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?
It is also important to be explicit in any ‘job description’ about what practical support is available to users and carers. Facilities may need to be provided for people with special needs, resources such as access to PCs, the internet, reprographics and local health libraries may need to be made available.
Quality will also need to be assured for that other set of users, the students being offered education – assessment of user and carer contributions will need to be factored in, with feedback offered to contributors.
Rewards and recognition:
Some people are happy to give their time and energies free of charge, often in order to ‘give something back’. However, anyone contributing to our educational activities appreciates being thanked and recognition can be made through ‘payment in kind’ such as being invited to attend School seminars, lectures and other events, and being given certificates recognising their contribution.
But most often we should pay people for their time and expertise just as we and our colleagues are paid. Plus, we will often be involving people who, because of their illness or disabilities, are on a low income. Having to travel in London, 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. So, wherever possible, we should pay people for their involvement.
Where people are being paid, users and carers who are working on committees, recruitment or teaching should be paid as guest speakers, and the module leader should explain that payment includes time for preparation and travel costs.
The School of Health Sciences has a budget for paying users and carers involved in educational activities, which is held by Martin Steggall. Below is a step-by-step guide to arranging payment.
The organiser should provide the necessary forms (see below) 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. Payment can ONLY be made into a bank account via BACS. Cash payments are not possible.
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 for researchers: http://www.invo.org.uk/posttypepublication/payment-for-involvement/
School of Health Sciences Payment for User and Carer involvement: A Step-by-Step Guide
1. Discuss and agree the level of payment with the service user, in line with School policy.
2. Complete the Miscellaneous Payment form [link]. When completing the form please ensure all fields are completed accurately paying particular care to the payee’s bank details.
3. The following codes need to be used:
i. Cost Element 6111 (Guest Speakers -For individuals delivering a talk on fewer than three occasions in any 13 week period)
ii. Cost Centre HU005
4. Obtain initial signed approval from the Programme Lead, then submit to Martin Steggall M.J.Steggall@city.ac.uk and copy to Sharan Sumal Sharan.Sumal.1@city.ac.uk
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.
Representation and diversity
When users and carers are involved in the provision of health care services their ‘representativeness’ is often open to question – more than is applied to the representativeness of academic or clinical staff! Individuals may not present the desirable range of views: representatives of campaigning groups may have axes to grind: carers may not be good proxies for users’ views (as they have their own interests): ‘ex-users’ may not be able to represent ‘users’ (Simpson et al 2002). Equally, you may be challenged to demonstrate that service users and carers are representative of local ethnic and cultural groups or sufficiently reflect specific local groups including asylum seekers, refugees and people with levels of low literacy.
The holy grail of representativeness may not be achievable, but working solutions can be found, perhaps beginning with the generation of a resource profile of local groups/users/carers. Other approaches that have been used include users and carers being nominated by local service user groups; a formal stakeholder analysis being undertaken to ensure that all stakeholder groups are approached; time and resources being consistently dedicated to the fostering of local relationships (Baxter et al 2001). Underlying principles that seem to be important are transparency and flexibility – and always involving more than one user or carer. But don’t let worries about representativeness stop you from starting. It’s better to get started and reach out to others from there.
The ‘professionalised’ user
There is risk that certain groups or individuals will be ‘over-used’, for whatever reason. This could lead to boundaries between providers and users being blurred and users losing their ‘bite’. Again, there may be no way to avoid this problem absolutely, so clarity and openness are important. When does a ‘user’ become an ‘ex-user’, and is this relevant? Does a user’s experience of care have a ‘shelf life’? Can an experienced user-lecturer help recruit new users? Can a pool of local users and carers be established and maintained to be a resource for specific educational needs?
Tell us how you get on:
If you have success involving someone or a group of people 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!