Written evidence submitted by Chron's
and Colitis UK
This response is made on behalf of Crohn's and Colitis
UK, the working name for The National Association for Colitis
and Crohn's Disease (NACC).
Charity registered in England Number 1117148.
Charity registered in Scotland Number SC038632
1. CROHN'S
DISEASE AND
ULCERATIVE COLITIS
About 240,000 people in the UK have Crohn's Disease
or Ulcerative Colitis, collectively known as Inflammatory Bowel
Disease (IBD). These are lifelong conditions that most commonly
first present in the teens and early twenties (mean age at diagnosis
is 29.5 years). In IBD, the intestines become swollen, inflamed
and ulcerated. Symptoms include abdominal pain, weight loss, tenesmus
(constant urge to have a bowel movement), diarrhoea (sometimes
with blood or mucus) and tiredness. Symptoms vary in severity
from person to person and from time to time and may flare up or
improve unpredictably. These symptoms can occur independently
of the patient's coping ability and may change significantly over
time, regardless of the patient's actions or other interventions.
Consequently, people may have a pattern of moving between work
and benefits according to fluctuations in their disease and the
severity of their symptoms. Between 50% and 70% of patients with
Crohn's Disease will undergo surgery within five years of diagnosis.
In Ulcerative Colitis, lifetime surgery rates are about 20-30%.
2. CROHN'S
AND COLITIS
UK
2.1 Crohn's and Colitis UK is a major UK charity
offering information and support to anyone in the UK affected
by these conditions. Established in 1979 as a partnership between
patients, their families and the health professionals caring for
them, the charity's services include four helplines, a website,
a wide range of accredited information sheets and booklets and
a nationwide network of locally-based Groups. The charity raises
awareness of these little understood or known conditions, campaigns
for improved care for patients, and funds vital research.
2.2 Crohn's and Colitis UK currently has nearly 31,000
members. Membership is open to people who have Ulcerative Colitis
or Crohn's Disease, their families and friends, health professionals
and anyone interested in supporting the work of the Association.
Our response is based partially on research and survey results
as well as on the anecdotal experiences of helpline staff who
respond to approximately seven thousand queries annually.
3. SUMMARY
3.1 Crohn's Disease and Ulcerative Colitis are little
known or understood conditions affecting about 240,000 people
in the UK. Consequently, we are concerned that people living with
these conditions are at risk of being disadvantaged by an oversimplified
system which embraces conditionality and is firmly rooted in making
work pay, without a recognition of the limitations imposed on
people by the nature of their medical condition.
3.2 In our response to the DWP consultation document
21st Century Welfare, Crohn's and Colitis UK welcomed proposals
aimed at a fairer system to redress the complexity of the system
and the emotional stress and anxiety caused when people move between
benefits and work. However, this White Paper doesn't appear to
have addressed our main concerns, which can be summarised as:
- over simplification;
- conditionality and sanctions;
- extra support for people with disabilities; and
- access to free prescriptions.
4. OVER-SIMPLIFICATION
4.1 Whilst Crohn's and Colitis UK welcome any attempt
to redress the issue of complexity within the benefit system,
particularly with the introduction of the single application form,
there are concerns that the system presented here is one of over-simplification.
The application process, and the subsequent assessment, must adequately
measure the individual's specific needs and an over-simplified
system will make this very challenging for people with IBD who
are required to present the multi-faceted impact of their condition.
A failure in the system to gauge such information has the possible
consequence of unsatisfactory decisions and as a result an increase
in appeals, the cost of which will undermine the reduction in
administrative costs and burdens.
5. CONDITIONALITY
AND SANCTIONS
5.1 The importance of an appropriate decision being
made is amplified by the introduction of stricter conditionality
and sanctions. Whilst Crohn's and Colitis UK welcome a personalised
approach to conditionality and acknowledge the benefits this may
have in allowing the DWP to respond flexibly to the recipient's
needs, we have significant concerns about the delivery of appropriate
conditions. The latter relies heavily on the responsible adviser
and their knowledge of IBD when formulating the claimant commitment
that is reasonable for the individual. Consultation with the individual
is also imperative to ensure that the expectations outlined in
the claimant commitment are reflective of the specific needs of
the recipient. However, training and support for advisers is required
to ensure that the disease and the needs of patients are adequately
interpreted and considered.
