This presentation by Professor Adrian Edwards and Dr Freya Davies from the Institute of Primary Care and Public Health at Cardiff University looks at the experiences of patients, carers and clinicians at the stage of transition to SPMS. It was presented at the MS Trust Annual Conference in November 2014.

2.  Introduction to our research
 Methods – What we did
 Presentation of results – Key themes for patients,
carers and professionals
 Practice Implications – Breakout activity
 Translating our results into recommendations
 Your feedback on our suggestions

3.  Known to be difficult for clinicians to
confidently identify(1)
 Known to be a potentially difficult stage for
patients(2)
 BUT little research has looked specifically at
the experiences of patients(3), carers and
clinicians at this stage

4.  Identify the support needs of patients with MS
around the transition
 Identify the support needs of their carers
 Identify the educational needs of health care
professionals working with patients at this
stage

5.  Cardiff MS database(4)
contains details of over
2200 patients with MS
 Collects information
from clinical encounters
on disease course,
relapses and EDSS
 Supplemented by an
annual patient
questionnaire
Time to reach SPMS in years
Years
Solid line = adult onset
Dotted line = paediatric onset
Median time in years to reach
SPMS shown (5)

6.  Semi-structured interviews with patients, carers and clinicians
 Focus groups for validation of initial findings with patients
and carers
 Written validation exercise with clinicians and educationalists

7.  Twenty patients were interviewed, eight also
attended a focus group
 Aged 33-67
 75% female
 6-34 years since diagnosis
 EDSS 4 – 7.5
 Clinician diagnoses of RRMS, SPMS and SPMS
with relapses

8.  Thirteen carers were interviewed, 1new carer
attended a focus group
 Aged 36-76
 8 male, 6 female
 Relationship to person with MS = 8 partners,
4 parents, 1 sibling, 1 close friend.
 Time as a carer = 4-37 years

9.  2 Consultant Neurologists
 3 MS nurses
 1 Neurophysiotherapist,
 1 Occupational therapist (Neurology)
 1 Neuropsychologist
 1 District nurse
 1 GP with an interest in neurology
 1 Social worker

10.  Qualitative thematic analysis
 Three groups initially considered separately
 Patient and carer data analysed together due
to significant overlap
 Health professional data analysed separately

12. Disease
Progression
Realisation
Reaction Reality
Recognising
future
challenges
Support
Supporting
yourself
The support
network

13. P008: I knew over time
because I couldn’t walk as far
as I used to, just slowed down
a bit, so I knew it was
happening, I was well aware of
it really.
P013: Then I go to my next
appointment, and I have this
[clinic letter] from that
appointment. I nearly froze in
my boots when I read it.
Secondary progressive multiple
sclerosis.
They never told me I had that.
So that was very shocking.

14. P038: …he [neurologist] said I don’t
need to see you anyway, and you don’t
need to have annual MRIs and you don’t
need to see the nurse every month, you
can see the nurse every 3 months
perhaps. And I thought okay, so I have
been shunted into this other group now
all of a sudden. I don’t know why. No-
one has told me why.
P044: I suppose at my
stage it doesn’t really matter
whether I am relapsing
remitting or secondary
progressive I suppose…it is
what it is sort of thing. And
I’ve learnt to manage it as
best I can.

15.  A gradual personal realisation may occur
before discussion takes place
 Appears to be facilitated by prior knowledge
of the likely disease course
 A more sudden realisation may cause a more
marked emotional reaction
 A lack of understanding about how the
‘diagnosis’ is made heightens confusion

16. C017: If it was one thing, if it
was her legs or if it was
neuralgia or if it was not being
able to get out.
But it’s the whole sweep of it,
it’s the spectrum of it
P006: Well in the beginning
you feel like you’ve been thrown
on the waste, you know the tip,
to be truthful, because I am of an
age where I had the work ethic
drilled into me

17. C017: it’s like living your life with a
weight on your back all the time, we
can’t do, we can’t plan anything,
because we don’t know what it’s
going to be like tomorrow
PO18: …with the future I try not to
think about it. I do think “Oh God, I
just want to be able to walk.” I think
if I was in a wheelchair all the time
and couldn’t walk and it’s taken that
other little bit of independence from
me, I don’t know what, I don’t want
to cope like that

18. Person with
MS
supporting
herself
The patient-
carer
relationship
The people
around you
Healthcare
Experiences
Peer support

19. P006: …I do a lot of yoga. So that
keeps me sort of mobile. It keeps
what I’ve got going, going. It’s
important to keep what you’ve got
P023: …it can get to me but I’ve
decided not to fight it.
Just to swing with it, climb over
fences, and adapt to it as far as I
can. And not let it beat me

20. C028: We only tend to ring her [MS
nurse] when it’s important. We
appreciate how busy she is and how
understaffed they are, but I’d say this;
when she does come back to you, she
gives you 100 percent
P13: I walk up and
down the corridor for so
many minutes and they
watch that. I don’t
understand what I’m
meant to do with that
when I go home
P022: when you are first
diagnosed you get a lot of
help, afterwards you just get
left alone, nobody does
anything and you have to
keep going on and on
saying I want this, I want
this

