): Faecal incontinence in adults: prevalence and causes:
British Journal of Nursing 5: 1366-1373
Payne C (1998): Epidemiology, pathophysiology and evaluation of
urinary incontinence and overactive bladder: Urology 51:(2A suppl):3-10
Samuelson E et al (1997): A population study of urinary incontinence
and nocturia among women aged 20-59 years: prevalence, well-being
and wish for treatment: Acta Obstetrica et gynaecologica Scandinavica
76:74-80
Swithenbank L et al (1998): The natural history of urinary symptoms
during adolescence: British Journal of Urology 81:90-3 Thom D (1998):
Variation in estimates of urinary prevalence in the community: effects
of differences in definition, population characteristics and study
type: Journal of the American Geriatric Society 466:473-480
Thom D, Brown J (1998): Reproductive and hormonal risk factors for
urinary incontinence in later life: a review of the clinical and
epidemiological literature: Journal of the American Geriatric Society
46:1411-1417
Wishaw M (1998): Urinary incontinence in the elderly: establishing
a cause may allow a cure: Australian Family Physician 27:1087-1090
1. The New
NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
6.
THE ICEBERG EFFECT
Having worked out the numbers of people locally, by sex and age group,
who are (from the national figures) likely to be having continence
problems, and knowing how many you are already helping, you are in
a position to work out how many people you are missing and in what
age/sex groups they fall - see
example at footnote § to the table in section 4.
This will help you to plan proactive work to identify patients with
incontinence, as required in the NHS Guidance. Such work may include
not only changes of practice in the primary care setting (clear invitations
to raise the subject, training in sensitive ways to talk about it,
positive "screening" of people in high-risk groups, etc.) but also
publicity and awareness activities (firmly laid down in the new NHS
guidance as the responsibility of the integrated continence service).
In arguing the importance of proactive work to identify patients with
incontinence, you should rely on:
(a) the continuing strength of the taboo on
talking about incontinence. It is seen as a reversion to childhood,
and many people feel they are in some way to blame for it. The taboo,
reinforced by the continuing (if weakening) taboos on nakedness and
talk about sex, makes many people extremely reluctant to present -
as of course do feelings of shame about personal dirtiness and smells:
see Brocklehurst (1993), Norton (1988).
"I've not gone out for nine years for fear of wetting someone's chair
or car seat" - caller's sobbing answerphone message to Continence
Foundation Helpline, March 1999.
(b) the widespread misapprehension that there is no cure (or no cure
short of surgery) for incontinence: this is evident from remarks made
by callers to the nurses on the Continence Foundation Helpline; see
also Keller (1999).
|
| References:
Brocklehurst JC (1993): Urinary incontinence in the community -
analysis of a MORI poll: British Medical Journal 306: 832-4
Keller S (1999): Urinary incontinence: occurrence, knowledge, and
attitudes among women aged 55 and older in a rural Midwestern setting:
Journal of Wound Ostomy and Continence Nursing 26:30-38
Norton PA et al (1988): Distress and delay associated with urinary
incontinence, frequency and urgency in women: British Medical Journal
297: 1187-9
1. The New
NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
| 7.
SPECIAL LOCAL CONSIDERATIONS
How
is your area different from the average?
What
makes it different?
How
is that going to affect the service you provide? |
(a) Does your area have a higher than average number of people
in nursing/residential homes?
The Royal College of Physicians (1995) gave the following incontinence
prevalence figures for both sexes (but note that since the time
of the studies on which it is based the number of long-term hospital
places has been severely reduced so that the incidence of incontinence
in nursing and residential homes has probably risen noticeably): |
| |
Urinary
Incontinence |
Faecal
Incontinence |
| Residential
Homes |
25% |
10% |
| Nursing
Homes |
40%
|
30% |
| Hospital
(elderly & elderly mentally infirm) |
50-70% |
60% |
You
can obtain the local totals of nursing and residential home beds from
Social Services or from the nursing homes inspectorate and calculate
the number of people needing continence care: |
| Sector |
Local
numbers in sector |
Urinary
Incontinence |
Faecal
Incontinence |
|
|
Prevalence
multiplier |
Local
number affected |
Prevalence
multiplier |
Local
number affected |
| |
a |
b |
a
x b |
c
|
a
x c |
| Res.
homes |
|
0.25 |
|
0.1 |
|
| Nurs.
homes |
|
0.4 |
|
0.3 |
|
| Hospital |
|
(say)
0.6 |
|
0.6 |
|
| TOTAL |
|
|
|
|
|
|
(b) Do you have a large ethnic community that warrants language support
or additional female staff?
