Frontiers

1
Views of people with MS and their carers
Bella Vivat
2
Characteristics of the interview group

• 23 people with MS 17 informal carers
• 9 carers independently of person with MS
• gt data relate to 32 people with MS (23 9)
• 19 women, 13 men

3
Characteristics of the interview group

• Ages 18-79 mean 54.5 (SD 12.9)
• 21 with SPMS, 6 PPMS, 3 RRMS, 2 other
• UNDS (max 60) range 17-50 mean 30.2 (SD 9.2)
• Time since diagnosis range 1-53 mean 18.3 (SD
  12.4)

4
Characteristics of the interview group

• 26/32 unable to walk
• 9/32 no purposive arm and hand movement 9/32
  limited
• 24/32 permanently catheterised only 1 person
  with no bladder problems

5
Characteristics of the interview group

• 11/32 some degree of pain
• 23/32 muscle spasms
• 17/32 with some swallowing difficulties 4 unable
  
• 5/32 unable to communicate

6
Focus of this talk

• Interviewees responses to open questions
• Could you tell me what things are most
  important for you about living with MS?
• Could you tell me what things are most
  important for you in caring for X?

7
People with MS

• Mobility (15/23)
• Independence (11/23)
• Relationships (4/23)
• Symptoms (7/23)

8
Mobility

• M19 (UNDS 30) Not being able to walk is the
  number one issue.
• M23 (UNDS 28) Id say that mostly I get down
  with having MS because I cant walk. I get very
  envious of people who can walk around and I
  cant.
• M06 (UNDS 27) Physios vital, one of the most
  important things I can only see the physio once
  a week, because she only works 2 days a week, but
  3 times a week would be better, because keeping
  your mobility going is really important, its the
  one thing you want to keep.

9
Independence

• M10 (UNDS 20) Being able to help myself. Im
  not very good when I cant help myself I get
  agitated. And I like to be able to do things for
  myself, such as showering and dressing. I get
  myself in and out of bed I cook, I clean, wash
  the floor being self-sufficient I think is
  the most important thing to me.

10
Independence

• M13 (UNDS 27) Keeping my independence, not
  allowing MS to completely dominate my life
  having support workers is a way of helping me
  keep my independence, not losing it.
• M02 (UNDS 32) The most difficult thing is the
  lack of independence. I feel dependent on
  everybody for everything and thats very hard for
  me, being a very independent person Thats by
  far and away the main thing.

11
Relationships

• M12 (UNDS 37) Playing with my daughter...
  Because my wife was a head teacher and I
  wasnt, I used to be the one in the evening that
  was home, and looked after our daughter and
  cooked the evening meals. I miss doing all that.
  
• M13 (UNDS 27) I dont really see that theres
  going to be an opportunity or a chance to build
  another relationship. Because I feel now that
  you dont people dont only have a relationship
  with me, they have to have a relationship with
  the MS as well ... I miss cuddles and intimacy.

12
Symptoms

• 4 people having pain
• 1 person not having pain
• 1 person pressure sores
• 1 person drowsiness associated with pain
  medication

13
Services and care

• Lack of co-ordination and continuity of care
• Poor quality of clinical care non-specialist
  in-patient care, hospital transport, community
  care, end of life care
• Information needs services and aids, benefits,
  end of life
• Fighting for everything

14
Co-ordination and continuity of care

• C05 everything is compartmentalised. The
  carers the health centres , the GPs ,
  the MS nurses and the hospitals. Its all
  these groups and theres no intermix!
  Theres no thread in between anything.
• C04 yet another professional on the doorstep,
  knocking on the door, and constantly going
  through the whole thing again, and re-presenting
  it and re-presenting it and re-presenting it
  Its not just my husband, I think its anybody
  whos been cared and looked after and washed and
  you know, they lose all their dignity and so on.
  You shouldnt have complete strangers knocking on
  your door every time.

15
Co-ordination and continuity of care

• C08 And every time you need a new adaptation or
  a new you have to go through the system again
  you have to start again with explaining. And
  they ask you things like someones date of birth
  and whats the illness and so on, and youve
  given this information out so many bloody times,
  and you think Cant they just have it there?
• C10 They listen... you have a moan about
  something, and then they say Oh, well see what
  we can do. And then they disappear out the
  door, never to be seen again And then the
  next week you get a different district nurse.

16
Non-specialist care

• M10 I had gall stones. And when I went into
  hospital, oh my God! They have nothing in a
  normal hospital to aid people like me. I was
  left on a bed I couldnt move, I couldnt pull
  myself up, oh, it was diabolical! It really was.
• M06 When I went into hospital with catheter
  problems I was transferred up to the ward And
  obviously they transfer you flat And the
  nurse was saying things like Swing your legs
  over the side. Well, if I could have swung my
  legs over the side, I would have swung them over
  the side (laughs)!

