1. Definition of user involvement
CORE 1: Unit 1 - Part B
Definition of user involvement
When users, carers and the public are involved in discussing and making decisions in a genuine partnership with health and social service staff about:
their own health or social care
service planning or service improvement
research and development activity
It is more than being advised or consulted by staff, or participating in a pre-set process - it sometimes mean having independent control over health and social service delivery and decision-making
Most often it means working with health and social service staff
Trainer Notes
PRESENTATION:
Here is the definition of user involvement that we are using in this training and facilitation resource.
Present above points. 1A

2. Working with each other
CORE 1: Unit 1 - Part B
Working with each other
Users, carers and the public can work with health and social service staff as partners at all levels of service in:
making decisions about an individual’s personal care
service planning and improvement - how to design, run, improve and monitor services
research and development activity – how to evaluate existing services, and research new issues to guide good practice in services
Trainer Notes
PRESENTATION:
Present above points, then say: We will discuss why user involvement is important in the next activity. 1B

3. Health and social service staff must recognise…
CORE 1: Unit 1 - Part B
Health and social service staff must recognise…
Health and social services exist to serve the public
To help people have good health and well-being
To help them recover or manage their health or social problem well if they cannot fully recover
Meeting the needs of users and carers should drive what happens in health and social services
Users and carers have expert knowledge about their health and social situation and it is just as important as professional knowledge
Trainer Notes
PRESENTATION:
To do user involvement health and social service staff must act on their knowledge of user involvement – not just talk about it. It must become real to users, carers and the public – they must see it happen.
To do user involvement health and social service staff need to recognise all of the following things:
Present above points 1C

4. Health and social service staff must recognise…
CORE 1: Unit 1 - Part B
Health and social service staff must recognise…
If they learn about the experiences that users, carers and the public have with health and social services, then they can do a better job of improving and expanding services
Users, carers and the public are a very diverse group – what will suit one person will not always fit for another person
Trainer Notes
PRESENTATION:
Present above points. 1D

5. Experiences of different groups
CORE 1: Unit 1 - Part B
Experiences of different groups
We all need to learn about the experiences of different groups - this includes differences based on:
age
gender
cultural identity
living situation
socio-economic status
sexual orientation
type and degree of health problem.
Trainer Notes
PRESENTATION:
Present above points, then say:
These are the areas of ‘difference’ that we commonly use in our society to break ourselves into groups. As people doing user involvement you will also need to be aware of these difference and build respect between yourself and other people who are different from you. 1E

6. Principles of user involvement
CORE 1: Unit 1 - Part B
Principles of user involvement
When users, carers and the public work in partnership with health and social services, you need to expect uncertainty because:
You will not always be able to predict what will happen because people bring different expectations and ideas to the partnership – having some uncertainty is OK
User involvement work will require services to change the way things have usually been done – this could mean some or many things changing
Trainer Notes
PRESENTATION:
Principles that help user involvement work well in health and social services include:
Present above points.
Note to Trainer: These principles are based on the work of the Consumer Focus Collaboration (2000) – listed in the ‘Sources used for material in this part’ section of Useful Information. 1F

7. Principles of user involvement
CORE 1: Unit 1 - Part B
Principles of user involvement
Staff need to understand user involvement to do it well and to manage change – they need to be supported to do this so they stay positive and learn
Good leadership will help services accept user involvement – there must be support from the top
User involvement must be built from the ground up:
what you learn about users, carers and the public’s experiences of service needs to influence day to day service practice through to management decisions
Trainer Notes
PRESENTATION:
Present above points. 1G

8. Principles of user involvement
CORE 1: Unit 1 - Part B
Principles of user involvement
Relationships are the key – everyone involved needs to work on their people skills
Relationships depend on good communication
Good communication happens when there is trust, so you need to build trust between people
Do not rely on just one approach – when you have several ways of tackling something you usually do a better job
Trainer Notes
PRESENTATION:
Present above points. 1H

