HEALTH AND SOCIAL CARE

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The Scottish Allied Health Professions LifecurveTM Survey: Report on Respondents with Communication Support Needs

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The Scottish Allied Health Professions Lifecurve™ Survey: Report on Respondents with Communication Support Needs Analysis and reporting by Aisling Egan (Intern, Scottish Graduate School of Social Science) Report edited by Debbie Sagar (Scottish Government) Survey led by: Susan Kelso, AHP Lead Early Intervention, Scottish Government Philip Rowe, Professor of Rehabilitation Science, University of Strathclyde Dr Sarah Mitchell, former Director Active and Independent Living Programme, Scottish Government Peter Gore, Professor of Practice, University of Newcastle Institute of Ageing

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Contents

1. Introduction .......................................................................................................... 5

2. Survey Background ............................................................................................. 6

3. Survey Content .................................................................................................... 7

4. Data and Analysis Limitations ............................................................................. 8

5. Report Layout and Approach............................................................................. 10

6. Main Findings .................................................................................................... 11

7. Demographics ................................................................................................... 13

7.1 Age .............................................................................................................. 13

7.2 NHS Board and Health and Social Care Partnership .................................. 14

7.3 Urban-Rural Classification ........................................................................... 17

7.4 Scottish Index of Multiple Deprivation (SIMD) ............................................. 18

8. Responses to Survey Questions ....................................................................... 19

8.1 LifeCurve™ Stage ....................................................................................... 19

8.2 Appointment Location .................................................................................. 24

8.3 Travel to Appointment ................................................................................. 26

8.4 Living Arrangements.................................................................................... 27

8.5 Work Status ................................................................................................. 29

8.6 Home Suitability ........................................................................................... 31

8.7 Carer Status ................................................................................................ 32

8.8 Wellbeing ..................................................................................................... 34

8.9 Referral Source ........................................................................................... 35

9. Allied Health Professional Background ............................................................. 36

9.1 Allied Health Profession Seen at this Appointment ..................................... 36

9.2 Allied Health Profession Seen by Age of Respondent ................................ 38

9.3 Allied Health Profession Seen by Location ................................................. 40

9.4 Allied Health Profession Seen by Age and Location ................................... 41

10. Conclusions .................................................................................................... 42

11. References ..................................................................................................... 43

12. Appendices ..................................................................................................... 45

Appendix 1: Who the Allied Health Professionals are: ......................................... 45

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Appendix 2: AHP LifeCurveTM Survey................................................................... 47

Appendix 3: Survey Respondents with Communication support needs by NHS Board and Partnership .......................................................................................... 55

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1. Introduction This report presents a provisional analysis of findings from a major survey of clients

of Allied Health Professionals (AHPs), focused on survey respondents who

reported having communication support needs. The report thereby contributes data

and evidence which is relevant to the legal duty of Scottish Ministers to “provide or

secure the provision of (a) communication equipment, and (b) support in using that

equipment, to any person who has lost their voice or has difficulty speaking” (Health

(Tobacco, Nicotine etc. and Care) (Scotland) Act, 2016); and to the Scottish

Government’s ‘See Hear’ Strategy (Scottish Government, 2014).

Communication Equipment and Support is often referred to as Augmentative and

Alternative Communication (AAC) (Scottish Government, 2018a), on which the

Scottish Government’s (SG) Assisted Communication policy team leads, alongside

the lead for the ‘See Hear’ Strategy for people with sensory impairment. Since the

Scottish Parliament passed Part 4 of the Health (Tobacco, Nicotine, etc and Care)

(Scotland) Act 2016, and subsequent commencement of the legal duty in March

2018, the policy team has been working to collect data and evidence about the

population in Scotland who need communication equipment and support and to

whom the duty applies. As part of this work they secured the inclusion of a question

about communication support needs in the AHP survey, which is described below;

and commissioned this report, having secured funding for a three month internship.

The survey findings provide valuable evidence, both about the clients of AHPs who

reported having communication support needs, and about which AHP professional

groups those clients were seeing.

An accompanying Research Findings publication summarises the main findings of

this report.

