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Information for Health Professionals on User Involvement and Benchmarking

Incontact works with health service providers to enable them to involve their users and develop responsive services. Incontact offers training and information to support health care professionals in developing useful dialogue with their patients.

We provide:

• A variety of support systems
• Promotional materials
• Consumer training
• User involvement training and materials
• Consumer information on continence related issues.
• Advice and consultation to health professionals on user groups and patient support.

Click on the following for more information:

User Involvement

Benchmarking:

User Group Details:
To enter your User Group Details

User Involvement

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Why Involve Patients?
The NHS Plan clearly states that it wants to involve users at all levels – from planning to service provision. The NHS has a responsibility to taxpayers and potential or existing service users. User involvement will have a huge impact on the NHS as patients will be more informed and take a more active role in their own health and services will benefit from their expertise.

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Policy

"Too many patients feel talked at rather than listened to. This has to change….. patients must have more say in their own treatment and more influence over the way the NHS works." NHS Plan, July 2000

 

"At every level there will be more patient power" Alan Milburn – Secretary of State for Health

 

"Ensure users and carers are involved in the planning, provision and audit of services." Good Practice in Continence Services (Guidelines)

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What is User Involvement?
Patient involvement (active participation) in their care and the planning, delivery and evaluation of health services. Identifying users’ needs, expectations and preferences of health services to improve service delivery and aid planning of services.

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What are the Benefits of User Involvement to Health Professionals?

• Improve staff morale – positive feedback can highlight the good aspects of services.
• Enable organisations to learn how to improve service quality, responsiveness and effectiveness.
• A better relationship between health professionals and consumers can encourage a sense of ownership and partnership.
• Work towards equal and accessible services.
• Highlighting a resources shortfall to obtain more financial assistance.

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What are the Benefits of User Involvement to Consumers?

• Allows consumers’ voices to be heard.
• Gives consumers the opportunity to make a real difference in health services.
• "Feel good factor" – making a difference within the local community.
• Skill building – training opportunities, increasing confidence.
• Patient empowerment - access to information on treatments and services can lead to positive changes to individual patient’s health.
• Gaining something positive from an otherwise "negative" health condition by helping others.

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What Method Of User Involvement Should I Use?

• Questionnaire
• Suggestion Box
• User group/Forum/Focus group
• Comments sheet – a simplified version of a visitors book.
• Queuing tickets for patients waiting for the consultant or continence advisor, which invite comments/complaints.
• Newsletter/magazine
• Anecdotal evidence
• Interviews
• Web site polls/surveys etc.

The method chosen will depend on the level of involvement required, what you what to achieve and your local population. To involve people at all levels include a variety of methods, using just one can limit the representativeness of your feedback.

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What Should User Involvement Look Like?
It should be a partnership between health professionals and consumers. There must be transparency and openness in the management of patient involvement. It is a two way ongoing process, which involves users at all levels.

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Planning A Continence User Group
Clarify the decision making process within the group.

Identify what costs will be incurred in recruitment, retention and User Rep e.g. advertising, childcare, travel, carer’s costs, interpreting costs.

• Start a group
• Display contact details/publications of voluntary organisations.
• Keep a confidential database of patients willing to communicate to others.
• Hold continence related classes.

How do I Link to Voluntary Organisations?

• Internet search
• Contact Incontact for a list of useful organisations
• Contact local media

How can I Improve Attendance at My Group?
Look at:-

• Venue
• Advertising
• Time/date
• Privacy

How can I start a group, I’m too busy?
We appreciate that as busy health care professionals your time is limited but Incontact can help – providing support and advice, publicity materials, guidelines/start-up pack.

We have limited funds, can we still set up a group? You will probably find users willing to fundraise – to buy equipment/improve the environment etc.
The running costs are relatively low and Incontact can provide you with many useful materials.
Additional funding may be possible – apply for a grant in your trust. One Continence Service has successfully been awarded HIMP money to fund a user group project worker.

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The Key To A Successful User Group

• Link to local organisations and groups – to recruit participants and obtain information and advice.
• Share information with the public in an appropriate and timely manner.
• Ask User Reps what training or information they will need to fulfil their role.
• Ensure User Reps understand their role and the roles of the other members.
• Avoid tokenism, ensure that users are involved throughout process.
• Involving users requires careful planning, allow extra time and resources.
• Users should have access to training, support and resources.
• Give plenty of notice of meetings inc. necessary papers.
• Ensure User Reps are not marginalised during meetings.
• The facilitator is personable and well respected.
• Good communication, minimal use of jargon/clinical terms.
• The user needs to be shown that their contribution is worthwhile, in the form of acknowledgement and feedback.