5.2 The standards set out in the claimant commitment
are likely to depend largely on the initial assessment. Proposals
to assign extra conditionality for recipients of JSA are likely
to have a disproportionate impact on people with IBD, who often
find themselves placed on JSA due to difficulties arising from
the work capability assessment. The significance of the initial
decision, and the subsequent conditions assigned to the individual,
are exacerbated by proposals to introduce tougher sanctions. Firstly,
the statement that "having strong and clear sanctions are
critical to incentivise benefit recipients to meet their responsibilities"
signifies a fundamental lack of understanding of IBD and its impact
on the individual. The unpredictable and fluctuating nature of
IBD can, at times, significantly undermine the individual's capacity
to undertake the activities expected of them. Thus, for the majority,
the problem is not one of incentive and imposing sanctions on
an individual whose illness constrains their ability to meet their
conditions is inappropriate and ineffective. This reinforces the
importance of ensuring the specific needs of the individual are
captured in the claimant commitment, and that matters such as
flexibility and adequate communication channels are accounted
for.
5.3 Proposals to replace hardship payments with loans
present a major concern particularly for people with life-long
conditions such as IBD. The statement that this replacement will
"help incentivise people to meet their commitments"
is again indicative of a lack of understanding of IBD and its
effects on patients. For those people with IBD whose condition
restricts their ability to meet the expectations of their claimant
commitment, harsh sanctions may result in the need to acquire
a hardship loan. The consequence of this process is likely to
be an exacerbation of the economic difficulties already encountered
by many people attempting to manage a chronic illness. Loans are
therefore inappropriate for those people with life-long and fluctuating
conditions who have no control over when or if their condition
is likely to flare up and render them unable to work.
6. EXTRA SUPPORT
FOR DISABLED
PEOPLE
6.1 Crohn's and Colitis UK welcome any additional
assistance for disabled people, such as the additional financial
resources attributed to disabled people in excess of the basic
personal amount. However, linking this to entitlement for Disability
Living Allowance is problematic for people with IBD, many of whom
are turned down for this benefit because the disabling symptoms
of Inflammatory Bowel Disease fall outside of the eligibility
criteria for DLA. In order that the DWP achieve the "fair"
system they aspire to, the assessment process will need to account
for conditions of which there is currently little understanding,
such as IBD, to ensure that these additional awards are fairly
distributed across all groups who need them.
6.2 Proposals to provide encouragement and support
to people considering a move into self employment could be very
beneficial to those people with IBD who feel this type of employment
would assist in finding a balance between work and an unpredictable,
fluctuating condition. In addition, plans to hold open an individual's
account for some time after the transition into work are welcomed.
However, the suggested time period of three months may need to
be explored further, particularly with fluctuating conditions
in mind and for people with conditions such as IBD, for whom the
majority will need hospitalization and/or surgery at some point
to treat their condition. Furthermore, the additional support
that will be granted to people moving into part-time work will
assist those with long-term conditions who find this type of employment
will allow them to better manage their condition as opposed to
entering full-time work. Nevertheless, as responsibility for determining
what support is necessary falls with the Jobcentre Plus adviser,
a thorough understanding of IBD will be necessary to guarantee
an informed decision.
7. FREE PRESCRIPTIONS
7.1 Neither Crohn's Disease or Ulcerative Colitis
are conditions which entitle patients to free prescriptions, despite
the fact that many people need life-long medication to control
their illness and protect them from potentially life-threatening
complications. Crohn's and Colitis UK are campaigning for a reform
of the current criteria to include all long-term conditions such
ad IBD however, in the meanwhile, we are concerned by proposals
to overhaul the rules on access to passported benefits such as
free prescriptions and ask that any changes to entitlement are
informed by and meet the needs of people living with such conditions.
8. CONCLUSION
8.1 Crohn's and Colitis UK are concerned that these
proposals are based on an underlying lack of understanding of
the needs and experiences of people with Inflammatory Bowel Disease
and the effect that these conditions have on their capability
for work. Consequently, there is a risk that people living with
Crohn's or Colitis will be further disadvantaged by an oversimplified
system which embraces conditionality and is firmly rooted in making
work pay, without a recognition of the limitations imposed on
people by the nature of their medical condition.
8.2 Crohn's and Colitis UK welcome the commitment
made to work with patient organizations such as Crohn's and Colitis
UK. We would be willing to work with the Department to raise awareness
of the experiences and needs of people living with IBD, to inform
a system which recognises and is responsive to the limitations
imposed on them by their condition. We are currently undertaking
a comprehensive study exploring the relationship between IBD and
work, and would welcome the opportunity to share our findings.
December 2010
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