Coping with criticism

1
Coping with criticism

• At times, being a user consultant can be
  challenging
• your peers may criticise you
• health and social service staff may criticise you
  
• you may feel like your involvement is tokenistic
  this means you are there for appearances but
  not really taken seriously

1A
2
1 - You are not representative enough of users,
carers and the public

• The most common dilemma for user consultants is
  Who are you meant to represent?
• This is made worse if you are the only user
  consultant present
• It is much easier to stay in touch with user
  perspective if there are two or more user
  consultants involved in an activity
• It is even easier to remember and advocate for
  the interests of a diverse range of users if you
  can speak to and consult with a wide range of
  users
• This creates a much needed support structure
  because you can debrief with this wider group

1B
3
Responses for criticism 1

• Encourage the service to involve more user
  consultants to join you in the user involvement
  activity
• Ask what support the service will provide so you
  can consult with a wider range of users, and then
  provide feedback to them
• Ask whether the service will support you to
  network with user consultants in other services
  who are working on similar matters, so you can
  learn about what issues they are raising and what
  solutions they are trying

1C
4
Responses for criticism 1

• Suggest that one or two people are able to raise
  issues that are shared by many others who may not
  feel comfortable or had the opportunity to
  express it this is what you are doing
• Ask how well the health and social service staff
  who are involved are representative of all the
  staff that will be affected is this a concern
  to the service?
• Ask what the health and social service staff
  involved are doing to make sure they consult with
  a wide range of staff in the service and
  represent a broad range of issues?

1D
5
2 - You are a professional user consultant -
you dont represent everyday users, carers and
members of the public

• When you become experienced with user
  involvement, health and social service staff or
  other users, carers and the public may see you
  as a professional user consultant
• They might question whether you are genuine and
  understand everyday issues - this can be used to
  dismiss your ideas
• It is not clear at what point user consultants
  become professionalised
• No comparison is made with health and social
  service staff where being professionalised is
  required and expected
• For health and social service staff, the more
  experience you have then the greater the respect
  you are usually given

1E
6
Responses for criticism 2

• By gaining experience as a user consultant I can
  do two things
• advocate and work for a broad range of issues
  that concern users, carers and the public
• understand more about the health and social
  services system and how to work with it
• If someone was new to being a user consultant,
  then I
• would be very happy to pass on my experience
  about working with the health and social services
  system
• believe that doing this is something that any
  user consultant will have to learn to do in user
  involvement work

1F
7
Responses for criticism 2

• I make sure I keep in touch with the everyday
  issues of users, carers and the public by
• Fill in the ways that you do this, e.g.
  continuing to be a service user personally,
  talking with other user consultants, consulting
  with other users, carers and the public, being
  part of a user or carer group, etc
• Having experience is part of developing your
  professional skills and is very important to
  health and social service staff
• Why should this be different for user
  consultants?
• Why do you not have the same respect for user
  consultants?

1G
8
3 - You cant tell us anything that we dont
know already

• Staff can learn from users and carers because
  they
• are the experts on how treatment and other
  services are received and experienced. They can
  tell you about how different social and
  environmental settings impact on the
  effectiveness of services. They can tell you why
  some services get used and others dont. They can
  tell you how it feels to be on the other side
• If staff work with users, carers and the public
  as partners, then users, carers and the public
  take a more active role
• This happens in their personal health care, as
  well as in planning, delivering and evaluating
  services
• As they learn more about health and social care
  and services, they can give positive input to
  assist staff in their work

1H
9
Responses for criticism 3

• Health and social service staff know a lot about
  what causes and how to treat health problems, but
  they dont always know what it is like to live
  with them
• Users and carers are experts on that - we can
  tell you about things you may not ever think of,
  things that are not just about the problem
• There are things in our lives that make the
  problem more or less difficult to live with, or
  make it more or less easy to follow recommended
  treatment

1I
10
Responses for criticism 3

• If health and social services staff know more
  about what it is like to use services, and the
  barriers to doing this, they can do an even
  better job than they are doing already
• We can see things that are hard for you to notice
• We can help you sort out things that you also
  find frustrating
• You have not been able to resolve them because
  there is information that you have not got at the
  moment - that comes from what we know as users,
  carers and members of the public
• I thought you would like it if users and carers
  have more knowledge and skills. That way they can
  be more responsible for keeping their health and
  social wellbeing on track, or managing problems.
  Wouldnt this create a little less work for you?