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Activities Of A User Group

Use the Essence of Care Benchmarking Document as a guide to User Group activities: i.e. patient information, reviewing the existing materials used by the service.

Users should be involved in:

• Assessing health needs and gaps in service provision.
• ervice planning decisions.
• he development of audit programmes and protocols including user choice of areas to audit.
• The setting of patient defined outcomes of treatment.
• The setting of organisational, quality and clinical standards.
• Monitoring services against standards.
• The development of patient centred guidelines.
• The development of care pathways.

Ideas for activities:

1. Review and discuss patient information.
2. Talk by company representative.
3. Arrange User Rep visits to relevant clinical areas (consider confidentiality issues around this).
4. Videos on continence related issues.
5. Speakers e.g. health professionals - physiotherapists, nurses, and consultants. Registered/fully qualified alternative therapists. Continence product company reps. Other organisations/charities - volunteers/staff.
6. Including a range of social activities is a good way of encouraging friendships and of keeping up interest in the group. Remember that many people with continence problems are isolated and may not go out much.
7. Create a small library of information , a review of new books and organisations.
8. A jargon free introduction to how the NHS is organised and other training sessions.

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First Group Meeting

1. Arrange seating to suit your users’ needs
2. Check heating, ventilation of room
3. Sign post the room
4. Organise refreshments

What should I take to the meeting?

• Stationery
• Incontact information
• Register
• Refreshments
• ID badge
• Sticky labels - for name badges
• Watch/clock (to maintain schedule).

Outline of Meeting
Do not be over ambitious with the agenda/content of your first meeting – keep it simple. Your main aim is to assess interest and get ideas on what people want. If possible provide free refreshments and lots of information.

Meetings should include the following preferably in this order:

• Introductions
• Housekeeping
• Ground rules
• Activity
• Refreshment break (tea, coffee, fruit juice water etc.)
• Group discussion
• Evaluation forms
• Close

Timing

How often will the group meet?
Although you may recognise a need for frequent meetings, it is important that key members of the group are present. When dates and times are decided you must stick to them.

How long should the meeting last?
This is up to your members but most meetings last 1? to 2 hours. Be aware of meetings over running–people have commitments, transport arrangements etc.

How often should the group meet?
This is up to your members and can vary from weekly to twice yearly. However, at the meeting remember to set the date and time for the next one.

Venue
The venue used by the group is important and needs careful consideration.

Think about:

TIP: Distribute maps with the location clearly marked.

Comfort -
People need to feel relaxed and warm. Will there be sufficient room for the meeting? Are the chairs comfortable? Are tea and coffee making facilities available?

Space -
Is there is enough room for presentations and group work?

Privacy -
Is the room quiet and private? (Remember people are discussing personal issues).

Safety -
Consider whether the venue is well lit/widely used and if the surrounding area is generally considered safe.

Equality

Who is likely to be excluded?
Ethnic minority groups
Those whose first language is not English
People with learning disabilities/mental illness/disabilities
Sensory impairments
Rough sleepers
The Housebound
Older people
Those on low incomes

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What Can I Do To Include Marginalised Groups?
The users may not be representative but this should not be used as an excuse not to engage users, a user perspective is what is required.

• Network with local minority group organisations.
• Advertise and promote the group in local places of worship and community centres.
• Invite community leaders to speak.
• Where possible use translators, signers etc.
• Advertise widely and use symbols, pictures and where possible translate into different languages.
• Timing of the group – are parents doing the "school run" able to attend? Are those attending weekly services at mosques, temples, synagogues, churches etc. able to come?
• It may be necessary to hold, separate groups for women, carers etc.

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Problems and Solutions
Even the most productive user group can encounter problems. Most can be dealt with without damaging the group or causing offence. Not dealing with problems can harm the group more than trying to tackle them, however sensitive you feel the situation is.

Common Problems

Fluctuating Attendance Levels
All groups face highs and lows of attendance – it is perfectly normal. Although you should be aware that changes in agenda/subject area may also be a reason for differing attendance levels.

One person regularly dominating support group meetings

Who may dominate the group?
This could be a group member or the facilitator.

Why can this be a problem?
It may prevent others from expressing their opinions/thoughts.
It may cause members to leave the group.

Why does a person dominate a group?
It could just be down to personality type.
It may be a way of seeking attention.
Group organisation is weak.