The Public Health Department's annual report should give an ethnic
breakdown of the local population, or you can obtain it from the Community
Health Council. Best practice indicates that you should employ patient
advocates fluent in the patients' languages and familiar with their
cultural norms (Haggar, 1995). With any sizeable population of ethnic
minorities, especially of Asian origin, this may argue for additional
funding. In addition, a case may be made for additional work to publicise
the service and/or provide special clinics in community-based centres.
(c)
Is your area rural, making travelling difficult (for you and your
clients)?
This is going to impact on the type of service you can provide: home
visits will take longer, and clinics will need to be held in more
locations (serving smaller average populations) to allow for patients'
travelling difficulties. Calculate the average travelling time to
do a home visit and liaise with a colleague with a similar but urban
population to compare the cost of running your clinics.
(d)
Does your area have a large homeless population? Anecdotally there
is a link between homelessness (and refugee populations) and incontinence,
though as yet no research has been undertaken. However, caring for
this community raises logistic problems: consider, for example, pad
deliveries to the homeless or their frequent lack of registration
with a GP.
|
(e)
Do you have a large number of informal carers?
It is important to provide adequate support for informal carers of
people with incontinence since, if the carers are unable to cope,
more people will have to be admitted to long-term residential or nursing
care (Thom et al, 1997) at substantially increased cost to public
funds (see below - section 11) and contrary to Government
policy (Department of Health, 1998).
The Department of Health has set it as an objective for health and
social services in England to "provide carers with the support and
services to maintain their health and with the information they need"
in their work of caring: "As a first step [services must] ensure that
systems are in place in primary care and in Social Services Authorities
to identify patients and service users who are or who have carers."
This has to be achieved by April 2000 (Department of Health, 1998).
GPs are then required to check annually the physical and emotional
health of carers, tell them that they can ask for social services
to assess their own needs, and advise them on carer support groups
(Department of Health, 1999).
Inevitably incontinence provides a major source of both physical and
emotional strain for carers (coping with the feelings of the person
cared for, help with toiletting day and night, lifting people unable
to move by themselves, constant laundry, lack of personal time, gross
intrusion into any social life, etc.) The strain will be demonstrably
increased if incontinence is inaccurately assessed and/or inadequately
treated, and if inappropriate or insufficient products are supplied
and expert support is not available.
A question in the census in 2001 will provide detailed information
about carers: meantime the best available information is that in Britain
one in every six households (17%) includes a carer: 3.3 million women
and 2.4 million men, totalling 5.7 million carers. (Northern Ireland
has about 250,000.) Most are in the age range 45-64 but 27% are aged
65 and over. Nine out of ten are caring for a relative (4 out of 10
for parents, 2 out of 10 for a partner). Half are caring for someone
aged over 75; nearly 2 out of 10 are caring for more than one person
(Department of Health, 1999). |
References:
Brocklehurst JC (1993): Urinary incontinence in the community
- analysis of a MORI poll: British Medical Journal 306: 832-4
Department of Health (1998): Modernising Health and Social Services:
National Priorities Guidance 1999/00-2001/02. Department of Health,
London, September 1998
Department of Health (1999): Caring about Carers: a national strategy
for Carers. Department of Health, London.
Haggar V (1995): Working with Ethnic Minority Communities: Nursing
Standard 9(25) Suppl:3-4
Royal College of Physicians of London (1995): Incontinence: causes,
management and provision of services. Royal College of Physicians,
London. ISBN 1 873240 97 X
Thom et al (1997): Medically recognized urinary incontinence and risks
of hospitalization, nursing home admission and mortality: Age and
Ageing 26:367-374
1. The New
NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
| 8.
