NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
What we had to do
The Disability Equality Duty requires organisations to involve disabled people in the development of the Scheme. This involvement must be more than just consultation, and it must have a significant influence on the contents of the Scheme 1 .
Involvement must be with disabled people rather than organisations, and should include a range of impairments.
What we did
NHS Lothian carried out a range of activities to involve disabled people in the development of the Scheme, throughout summer and autumn 2009.
These were the priorities identified by disabled people who took part in the involvement activities:
Priorities identified by disabled people:
1. All staff have positive attitudes to disability through effective leadership and training in disability equality.
2. All barriers to access have been tackled, including communication.
3. NHS Lothian has become an employer where disabled people are treated equally.
4. NHS Lothian is able to work with service users and partner organisations to support independent living and anticipatory care for disabled people.
These priorities were used to set out the action plan in the
Disability Equality Scheme. However there were many other comments and suggestions made by disabled people and a significant number of these are also represented in the action plan.
1 Disability Equality Duty Code of Practice for Scotland 2006
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
Involvement activities:
1. Disability Equality Steering Group:
There were four meetings of the group from July 2009 to
November 2009. The group was made up of 10 people, 8 of whom were disabled. The remaining two members were carers and relatives of disabled people from different age groups. A wide range of impairments were represented. Members were from different age groups, ethnic backgrounds, faiths and sexual orientations. There was an approximately equal gender split.
The group identified the key issues for disability equality, and then decided on priorities for action and style and format of the
Scheme. The group agreed that the Equalities Measurement
Framework was appropriate as the structure for the document.
Notes from the meetings, as well as the evaluation report for the group, are available from equality contacts at NHS Lothian (see contacts section in the Disability Equality Scheme).
Members:

Gordon Mungall (representing Disability West Lothian)

John Murdoch (representing Lothian Centre for Inclusive
Living)

Catherine Garrod (representing Lothian Centre for Inclusive
Living)

Wilma Lawrie (representing Patient Public Partnership
Network, Royal Infirmary Edinburgh)

Zoe Picton-Howell (parent of disabled child)

Teresa Straczynski (representing Alzheimer Scotland, Polish
& Ukrainian Support Service, parent of disabled person)

Alison Robertson (representing Royal Edinburgh Hospital
Patients Council)

Colin Young (representing Special Needs Information Point,
Royal Hospital for Sick Children)

Ross MacPhail (representing Royal Edinburgh Hospital
Patients Council)

Michael Pisanek (NHS Lothian staff member, trade union member)
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
NHS Lothian staff in attendance:

James Glover, Head of Equality & Diversity

Lesley Boyd, Health Inequalities Manager

Jim Robinson, Health Improvement Facilitator
Evaluation of the meetings of the Group:

Evaluation was carried out after the first meeting, and again after the third.

The arrangements before each meeting, including the accessibility of the papers and the time people had to read them, were rated highly by all respondents, as were the programmes for discussion at each meeting and the extent to which people felt able to contribute.

Following feedback from the first meeting, the venue for the second and third meetings was changed to the Thistle
Foundation, Niddrie Mains Road, Edinburgh. All respondents rated the new venue highly although one felt that the site was confusing for visitors.

All respondents felt that the series of involvement meetings was very useful (average rating 8.2 out of 9), and there was enthusiasm for further involvement with NHS Lothian.
Diversity monitoring:
Impairments represented
Ages represented
Eight of the ten members are disabled people.
Impairments include mobility impairments, sensory impairments, mental health, long term health conditions.
Youngest in 20-29 age group, oldest in 61-70 age group. Most members in range 41-60 years of age.
Ethnic background
Gender
Predominantly White Scottish, with two members from ethnic minority backgrounds.
The group was evenly split with 50% male, 50% female membership.
Geographical West Lothian, Edinburgh, East Lothian
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1 areas represented
Religious belief and faith
Sexual orientation
Those members who indicated a religious belief were predominantly Church of Scotland but other Christian faiths were represented, including Roman Catholicism and the Unitarian church.
A number of the members of the group indicated their sexual orientation. For confidentiality reasons this information is not included here.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
2. Involvement event:
Over 40 people attended this event held on 5 August 2009. This included 33 disabled people and 8 carers or family members, with attendance from across Lothian including Black & Minority Ethnic disabled people. The event was publicised through NHS Lothian networks and its voluntary and public sector partners including the
Edinburgh Equality Network and NHS Lothian Public Partnership
Forums.
A very wide range of impairments and age groups was represented. A great deal of detailed feedback was obtained about what NHS Lothian was doing well, what it needed to improve and priorities for action.
The report from the day, together with monitoring information and a detailed evaluation report (showing that participants rated the discussions on the day highly) is available from the equality contacts listed in the Contacts section of this Scheme.
Feedback: what NHS Lothian is doing well

Services in primary care have improved due to better training for GPs and their staff.