How can this be dealt with?
Bring it to their attention.
Explain that this is causing a problem.
Remind them of the ground rules.

TIP: Try saying: "Could we hear from someone who has not said anything yet?"
TIP: "What does everyone else think about xxxxxxx."

People not getting on

"Cliques"
This could be two or more people forming a "clique" which either knowingly or unknowingly reject other members of the group.

How can this be dealt with?

• Remind members of the ground rules.
• Look at the structure of group. It may be necessary to make some changes to encourage members to mingle.

TIP: Try exercises where members have to change partners/groups regularly.

Personality Clashes
As in all situations there will be people who just do not get on. There may be those with very fixed ideas about how to deal with certain issues, refusing to accept others’ views. There may also be an occasional straightforward personality clash between two members.

How can this be dealt with?

• Remind members of the ground rules.
• Discuss the situation with those concerned and let them know their behaviour is causing difficulties with other members. Ask if they have any ideas on how to resolve this.

If a member is unwilling to conform to these rules and consistently creates disruption it may be necessary to ask them to leave.

Stagnation
fter a group has been running for some time it can stagnate and enthusiasm may be lost.

How can this be dealt with?
The solution depends on the format of the existing group. Try to create new interest and enthusiasm.

Things to try:

• Ask members what they would find more beneficial.
• Increase membership – try more advertising.
• Focus on a special project.
• Organise social events.

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Common Fears

"It will take too much time and resources"
Although user involvement is a long term commitment it should not be regarded as a "chore" it will yield results which will eventually save time and resources. Eventually some of the reponsibilities may be shared as users take on key roles within the group.

"I’m concerned that the group will be very negative, complaints about pads etc."
Set clear ground rules about what the group is and what it isn’t. It is important to set the scene from the start, clarifying the aims of the group. It may be necessary to hold a meeting to discuss the issue to specifically address the issue e.g. explaining the provision of pads in your service.

"I am concerned that users will have too much power, they simply do not have the skills or knowledge to shape services effectively."
Users are according to NHS Policy now "central to the NHS" and must be involved at all levels. Users should be given equal status and their expertise on their condition acknowledged and respected.

"I feel our user group is expected to be the answer to all our problems."
Be realistic about what the group will achieve, effective dialogue with users can take some time to develop.

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What Help Is Available?
Use existing expertise and experience available within your Trust, local community and voluntary organisations.

Within the Health Service
Draw on national guidelines including NICE and NSF’s – use these guidelines to strengthen your arguments or identify areas to be explored. There must be a commitment by your Trust to user involvement if effective changes are to be implemented throughout the service.

Approach your Clinical Governance Team – they are involved with the quality of service delivery and should be able to offer information and guidance.

Local Community
Network and build as many good relationships with voluntary organisations as possible.

Useful Local Contacts:
Citizen Advice Bureaux
MS Society
Parkinsons Disease Society
Age Concern
Company reps
For more organisations see Incontact’s Directory of Organisations.

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Useful Resources

Most of the following items can be purchased online at Amazon. Please access Amazon here as Incontact receive a percentage of the purchase price.

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Useful Organisations

Centre for Health Information Quality
Highcroft
Romsey Road
Winchester
SO22 5DH
Tel: 01962 863511 ext. 200

College of Health
National charity providing information based on independent research.
Publications Unit
College of Health
St Margaret’s House
21 Old Ford
London
E2 9PL
Tel: 0208 983 1553

Help for Health Trust
Provides information on health for patients and carers in central/southern England.
Highcroft
Romsey Road
Winchester
SO22 5DH
Tel: 01962 841100
Fax: 01962 849079

Kings Fund
Independent charity promoting the health of Londoners. 11-13 Cavendish Square
London
W1M OAN
Tel: 020 7307 2668/9

LMCA
Long Term Medical Conditions Alliance
Unit 212
16 Baldwins Gardens
London
EC1N 7RJ
Tel: 020 7813 3637

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Example of Ground Rules
We will:

• Maintain confidentiality and respect each other’s privacy.
• Let one person speak at a time.
• Agree that one person will not dominate the conversation.
• Explain any medical words and not use jargon so everyone may understand what is said.
• Support and respect each other, not judge.
• Provide support and information not medical advice.
• Recognise that we are all individuals and not make generalisations.
• Not pressure anyone to disclose any information they do not wish to.
• Encourage and allow everyone to participate equally.
• Start and finish on time.

