This document summarizes interviews conducted with tuberculosis (TB) patients and healthcare providers in the UK. It describes some of the challenges patients face, including long treatment durations, side effects of medications, stigma, isolation, feeling overwhelmed, and impacts on family plans. The IMPACT study aims to provide personalized support packages to help patients better adhere to TB treatment regimens compared to standard care, which focuses on risk assessments and monitoring but does not directly address issues like believing one has TB or medication side effects and stigma. Interviews highlight complex patient experiences with diagnosis, treatment challenges, social determinants of health, and quality of life impacts of having TB.

1. Voices from the Front Line:
TB patients & healthcare providers
in the UK
World TB Day 24th March 2020
The IMPACT study

2. Context
• Tuberculosis is still an issue in the UK, with 4,700 new cases each year
• Treatment lasts a minimum of 6 months, and may be longer if there is drug-
resistance or other complications
• Drugs often have side-effects, and patients can struggle to take their
medication regularly during this time
• The “Intervening with a Manualised Package to AChieve treatment adherence
in people with Tuberculosis” (IMPACT) study uses a mixture of approaches to
develop a personalised care package for UK TB patients, to see if this improves
adherence to treatment better than Standard Care.

3. What is Standard Care for TB?
• A named case-manager is assigned for the duration of treatment
• When preparing a patient to start treatment, the case-managing nurse conducts
a structured risk assessment to determine the chance of non-adherence - this is
to see how likely it is that the person will need help with taking their treatment
• This risk assessment is used to decide which measures may help the patient
complete their treatment
• Examples of these measures are shown on the next slide:

4. Measures available to support patients through treatment
Formal measures Informal measures
• Additional contact | Extra phone calls or visits
• Dosette box | A labelled box or container, with each
day’s drugs in an individual compartment.
• Video observed therapy (VOT) | The patient videos
themselves taking the tablets and sends it to a health
care worker
• Directly observed therapy (DOT) | A health care worker
watches the patient take their tablets, either at their
home or in the clinic
• Voluntary hospital admission | May be offered if the
person is contagious and may pose a public health risk
• Public health section | Compulsory detention in hospital
on grounds of risk to public health
• Building trust and developing strong
relationships between the patient and their
TB team
• Involving friends & family in care
• ‘Incentive funds’ | Used to cover minor
expenses, such as bus fares
• Coordinating improved or increased social
support

5. This Standard Care package does not directly address some patient issues, such as:
• The patient doesn’t believe they have TB, so may not see the point in
medication
• The stigma associated with TB and the side-effects of medication can reduce a
patients’ ability to complete treatment
The IMPACT Study aims to provide solutions to these issues
What the IMPACT Study is doing

6. Voices from the Front Line
In order to understand the concerns of people whose lives are affected by
TB we conducted interviews in London, Southampton, and Edinburgh,
with:
• a range of health care providers,
• adults who had been or were still being treated for TB, and
• individuals who had cared or were caring for an adult with TB.
The rest of this presentation contains extracts from interviews reflecting
these experiences.

7. Experiences of people treated
for TB

8. Patient (male, 20s), Southampton
Becoming unwell
I'm from China. [...] I had a very high fever, and, so the highest degree is around 40 or something. I think it's
like, 39.7, that was my personal record. So and I remember that time, one night feeling so bad, and I called
this 1-1-1 service, and they told me, like, I have to wait until the morning so that they can arrange for me to
see the doctor.
So then, in the morning, they call me and - but I was feeling better, so I thought, “It's OK”. So I thought, “I'm
better, so I don't need to see a doctor”, but the fever kind of persist for, like, one week. And after the week,
everything's kind of go back to normal. I have a bit of cough. I coughed for probably, like, 1, 2 weeks. I felt
this is not good, so I went to see my GP, and because I did some research online, it says it might be you know
even something like lung cancer. And I was so scared. I was so scared. I was so scared. And I also suspect
that I might have TB, because I'm from a country where like a lot of people who have TB.

