How to obtain consent

The consent you need will depend on how you plan to use the Inclusion Web. Some people have just used it as a conversation starter, and not written on the chart at all, while others have collected numbers and carried out statistical analysis.

Consent from the person themselves

Participants should be provided with information explaining in clear language how the Inclusion Web is used, what data is collected and how confidentiality is to be maintained. A consent form should be offered at least 24 hours before the Inclusion Web is used and participation must be voluntary.

What about people who lack capacity to consent?

There are many circumstances where we need to undertake assessments and draw up care plans for people who may lack the mental capacity to consent. In these circumstances, whether it concerns a medical assessment or the Inclusion Web, Best Interest principles apply.

The person should be as much in charge of the process as they can be. If the person lacks mental capacity to consent to using the Inclusion Web, staff have a duty of care to apply best interest principles to the way that they engage with the person.  Staff must not complete the Inclusion Web on the person’s behalf when they would be able to do it for themselves or have refused permission for it to be used.

Does the person lack capacity? Ask yourself these questions

  • Can the person consent to us completing the Inclusion Web together?
  • Can they understand what the Inclusion Web is and the process for using it?
  • Can they weigh up the pros and cons of doing or not doing it?
  • Can they communicate their decision?

If the answer to any of the above is ‘No’, the person most likely lacks capacity to consent to doing it.

In situations where the person lacks capacity, you need to make a Best Interest decision about whether the person would benefit from using the Inclusion Web. The following questions are adapted from the Best Interests Checklist of the Mental Capacity Act and will help in making this decision:

  • Might the person have capacity at some other time? Can you delay until a time when they have regained capacity?
  • Is there some way in which you can involve the person who lacks capacity? You should find out what they think if you possibly can.
  • You must have regard for the person’s past and present wishes, feelings, beliefs and values. Do they have any interests that could be furthered? Do they enjoy contact with friends or family?  Have they had opportunities to do carry out community-based activities in the past and what have they enjoyed? Are they communicating that they’re lonely?
  • What would be the risks of making community connections? What are the risks of not making community connections?
  • You should consult with relevant others who are involved in the care of the person. What do other people think – Friends, family, advocate, support team? Are others unduly pessimistic? Can others offer support?
  • Do not discriminate. Deciding not to use the Inclusion Web simply on the basis of a lack of ability to consent would be discriminatory.

You should use your skills in interpreting the communication and behaviour of the person to make your best guess about what the person would say if they had the ability to communicate clearly. To this attempt to ‘read’ the person’s preferences, you should add insights from the people who know the person best (family members, longstanding friends and care staff), but only to reach a view about what the person would be communicating if they could do so. There is real skill here in listening to others and gleaning the preferences and choices that the person themselves likes to make, rather than the things that other people want to give them or think are important.  An Independent Advocate might be able to help.

Completing the Inclusion Web is only a start in the process of building a better life in the community with more meaningful roles and positive relationships. The Inclusion Web simply records things as they are, and helps the team around the person to work with that individual to make a plan about how to increase meaningful community participation. So, completing the Inclusion Web simply records the way things are, and action usually follows to make things better. You must continue to pay close attention to the person’s preferences and wishes throughout the period when they are trying out community opportunities, so that the increases in community places and networks are things that the person wants and enjoys.

In summary, the lack of mental capacity for making informed decisions about use of the Inclusion Web is not a reasonable justification for condemning the person to an excluded, isolated life. Creative ways need to be found to work with the person so that their preferences shape the life they lead in the service and in the wider community.

Consent from your organisation

It is important to check that your plans for collecting information when using the Inclusion Web do not violate any rules in your organisation or group about gathering, interpreting, storing or publishing information about participants.

Consent from ethics committees

Before introducing the Inclusion Web as a regular means of obtaining data about a group of people, it is important to consider whether the standard procedures for carrying out research at your organisation or group affect what you are doing. You may wish to check with a National or Local Research Ethics Committee.

Consent from NDTi

As the designer, NDTi imposes the following conditions on use of the Inclusion Web:

  1. The guidance published by NDTi on the use of the Inclusion Web should be followed. NDTi is keen to train people to ensure it is used appropriately.
  2. Anyone planning to use the Inclusion Web should obtain help from another person to use the Inclusion Web to review their own life before applying it to others. It is important to get a personal sense of how the Inclusion Web works and what it feels like to discuss the topics it explores.
  3. NDTi would like to stay in touch with individuals and organisations who are using the Inclusion Web, so that we continue to learn and improve.