22. The
transition
Recognition
Discussion
Impact
Professional
educational
preferences

23. Providing
Support
Personal
challenges
Working
with others
Service
constraints
Supporting
carers

24. HP33: it takes a while to
know for definite if they are
in transition (nursing)
HP014: I think most of us don’t
mention it when you first think
they’re probably transient, you
probably wait a bit, until you’re
sure that they are, which may be a
bit late. And that’s part of our
anxiety I think about the
uncertainty, because we can’t
stick them in the MRI scanner and
have a result from [radiologist]
saying this person is now
progressive (medical)
HP035: maybe as
healthcare
professionals we don’t
want to accept that
conditions change
(nursing)

25. HP026: what I see in clinic is,
like, a shrug of the shoulders or,
‘it is what it is’, so there’s kind of
that resignation to that
(allied professional)
HP035: I think patients don’t
understand necessarily that relapsing
and remitting MS is likely to change
into secondary progressive MS and I
think they have quite a difficult
transition period because they, for
want of a better word and I put it in
inverted commas, they “panic”
(nursing)

26. HP014: I think it is very
difficult when someone is
relapsing to talk the sort of
doom and gloom (medical)
HP033: I don’t
suppose we
prepare them
(nursing)
HP032: it’s trying to word it without
frightening them, I know that like the
booklets [say] “they accumulate
disability slowly over time,” well that
sounds good, but not when you’re
trying to tell someone that (nursing)
HP34: Yeah it forces
me to be a bit more
kind of honest with
patients because I
know they are going to
get the exact clinical
letter (medical)

27. HP34: You still need
your part scientific
evidence as well as
“this is what I did and
it seemed to work”
(medical)
HP015: I think it is
really good to co-
work with people, I
think you learn a lot
(allied professional)
HP41: I think it’s harder to motivate yourself,
to say for this half hour, I’m gonna do that e-
learning, the phone rings, you’ve got
something else that needs doing, whereas if
you go to training, you’re there and nothing
else can happen …so for me, I much prefer
face to face
(allied professional)

28. HP034: as a
doctor you feel if
you offer them a
tablet then
somehow that
helps you feel
better at least
(medical)
HP009: some
people you can
sort of keep on
about things, you
need to do this,
and you need to do
this, and it is like
hitting a brick wall
(allied
professional)
HP015: I
probably ought
to signpost
people more
instead of
doing it all
myself
(allied
professional)

29. HP014: I don’t think you
can do it on your own. If
it’s just me in a clinic on
my own it wouldn’t work.
I need the nursing staff,
and the OT and the
physio (medical)
HP40: I think it is very easy
to just say go and talk to an
MS nurse about it. Having
said that, at the MS team
often they are much more in
tune with their particular
type of patient, so you could
argue that they might
provide a better service than
the GP anyway (medical)

30. HP014: So I think it would
have to be a bit more
flexible, so you’d have to
have it at a place they can
get to, at times for
someone who is working,
especially for the
transitional phase
(medical)
HP40: … it’s hugely limited
in terms of counselling
support (medical)
HP009: …so they do like a monthly
Parkinson’s day in the day hospitals. There
isn’t that for MS and I think that would pay
dividends. Cos you would be able to keep an
eye on people and just support them as they
go along. But we can’t offer that here (allied
professional)

32.  Recognising and discussing the transition
◦ How do you do it now?
◦ Who is involved?
◦ What works well and what doesn’t?
◦ How could it be done better in your service?
◦ What would you like to change?

33.  Promoting patient engagement with self-
management
◦ What strategies have you used in the past to
encourage patients to become more engaged in
managing their own health?
◦ What works well?
◦ What should be avoided?
◦ Your top tip for others?

35.  What could help patients
 What could help carers
 What could help clinicians

36.  Information on how SPMS is confirmed, what it
means for them and what they can do now
 Tools to help them get the most out of their
appointments
 A range of information and support services to
allow patient choice
 Help to keep active
 A directory of local services

37.  Recognition carers’ information needs do not
always coincide with patients’ information
needs and they may not ask for help
 Opportunities to access information and
support when they need it
 Knowledge of how support someone with
invisible symptoms (fatigue, cognition,
personality change)

38.  Symptom specific management advice for
dealing with symptoms ‘without solutions’
 Communication skills in assessing patient
information needs and breaking bad news
 Self-management support training
 Strategies for providing psychological
support

39.  Protected time to learn
 Tailored to meet personal learning needs
 Multi-disciplinary in nature
 A combination of interventions :
◦ Knowledge based interventions – reading, e-
learning, small group work, case discussions.
◦ Skills based interventions – hands-on workshops
◦ Reflective practice– case discussions, mentoring.

40.  Facilitate continuity of care
 Provide a range of support services to
increase flexibility and patient choice
 Provide simple high-quality reliable sources
of information
 Increase availability of psychological support

41.  Thanks to all the patients, carers and health professionals
who participated in the study
 Study advisory group members
 Fiona Wood, Cardiff University
 Neil Robertson, Professor of Neurology, C&V UHB
 Rhiannon Jones, MS Specialist Nurse, C&V UHB
 Gayle Sheppard, Data Manager, C&V UHB
 Kate Brain, Cardiff University
 Rachel Wallbank, Specialist OT, C&V UHB
 Michelle Edwards, Swansea University
 Barbara Stensland, Patient Representative
 Rebecca Pearce, MS Society
 Tracy Nicholson, MS Trust

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