Memorandum by the National Association
for Colitis and Crohn's Disease
NACC is a national charity which represents
the needs of 200,000 people in the UK living with Colitis and
Crohn's Disease (IBD). Symptoms of IBD include frequent diarrhoea
and/or faecal incontinence. Day to day living is affected by a
constant anxiety about suddenly needing a toilet and having very
little time to find one, and this can have a devastating impact
on the ability to engage in activities away from home. The provision
of public toilet facilities is, therefore, an issue of great concern
to people living with IBD.
— Ulcerative Colitis and Crohn's Disease
are both forms of Inflammatory Bowel Disease (IBD).
— Approximately 200,000 people in the
UK suffer from IBD.
— IBD is a lifelong condition that
starts most frequently between the ages of 10 and 40 years.
— IBD causes swollen, inflamed and
ulcerated intestines.
— Symptoms include abdominal pain,
weight loss, tiredness and diarrhoea.
— People with IBD live with the problem
of an unpredictable, frequent and urgent need for access to a
toilet because of diarrhoea.
— The experience or fear of faecal
incontinence is very undermining to a person's confidence and
self esteem.
— The National Association for Colitis
and Crohn's Disease (NACC) is a national charity, founded in 1979
to provide information and support, raise funds for research,
increase awareness and understanding of the conditions and campaign
for the provision of better services to meet the needs of people
living with IBD.
— NACC members are issued with a "Can't
Wait" card to help when seeking toilet facilities urgently
in public places.
— NACC members are currently piloting
a scheme to rate local tourist attractions toilet facilities.
— In their review of the eligibility
criteria for disabled parking concessions (Blue Badge), the Department
for Transport has recognised the need for people with IBD to be
able to park at short notice in restricted areas in order to access
toilet facilities urgentlyi.
1. Ulcerative Colitis and Crohn's Disease,
collectively known as Inflammatory Bowel Disease (IBD), affects
approximately one in 400 people living in the UK. There are up
to 18,000 new cases every year and research has shown that the
number of people with Crohn's Disease has been rising, particularly
among young people. These life-changing conditions often start
in teenagers and young adults and last for a lifetime—with
the disease flaring-up at unpredictable times. The causes of IBD
are unknown and there is no cure.
2. The sudden and uncontrollable need to
use a toilet is a genuine and recognised symptom of IBD. A 2007
NACC survey of 974 young people with IBD underlined the profound
effects that IBD can have. Isolation brought about by needing
to be in easy reach of a toilet, combined with the symptoms of
pain and tiredness, was found to be a consequence of IBD; 43%
of young people reported feeling seriously isolated at the time
of their diagnosis. When asked for general comments about their
lives and the way it had impacted upon their lives, 246 young
NACC members stated that their disease made socializing almost
impossible, 183 of these stating that "always needing to
know the proximity of a toilet" most affected their lives.
ii
3. A 2004 NACC Survey explored the range
of symptoms that patients with IBD experience. The survey was
sent to 5,000 members and these results reflect the analysis of
the first 2,000 responses received. 67% of those who responded
had had a flare-up of their disease in the last two years. Those
under 29 years old were more likely to have had a flare-up in
that time (87%). During a flare-up of Ulcerative Colitis 70% of
respondents' ranked urgency/diarrhoea or incontinence first as
the symptom having the most impact on their lives. The corresponding
figure for Crohn's Disease was 48%.iii
4. Having an "accident" in public
is every patient's worst fear and can have a devastating effect
on their ability to undertake everyday activities such as going
to work, shopping or socialising. Outings have to be meticulously
planned taking into account the availability and location of public
toilets. Many patients carry a RADAR key (NKS for disabled people);
however concern has been expressed about toilet closures which
have undermined confidence in the scheme. A lack of adequate facilities
at bus and train stations and on board trains exclude many patients
from using public transport, and at present the Blue Badge Scheme
doesn't cover patients who need to park in restricted areas for
urgent access to a toilet (see section 7 below).
5. NACC members are issued with a "Can't
Wait" card which has the message "Please help—our
member has a medical condition which means they need to use your
toilet facilities urgently. Your kindness and cooperation would
be much appreciated." This card is intended to make it easier
for members to ask to use toilets in shops and offices without
having to give a long explanation about their condition. However,
it doesn't guarantee access and we hear from members who have
been very distressed when access to toilet facilities has been
refused.
6. The local NACC Group in County Durham
is piloting a scheme to rate local tourist attraction's toilet
facilities. Members are asked to rate the toilets on their Group's
website and NACC may award any tourist attraction a "NACC
√√√√√ sticker
award", which the local tourist attraction could display.
Places receiving these awards may be mentioned on NACC's national
and local group websites and would help people who have IBD feel
more confident to visit these tourist attractions.
7. The Strategic Review of the Blue Badge
Schemeiv recognises the need for individuals with Colitis or Crohn's
Disease to seek toilet facilities at short notice. "Rather
than extending the Blue Badge to such individuals, the projects
recommended the use of alternative mechanisms such as the "I
Can't Wait" cards used by members of the National Association
for Colitis and Crohn's Disease".v In their response to this
independent review, the Department for Transport acknowledges
the possibility of Government initiatives and states their intention
to "work with stakeholders to explore "Non-Blue Badge"
options for people who do not qualify for the Scheme (eg people
with Crohn's Disease and Colitis)." vi
NACC welcomes the opportunity to work with the
DFT on options to enable people with Colitis or Crohn's Disease
to park in restricted areas when needing to access a toilet as
a matter of urgency. However, as with the RADAR Keys, NACC members
have addressed concern that the benefits of such a parking scheme
will be undermined by the closure of public toilets.
In summary, one in 400 people in the UK are
living with the lifelong inflammatory bowel diseases Colitis and
Crohn's Disease (IBD), the symptoms of which include urgency/frequency
or faecal incontinence. People affected by IBD live with a constant
anxiety about suddenly needing a toilet and having very little
time to find one. Consequently, this can have a devastating impact
on their ability to engage in day to day activities. Access to
toilet facilities is of paramount importance to provide the reassurance
people need when away from home, and to minimise the disabling
impact of IBD. Our Association has developed a "Can't Wait"
card which members can show when they suddenly need a toilet and
are not near a public facility, but this is discretionary and
can not be relied on. NACC members have expressed their concern
about the closure of public facilities (numbers of which have
halved in a decade from 10,000 to 5,000. vii) and fear that other
Government initiatives to improve their participation in daily
life could be undermined by these closures and any further decline
in provision. NACC would welcome any initiatives to increase provision,
including schemes to encourage shops, cafes, pubs and other businesses
to provide toilets to the public as well as paying customers.
REFERENCES
i DFT response to the Independent Strategic Review.
Moving Beyond the Blue Badge Review: Turning Evidence into Action.
January 2008.
ii NACC 2007 Survey of Young People with Colitis
and Crohn's Disease. Report prepared for NACC by Healthcare Solutions.
Data analysis undertaken by NSM Research.
iii NACC Survey May 2004 (unpublished)
iv The Strategic Review of the Blue Badge Scheme:
An independent report by Rob Smith 2007
v Ibid p29
vi DFT response to the Independent Strategic
Review. Moving Beyond the Blue Badge Review: Turning Evidence
into Action. January 2008
vii British Toilet Association
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