Experts by Experience

Experts by Experience play a vital role in helping the organisation to understand how it feels to access services, or to care for someone who does. Experts get involved in different types of activity and we are incredibly grateful to each individual. 

At Dorset HealthCare we have Experts by Experience who are a part of our 'central team' but also have specific teams involved with different services, for example in Dorset Pain Management Service.

 

Who are Experts by Experience?

Experts by Experience bring “lived-experience” of using NHS services, caring for someone in this situation or of identifying with a particular group or community. Some Experts by Experience bring lived-experience of living with a condition or impairment, of experiencing physical or mental health issues, or a combination. Experts bring expertise of what it is like to access services from an individual perspective.

“I think professionals see things in black and white and the Expert by Experience brings that really big grey area and that real ’but what if…’ that happened “ Helen, Expert by Experience.

 

Experts by Experience come from a wide range of backgrounds and bring diverse skills, experiences and perspectives. This is essential, to ensure the Trust’s work is informed by the many different people who need our services.

“Having an Expert by Experience in the room always brings it back to the patient… so it is really important and I’d recommend to any team” Samantha, DHC Staff

 

Watch a short video to hear directly from some of the Expert by Experience team and staff who work alongside them.

 

What types of activity do Experts by Experience get involved in?

Experts by Experience get involved in different types of tasks and projects some of which are listed below:

  • being part of an interview panel
  • reviewing any new documentation which has been put together for patients/carers
  • supporting staff training
  • sharing lived experience as an opportunity for learning and development
  • attending engagement or network events
  • bringing patient/carer perspective at organisational governance meetings
  • supporting patient safety discussions
  • developing training and learning tools
  • attending and sharing at conferences

The team which support the Experts by Experience continually look for new opportunities and do this with the understanding of areas of interest and passion in the Expert team.

 

All Experts by Experience can choose what they get involved in. We use task descriptions to help with this and in some instances have developed guidance:

Expert by Experience Patient Safety Partner Task Description

Expert by Experience General Task Description

Being on an interview panel

Useful documents

As an Expert by Experience there are several documents which are regularly used. These include: 

Experts by Experience agreement

Self-reflection for general Expert by Experience

Confidential Wellness Action Plan 

Declaration of interests

Payment and Expenses claim form

If there are additional documents which you feel need adding to this section please let Participation Development Lead know. 

Looking after your Wellbeing as an Expert by Experience

Expert by Experience's wellbeing is paramount and should always take precedence. We also recognise that everyone experiences times where their wellbeing might not be as good as others. Sharing lived experience and taking part in projects which individuals particularly passionate about can at times be challenging too and as such there are a variety of supports in place and available.

·        Talk to other Experts by Experience who can provide peer support

·        Approach Participation Development Lead or other staff member for support

·        Compile an action plan

·        CareFirst – offer advice and guidance, support webinars, 24/7 phoneline answered by qualified counsellors: 

www.carefirst-lifestyle.co.uk           

username: DHUFT               

password: wellbeing

·        Visit the Here for Each Other website: https://joinourdorset.nhs.uk/wellbeing/

·       Join a Trust network: Open Minds, Multicultural community, Hidden Abilities, Faith and Spirituality

If your wellbeing is affected by ongoing health and wellbeing issues, please let us know so we can make a referral to Occupational Health.

Expenses and payments

We recognise the significant commitment and risks Experts by Experience take, sharing lived-experience at an in-depth level during their activities. For these roles, we offer an involvement payment, to recognise their commitment, the skills, expertise and personal cost this involves and to develop parity between professional and lived-experience.

Involvement payments are offered on a sessional basis. This does not take in to account the exact time an Expert by Experience is involved in an activity but rather, the “block” of time that their involvement relates to

 

Length of activity Sessions  Amount claimable
Anything up to 2 hours 1 £20
Between 2 and 4 hours 2 £40
Between 4 and 6 hours  3 £60
Between 6 and 8 hours 4 £80

 

Covering out of pocket expenses

By ‘covering expenses’ we mean reimbursing the costs that are incurred by people whilst being involved in activities forus. Out of pocket expenses which should be covered include (but are not limited to) travel, accommodation, subsistence and carer support where necessary. Other expenses, such as data usage, can be considered on a case-by-case basis and must be agreed in advance.

Individuals must produce receipts for their out of pocket expenses, or complete mileage forms, to ensure the Trust covers the exact cost. Reimbursing more than the exact cost can be seen as a providing payment, which would then be taxable and affect benefits.

EBE 3.png

Payment and Expenses claim form

 

If you have any questions or require any support with this please contact:

Anne Gaston: Participation Team Administrator Anne.gaston@nhs.net

And Participation Development Lead  dhc.participation@nhs.net

 

 

Training, Learning and Development

Essential training for all Expert by Experience activity can be accessed on eHub and includes:

Experts by Experience will be asked to 'refresh' their learning on the above topics in line with the organisations requirements.