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What is Benchmarking?
A tool to measure and compare performance within and between organisations. It is a process of identifying, understanding and adapting practices to achieve best quality.

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History of Benchmarking
Benchmarking was devised in the corporate sector by Xerox in response to the competitive prices of Japanese rival companies. Recently, public services have started using the benchmarking process. The NHS has a long history of using comparative data and have used performance indicators since the 1980’s.

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The NHS and Benchmarking
The NHS Plan is firmly committed to involving patients at all levels.

"At every level there will be more patient power”
Alan Milburn (Secretary of State for Health)

"…patients must have more say in their own treatment and more influence over the way the NHS works.”
Changes for Patients

"ensure users and carers are involved in the planning, provision and audit of services.”
Good Practice in Continence Services(Guidelines)

One of the key areas in the Essence of Care (NHSE 2001) is Continence and Bladder and Bowel Care which defines best practice in the Benchmarking Toolkit.

The central theme of these benchmarks is user involvement at all levels:

Planning
Provision of services
Auditing of services

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What can Benchmarking do for you?

The aim of benchmarking is to achieve the most effective and efficient practices.

• Maximise and protect resources.
• Develop new services/ways of working.
• Build new relationships/partnerships.
• Gain management support.
• Highlight valuable services/staff.

Benchmarking will help you understand:

• Where you are
• What you want to achieve
• How you want to achieve it

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Common Fears About Benchmarking:

Benchmarking is often misunderstood and feared but in reality it is a very useful tool which enables goals to be attained more easily.

Benchmarking is not about competition or public “league tables.”

It is about learning and adapting from top performers.

Benchmarking is not setting impossibly high standards.

It is setting workable targets.

Benchmarking does not have to be expensive and time consuming.

Use simple methods to research best performance (telephone conferencing, one to one telephone calls, email and questionnaires.

The aim of benchmarking is efficiency.

However, benchmarking should be undertaken on a continual basis as it needs to be based on current best practice.

Common Problems

- Lack of commitment

+ Be clear about the benefits of benchmarking and recognise your strengths.

- Not prioritising

+ Get to know Your organisation and its needs.

- Lack of planning

+ Plan carefully, improve self-awareness.

- Pride

+ Accept that there are better services. Recognise your strengths.

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How Can Incontact Help in the Benchmarking Process?

	FACTOR	BENCHMARK OF BEST PRACTICE
1	Information for patients/clients/carers.	Patients / clients / carers have free access to evidence based information about bowel and bladder care that has been adapted to meet individual patient / client needs and/or those of their carer.
2	Patient /Client access to Professional Continence advice.	Patients/ clients have direct access to professionals who can meet their continence needs and their services are actively promoted.
3	Assessment of individual patient/carer.	Patients/ clients positive responses to the trigger question always leads to an offer of an initial bladder and bowel continence assessment.
4	Planning & implementation of care based on assessment.	The effectiveness of patients / clients care is continuously evaluated and leads either to the resolution of patients /clients needs or the modification of the care plan.
5	Education for assessors and care planners	Patients/ clients are assessed and have care planned by professionals who have received specific continence care training and are continuously updated.
6	Promotion of Continence and a healthy bladder and bowel	All opportunities are taken to promote continence and a healthy bladder and bowel among patients/clients and the wider community.
7	Patient/client access to continence supplies.	Patients / clients have access to appropriate “needs specific” supplies to assist in the management of their incontinence.
8	Education of the care deliverers	Patients / clients are cared for by carers who have undertaken continence care training which includes ongoing updating.
9	A Physical and Social Environment Conducive to continence and a healthy bladder and bowel.	All bladder and bowel care is given in an environment conducive to the patients/clients individual needs.
10	Patient to Patient Support.	Patients / clients have access to other patients/clients who can offer support and this is actively promoted.
11	User Involvement in service delivery.	Users are always involved in planning and evaluating services, and their input is acted upon.

Table: Essence of Care, DoH

Incontact can help your service attain best practice in the benchmarking process, making your service more responsive to users’ needs:

User/Support Groups

We offer support, advice and a range of materials to help you start and operate a successful user group.

Support

We provide a variety of support mechanisms for your users: telephone links, pen-pal/epal scheme, online chat, group meetings and a quarterly newsletter.

Training

We provide training courses/workshops for patients/users and health professionals

Information

We produce fact sheets, booklets, a quarterly magazine and website.

Patient Feedback

We can advise and help produce patient feedback surveys.

Promotion

We have an innovative range of promotional materials.

