Frequently Asked Questions about User and Carer Involvement

How do I find a local patient/user/carer representative for my committee/meeting/teaching/project?

 

Decide exactly what you need:

First of all, think about why you want to involve someone who is a patient or service user or carer. What do you hope to gain from it? What can they bring to whatever it is you are organising that can not be done by a member of existing staff? Do you actually need a person or would it be just as useful or even better to make use of user/organisation produced literature, videos, blogs, websites, etc? If you are going to ask someone to become involved it is often good practice to involve two or three people so they can share the load, offer a wider range of experience and perspectives and support one another.

Role description:

It is a good idea to draft out a ‘job or role description’ and person specification so you are clear about what you want – just as you would for any other job! Doing this does not take long but helps you focus on what it is you are looking for. It also provides you with something you can show any potential participants.

Example Job Description & Person Specification

Preparation, training and support:

Next you need to think about how you will prepare, train, support and reward these people. This may not be as awful as it sounds. Many people will already possess the skills and qualities that you are looking for without any additional training. Some will not need much support. But it is your ethical responsibility to consider these issues before you start approaching them. We need to ensure that we are not adding to the person’s difficulties or causing them harm. What about if they have children or other dependents or special transport or access requirements? Who from the staff will meet with and explain the work required and provide ongoing contact and support for that person? Do they need to access computers and photocopiers to prepare materials? Do they an introduction to the teaching pods etc?

Rewards and recognition:

Some people are happy to give their time and energies free of charge, often in order to ‘give something back’. But we will often be involving people who, because of their illness or disabilities, are on a low income. Having to travel inLondon, perhaps buy a drink and a meal will put them out of pocket. For some, what may seem like relatively small amounts of money to us, can be enough to cause difficulties, embarrassment or prevent them taking part.

Where people are being paid, users and carers who are working on committees, recruitment or teaching should be paid as visiting lecturers, and the module leader/organiser should explain that payment includes time for preparation and travel costs.

The organiser should provide the necessary forms and explain how the claim for payment will be processed (and the time it takes); and check whether the user/carer faces any complications concerning payment (e.g. with benefits) and help explore possible solutions.

Guidance on covering expenses, payment for time, skills and expertise, and issues you need to be aware of when making payment can be explored in more detail in this document produced by INVOLVE:

http://www.invo.org.uk/posttypepublication/payment-for-involvement/

Finding the right people:

Now you have completed the preparations, you can think about trying to find a suitable person or people. One way is to establish good relationships with local patient/user/carer organisations, such as self-help groups, voluntary organisations, Trust patient involvement facilitators, etc. Find out which relevant organisations or groups operate in your community – offer to give a talk on your work or project and invite interested people to get involved. Take along some leaflets with contact details, provide a poster.

Don’t expect other people to do all the work for you. Many of these groups and people are already very busy responding to other priorities and demands. But most people will be delighted to meet with you and hear what you have to say. If you can offer something in return and make this an exchange of information or skills you are even more likely to get a positive response. Offering training and support to develop new skills (e.g. sitting on committees, giving a presentation) is one way of helping to build capacity amongst the user/carer organisations whilst ensuring that you recruit your user and carer representatives.

Tell us how you get on:

If you have success involving someone from the local community in your teaching and learning activities, let us know! We are very keen to post examples on the blog to inspire others.

Good luck.