LIVED EXPERIENCE AT ECDP – INITIAL REPORT (October 2010)

Paper by Faye Savage (Lived Experience Officer) and Rich Watts (Director of
Policy & Development)

Introduction

1. As part of ECDP’s commitment to ensure the voice of disabled people is

captured and used to shape and inform ECDP’s work, we have established and
embedded the concept of Lived Experience in everything we do.

2. Lived Experience represents the everyday lives of disabled people. It is the

experience that people develop from living with and managing their impairments
on a day-to-day basis. It is the experience that people develop from the attitudes,
reactions and barriers they encounter in society.

3. One key development to capture and understand the Lived Experience of

disabled people in Essex was the Lived Experience Log. This was introduced in
July 2010 to ensure we effectively captured the information disabled people
share with us in our day to day interactions with them. It put into practice one key
element of the Lived Experience workplan developed by the Lived Experience
Officer over the preceding months.

4. This report – which has been adapted from an internal report – shares our initial
experiences of introducing the Lived Experience Log. It covers both the practical
aspects of implementing and using the Log, though mainly focuses on the
content collected. It is shared with the intention of (a) updating interested
stakeholders on ECDP’s Lived Experience work, and (b) sharing learning on
introducing this type of work in an organisation of our kind.

5. On the basis of this report, a number of recommendations were made to the

Executive Team surrounding proposed next steps to further embed the Lived
Experience work throughout ECDP. We will share this progress in due course.

Section 1: Practicalities of the Lived Experience Log

6. This section details how the Lived Experience Log was introduced to ECDP staff
and the issues identified.
 Training

7. Training for the Log was carried out over three sessions to all staff at ECDP
(approximately 50 people). Each staff member was given a guide to use when
completing the Log and a presentation was delivered to compliment this. Those
who were unable to make any of the sessions were trained separately. Since the
initial training, presentations were also delivered at two staff inductions to ensure
new staff understand what the Log is and are supported in using it.

Questions arising on how to use the Log

8. The use of training to use the Log was successful. Since introduction, there have
been very few questions on the actual input of data and most issues raised
surrounded which ‘types’ of data should be included and how these are
categorised – an issue identified before roll-out.

9. Therefore, the key to support for staff and any update sessions is in addressing
what should and should not be included on the Log.

10. Some teams were concerned about how they would be able to collect Lived
Experience when their work does not require them to have a great deal of
contact with individuals. These concerns were addressed by using examples of
information which could come from organisations or businesses which would still
be relevant to the Log. Likewise, some teams felt that every interaction they had
through their work could count as Lived Experience. It was therefore decided that
themes or trends could be included in the Log to help give some structure to
information included in it. More generally, familiarity with the Log will increase
people’s confidence over time as to what information to capture and how to
capture it.

Section 2: Analysing the Lived Experience log

11. This section details what the Lived Experience Log tells us about the external
engagement with the Log and some information about the current environment
for disabled people.

Who contacted ECDP?

12. In total, 132 entries were made to the Lived Experience Log. Tables 1, 2 and 3
provide a breakdown of who has contacted ECDP and been recorded on the
Log.

Table 1: Entries by relationship of individuals making contact to ECDP

Relationship to ECDP Number
Disabled person 31
Public Sector Worker 25

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Relationship to ECDP Number
Client 25
Informal carer 18
Full member 14
Volunteer 4
Carer 2
Member 1
Personal Assistant 1
Private Sector Worker 1
Blank 10
Total 132

Table 2: Entries by area

Area Number
Mid Essex 53
South East Essex 19
North East Essex 17
South West Essex 12
North West Essex 5
Southend 4
Thurrock 3
North Cambs 2
East Cambs 1
South Cambs 0
West Cambs 0
Unknown 16
Total 132

Table 3: Number of individuals who make contact with ECDP from each
impairment group
Impairment Group Number % Total % total % PASS % SDSS
entries member clients clients
s
Physical Impairment 49 37.1 55.9 32.2* 19.1*
Learning Disability 22 16.6 21.6 19.2 10.9
Mental Health 6 4.5 5.2 8.1 8.2
Sensory Impairment 5 3.8 5.3 32.2* 19.1*
Long Standing Health
Condition 3 2.3 6.8 - -
Other 27 20.5 5.2 - -
Not stated 20 15.2 -
Total 132
*This figure represents both physical and sensory impairments

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13. Of the 132 entries made, 31 were from disabled people. An amendment needs to
be made to the Log here as clients and full members are likely to fall into this
category also, creating ambiguity. Unsurprisingly, clients (25) and full members
(14) were spoken to frequently, as well as public sector workers (25) and informal
carers (18).

