Hepatitis C Needs
Assessment
Findings from focus groups
Methods
• Views of service providers sought using
focus groups and one-to-one interviews
• Participants asked to consider the
patient journey from testing to treatment
and to discuss:
– Needs of their clients
– Barriers to progression along patient
pathway
– Solutions to overcoming the barriers
Recruitment
• 9 key informant groups identified
• 43 service providers identified and
invited to participate
• 29 (67%) of those invited took part in
the study (25 in focus groups, 4 in
individual interviews)
• 8 health board areas represented by
those providing local services
Data collection and analysis
• 5 focus groups and 4 interviews
conducted over two week period
• Focus groups multidisciplinary
• Focus groups lasted 90 – 120 mins
• Sessions recorded and transcribed
• Transcriptions and tapes analysed for
recurring themes
Composition of focus groups &interviews
Participants in each focus group / interview
Informant
group
Focus
Group 1
Addictions /
Harm
Reduction
1
Focus
Group 2
1
1
1
GP
Lab Services
1
Tel 2
Tel 3
Face
to
face
2
1
2
1
1
1
4
5
1
4
2
1
1
4
1
2
Scottish Prison
Service
Social Care
1
Total
1
1
3
Tel 1
2
1
Voluntary
Sector
Focus
Group 5
2
Public Health /
MCN
Total
Focus
Group 4
1
Clinical Nurse
Specialist
Consultant
Physician
Focus
Group 3
4
1
3
2
1
7
5
3
1
6
1
1
1
1
29
Findings
•
•
•
•
Identified many barriers to retention and
progression of clients along care pathway
Recommendations made as to how these might be
overcome
Participants found process of focus groups useful
Findings can be categorised into 7 main areas:
1.
2.
3.
4.
5.
6.
7.
Testing and diagnosis
Knowledge of HCV
Partnership working
Specialist services
Support services
Prison services
Resources
Testing & Diagnosis: Barriers
• Need for venepuncture
– Poor venous access
– Lack of trained staff
• The testing site
– Limited access
– Not appropriate for client
• Lab delays
– Up to 4 weeks
– Difficulties getting result back to client
• “..one of the worries we all have is the patient not
getting the result, because we all know that this
isn’t a group of patients who hang around the
system for too long. In hospital services, maybe if
they are in-patients they will be out-patients by the
time the results come back and then they don’t
come back to the clinic” Consultant physician
• “It’s not acceptable to the patient waiting for four
weeks to get an answer. I can tell you from that
point of view, definitely it’s not!” Voluntary sector
rep
Testing & Diagnosis: Barriers
• Hard to reach populations
– New / Chaotic drug users
– Ex drug users
– Never drug users
• Stigma
– Similar to HIV
• Perceived need for specialist counselling
“..we need to break down this stigmatising view of
HIV and I think that we need to try and bring that to
bear on hep C as well, because there are very
many similarities about it: it’s stigmatising, it says
something about someone’s lifestyle etc etc. But we
don’t want to have the barriers to testing that were
previously associated with HIV and that we’re now
trying to break down.” Consultant physician
“I think they [health professionals] do get hung up on
the counselling side of things. It is important to get
the relevant information across, but sometimes it
does frighten practitioners away from wanting to
test, you know, because they don’t feel they have
the skills.” Scottish Prison Service rep
Testing & Diagnosis: Solutions
• Increase access
– Provide more and varied test sites
– Train more staff in venepuncture
– Introduce oral fluid testing
• Normalise testing
– Bring into the mainstream
– Become part of standard GP or nurse
consultation
– Move away from concept of pre-test
counselling towards pre-test discussion
Testing & Diagnosis: Solutions
• Primary care key role
– Opportunistic testing
– GP may be only contact with health services
• Target hard to reach populations
– Outreach testing
– Use GP and addiction services’ patient
records
• Reduce laboratory delays
– Good computer links
– Local PCR testing
Knowledge of HCV
• Lack of knowledge (clients and services)
– Acts as barrier at all stages of pathway
– About the disease, the risks, the test and the
treatments available
• Misinformation (clients and services)
– What hep C diagnosis means
– Who will get treatment
• “I don’t think that there is a general awareness that
there are effective treatments around. I think that
people would be more motivated to come forward
for testing if they thought there was some possibility
of a cure.” Social care rep
• “..an important barrier to testing is, whether it’s GPs
or whoever else that is considering testing an
individual, that they fail to offer them a test or they
discourage them from being tested because their
perception is it’s not in their best interests to know
their hep C status…..if it is positive you’re better off
not knowing…you’re not going to get treatment
because of your lifestyle.” Consultant physician
Knowledge: Areas to address
• Improve health professionals
understanding of:
– Who to test
– How to interpret results
– When to refer to specialist services
– The role of addictions, social care
services, and the voluntary services
Knowledge: Areas to address
• Increase awareness about risk factors
“..there are several thousand individuals in Scotland
with undiagnosed hep C who have never had a
history of drug injecting or sexual contact with drug
injectors, who would never, ever consider
themselves to be at risk of hepatitis C. And I think
that’s a particularly difficult to reach group when it
comes to testing.” Consultant physician
Knowledge: Areas to address
• Improve clients’ understanding of HCV
– Not a death sentence
– Effective treatments available
– Ongoing drug / alcohol use not absolute
contraindication to treatment
“..we certainly see a lot of people who come and they
say ‘I know I’ve got hep C’. They’ve never been tested,
they’ve just got this fatalistic attitude, so they don’t
come forward for the test.