 

In addition to mandatory training, which can be accessed. Some of this includes:

  • Sharing lived experience
  • Mentoring from another Expert by Experience
  • Shadowing
  • Effective communication
  • Taking part online

 

 

 

Sharing lived-experience

Not all activities involve actively sharing lived experience. Some Experts by Experience share a perspective as a patient, carer or member of the public, without sharing what has happened tpersonally. This input is extremely valuable and will actually be more appropriate for some activities.

Many people start by attending general group sessions and then work up to other tasks which are more involved, such as sharing your personal narrative in a training session, sitting on an interview panel or supporting other patients and carers, drawing on your own lived-experience.

We take this approach as sharing personal experience is very different from other workplace activities and can have a profound impact.

 

How you might feel ?

Sharing lived-experience is intensely personal. Everyone approaches this differently, bringing their own motivations and experiencing different emotional impacts.

Experts have described sharing their experiences and hearing from others as: inspiring, motivational, insightful, cathartic, rewarding and energising – with a feeling that something positive has been achieved.

However, even the most experienced Expert by Experience will sometimes feel upset or triggered unexpectedly. It can be hard reliving difficult memories and emotions or hearing about others. 

Experts are encouraged to approach the Participation Team staff members or other key staff that the activity involves as soon as possible if sharing lived experinence is having any kind of negative or detrimental impact.

 

Top tips for sharing your experiences for an Expert by Experience

  • They are your experiences - you need to feel in control
  • think about what you are comfortable sharing and what you want to keep private
  • each situation and day is different, you can change what you wish to share. Please never think twice about saying “I don’t have anything to add at the moment”
  • talk through how your activities are going and any emotions they are bringing up in you, particularly after your first activities but also whenever necessary. You can do this directly following your activities or set aside a time with a member of staff
  • reflect as a group, one-to-one or on your own, can support with reflective practice resources
  • go at your own pace – take a break.

 

Resources, further reading and signposting

Empathy, vulnerability and compassion

Understanding our window of tolerance

Recovery Education Centre online and face to face learning opportunities

If you would like any further information or signposting please do contact Participation Development Lead. 

 

Are Experts by Experience staff?

Experts by Experience bring an independent perspective which is invaluable. Experts approach activities as someone who uses Dorset HealthCare services, rather than someone who is already part of the institutional culture and influenced by their job responsibilities. Sometimes Experts are described as a “critical friend” to the Trust.

The fact that Experts by Experience are not employed means the role is much more flexible and hopefully easier to engage with for people who do not want to sign up to the commitment and responsibilities that come with an employment contract. Instead of contracts of employment we use an Expert by Experience agreement, for example.

Things such as annual leave or holiday, probation periods or periods of resignation aren't referred to or used for Experts by Experience as all activity is entirely optional. We also use 'task descriptions' rather than 'job descriptions'. 

As a “non-staff member” Experts by Experience are still a vital member of the team and organisation and wherever possible, included in organisational communications, planning and events.

Can staff members also be Experts by Experience?

Members of staff may also use services and bring lived-experience but their perspective will be informed by their intimate knowledge of the organisation and their profession – their experience of using services will be very different from people who cannot benefit from this “insider” knowledge!

For this reason, staff members of Dorset HealthCare are encouraged to share this during the informal interview so we can discuss available supports.

There are other employed roles within Dorset HealthCare, where lived-experience is a key component, for example, Peer Practitioners, Peer Specialists (through the Dorset Mental Health Forum) and Lived-Experience Co-ordinators.

What might the journey look like to becoming an Expert by Experience?

EbE Journey.png

There are a few significant steps which we ask people who are interested in becoming an Expert by Experience to take including:

Completion of a Registration Form (after which there is a 1:1 discussion)

Where necessary a DBS check is arranged. Not all Experts by Experience tasks require a DBS check and a criminal record will not necessarily prevent individuals from participating. Please contact the Participation Team if you would like to discuss this.

There will be a period of shadowing, orientation to opportunities and we ask for full engagement with this as it enables us to work well together. 

 

What happens to my data and personal information?

Under the Data Protection Act 2018, Dorset HealthCare requires consent to keep personal details. For more information about this please contact: Participation Development Lead or Lived Experience worker in the host service. We seek consent to store this information as part of the Expert by Experience agreement.

Will claiming expenses and involvement payments impact on my benefits?

Please be aware that accepting Involvement Payments and sometimes even out-of-pocket expenses, could be seen as an income or readiness to work by some agencies. This can have implications for benefits, sick pay, pension and tax. We would encourage you to seek advice if you have concerns about this.

Citizen’s Advice: www.citizensadvice.org.uk; 03444 111 444

Job Centre Plus: 0800 169 0310

Who do I talk to if I am feeling a bit stuck or lost with my involvement?

When Experts by Experience register with us there will be a named staff member. This is likely to be a member of the Participation Team, but it may be that Experts feel more connected to the service that they're supporting. In the first instance this person is the main contact. 

Professionals