COMPARING NUMBERS WITH OTHER DISEASES
Incontinence affects large numbers of people but remains
a neglected and to some extent hidden condition. Compare the numbers
affected by incontinence (based on sections 3 and
4 above) with those affected by various other conditions (all
figures are for UK):
(a) Urinary incontinence
Applying Royal College of Physicians (1995):
2.5 - 4.0 million (see section 5)
Applying MORI (Brocklehurst, 1993) to the population figures from
the Office of National Statistics:
| People
aged 30+ |
who
have experienced incontinence |
|
in
the past week |
in
the past 2 months |
in
the past year |
ever
|
| Men |
346,000 |
429,000 |
591,000 |
1,045,000
|
| Women |
1,555,000 |
2,016,000 |
2,633,000 |
4,097,000 |
| TOTAL |
1,901,000 |
2,445,000 |
3,224,000 |
5,142,000 |
Applying the MRC percentages for "incontinent several times a month"
to the population aged 40+:
| Men
aged 40+ |
Women
aged 40+ |
Total
aged 40+ |
| 1,120,000 |
2,894,000 |
4,013,000 |
|
| (b)
Faecal incontinence
Applying
Royal College of Physicians (1995): 432,000-
617,000
(c)
Other conditions
Diabetes: 1.4 mn diagnosed, possibly 1 mn undiagnosed (British
Diabetics Association)
Parkinson's Disease: 120,000 (Parkinson's Disease Society)
Multiple Sclerosis: 85,000 (Multiple Sclerosis Society)
Asthma: 3.4 mn (Office of National Statistics estimate, quoted by
National Asthma Campaign)
Epilepsy: 420,000 (British Epilepsy Association)
Dementia: 700,000 of which Alzheimer's Disease 385,000 (Alzheimer's
Disease Society) |
References:
Brocklehurst JC (1993) Urinary incontinence in the community - analysis
of a MORI poll: British Medical Journal 306: 832-4
Royal College of Physicians of London (1995): Incontinence: causes,
management and provision of services.
Royal College of Physicians, London. ISBN 1 873240 97 X
1. The New NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
| 9.
LINKING INCONTINENCE WITH NHS PRIORITIES |
The
National Health Service is under pressure to meet various Government
targets and priorities. It can legitimately be argued that tackling
incontinence effectively can contribute to this public health agenda:
(a) Good continence services can contribute directly to two of the
four priority areas laid down in Saving Lives: Our Healthier Nation
(Department of Health, 1999 a): stroke and accidents. (The other two
are cancer and mental health, to the second of which a marginal relevance
might be argued in terms of the threats to the self-esteem of people
with incontinence and to the ability to cope of their carers.)
|
(i)
Stroke: Of the 85% of stroke patients who survive for a
week, 42% are incontinent. More importantly, 18% of stroke patients
are still incontinent on discharge from hospital (Rudd et al,
1999). Good continence services can not only mitigate the effects
of the stroke: they can thereby restore self-esteem and promote
efforts at recovery.
(ii) Accidents: Incontinence can cause falls as people
with urge incontinence hurry to get to the WC: the risk of falls
is increased with urge incontinence by 30% and the risk of fractures
3% (Brown, 2000; Stevenson et al, 1998). The same must be true
for those with nocturia who have to find their way to the toilet
at night perhaps half awake and in the dark.
|
(b)
The Government have named "promoting independence" as a "national
priority", on which Health and Social Services should have a shared
lead role (Department of Health, 1998 b). They should seek "to ensure
the provision of services which help adults achieve and sustain the
maximum independence in their lives", since "availability of timely
health and social services in the community can make a crucial difference
to the ability of older people to maintain or achieve independence
and maintain a healthy active life". The Government has set as an
objective to "prevent or delay loss of independence by developing
and targeting a range of preventive services for adults" and support
for carers. One of the two aims of the White Paper (Department of
Health, 1999 a) is "to improve the health of the population as a whole
by increasing the length of people's lives and the number of years
people spend free from illness". See also section
12(c)(v) below.