It seems sensible, if you’ve got a group of people who
believe they are infected with a virus and a lot of them
think it carries a death sentence, if you tell them
‘you’re not infected with it, and here are ways of
preventing it’ then they might take that on board.
And whenever people are discussing the treatment,
then they should be emphasising that there is a way
out of this and the diagnosis of hep C is not a terminal
diagnosis”
Consultant physician
Partnership working
• Crucial at every stage of pathway
• Services often work in isolation
– Duplication of effort
– Clients fall out of care pathway
• Need improved communication and
clear referral routes between services
Specialist services: Barriers to attending
• Up to 50% clients fail to attend first
appointment, others drop out later
• Barriers to attending
– Chaotic lifestyles / competing priorities
– Referral and appointment systems
– Lack of incentive to attend
• “I think [to keep clients in the system until
treatment] there is something about trying
to meet as many as possible of the diverse
needs that the individual has got in the one
place. The more needs people are getting
met, the more incentive they’re going to
feel to come along there. Whereas if
people are feeling, well they’re just getting
their blood monitored and it’s more or less
the same every time they may not feel that
motivated to appear.” Social care rep
Specialist services: Barriers to attending
• Access problems
“..I mean this really is a disease of poverty, everything
is geared around having a car, and a lot of them don’t
have a car. And the problem with transport in
someplace like [name of health board], to come to our
unit by bus - you could easily spend two hours doing
that.” Consultant physician
• Prisoner transport arrangements limit
number who can attend at any one time
Specialist services: Solutions
• Good links into drug, alcohol & social care
services
• Increase accessibility
– Patient transport service
– Satellite clinics e.g. GP surgeries and prisons
• More flexible approach to referrals and
appointments
– Multiple inward referral routes
– Telephone / text-based appointment systems
Specialist service: Solutions
• Specialist nurse outreach services
– Already introduced / being piloted
– Lots of support for this model of care
– Allows client and nurse to build up
relationship / trust
– Can monitor in community until ready to see
consultant
– Facilitates relationship between specialist
services and other agencies
• “…they [the clients] can’t get themselves
together to come to a clinic at a certain time and
a certain place. And we have them turning up a
week later or a week beforehand; wrong clinic,
wrong hospital. So they’ve attempted to come
along but not made it, but the system then kicks
them out because we’re not allowed to have
such flexibility in the service. So I think that has
been helped by the outreach service, and trying
to get people up to speed before they even
come along to the clinics.” Consultant physician
Specialist services: Barriers to treatment
• Starting treatment:
– Chaotic lifestyles
– Fear of side-effects
– Access to pre-treatment psychiatric
assessment
• Completing treatment
– Drop-out rate historically low, but likely to
increase
– Principal reason, at present, is side-effects
“It’s certainly been my experience so far, that by the time
someone gets to start on treatment, their level of
commitment – to see that treatment succeed – is
enormous. Now, it may be that patient selection plays a
huge part in that” Consultant physician
“we are now treating a lot more difficult to engage people
than before and the numbers the nurses can actually
run through the system has reduced. They’re becoming
more and more time consuming because they do have
social issues, they do have other dependency issues.