14. A majority of entries came from mid-Essex (53) and over 80% of total entries
were from one of the five areas of Essex. 5% came from Southend and Thurrock
and only 3 entries (or 2.3%) of the entries come from Cambridge. It is very
difficult to analyse if areas are being underrepresented as not all ECDP services
operate in all of these areas.

15. Some 49 (37.1%) entries were from (or on behalf of) someone with a physical
impairment. This was closely followed by those with a learning disability (22 /
16.6%). Once the controlling factor of non-members etc. is taken into account,
these results broadly mirror both membership and service provision breakdowns
by impairment groups, as shown in the final columns of Table 3. This suggests
the Log reflects the make-up of ECDP’s membership and client base.

Information Types

16. When data is entered into the Log, staff are asked to select a theme. As a result,
staff interpretation inevitably plays a part in the way information is categorised so
that, for example, entries could be included under more than one category. This
is not an issue that could be fixed by amending the Log.

17. Table 4 shows the number of entries under each theme, and beneath it is a brief
analysis of the trends which emerged under each theme. Due to the work of
ECDP generally and the teams who entered most information more specifically,
social care and independent living were recurring themes.

Table 4: Log entries by theme

Theme Number
Social care 55
Other 17
Independent living 17
Transport 10
Employment 8
Leisure, social and cultural activities 6
Health 4
Living standards 3
Discrimination 3
Communications 3
Post-19 education and training participation 2
Participation 2

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 Theme Number
Housing 2
Justice system 0
Children's outcomes 0
Total 132

18. Issues identified were as follows:

• Communications: Two of the three entries referred to those from ECDP (one
praising ECDP’s Insight film and the other asking if EFFECT could be offered
in Easy Read)
• Discrimination: Three entries, including access discrimination, employment
discrimination and education discrimination. In two cases, members were
signposted to other organisations (DIAL, CAB, ILA etc)
• Employment: Two major themes are apparent in the eight employment related
entries: benefits (or fear of the loss of benefits) and feedback on work
experience organised by Insight
• Housing: Problems with council housing and difficulty getting help with repairs
to an owned house
• Independent living: Theme of worry surrounding loss of benefits (ILF, DLA)
and what this will mean for individuals who currently rely on them to live
independently. A few requests for information on equipment and services
(mainly Direct Payments and Personal Budgets)
• Leisure, social and cultural activities: Theme of entries related to inaccessible
pathways, cinemas, hotels etc. Feedback on Insight assisting people access
new activities
• Living Standards: Some difficulty accessing services and associated
problems with this
• Participation: Positive feedback on ECDP’s ‘How to Manage Your Health’
course and entry relating to potential for peer support for people with new
impairments from those with more experience
• Post-19 education and training participation: College reported difficulty
obtaining funding since cuts. Young person struggling to find work after his
access needs failed to be met by previous employer
• Social Care: Overriding theme of difficulties or confusion when trying to
access or find appropriate social care services
• Transport: Issues mainly focused around access and difficulties using public
transport.

Conclusion and next steps

19. This report has explored the first 3 months of the roll-out of the Lived Experience
Log, covering both the practical aspects of implementing and using the Log, but
mainly focusing on the content collected.

20. To a large extent, many of the issues and outcomes were anticipated. At this
stage, and for the next 3 months (to end December), we will focus on the

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 practical elements arising from the Log to ensure the process is sound. This will
allow us to (a) build a solid platform for Lived Experience at ECDP, and (b) have
a much wider range of information and trends on which to base concrete actions
in the future to address issues raised.

21. The focus of work on the Lived Experience Log for the next 3 months remains on
developing and embedding the practice of Lived Experience within ECDP.

22. Action arising from the Log, based on the information and trends we gather,
should go forward from January onwards, once we have a wider evidence base
from which to start.

23. In the meantime, the Lived Experience Officer will undertake the following over
the next 3 months:
• Follow up with all Managers in order to highlight further the results of the initial
roll-out of the Log, the benefits resulting from it and areas for further
development
• Attend team meetings over the coming weeks to update staff on the Log and
offer support and assistance in taking it forward
• Send communications to all staff via email to further embed the Lived
Experience approach and Log with all staff
• Run further training for staff on this topic, if deemed necessary
• Ensure all issues and actions identified are taken forward.

For more information about ECDP and the work we do, please visit our
website: www.ecdp.co.uk.

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