9. Why is user involvement important?
CORE 1: Unit 1 - Part B
Why is user involvement important?
In a democratic country, like the UK, you have a right to be involved as part of the political process
User involvement makes services more responsive to the needs of users carers, and the public
this means they are also more respectful
Trainer Notes
PRESENTATION:
You have given personal reasons for why you think user involvement is important. Let’s see how they compare with these ideas.
User involvement is important for users, carers and the public, and for health and social service staff. The main reasons why we should have user involvement include…
Present above points.
Note to Trainer: These principles are based on the work of Entwistle et al. (1998) – listed in the ‘Sources used for material in this part’ section of Useful Information, as well as the issues discussed in the Background Information section under “Does user involvement make a difference? 2A

10. Why is user involvement important?
CORE 1: Unit 1 - Part B
Why is user involvement important?
User involvement improves the quality of services – this includes what is offered, how it is offered and who gets access to services
User involvement leads to better outcomes for users and carers – if this happens then:
users and carers are better informed about health and social service issues
health and social service staff can work with more people, do more work to prevent health problems or deal with them early before they get worse
Trainer Notes
PRESENTATION:
Present above points, then say: 2B

11. Why is user involvement important?
CORE 1: Unit 1 - Part B
Why is user involvement important?
User involvement can mean users, carers and members of the public feel empowered – this means when you feel that you:
are important, capable and valuable
have the ability and confidence to speak up and do things for yourself
are confident to speak or do things on behalf of others if they have given permission for you to do this
In short, being empowered is when you feel you can stand up for yourself, be heard and get things done
Trainer Notes
PRESENTATION:
Present above points, then say: No-one is able to empower you – it is something you do for yourself through support from other people and opportunities to learn about what you are capable of doing. User consultants do not always feel empowered when they start out in user involvement work. Hopefully they end up feeling empowered if it is a good experience.
What do these five things mean in real life situations? Here are two examples of user involvement where you can start to see the benefits of the work. 2C

12. Example 1: Involving Older People in Social Services
CORE 1: Unit 1 - Part B
In October 2001, Worcestershire Social Services employed an ‘Involvement Officer for Older People’
Several new services for older people have been set up
There are now 8 Older People’s forums within the Worcestershire area. Each forum includes:
older people from the local community, and
a health and social service staff member from:
Trainer Notes
PRESENTATION:
Following the introduction of the NSF for Older People…
Present above points
Social Services
the Primary Care Trust
the ‘Age Concern’ charity
the County Council 2D

13. Example 1: Involving Older People in Social Services
CORE 1: Unit 1 - Part B
The role of the forums is to ensure older people within the local area have a say in how social services and health services are run
The meetings take place once every three months - they are minuted and action plans made
Things that have altered due to the groups’ work are changes to:
day care – improved day care hours and activity options
home care – some housework is now done for users
meals on wheels – improved quality of service
Trainer Notes
PRESENTATION:
Present first point, then say: This links with reason 1, user involvement is a democratic right .
Present second and third points, then say: This links with reason 2, user involvement makes services responsive to users, carers and the public’s needs. 2E

14. Example 1: Involving Older People in Social Services
CORE 1: Unit 1 - Part B
Forum members are consulted about the needs of older people and work as part of a group to improve services
They were involved in pressure groups that:
forced Social Services to not close a Residential Home for people with dementia in Bromsgrove
kept a bus route on in Droitwich
created access for disabled people at Evesham train station
stopped the closure of a Hospital in Pershore and Minor Injuries Unit in Bromsgrove
prevented GP surgeries from moving in Malvern
Trainer Notes
PRESENTATION:
Present first point, then say: This links with reason 3, user involvement improves the quality of services. For example:
Present second and sub points, then say: They are also involved in reviewing day care services across the county and in a Carers Unit Reference Group. All of their work relates to reason 5, feeling empowered through making important contributions to health and social services through their user involvement work. 2F

15. Example 2: National Childbirth Trust and ConNeCT
CORE 1: Unit 1 - Part B
A user-led organisation for pregnant women during their childbearing years
Supported by the Royal College of Midwives
It gives evidence-based information to women during pregnancy and throughout the postnatal period so they can make good decisions for themselves and their babies
Trainer Notes
PRESENTATION:
The National Childbirth Trust (NCT) is:
Present above points, then say: This links to reasons 1 and 4: it is women’s democratic right to be involved, and having good information means they are better informed so they can make decisions that lead to better outcomes 2G