1J
11
4 - We talk to users and carers every day we
dont need you on management boards or project
committees

• This is a variation of the last criticism
• Of course health and social service staff talk to
  users and carers everyday - but they do this in a
  very specific way where they set the agenda about
  what is important to talk about and how to do
  this
• Health and social service staff gain a very
  different perspective when user consultants are
  on boards, committees, panels or project groups

1K
12
Responses for criticism 4

• The things you want to talk about with users and
  carers when you provide direct services do not
  always include the things we want to talk about
• When we as users and carers are personally
  receiving services, we usually focus on our own
  situation
• When we are doing user consultant work, then we
  want to focus on the situation for other users,
  carers and the public as well
• We might want to discuss the way you provide
  services that do or dont help us to manage our
  health and social wellbeing

1L
13
Responses for criticism 4

• On management boards and committees I can put
  things on the agenda as important issues to talk
  about - I dont always get that chance when
  receiving direct health or social services
• Users, carers and the public have a right to be
  involved in important services like health and
  social services it is now the law that we get
  to be involved

1M
14
5 - You never put forward ideas that we agree
with

• If this happens, then staff are getting
  information that they would not get without user
  involvement - this is a good thing
• It might highlight a lack of information in the
  community
• It might show the service is not making the
  process transparent a sign of a good user
  involvement process
• If you have more information about the service,
  what it is trying to do and what is getting in
  its way, then you may come up with different
  ideas
• More information helps build more understanding
  and trust
• More understanding and trust helps build
  partnerships

1N
15
Responses for criticism 5

• You are creating a good opportunity for user
  involvement because you are getting to hear about
  things that you normally wouldnt
• Hopefully we can consider all the ideas - staff,
  mine and other users, carers and the public
• Then we can reach agreements about what needs to
  change
• We can then try our ideas to test them out

1O
16
Responses for criticism 5

• Maybe I need some more information about why
  (the specific matter) is an issue for you
• Are there things that you know about but I dont
  just yet?
• If I had more information it might be easier for
  me to understand everything that is involved
• I may still have some different ideas, but if I
  talk about them it will encourage us to develop
  some shared ideas
• If you dont agree with my ideas, then you
  probably dont agree with a lot of other users
  and carers ideas either
• This means the service is not meeting the needs
  of users, carers and the public - that is what it
  is meant to be doing. Do you want the service to
  be for staff or for users, carers and the public?

1P
17
6 - Users, carers and the public never agree
with each other how can we work with you with
this much difference

• There is an assumption that if a group is going
  to be effective, they have to be united in what
  they believe
• This is only partly true - it does help to have
  some core agreements, but because peoples
  situations are so different it is not appropriate
  to use one set of ideas all the time
• When you are working in a user involvement
  activity you need to put forward several ideas
• If the voices of users, carers and the public are
  going to be heard, you need more than one of
  these ideas to be supported

1Q
18
Responses for criticism 6

• It is great that there are different opinions
  coming through - this means we are reaching a
  wide representation of users, carers and the
  public
• Lets find out why there is so much difference
• Maybe that will help us with the issues we want
  to resolve and the ones that are getting us stuck
• We might discover things that you and I have not
  yet thought of that we could do something about
• Maybe there are some groups who have specific
  needs we need to listen to their ideas more
  carefully

1R
19
Responses for criticism 6

• In my experience health and social services staff
  also often disagree and have different opinions
• How do you manage to still work together when
  this happens?
• How do you use different opinions positively in
  the health and social services sector?
• Does it help you develop new ways of doing things?

1S
20
7 - You are difficult to reach - your
availability is not good you dont get back to
us when we contact you

• All of these criticisms are similar
• As a user consultant you are usually doing user
  involvement in a volunteer capacity - although,
  as a minimum, you should receive reimbursement of
  travel, communication or other costs you incur
  through involvement
• You often have a range of other responsibilities
  to look after in family, work, or study areas
• if you are dealing with your own or another
  persons ongoing health or social difficulty,
  then that is usually a priority over user
  involvement work
• These are the realities of your life

1T
21
Responses for criticism 7

• I am sure you find that frustrating I do when a
  staff member I need to reach doesnt get back to
  me. I guess we are all busy in our different ways
  and we need to be patient with each other
• What can we do about this to make it easy for
  both of us?
• I find that there is not enough time allowed for
  me to do this user involvement work - staff are
  doing it as part of their job, but I do it on top
  of many other responsibilities
• Could you send out meeting or other information
  you want me to read earlier? That would help me
  get back to you and continue the important work
  we are doing together