Good continence services are directly relevant to this objective since
incontinence is a precursor to institutionalisation: |
(i)
In a sample of several thousand people aged 65+, over a period
of nine years "the risk of hospitalization was 30% higher in women
following a diagnosis of incontinence . . . and 50% higher in
men . . . after adjustment for age, cohort and co-morbid conditions.
The adjusted risk of admission to a nursing facility was 2.0 times
greater for incontinent women . . . and 3.2 times greater for
incontinent men . . . Urinary incontinence increases the risk
of hospitalization and substantially increases the risk of admission
to a nursing home, independently of age, gender and the presence
of other disease conditions, but has little effect on total mortality."
(Thom et al, 1997)
(ii) In a sample of 9008 community residents aged 65+, those with
urinary incontinence but without cognitive impairment or significant
physical disability were 70% more likely to be admitted to an
institution (and 20% more likely to die) within five years than
those who were continent: see reference for detailed definitions
(Rockwood et al, 1999)
|
(c) The Government's 1999 White Paper Saving Lives: Our Healthier
Nation proposes that Health Authorities should make local Health Improvement
Plans (HImPs). The preceding Green Paper suggested that these might
include action to tackle diabetes and to meet the needs of
those with learning difficulties. Both these have relevance
to incontinence - as would many other items that might be included
in a local HImP: |
(i) Only 21% of those with profound learning disabilities are
always dry day and night (and the rates for "never wet by day"
are 94% for those with mild, 89% with moderate, 82% with severe
and 42% with profound learning difficulties) (von Wendt et al,
1990; Smith & Smith, 1998)
(ii) Diabetes leads to peripheral neuropathy which can
involve incontinence (Appel & Baum, 1990)
|
|
(d) The same White Paper has a number of other relevant references:
|
(i)
"Stress can harm people's physical health" (para 3.11)
- the stress imposed on carers looking after people with incontinence
is mentioned above (section 7(e)). People with
incontinence - especially those who have not sought help or are
unaware that help is available - undoubtedly also suffer from
stress.
(ii) "The Healthy Citizens Programme . . . aimed at ensuring
people have the knowledge and expertise they need to deal
with illnesses and health problems" (para 3.29) - the ignorance
of many people about incontinence and the treatments available
needs to be dispelled by public awareness campaigns such as are
urged as "critical" in the Guidance. The White Paper then identifies
three strands for the programme: NHS Direct, health skills and
expert patients:
|
- The NHS is providing the NHS Direct
telephone service and website, both of which deal with incontinence.
- Health skills which could well
be seen as covering preventive exercising of pelvic floor muscles,
especially before or during pregnancy. The White Paper cites skills
related to asthma and arthritis - you can note that coughing caused
by asthma may exacerbate or precipitate stress continence, while
arthritis can cause functional incontinence.
- The expert patients programme
is to help people deal with chronic illness. There are many skills
related to coping with chronic incontinence: for example, pelvic
floor exercises and intermittent self-catheterisation.
|
(e) In the chapter of Making a Difference (Department of Health,
1999 b) devoted to enhancing the quality of care, the Department
of Health picked out continence as one of eight "fundamental and
essential aspects of care" which sometimes fell "below acceptable
standards" (para. 7.9).
(f) Given that elderly people in particular are affected by incontinence,
it is highly relevant that the Government are planning to produce
in autumn 2000 a National Service Framework for Older People (Department
of Health, 1999 c). Any such framework must include reference to
incontinence. "The National Service Framework for older people will
set national standards and define service models for NHS care of
older people; put in place strategies to support implementation
of those models; and establish performance measures against which
progress within an agreed time scale will be measured. It is being
developed with the assistance of an external reference group and
a number of task groups which bring together health professionals,
service users and carers, health service managers, partner agencies
and other advocates." - quoted from the Government's response to
the House of Commons Health Committee's report on long term care
(15 July 1999 - see
http://www.official-documents.co.uk/document/cm44/4414/4414.pdf).
The prospective Framework is referred to in para. 9.4 of the Guidance
on continence services. (Better Services for Vulnerable People,
EL(97)62, referred to in the Guidance at para. 1.6 relates to continuing
care and will feed into the National Service Framework.)