9. Patient (male, 20s), London
Waiting for a diagnosis
So first I started getting like a fever and headaches and stuff. So I thought it was just normal.
So I waited for a few weeks before going to the GP. Then when I went there they said, they
said that - they didn't give me any medication, because they thought it was just, like, a normal
cold.
Then a week later, I went again, because I didn't feel any better. So then they gave me
antibiotics but I used it and I had no improvement.
So then they referred me to the hospital for an X-ray. So then they found out I had TB. So it
was a pretty long process. I had to go to the GP. They kept saying, 'It's nothing'

10. Patient (male, 20s), London
Complexities of diagnosis and treatment
So I started getting a rash everywhere. I was really itching, it was really bad as well. So I had to
go back in for a week to get it under control and then they figured out which one I was allergic
to so they changed it up. And at the same time they found out I was resistant to one of them,
so they had to change that as well. OK.
So at first they said my treatment would be six weeks, then they said six months, then they
said a year, then they said 18 months.
...then they did a brain scan and figured out it went to my brain as well. So that was like quite
difficult to hear as well, cause I thought anything to do with the brain's pretty serious. Yeah, so
then they said 18 months. Because there were so many things that were going wrong - it was
in the brain, I was resistant to one of them.

11. Patient (female, 30s), Edinburgh
Side-effects
The fact that I had to have like a handful of medicines every single day after I had those
medicines, I'd feel that the reaction in my body.
[I felt] pretty drugged. Most of the time, in the first two months because the combination of
drugs probably makes it worse or even, the potency of the medicines, I don't know what it is,
but that drugged feeling just doesn't leave you. Like the doctor said well it's usually the
medicines last for - the effects last for - about 24 hours and that's, that's why you'll have to
take it every day. But even after 24 hours I was pretty drugged.

12. Patient (female, 50s), Southampton
Side-effects
It’s awful - you have bright orange pee like Lucozade. I had a problem with my eyes - kept
getting funny vision - tunnel vision. Then I’d get floaters and I had quite a few tests done on
my eyes. They said something to do with the tablets... The joints, that was the worst thing –
knees, elbows, hips, everything. It was just ache and burn and you couldn’t do anything…

13. Patient (40s, male), London
Bigger problems than TB
I was living with friends. So, basically I was homeless that time, but I was living with friends,
sharing, and then... so... it contributed a lot to the existing problem.
Like, when you have TB and then you don't have your own private room, you sharing with
different people - some of them are working night shift, some of them are working day shift.
And what we are talking about is a three-bedroom house which is like, you cannot even sleep
well when you need. (…) I think at least six people [were living in the house].

14. Patient (40s, male), London
Stigma
Back in my country, and even in our community, nobody likes to hear about TB. There is a
stigma in having TB. And some people even when you say like, "I have TB“, they will be
reluctant to shake your hand...
So when I heard, like, the nurse told me, "You've got TB," I was thinking, "Ok, what will my
community think about that?" And I said, "Ok. Is this something - is it your fault, or is it
something that come to you?" And I said, "It's not my fault!" Even like my friends were telling
me, "Don't tell other people you have TB." But as soon as somebody asked me about my
situation, I usually told them, "I don't need to hide it - I have TB. If you want to run from me,
you can run! But this is - is me. I have TB."

15. Patient (female, 30s), Southampton
Isolation
[In hospital,] I felt so disconnected with everyone, I felt like there is something lost in here I
don’t feel like I am away from anyone at all, because my family used to come with me and
they cared for me every day. I was in a depressed state at that time. I used to watch some
comedy programmes to cheer myself up, I had to cheer myself up.

16. Patient (male, 50s), London
Overwhelmed
It's depressing. And you'd feel like saying, 'No, I don't want to do this anymore - I'll just face the
consequences'. But [support worker] said, 'No, just keep cool, you're nearly there, you've only got
about a week to go'. So after not even a week, I came up here - X-ray, they showed me it - 'You're doing
brilliant, you're nearly there'. [I said], 'Can I stop taking them, the white ones?' 'Yeah'. I said, 'Thank
you'. Because I was on the verge of saying, 'No, not taking these any more’. (...)
It's just, it's so depressing. You're having to sit indoors for about four hours before - you're waiting for
the person to come round with the tablets, and then, you know, you can't go out. Cos I don't want to
be walking on the high street and vomit coming up. People'll look at you, and next thing you know they
get the police on you. So I'm like, 'No, I gotta wait until I feel right'. It's soul-destroying.