17
Non-specialist care

• C06 my husband had one of these bladder
  infections and he was put on a general
  medical ward, where they obviously had no clue
  whatsoever of dealing with someone who was
  paralysed And I said Whatever you do, you
  mustnt put him in an armchair, because he cant
  support his body weight So they decided
  they would put him in an armchair, and he fell on
  the floor... And the food. He was on a soft
  diet And they used to put the food on those
  kind of trolley-tables at the end of his bed
  And the nurse would say Hes not eaten very
  much. He cant reach it, what do you mean?
  So in the end I had friends who used to go in and
  feed him high protein stuff just to keep him
  going.

18
Non-specialist care

• C10 my husband came home from hospital with a
  bed sore, thats why the district nurses came
  in He went in for a blocked catheter, and he
  ended up with pneumonia, the MRSA bug, an eye
  infection every infection going. And that was
  an absolute nightmare in there. He even had a
  dirty feed-tube.
• C04 In the hospital I find that they would leave
  him sitting on the commode for ages, even after
  giving him a suppository, and of course with his
  pressure sores its not very good. When my
  husband goes into hospital I mostly go in at
  lunchtime to feed him because of the trigeminal
  neuralgia. And I toilet him in hospital as well
  , because I think the less people having to
  care for you the better.

19
Information

• C05 sometimes it seems like its, we sort of
  fell into this situation, the situation were in
  now, by accident ..., by overhearing about
  things from somebody, and then Oh yeah!
• C09 Even from day 1 youre told you go in Oh
  yes, youve got MS, Ill see you in 6 months.
  And you go home and you think Oh, what do we do
  now? And its only different people have
  mentioned something and Ive thoughtOh, I
  wonder if that would apply to us? Even claiming
  for anything its only a friend said Oh,
  my wife gets DLA, and then you try and find out.
  But nobody will actually tell you, sit you down
  and say Have you tried this? Have you tried
  that?

20
Information

• C08 what horrified me is that its been hard
  for me, so if its hard for me, and this social
  work is my job, umm On a practical level its
  been hard, still having to fight for everything,
  still not knowing whats around, still not found
  out about things, still not been told things
  You know, I picked my husband up off the floor
  for years when he fell, and nobody ever said
  What do you do when he falls? What happens when
  he falls over? And things like that, just very
  basic things.

21
Information

• C02 Theres a woman down the road, who was a
  Chief Occupational Therapist for a London
  borough And she has been my main source of
  information and aids the stair-lift , the
  uro-bag . Oh, all sorts of things like that,
  which nobody else would know about, you know.
  And shes got this thing about shes just told
  me about these things for walking sticks, whereby
  they adjust to the they move and they adjust to
  the level of the strength of the arm. But no one
  tells you about these things!

22
Information

• C06 I would have liked more assistance with what
  was going to happen at the end A lot of the
  books that we read dont go into the detail
  of the sort of final progression of the illness,
  or the possible final progression. So I think I
  would have liked more information about that, and
  to know what to expect.
• M22 I want to find out if it MS can kill you
  (laughs) , I want to know if youre going to
  die from it. You know, thats the main thing
  thats been on my mind since Ive been told.
  The MS Society booklets dont tell you whats
  at the end of it. Which I believe is I dont
  know, its serious and youve got to know about
  it, you know? Its very important.

23
Fighting for everything

• Advocate for M14 And its constant phoning and
  phoning and phoning. Like, for instance, she has
  an electric wheelchair It was taken away on
  Monday because they wanted to look at it And
  theyre now ringing up to say theyll need to
  keep it until next Tuesday , Ive just been on
  the phone to them to say you know, this is
  causing her a lot of stress, and why cant they
  have the wheelchair done soon, so theyre
  bringing it back tomorrow. But you know, its
  you just dont get this level of response unless
  theres somebody literally fighting your corner,
  and thats what I feel, you constantly have to
  fight the corner.

24
Fighting for everything

• C10 Im always phoning youve always got to
  chase somebody.
• C13 its a constant battle, every day Im
  battling to do something, get someone to do
  something, you know, trying to get things done.
• C08 On a practical level its been hard, still
  having to fight for everything, still not knowing
  whats around, still not found out about things,
  still not been told things

25
Key issues

• Support needs emotional and practical
• Information needs services, aids and
  adaptations, benefits, end-of-life
• Symptom control
• Care issues co-ordination, continuity, quality
  of inpatient care