(g) Reference is also made in para. 9.4 and in some of the preceding
sections of the Guidance to the Performance Assessment Framework.
Details of this can be found on the Department of Health's website
at http://www.doh.gov.uk/indicat/
from which both the High Level Indicator Set and the Clinical Indicator
Set can be can be accessed. (The former are more relevant to community
services, the latter to acute services but none of the indicators
has specific reference to incontinence.)
(h) The Guidance (para. 9.4) also refers to the proposed Commission
for Care Standards: this is the authority the Government proposes
to create in England to carry out the inspection and regulation
of residential and nursing homes, children's homes, domiciliary
social care providers and other services. Its inspectors will combine
social and health care skills, including nursing. The plan was originally
for eight regional commissions. (Department of Health, 1998 b).
(i) The Department of Health is promoting a benchmarking exercise
for incontinence under the "Making a Difference" initiative. Pilot
exercises are being conducted during 2000 with a view to Nursing
Directors being issued, maybe early in 2001, with a set of benchmarks
against which to measure their services. There might, it is thought,
be eight or ten "multiple choice questions" to apply (probably)
to a representative sample of patients and thus produce a quantified
profile which can be compared with results elsewhere. [Note:
This has now been published.]
(j) The Audit Commission report on district nursing (Audit Commission,
1999) found significant weaknesses in the sample Trusts they surveyed
in the assessment of incontinence (see section
12(c)(v)). The new Guidance quotes the Commission's report:
"In practice district nurses implement a conservative care plan
focused on managing the problem rather than treating the underlying
causes". All local auditors will have followed up that report and
many of them will have used the work on incontinence as a feature
of their local audit. Local audit reports have been or will shortly
be submitted to NHS Trust Audit Committees and will include recommendations
for rectifying any failings. Copies of such reports should be obtainable
from Directors of Nursing. Follow-up investigations of district
nursing by local auditors may be expected in 2-3 years' time, when
implementation of recommendations in this year's reports may be
reviewed or incontinence assessment may be audited for the first
time.
(k) One of the Government's major concerns is to reduce waiting
lists, including those for appointments with consultants (Department
of Health, 1998 a). In some areas people with incontinence are referred
far too quickly to urologists or (uro)gynaecologists when they could
well be assessed, treated and often cured in nurse-led clinics by
nurses or physiotherapists. See also section
12(c)(iv). |
| References:
Appell RA and Baum N (1990): Neurogenic Bladder in Diabetes: Pract
Diabetol 9(4): 1-4. Audit Commission (1999): First Assessment: a
review of district nursing services in England and Wales. Audit
Commission, London
Brown J (in press): Urinary incontinence: does it increase risk
for falls and fractures? Journal of the American Geriatric Society
48(7)
Department of Health (1998 a): The New NHS: Modern and Dependable:
A National Framework for Assessing Performance: consultation document.
Department of Health, January 1998
Department of Health (1998 b): Modernising Social Services: Promoting
Independence, Improving Protection, Raising Standards. Department
of Health, November 1998
Department of Health (1999 a): Saving Lives: Our Healthier Nation
(Cm 4386). The Stationery Office, London, July 1999.
Department of Health (1999 b): Making a Difference: strengthening
the nursing, midwifery and health visiting contribution to health
and healthcare. Department of Health, London, July 1999. ( See
http://www.doh.gov.uk/nurstrat.htm )
Department of Health (1999 c): Modernising Health and Social
Services: National Priorities Guidance 2000/01-2002/03. Department
of Health, London, December 1999 (See http://www.doh.gov.uk/npg/
)
Rockwood et al (1999): A brief clinical instrument to classify
frailty in elderly people: The Lancet 353: 205-206.
Rudd AG et al (1999): The National Sentinel Audit for Stroke: a
tool for raising standards of care: Journal of the Royal College
of Physicians 33: 460-464.
Smith PS and Smith LJ (1998): Promoting continence training for
people with learning difficulties: Journal of Community Nursing
12: 18-25
Stevenson B et al (1998): Falls risk factors in an acute-care setting:
a retrospective study: Can J Nurs Res 30(1): 97-111.
