This is a presentation of the results of the Care of Ataxia Patients (COAP) study, given by Dr Gavin Daker-White at the COAP study day in Manchester on 18 November 2011. It gives the views of neurophysiotherapists and patients with ataxia about the care of people with ataxia in the Greater Manchester region.

1. Views of neuro physios and
people with ataxia about
Physiotherapy in progressive
ataxia
Gavin Daker-White1, Caroline Sanders1, Katherine
Payne1, Julie Greenfield2, Helen Kingston3, Krystle
Kontoh4, and John Ealing5
1 University of Manchester; 2 Ataxia UK; 3 Clinical
Genetics, CMFT; 4 Genetic Alliance; 5 Neurology, SRFT

2. Summary
• Aims of this presentation
• Background – The Care of Ataxia Patients Study
• Overview of preliminary results from COAP
• The views of neuro physios derived from
qualitative interviews
 Methods / Sample
 The main problems faced by people with ataxia
 What can or can‟t be done?
 Expectations and outcomes
 Other issues
• The views of patients

3. caveat emptor
The focus of this presentation is on the views and
experiences of individual neurological physiotherapists
who have worked with people with ataxia
The purpose of this presentation is not to recommend
particular treatments. The findings of this study cannot
be used to suggest „what works.‟ That would require
properly validated studies of patient outcomes
There is a lack of evidence in this field (more about that
in Anita Watson‟s session this afternoon)

4. Components of the COAP study
• Qualitative interviews with 38 people with ataxia in
Northwest England
• Qualitative interviews with 25 health professionals,
including 8 neurological physiotherapists and 10
consultant neurologists
• A national survey of health professionals (in
progress)
• A health economics study of NHS resource use by
people with ataxia
• An examination of care pathways in ataxia as
compared with Ataxia UK‟s „best practice‟ guidelines

5. Patient Interviews: main themes
• The problems with an ataxia diagnosis (rare,
untreatable) especially when „idiopathic‟ =
Prognostic uncertainties
• The stigma of appearing or sounding drunk
• Although physiotherapy / physiotherapists were
mentioned in some of these interviews, this was
not a focus of the discussions
• There was a wide variability in terms of who had
seen a physiotherapist and whether
physiotherapy was viewed as helpful or not

6. Neurologist interviews: main themes
• The diagnostic pathway
• Involvement usually ends following the
diagnosis process (but not in ataxia specialists)
• The costs and yield of different diagnostic tests
• Different levels of diagnosis – definitive versus
„black box‟ diagnosis of ataxia
• Physiotherapy was commonly viewed as one of
the few management options available for
patients, although a minority of neurologists
were sceptical that anything could be done

7. The views of Neuro Physios
“I‟m a physiotherapist. I don‟t cure people. I help
them deal with the situation they‟re in”
(P3: 12: 233-234)

8. Methods - Recruitment
• Initially unsolicited recruitment emails were
sent to physiotherapy departments, neuro-rehab
units & community neuro-rehab teams
• Only 2 interviewees were recruited by this route
• Further invitations were sent out via Ataxia UK
to NW-based professional members. Others
were recruited by word of mouth.

9. The sample
• 2 x academic physiotherapists, research active in
neuro-physio
• 1 x specialist neuro physio based in an NHS
outpatient physiotherapy department
• 1 x specialist neuro physio, private practice
• 2 x physiotherapists working in community
neuro-rehab teams
• 1 x physiotherapist working in an in-patient
neuro-rehab unit (non-stroke)
• 1 x physiotherapist working in a private inpatient
unit (brain injury)

10. The interview schedule
• Can you tell me about your role and what
experience you have had in looking after people
with ataxia?
• What are the main problems faced by people
with ataxia?
• What treatments and/or management options
are you able to offer people with ataxia?
• Can you give examples (without personal
identifiers) of what you do for patients with
ataxia

11. Results – Experience of working
with people with a progressive
ataxia
• Those in in-patient settings had little experience:
one had seen one person with a progressive
ataxia (FA) in 11 years; one had not seen any
progressive ataxia cases, but had seen a patient
with a cerebellar tumour
• Others most commonly reported seeing “one or
two” people with progressive ataxia per year