Accessing Hard To Reach Communities

Incontact works closely with ethnic minority/disability organisations and hopes to provide workshops and training on targeting hard to reach groups.

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Factor 1 Information for patients/clients/carers Information

“State information available (including information produced nationally and locally).

State how the information is adapted for different user groups and the individual needs of patients.”

Incontact can help:

Incontact’s information is written by and for people with bladder and bowel problems.

1. The quarterly Incontact Magazine - contains articles written by people affected by continence problems and the latest products and research news.

2. Product Information Guides.

3. Bladder and Bowel Booklet – written in a user friendly style with illustrations, also available in large print for people with visual impairment. Produced in consultation with the RNIB.

4. Booklets on bladder and bowel problems.

5. Resources Guide – an up-to-date list of continence related resources.

6. Organisations Booklet - an up-to-date list of useful organisations and web sites.

7. Support Network Newsletter - reviewed by consumers. Available in plain text, large print and on disk for those with visual impairments.

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Factor 10 Patient to Patient Support

"E Patients / clients / carers have no access to other patients / clients / carers for support.

D –B Patients/ clients/ carers have the opportunity to access other patients/ clients / carers but this is not actively promoted.

A Patients/clients/carers have the opportunity to access other patients/clients who can offer support and this is actively"

"Describe strategies used to put service users in touch with each other.

State methods used to make service users aware that they can contact others

Describe measures taken to set up or support a local self-help/user group. State barriers to support .

Describe links to existing local or national patient groups

State what information about local or national patient groups is given to service users."

Incontact can help:

1. Join Incontact as a professional member.

2. Display our promotional materials: posters, information cards, toilet stickers to raise awareness of Incontact to your service users.

3. Set up a user group or help with a support group in your local area. Incontact can offer support, advice and information on setting up continence related support or user groups. We can advertise your group in our magazine, newsletter and contact all Incontact members in your area.

4. We provide a variety of support mechanisms for your users: telephone links, pen-pal/email friends scheme, online chat, themed online chats, online message board, group meetings and a quarterly newsletter.

5. Our Organisations Guide contains comprehensive contact details of relevant organisations and websites.

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Factor 11 User Involvement in Service Delivery

“State methods used to secure user involvement e.g. focus groups, user forums, patients council, etc to include consideration of religious/cultural/language and age related and special needs issues.

Describe strategies used to involve users from isolated/hard to reach communities.

State how users are involved, how views are sought.”

Incontact can help:

1. Set up a user group in association with Incontact. We are developing a range of materials to help with this process.

2. Incontact offers training to health professionals and consumers on user involvement and related areas.

3. Incontact works closely with minority group organisations to ensure equality of access.

User Representation in the Benchmarking Process

• Users must identify areas of concern which can be benchmarked.
• Users must agree to the evidence that will be used in comparison (Phase 3).
• The benchmarking areas e.g. patient information professional advice, assessment etc. should form the basis of activities in user groups and as topic areas in questionnaires etc.

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Example (Factor 10)

Evidence: (To be completed by comparison group members for like to like comparison)

Monthly user group meeting for patients and their carers.

Display Incontact’s posters, information cards and toilet stickers in the waiting area and clinics.

Advertise Incontact’s telephone links, pen-pals and online support services in the clinics and in patient information.

Arranged for 2 user group members to attend Incontact’s Conference on continence care.

Distribute copies of Incontact’s Bladder and Bowel Problems Booklet and their magazine and newsletter to patients.

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Useful Benchmarking Resources

Websites:

www.benchmarking.gov.uk

www.nursingleadership.co.uk

www.doh.gov.uk/publications/pointh.html

www.nice.org.uk

http://www.best4health.org

Books:

Most of the resources can be purchased online at Amazon. Please access Amazon here as Incontact receive a percentage of the purchase price.

Select the link Benchmarking Books to look at the list of Benchmarking books.

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User Group Details on our Site

For your group to be included on the Incontact web site:

Download the following form Group Details - complete, print and post to the Incontact Office

 

or include the following information in an email and send to info@incontact.org

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Name of Group:
Trust Name:
Town/Borough:
Key Contact Name:
Key Contact Telephone Number:
Key Contact Email Address:
Aims of Group:
Meeting Dates and Times:
Meeting Location:

For more information on user groups please contact:

Incontact	Tel: 0870 770 3246
SATRA Innovation Park	Fax: 0870 770 3249
Rockingham Road	Email: info@incontact.org
Kettering
NN16 9JH

 

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