16. Example 2: National Childbirth Trust and ConNeCT
CORE 1: Unit 1 - Part B
ConNeCT is a special part of the NCT - it trains midwives to set up ‘Maternity Services Liaison Groups’ - MSLG
These are women’s forums to ensure maternity services are user-led. Each hospital/trust should have a MSLG that includes these people:
midwives
women
obstetricians
maternity managers
Trainer Notes
PRESENTATION:
Present above points, then say: This links to reasons 2 and 3: the forums help services be more responsive to users’ needs, and services can improve the quality of what they do by learning about women’s needs. This example also supports reason 5, women becoming empowered so that they can influence what happens during pregnancy and birth and be in a position to make good decisions for themselves. 2H

17. Department of Health’s reasons for supporting user involvement
CORE 1: Unit 1 - Part B
Seeking the views of others and having mutual regard for them is an important element of planning
Services can be designed and adapted to respond better to people’s needs
A consultation allows alternative proposals to be developed
Consultation also demands that:
proper time and thought is given to the views of patients and the public on a proposal
helps develop an evidence base for important decisions
Trainer Notes
PRESENTATION:
The Department of Health made a clear decision to support user involvement in the NHS Plan (2000). They took this seriously enough to make user involvement part of the law in 2001 through the Health and Social Care Act. This is what they said their reasons were in 2003:
Present above points.
Note to Trainer: This information comes from the Department of Health (2003) – listed in the ‘Sources used for material in this part’ section of Useful Information. 2I

18. Department of Health’s reasons for supporting user involvement
CORE 1: Unit 1 - Part B
The experience and knowledge of patients, the public and local communities can be used to benefit others
Better decisions are made because more people’s views, perspectives and suggestions are heard
Major decisions are more transparent and the process for reaching them is understood
Trust is built between communities and the health or social service
Trainer Notes
PRESENTATION:
Present above points. 2J

19. Outcomes from user involvement
CORE 1: Unit 1 - Part B
Outcomes from user involvement
When health and social service staff work in partnership with users and carers, then users and carers:
Are more satisfied and less anxious
Are more likely to make positive health and personal changes to improve their situation
Stick with these changes more easily
Are more likely to take medication if that is needed
Have fewer service visits
Have better physical and mental health – they recover more quickly or can prevent things getting worse
Trainer Notes
PRESENTATION:
When you look at the research on user involvement, the Department of Health’s reasons have support.
For example, in the area written about the most - users’ and carers’ involvement in their own care - many people agree that…
Present above points.
Note to Trainer: This is a summary of literature on user-friendly care in health and social services – please refer to this section of the Background Information. 2K

20. Outcomes from user involvement
CORE 1: Unit 1 - Part B
Outcomes from user involvement
“User consultants can be involved as employees, trainers or researchers without detrimental effect” to themselves or health and social service staff
User consultants who train health and social service staff have a positive influence on trainee attitudes
When user consultants do not have decision-making roles in partnership with staff, then their influence depends on how much managers listen to them
if staff decide not to listen, this undercuts user involvement
Trainer Notes
PRESENTATION:
We are learning more about the outcomes of user involvement in service planning and improvement and what does or does not work although there is less research done on this area – most people learn from doing the work. What we can say is:
Present above points, then say: A recent review of user involvement in service planning and improvement said:
“Patients have contributed to the planning and development of services across a range of settings, but the effects of this process on the quality and effectiveness of services are unknown. This absence of evidence should not be mistaken for an absence of effect.” (p.1265)
Note to Trainer: This quote is from Crawford et al. (2002) and was discussed in the Background Information section for this part. 2L

21. Outcomes from user involvement
CORE 1: Unit 1 - Part B
Outcomes from user involvement
User involvement improves the quality of research because user consultants:
identify issues that are important to users, carers and the public
emphasise important topics and questions
influence how research is designed and carried out
are better able to discuss and review service practice
by working in partnership with staff, bring more than one set of expertise to the issues
can help share the learning gained from research with a wider range of people
Trainer Notes
PRESENTATION:
Here is a quick summary of the impact of user involvement in research and development activity:
Present above points, then say: As you can see there are a range of reasons to support user involvement and the evidence to back these reasons up is growing.
Note to Trainer: This is a summary of literature on user involvement in health and social service research and development – please refer to this section of the Background Information. 2M