12. “Quite a lot of people are sort of, a bit scared of
seeing ataxic patients, they‟re not quite sure
what to do with them”. . . “I think, oh God, I
can‟t make a difference here.”
(P2: 10: 169-181 & 13: 205-206)

13. The main problems faced by
people with progressive ataxia
• Safety / Falls
• “Postural control and coordination problems”
(P2: 27: 406-427)
• Weakness in core muscles (P5: 22: 362-364)
• Problems with core stability and locus of control
(P3:20: 458-459)
• Compensatory strategies: “They‟ll really overuse
a lot of their peripheral superficial muscles to
stop themselves shaking” (P2: 16: 246-253)

14. • “Their reference points are lost. So . . . their feed-
forward and feed-backwards mechanisms coming from
[the] cerebellum have been interrupted.” (P3: 7: 121-
132)
• “When you get a diagnosis like that and you‟re told
there‟s no cure, what are you going to do? Sit in a chair?
And then what about all the other parts of your nervous
system that then just get disused?” (P3: 31: 842-845)
• Many physiotherapists talked about needing to know
what the underlying problems are for each individual
patient. For example, if fatigue is a central part of their
pathology, vigorous exercise is going to make it worse
(in P1: 23: 200-213)

15. What can’t be done?
• People with „pure‟ cerebellar syndromes were
characterised as a hard to treat group. They were often
contrasted with those with ataxia as a result of stroke or
MS, who were seen as easier to treat
• “I've got a hand full of patients where no matter what
we do . . . the ataxia doesn't change. And it's often . . .
something that gets worse the more they think about it,
and the more they're being watched and the more
they're being analysed as well. So we do have to take
that into account when we're treating and assessing
patients. If they're put under pressure to perform, the
ataxia sometimes [gets worse].” (P2: 14: 205-212)

16. • “As a physio [you] need to see results. If they are
not improving then there‟s nothing you can do
for them . . . I‟ve seen him three or four times
and I‟m thinking, well, you‟re not reporting any
improvements or any changes in the treatment,
so I have to, I have to question what I am
achieving here” (P4: 9: 242-256 & 19: 633-636).
• “It‟s really hard to measure improvement” (P5:
10: 162)

17. What can be done?
• “My job is to improve their quality of life” (P3: 27: 725-
728; P4: 5: 125-134)
• Preventing deterioration (P7: 9: 563-584)
• “It‟s about stopping them sliding down the hill . . . and
putting the brakes on as much as we possibly can, but
unfortunately that‟s not sexy at the moment” (P3: 35:
948-951)
• “If they really limit their activities because they‟re really
worried about falling over, then they‟re going to get the
associated muscle weakness that you‟d get with inactivity
so in that sense to me there might be some potential for
people to improve.” (P5: 12: 170-174)

18. Goal setting with the patient
• “It‟s about getting the patients to take ownership
for their problems” rather than about “what you
do to the patient” (P4: 13: 292-316, extracts)
• “So if I see a patient I‟ll say, „Right what are your
goals; what are your expectations for physio?‟ If
they say to me, „I want to walk normally,‟ I say,
„Well that‟s not a very realistic goal. So what are
your main problems?‟ „I want to be able to walk to
the car.‟ Okay. So looking at the patient and . . .
decide well is that a reasonable goal or not? (P4:
18: 617-628)

19. “I may be the only sort of, health professional
they have any contact with, so for that reason I try
not to lose them . . . To be honest, with some
patients it does turn into more of a counselling
session, it's not always hands on, I'm just
somebody sat here that can listen to them. I may
not have any answers, but we can talk through,
and then I can give some advice, make
recommendations, and make referrals onto other
[services]. Sometimes that can be just as much
benefit as me actually doing hands on treatment.”
(P2: 27: 406-427)

20. Patient Expectations
“ „Oh I don‟t really know why I‟ve been referred to you
because there‟s nothing that anyone can do‟ . . . And I
said, „Well hang on a minute, why don‟t we have a go?‟
. . . And then in the end she agreed to do some physio
and started to improve and got some benefits and
absolutely loved it . . . So she was really enthusiastic
despite having been told no there is nothing that can be
done about it. But on the other hand if patients are told,
„Yes you‟ve got this condition. I can‟t help you, but the
physio might be able to improve things,‟ and they may
well come to us with completely unrealistic
expectations.” (P5: 19: 312-324)