Thom et al (1997): Medically recognized urinary incontinence and
risks of hospitalization, nursing home admission and mortality:
Age and Ageing 26: 367-374
Tinetti ME, Williams CS (1997): Falls, Injuries due to Falls,
and the Risk of Admission to a Nursing Home: New England Journal
of Medicine 337(18): 1279-84
von Wendt L et al (1990): Development of bowel and bladder control
in the mentally retarded: Developmental Medicine and Child Neurology
32: 515-518
1. The
New NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
9. Linking Incontinence with NHS Priorities
10. Quality of Life
11. Clinical Governance
12. The Cost of Incontinence to the NHS
13. The Need for an Integrated Service
14. Getting Incontinence on the Agenda
RETURN
TO TOP OF PAGE
|
| 10.
QUALITY OF LIFE |
Many
studies have identified the impact of incontinence on quality of life
and some key themes emerge:
- Distress
- Embarrassment
- Inconvenience
- Threat to self esteem
- Loss of personal control
- Desire for normalisation
- see Button et al (1998). People who are incontinent have a significantly
lower health status and subsequently great health needs (Roe et al,
1996).
Quotes from patients make compelling reading. Try to include quotes
from your own patients, particularly ones that give a local feel.
|
|
| "Incontinence
is soul shattering. It can completely ruin the lives of those
of us who are affected by it. Humiliation, degradation and
shame are familiar feelings that we experience when facing
incontinence. What is important for us all to appreciate now
is that this suffering is not necessary. There are a great
many things that can be done to resolve incontinence. The
problem is finding people who are able to offer the help and
advice that is required."
Person with
incontinence, writing to Incontact: White (1997) |
| "The
doctor asked me to have an operation but I cancelled it. I
do not want to tell him because he will get angry with me.
I don't want an operation, I want some tablets or some other
medicine to help"
(Department of Health, 1994) |
Mitteness
(1987) was the first person to suggest that successful management
of incontinence can effect person's self esteem. Johnson et al (1998)
showed an independent positive association between urinary incontinence
and poor self-rated health. Skoner (1994) in a small study showed
that successful self-management gave a feeling of control and normality.
Roe et al (1996) identified as indicators of successful/effective
management:
that the consumer is able to:
|
seek
help early
openly discuss the problem
identify some positive aspect of incontinence.
|
| and
that the healthcare professional is able to: |
provide
explicit pro-active documented care plans to the consumer
involve the consumer in the choice of management or treatment
consider the consumer's views
|
| "The
continence advisor has helped me retain my dignity."
-
patient quoted in NHS (1994). |
|
| References
Button D, Roe B, Webb C, Frith T, Colin-Thomé D, Gardner L (1998):
Continence: Promotion and Management by the Primary Health Care
Team.: Consensus Guidelines. Whurr Publishers, London.
Department of Health (1994): Incontinence. Department of Health,
London
Johnson TM 2nd, Kincade JE, Bernard SL, Busby-Whitehead J, Hertz-Picciotto
I, DeFriese GH (1998): The association of urinary incontinence with
poor self-rated health: Journal of the American Geriatric Society
46(6): 693-9
Mitteness LS (1987): The management of urinary incontinence by community-living
elderly: Gerontologist 27(2) 185-193
NHS Executive (1994): Incontinence: Citizens' Charter booklet. Department
of Health, London.
Roe B, Wilson K, Doll H, Brooks P (1996): An Evaluation of Health
Interventions by Primary Health Care Teams and Continence Advisory
Services on Patient Outcomes related to Incontinence. Health Services
Research Unit, Department of Public Health and Primary Care, University
of Oxford.
Skoner MM (1994): Self management of urinary incontinence among
women 31 to 50 years of age. Rehabilitation Nursing 19(6) 339-347
White H (1997): Incontinence in Perspective. Chapter in Getliffe
K, Dolman M (1997): Promoting Continence. Baillière Tindall, London
1. The New
NHS Guidance
2. The Origin of NHS Guidance
3. Prevalence of Incontinence
4. Calculating the Local Numbers Affected
5. The Natural History of Incontinence
6. The Iceberg Effect
7. Special Local Considerations
8. Comparing Numbers with other Diseases
| | |