Whereas previously we had a 98% attendance rate that
has gone way down as we’ve expanded the criteria for
people to come into treatment.” Consultant physician
Specialist services: solutions
• Peer support / buddy systems
“What the patient really benefits from is having a
sort of buddy system. Someone outwith the medical
or nursing profession who they can rely on to turn to
and be there during the day or during the night or
the weekends. And we’ve found people who have
got a good social network, or who’ve got some
buddy identified, they do a lot better through
treatment.” Consultant physician
Specialist services: solutions
• Improve access to pre-treatment psychiatric
assessment
• Improve access to other specialists during
treatment to manage side-effects
“[Hepatitis C] impinges on so many specialities that
you can’t have everybody at your clinic – you can’t
have an ophthalmologist for the once a year you’re
going to use them. But perhaps there should be
some fast track ways in and if, as a group, we could
make some recommendations out to those groups –
that might be beneficial.” Consultant physician
Support services
• Many clients chaotic lifestyles
– Major barrier to entering and remaining on pathway
• Require significant social support
– Provide from early stage
– Social work input important
• Currently limited
• Support for development of dedicated services
– Voluntary agencies
• Major role in supporting patients
• Peer support and information outside clinical setting
• Limited provision outside major cities
• “But we also know that their treatment depends on
getting their physical environment much improved.
It depends on getting re-housed, it depends on
getting help and support services and a whole
bunch of stuff – if they’ve not got that they are not
going to comply with treatment.” Addiction
services rep
• “I mean, if we could have that [social work input to
specialist clinics] it would be excellent to actually
be able to follow these things up. Cos if we have a
problem, we have to go all round the houses and
by that stage the person’s pissed off and they’ve
decided they’re not having any more of this and
they’re out the door.” Consultant physician
Prison services: Barriers
• Short sentences / remand prisoners
– Released before result available or
patient seen be a specialist
– Difficult to follow-up
• Move to another area
• No GP
– Some prisons wont test if < 6 months
to serve
• “What we have got to do better is get people
established who stay a shorter and shorter time.
At the moment we are only really trying to cut into
the burden of care for people who stay long
enough to stabilise, get the offer, get tested, onto
specialist services, get established – that takes a
long time. We are shrinking the time, but I think
we’ve got to shrink the time now to testing and
give them some assurance that when they go out
after a short time they will get seen and attended
to.” Scottish Prison Service rep
Prison services: Barriers
• Movement of inmates
– Transfer between prisons common – often
related to security / overcrowding
– Health not seen as priority
– Across health board boundaries / at short
notice
• “Our difficulty is that we will get patients worked up
from the prisons and then we find out, either the day
we start their treatment, or within two or three weeks
of starting up, they’re moved somewhere else. And so
mobility of patients within the prison service is a major
issue for us. They are totally disadvantaged by the
rapid movement circling around the prison system.”
Consultant physician
• “Sometimes it can just go totally pear-shaped. And
even with the best will and the best planning in the
world, things change, and they can change so quickly,
and people move for security reasons.” Scottish
Prison Service rep
Prison services
• Solutions
– Better links / improved communication between
short stay prisons and primary / secondary care
– Place short-stay prisoners in their own community
– Better communication between prisons themselves
– Undertaking from prisons not to move patients on
treatment / give adequate notice
• Progress being made
– Health higher up prison service agenda
– Introduction of IT system across prisons
“We are in the early days, but health is more and more
on the map in terms of prisons and, hopefully, more and
more a feature or a factor in the decision to move people
around the estate. The other thing we are trying to do for
people staying less long with us is locate them in their
community prison. But overcrowding, it’s one of the
worst effects, overcrowding, in terms of the health care
of the people. You cannot say to the prison service to
keep them there because ‘I’ve got a very good reason’ –
because they have a much better reason: that person
needs a bed tonight and if it’s not this, it’s a mattress in
the gym. They’ve go to do their job, and we’ve got to
influence their decisions, especially when they matter.”
Scottish Prison Service rep
Resource
• Need to match resource with any plans to
increase testing
– Specialist services already at capacity
– Patients with more complex health and social
care needs entering care pathway
– Voluntary agencies already limited capacity to
support those known to have hepatitis C
– Further development of dedicated HCV social
work / prison services will require adequate
funding