21. Specific therapies mentioned
• Resistance work to address core stability
• Weight bearing exercises to increase stability
• „Real world‟ exercises (e.g. in shops, supermarkets)
• Counting strategies: cognitive override to make the
movement smoother
• “Explore the wobble” – learn to “unfix”
• Pilates exercises – core stability
• “Getting them in the water” (but safety concerns)
• Bilateral walking poles (note not available on NHS)

22. Outcomes
• “This particular problem may not get better and it‟s
working with them to try and help them deal with it
better.” (P2: 24: 345-350)
• Linked to whether patients follow advice or not
• “I suppose the ideal outcome is that they have a period
of stability after they‟ve been seen by [the] service . . .
So, I‟d want to know that they felt reasonably safe when
we discharge them . . . I‟d want to know that they were
coping and that they weren‟t having to kind of work to
their maximum just to get through the day to do all the
tedious menial things that everybody has to do.” (P5: 31:
774-804)

23. Measuring Outcomes
• “The lady that I had some improvement with I
measured her, how long she could stand without
holding on for, so I timed it . . . And that told me
that she‟d improved.”
• Validated measures?

24. Patient views of physiotherapy
• Physiotherapy was only mentioned in 21 / 38
(55%) interviews with people with ataxia
• Of the 15/21 (71%) who expressed an opinion
about physiotherapy in relation to their ataxia,
9/15 (60%) were positive or felt it had helped,
whereas 6/15 (40%) were critical or expressed
negative opinions

25. Patients’ Views of Physiotherapy

26. ‘Neutral’ views?
• “The physiotherapist . . . a long time ago, said there
was nothing they could do” (Pa10: 10: 140-145)
• “I‟m trying to get help with physiotherapy for years
and years” (Pa11: 15: 300-319)
• “Nobody has ever told me” physiotherapy might
help – only just found out (Pa2: 54: 973-981)
• No time to do physio exercises, but still in
demanding work and walks “miles” every day
(Pa14: 23 & 30)
• 2 patients were waiting to see a physio at the time
of interview

27. Negative views
• Physiotherapy did not help / make a difference
(3 patients)
• Critical of short course of treatment / exercise
sheet model (3 patients):
“Basically I‟ve just got to carry on doing what I
do. The more I can do for myself the more I can
keep mobile” (Pa36: 24: 538-650)

28. Positive views
• “The physio has been absolutely wonderful”
(Pa5: 26: 319-332)
• “The most positive thing for me is the
physiotherapy” (Pa12: 62: 1022-1029)
• “The improvement with the physio is untold”
(Pa13: 8: 258-279)
• “The occupational and physiotherapist and the
speech therapist . . . Is the most help I‟ve had”
(Pa18: 11: 77-79) (Similar in Pa19: 593-634)
• “I have an absolutely fantastic physio” [only
patient to be seen continually for years] (Pa22:
33: 222-270)

29. Conclusions for practice
• The difficulties in recruiting professionals might
suggest that some people with progressive ataxia
face difficulties accessing services. This was also
reflected in the small number of patients who
were not aware physiotherapy may have role
• Managing patient expectations and goals seems
to be of fundamental importance
• Giving information, advice and support may be
as important as „hands on‟ physiotherapy

30. Conclusions for research
• This study tells us very little about what happens
to patients when they progress to the extent that
they need full-time care
• Given that ataxia is an „umbrella‟ term,
measuring and developing appropriate validated
outcome measures appears challenging,
especially given the small numbers of patients
• We will have a fuller picture of what
physiotherapists do in progressive ataxia when
we analyze the results of our national survey (c.
200 respondents)

31. This presentation presents independent research
commissioned by the National Institute for
Health Research (NIHR) under its Research for
Patient Benefit (RfPB) Programme (Grant
Reference Number PB-PG-0807-13181).
The views expressed are those of the author(s)
and not necessarily those of the NHS, the NIHR
or the Department of Health.