17. Patient (male, 30s), London
Family
My family arranged the marriage. I planned to go in 2017, or 18, I planned to go to the India to
get the married. Suddenly they're telling this one, 'Oh you have the TB'. First I do, I called my
family, I didn't tell that I had the TB. They feel too much. After onwards I telling I don't want
married after give the two years, give the time, I telling like this. 'Why, what happened?' they
asking. But I didn't tell that I had the TB.
(…) After I called that my sister, I telling everything - I can't control, what happened. There
after I told my sister - I can't manage - I crying everyday. I can't balance the my back also. After
onwards they telling to my family also, whole family. That's why that - after, they stopped the
marriage.

18. Patient (male, 50s), London
Six months of my life
You gotta look on the bright side of life. But it was the coming to the end of it that really got
me down. You're just thinking, 'Oh, not this again', you know? You got to adjust your whole
life around taking these tablets. You know, things you wanna do, like, say if you want to work -
you couldn't go to work. Mates call round, right, go, 'Oh, let's go down to, say, the coast'. 'I
can't. I gotta wait for this thing'. [inaudible], so that was it, down to Southend, or Brighton or
somewhere. You just put your life on hold. (...) The longest six months of my life so far.

19. Patient (female, 30s), Southampton
Completing treatment is not the end
Now if someone coughs..I’m like..everything OK? In my head it is still there. I don’t know if it
will go away over time but it is still in my head. I did check the doctors about that but they said
it’s no chance, it’s very rare that it can relapse but it is still there in my head. I am always
checking my sputum or my kids sputum every time I cough or my children cough, Because the
sputum gets really yellowy and all that. Even my daughter has heard if from nurses so she’s
like..mummy that’s yellow! Please don’t say that! I am a bit scared of sputum and cough now.
Scared for life.

20. How to look after people with TB

21. TB Nurse, London
You assess
So, we have a process that we go through and we try and assess the level of support that an
individual require getting through its treatment completion.
Just a box ticking exercise, really, and this is where the skill of being a TB nurse lies. So, trying
to establish how likely a person is to comply with their treatment.
And so there's an art to that. (…) There's a whole group of reasons why they might need
enhanced case management. (…) [Some of these things] are not on the risk assessment form,
but they fit our criteria here, and so the TB nurses know that.
Or they might not fit any criteria, but the TB nurse might just think, “Hmm, not sure they’re
going to comply

22. TB Nurse, Southampton
You anticipate
Our role is trying to pre-empt problems before they arise

23. TB Nurse, Edinburgh
You build
…because we've got a long time to build a relationship – it’s slightly different from the ward,
where it’s meeting, and it’s very much, ‘you’re here to get better to go home’. Because I have
a long spell to spend with these people, and if I alienate myself at the start it's not going to go
well.

24. TB Nurse, London
You empathise
It’s quite a lot to present to someone isn’t it? Six months of medicine. And you’ll be on 12
tablets a day, or whatever. That’s a lot of medicine to take, isn’t it?...
We get to see the patient as a person. Not as the sufferer of a disease or an illness…
sometimes they do involve us in their lives at various levels, in terms of how they
communicate with us.

25. TB Nurse, London
You go ‘above & beyond’
…if someone's in front of you and they're hungry, that's quite frustrating, so having the
incentive fund so you can just take someone and buy them lunch; you can take them to a local
supermarket and just buy them a few days’ worth of food to keep them going until they get
their food bank voucher. People who are not keen to turn up to appointments, going up to
collect them and having money to get a taxi. For some people saying, ‘I'll top up your Oyster if
you come to the appointment,’ things like that can be really helpful. So, yeah, the incentive
fund is amazing. And it's really frustrating that it's not there at the moment.

26. TB Nurse, Southampton
You adapt to changes
I think the relationship between the case manager and the patient is what's key. So… some
people might start absolutely fine, but then things happen in their life which change their
adherence, and if the nurse manager doesn't have any relationship with a patient and she's
not going to know about, maybe, what's happening with that patient. But if she has a good
relationship with them – in regular contact – then I think she would be able to pick that up
quite quickly and then find another way of making sure the patient does take the treatment.
Because… things do change for people – it’s not always the case that when you first see them,
that's how they're going to stay through their treatment – things do change in people’s lives.