Waiting times have improved with improved speed of response to needs.

Consultants, particularly younger ones, are taking a more holistic view. They are seeing individuals as a person not just focusing on the specific disability or condition.

Transport has become better organised, arriving on time more often.

Appointments are more often being timed to link with public transport services.

Increasingly open and active engagement with users. The fact that the event took place was welcomed as an indication of this.

NHS Lothian seems to be improving joint working practices with other organisations.

Generally it was felt accessibility of services had improved.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
Feedback: what NHS Lothian could do better

More work should be done to routinely gather patient experiences, and this should be more inclusive of a wider range of people.

Third party or sub-contracted services do not routinely involve the user and do not seem to be accountable for the services they provide.

Too many staff still make assumptions about patients and do not see the whole person. Training and changes to staff culture are needed to address this.

There is little information in accessible formats both at a local and national level

Staff should recognise patients and carers as experts in their own disability. Care should be individually focused and based on information that has already been submitted to save disabled people from repeatedly giving the same details.

Wheelchair users still experienced problems with transportation particularly if they needed assistance entering or leaving vehicles.

Individual buildings still presented accessibility difficulties it was felt more attention had to be paid to the built environment. Particular mention was made of signage and navigation around buildings and poor attention to the needs of visual impaired users in such things as appropriate colour schemes
There was also a lot of detailed feedback on the 10 rights described in the Equality Framework. For more information about this feedback, please see the detailed report from the day.
Evaluation summary from the event:

33 evaluation forms were completed (as of 11 August 2009), out of 38 participants, including 6 supporters.

A significant majority of people thought the aims were clear, understood what they were being told and asked, thought the written information was understandable and were able to say what they wanted to say.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1

A majority said they had enough time in the group work, but a few thought there was not enough time.

Most comments were positive about the day, but there were a number of comments about the choice of venue, which was not felt to be disability friendly.
See separate evaluation report for more detail.
Diversity monitoring:
Impairments represented
A wide range of disabilities were represented, including sensory impairments, mobility difficulties, mental health problems and learning disabilities. Two participants said that they had long-term conditions.
Ages represented
Ethnic background
Gender
Geographical areas represented
Religious belief and faith
The age range of participants was widely spread from 20s to 80+, but the majority were aged between 50 and 69.
The majority of participants were white Scottish or British, although some other ethnicities were represented including two people with South
Asian ethnicities and one from an Arab background.
The gender split was approximately even.
Representatives from all Local Authority areas of
Lothian took part in the event.
Sexual orientation
Christians of different denominations made up the majority of participants although a significant number reported no religion. There were also participants with Muslim and Sikh faiths present.
The sexual orientation of participants was monitored but this data is not presented here for confidentiality reasons.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
3. Learning Disability workshop:
A dedicated learning disability workshop was run on 22 July 2009, with participants from a mixture of NHS Lothian user groups and groups run by People First Scotland. A total of 16 disabled people attended, with a range of learning disabilities as well as with a range of other impairments.
The group provided both positive and negative feedback about lots of health services, not just those provided directly by NHS Lothian:

People feel much more comfortable with doctors and NHS staff who know them, as they do not feel that they need to explain themselves again and again.

People felt that NHS staff did not take enough time to explain what things meant in easy to understand ways. This often led to confusion and anxiety.

There is not enough use of Easy Read or symbols to communicate with patients.

Many people felt that their dentist did not listen to them.
This feedback has been incorporated into the outcomes and actions identified in this Scheme. The notes from the day and an evaluation report are available from the equality contacts listed in the Contacts section of this Scheme.
Evaluation of the workshop:

Although most respondents felt that the papers were sent out with enough time for people to read them, respondents felt differently about how easy to understand they were.

The venue was felt to be unsuitable by nearly all respondents, although the toilets were rated as suitable by most.

Most respondents felt that the pace of the workshop was OK.
Most also felt happy about the amount of speaking they were able to do. The food and drinks were rated highly by most respondents.