1U
22
Responses for criticism 7

• It always helps to give me reasonable notice if
  you want some feedback or for me to attend a
  meeting
• I understand that there may be emergencies, but
  if you give me (preferred amount of time) then
  I will be able to get back to you in time
• As you know, I (or someone for whom I care) have
  an ongoing health or social problem - this will
  always be the priority
• If you check with me about how things are going
  then we can set a realistic expectation together
  about what I can do by what time

1V
23
Responses for criticism 7

• If some things are more urgent than others, then
  it really helps to know about this and the
  reasons why
• Can we have a system where we say how urgent
  something is?
• That will help us all decide which things we work
  on more quickly than others

1W
24
Problems in user involvement for user consultants

• You may find that you are tokenised or put on
  display by a service to show others that they are
  doing the right thing
• you know that challenging this may lead to user
  involvement being dropped altogether by the
  service
• Health and social service staff may feel angry,
  confused and uncomfortable about user involvement
  work
• you may not feel confident enough to talk with or
  confront staff at these times
• both you and the staff may personalise the matter

2A
25
Problems in user involvement for user consultants

• Health and social service staff may talk about
  doing user involvement and think that they are
  doing it, but then let you down - they do not
  walk their talk
• you may not feel able to ask for information,
  challenge decisions and call health and social
  service staff to account in these circumstances,
  especially if you do not have strong personal
  support from other user consultants or another
  staff member who is an ally
• You may not be seen as competent and credible
  because you do not speak health and social
  services jargon, or have access to the inside
  knowledge of the health and social service sector

2B
26
Problems in user involvement for user consultants

• You may also find that you are seen as
  complainants rather than people who want to
  acknowledge, provide support and have ideas to
  offer
• This is even harder to deal with if you do not
  have good personal support networks
• You may not always feel skilled enough to take on
  the tasks often expected of you, although it is
  something you could grow into with good support
  and training
• Finally, you also have to challenge some of your
  own personal beliefs and biases during user
  involvement work as you will work with many
  different people

2C
27
Benefits of user involvement for user consultants

• Having the opportunity to make a meaningful
  contribution to health and social care an
  important public services
• Feeling empowered by being listened to with
  respect and having people respond to their ideas
• Learning more about services

2D
28
Benefits in user involvement for user consultants

• Having the opportunity to improve services for
  themselves and other users, carers and members of
  the public
• Interacting with a wider network of users and
  carers, thus building their social connections
  and supportive relationships
• Having the opportunity to improve health and
  social care research to make it more relevant to
  the lives of users and carers

2E
29
Problems in user involvement for health and
social services staff

• Feeling out of their depth with user involvement
  work, as most have not been trained for it
• Feeling vulnerable when they are not sure how to
  do it - they may worry that user consultants and
  other staff may question their ability
• Changing their professional identity as user
  involvement becomes an ordinary and valued part
  of services
• this means changing their ideas about who has
  expertise in health and social services
• they may think they lose expertise and power -
  really they gain new expertise from users, carers
  and the public that helps them to know more

2F
30
Problems in user involvement for health and
social services staff

• Feeling unsupported in user involvement work when
  other staff or the service does not accept
  responsibility for it
• they may get more support from user consultants
  than their colleagues
• this could create some distance from their
  professional colleagues who may find user
  involvement work harder to accept or do
• Feeling confident enough to challenge their
  colleagues, managers and service when there is
  meant to be a commitment to user involvement but
  not much action

2G
31
Benefits of user involvement for health and
social services staff

• Gaining greater understanding and appreciation of
  user consultants knowledge, skills and concerns
• Seeing users and carers as both a resource and
  resourceful people
• Personal satisfaction at being able to contribute
  to the growing knowledge about how to do user
  involvement
• Gaining richer personal and professional
  experiences through developing stronger
  relationships with user consultants
• Developing their skills so they are able to train
  and mentor other workers in user involvement

2H
32
Benefits of user involvement for health and
social services staff

• Learning more about how power affects
  relationships and dealing with it so that it is
  used positively rather than negatively
• Developing their advocacy skills to assist other
  workers and their service to appreciate and
  support user involvement
• Earning credibility when their user involvement
  work is successful and this becomes well known
• Earning a reputation as a good worker where
  they are respected and recommended by users and
  carers
• Increased self-esteem and job satisfaction

2I