27. TB Doctor, London
You think about more than just medication
I mean I’m thinking of one chap in particular, who had a spinal TB and pulmonary TB.
I met him first as an in-patient in the hospital and between myself and TB nurses we kind of reached out
to the group – Find & Treat…
…He hadn't recourse to public funds for when we started out with him, but he's now been through a lot
of the visa paperwork… …and he's much more settled.
So there is some of what we can do - certainly in our TB MDT - I mean, not for everybody because
obviously, you know, but there are the people who are most bereft and most in need of things - there
are services that we can link them in with.
So we particularly we find we had a spate of patients who had no recourse to public funds, and we were
able to kind of guide them a little bit, and what they needed to do to address those.

28. TB Nurse, London
You keep them going
With TB, you can’t just go round and watch them take their medicines, you’ve got to let
everything else coming into the conversation as well. So, it starts with them taking their
medicines; a dozen other issues will arise while they’re talking to you, and you try and deal
with them – TB is often the least of their problems.

29. TB Nurse, Southampton
You do the small things
Yeah, [he] definitely [trusted me]… …You know I did things like, I took him food from the food
bank, I took him clothing, so I think the trust was quite quick, really, because I was willing to
help him with lots of things. If I’d just gone and given him the medicine, there wouldn’t have
been trust, but because I’d spent a lot of time with him and did a lot of stuff with him, I think
therefore there was the trust.

30. TB Nurse, London
You discuss
And so I tend to find that the people that need direct observational therapy are ones that
already know that their life is quite chaotic.
And I would discuss with them, which is why I bring up for example any family support, friend
support. They tend to have a quite chaotic lifestyle, and a lot of them do recognize that.
So I would discuss it in terms of providing extra support: “We understand that you know like
you have these life concerns etc, etc.. But we also need to make sure that we continue to get
better while we understand your life has this and this going on, but we need to make sure that
we continue with your medication. We will be a relationship together. We can monitor your
side effects and we will make your health our priority.

31. TB Outreach worker, London
You communicate
…I just turn around to them and say, ‘Yes, it is. Yes, there is a patronising element to it.’ And
that kind of like brought them round. Rather get into an argument, just acknowledge, ‘Yes it's
damn patronising. Yes, there is an element of this person coming to see you take medication
which is patronising.

32. Doctor, London
You look for other ways to help
I think there is a large psychological element…I think people need to have more support from
the TB nurses. The TB nurses are very busy and if we could give more psychological support to
remind people of appointments and to have a more holistic approach…
A lot of our patients are quite depressed about the fact they have TB…if you provide them
with some counselling to say they will get better. There are many patients especially patients
with spinal TB who can’t work

33. TB Nurse, London
You understand
That's why I would say I mean for a lot of people TB is their least of their problems. There's
concerns in terms of immigration, in earning money, and that's their concern - not being able
to work a significant thing of course.
We have quite a lot of contacts with people who have no recourse to public funds to have
contact with the voluntary sector, places they can eat, places they can sleep, that sort of thing.
They're not able to go to work, they can't earn any money, they can't pay their rent. (…)
There's a concern with Brexit, about you know their status of living in the UK is being a
registered person, so they're concerned about that as well.

34. TB Nurse, London
You do whatever it takes
As part of being a case manager, your whole role is to support the patient in getting through
to treatment completion, so you do whatever it takes.
If you have to ring them every day to remind them to take their tablets, you might do that.
You will go, you can go to see them at home.
You could do home visits once, or you could do it every week through their treatment. You get
to know that patient well enough to get them through to treatment completion, really.
We can incentivise them, we offer them social support… …we can offer them support with
finance, benefits, travel, mobile phone top-ups, food vouchers, even.

35. These and other interviews are now being used to develop
interventions for the next phase of the Study.
For further information, contact Marcia Darvell
(m.darvell@ucl.ac.uk)

36. Acknowledgements
We thank everyone in the IMPACT Research Teams from:
• University Hospital of Southampton NHS Trust
• Barts Health / QMUL
• NHS Lothian
• Royal Free NHS Foundation Trust / UCL
• The North Central London TB Service
This work was supported by the National Institute for Health Research (NIHR) Health Technology
Assessment Programme, UK grant number 16/88/06. The views expressed are those of the
author(s) and not necessarily those of the National Health Service, UK, the NIHR or the Department
of Health and Social Care.