Comments included requests for a bigger room at future events and more use of communication aids such as symbols.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
Diversity monitoring:
Impairments represented
A wide range of disabilities were represented in addition to learning disabilities and cognitive impairments. These included mobility and sensory impairments, communication support needs and mental health.
No monitoring of age was carried out. Ages represented
Ethnic background
Gender
No participants identified themselves as being from an ethnic minority.
The gender split was approximately even.
Representatives from all Local Authority areas of
Lothian took part in the event.
Geographical areas represented
Religious belief and faith
Sexual orientation
No monitoring of religious belief or faith was carried out.
No monitoring of sexual orientation was carried out.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
4. Workshop for disabled staff
A workshop was held for disabled staff on 20 October 2009. It was advertised through the NHS Lothian Team Brief, the internal
Connections news bulletin and through the Lothian Partnership
Forum network.
A total of 12 staff attended. Individual discussions were held with two staff who were unable to attend the event. Impairments represented included physical and mobility impairments, sensory impairments, mental health problems, and chronic illnesses.
The staff who took part in these activities agreed the following priorities for action to make NHS Lothian a better employer of disabled staff:
1. The support services available to help disabled staff, their recruitment into posts and how they cope with changes to their needs during employment need to be developed. This includes the Occupational Health Service, Employee
Relations, and Human Resources more generally. This applies particularly to supporting disabled staff returning to work and redeployment.
2. The attitudes of line managers needs to be improved, through training in leadership, disability awareness and approaches to managing diverse staff.
3. EQUAL Staff monitoring and recording systems need to be improved, both in terms of confidentiality and the accuracy with which they are completed. This has a knock on effect for issues such as capability.
AND Physical working environments need to be improved so that barriers such as stairs and heavy doors are removed where possible.
4. Attitude to and awareness of disability among colleagues needs to improve, together with a culture change that respects diversity among staff.
Evaluation of the staff workshop:

The arrangements before the workshop, including the accessibility of the papers and the time people had to read them, were rated fairly highly by those who responded.

The venue, the seminar room at Ward 104 in the Edinburgh
Royal Infirmary, was rated as easy to get to by most respondents, although there was some negative feedback
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1 about parking arrangements. The room itself was rated reasonably highly but there were comments about the lack of comfortable seats, poor ventilation and absence of windows.

The programme for the workshop was rated very highly by all respondents, and most gave high ratings for their ability to contribute to the discussions. The pace of the workshop was felt by most to be about right and most respondents rated the food and refreshments highly.

All respondents felt that the workshop was useful, with most scoring the event very highly (average rating 8.7 out of 9), and there was enthusiasm for further involvement with NHS
Lothian.
Diversity monitoring:
Impairments represented
Ages represented
Ethnic background
A wide range of disabilities were represented.
These included mobility and sensory impairments, long term health conditions and mental health.
Participants were in age categories ranging from
30 to 69, but just under half were aged between
40 and 49.
White Scottish, English or Northern Irish participants made up the majority of the group, but there were 3 staff from mixed backgrounds or other ethnic groups present.
Gender 10 of the 12 staff who took part on the workshop were female.
Representatives from all main sites of NHS
Lothian took part in the event.
Geographical areas represented
Religious belief and faith
Sexual orientation
All participants who indicated a religious belief were Christian.
The sexual orientation of participants was monitored but this data is not presented here for confidentiality reasons.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
5. Other involvement activities:
Some other involvement activities took place that were not directly organised by NHS Lothian:

Edinburgh Equalities Network event: a workshop was held on 16 June 2009 at which a number of disabled people were present, as well as representatives of other equality groups.
Positive feedback and issues for improvement were suggested from participants from the Edinburgh area. This event was useful as it identified issues that cut across disability and other equality strands.

Midlothian involvement workshop: workshops were held as part of an event in Gorebridge in Midlothian on 15 June
2009. Feedback on a wide range of issues including employment and barriers to health was obtained.
While detailed feedback is available for these events no diversity monitoring or evaluation was carried out by NHS Lothian staff.
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NHS Lothian Disability Equality Scheme 2009-12 Appendix 1
6. Consultation on the draft Disability Equality Scheme
The draft Disability Equality Scheme was approved for consultation by the NHS Lothian Equality & Diversity Steering Group following its September 2009 meeting. The consultation period ran from 14
October 2009 until 9 November 2009.
A total of 26 responses were received. Eight of these were received on the consultation form provided with the draft Disability
Equality Scheme. Responses were approximately split between
NHS staff and voluntary sector, with one from an NHS service user forum. Most were employees.
Many comments related to accessibility issues, formatting and presentation of the text. Some comments related to the lack of identified baselines. Some respondents also felt that the priorities were too simplistic. Two respondents made comments about terminology and use of the terms “disabled people”, “disability”, and “impairment”. One respondent was concerned about the provision of disability equality training by people who were not disabled and not sufficiently qualified.
These comments were incorporated as far as possible into the final version of the Disability Equality Scheme.
The final version was approved by the NHS Lothian Board on 25
November 2009, and published on 4 December 2009.
James Glover
Head of Equality & Diversity
NHS Lothian
December 2009
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