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2. Survey Background AHPs comprise a range of professional groups, including Occupational Therapists,

Physiotherapists and Speech and Language Therapists (see Appendix 1 for more

details). They support people of all ages, providing preventative interventions in

such areas as supported self-management, diagnostic, therapeutic, rehabilitation

and enablement services (Scottish Government, 2018b).

The Active and Independent Living Programme (AILP) is a Scottish Government

programme led by the Chief Health Professions Officer, within the Chief Nursing

Officer Directorate. It is intended to drive significant culture change in how people

can access and receive AHP support for self-management, prevention, early

intervention, rehabilitation and enablement services. AILP’s vision is that “Allied

Health Professionals will work in partnership with the people of Scotland to enable

them to live healthy, active and independent lives by supporting personal outcomes

for health and wellbeing” (Scottish Government, 2017, p. 14).

In 2017, AILP requested all AHPs in Scotland to participate, on an agreed date, in

‘The AHP LifeCurve™ Survey’. The purpose of the survey was to develop a better

understanding of where in people’s lives the AHP workforce is intervening. AHPs

were asked to identify at least two clients typical of those using their service, and to

invite them to complete the survey questionnaire (AILP, 2017a: see Appendix 2).

This questionnaire sought to gather information on the range of clients being seen

by AHPs, and to map their functional abilities against the ADL LifeCurve™ tool

which was developed by ADL Research and Newcastle University's Institute for

Ageing to map age-related functional decline. The ADL LifeCurve™ is ‘a model of

“Compression of Functional Decline” (CFD) based on evidence in the literature that

there is a hierarchical order to the loss of functional ability (AILP, 2017b). Figure 1

below shows the LifeCurve™ model, including ‘pre-curve’ items (hiking, brisk

walking, getting up from the floor and walking a mile) and then the fifteen

LifeCurve™ items. People are considered to enter the LifeCurve™ when they begin

to have difficulty independently completing the first item on the LifeCurve™,

‘Cutting Toenails’.

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Figure 1: The University of Newcastle LifeCurve™ Model (ADL Smartcare, 2018)

The LifeCurve™ does not provide timeframes of decline or impairment, although

the ‘AHP LifeCurve™ Survey’ identified key points where AHPs are more likely to

intervene. These are pre-curve (point 0), at the Heavy Housework point (point 5), or

‘late-curve’ between points 10 and 13 (10. Light housework, 11. Getting on/off toilet,

12. Getting dressed, and 13. Getting up/down from bed).

The survey data is intended to provide evidence of the need for earlier, preventative

interventions by AHPs, to support people to improve and maintain skills and reduce

functional dependence.

3. Survey Content The survey questionnaire was presented in two parts. The first part asked

respondents to provide information on the activities of daily living (ADLs) and

instrumental activities of daily living (IADLs) that they could and could not complete

without help from either a person or using equipment, and the length of time since

they were last able to complete them. It also asked for background information on

the person’s domestic situation and their attendance at their AHP appointment. The

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second part asked the AHP to complete the questionnaire by providing information

on their profession, band / grade, the NHS board and the Health and Social Care

Partnership1 (HSCP; referred to as ‘partnership’ from this point) area where the

respondent was seen.

Following consideration of a submission from SG’s Assisted Communication policy

team, one overarching question about communication support needs was included

in part one of the questionnaire:

‘Do you have any communication support needs? E.g. hearing or low vision

aid, interpreter, large print, easy read, communication aid’.

The total responses to the questionnaire (n=13345) were filtered by those who had

answered ‘yes’ (n=2883) and ‘no’ (n=10462) to this question. Respondents who

answered ‘yes’ are the primary focus of this report. As this was a yes/no question

the responses cannot be further broken down by type of communication support

needs. Rather, they provide a high level overview of people with a wide range of

communication and sensory needs across Scotland, though potentially excluding

people with very severe communication support needs who might have been

unable to respond to the survey.

4. Data and Analysis Limitations This analysis was undertaken during the period January – April 2019, when an

intern from the Scottish Graduate School of Social Science was available to

undertake a three-month internship for SG’s Assisted Communication policy team.

In order to take advantage of her availability, and to accelerate the provision of the

survey findings to the policy team, this analysis was completed before the definitive

cleaning and analysis of the whole dataset. The findings are therefore provisional

and may be superseded by later published reports from the main survey data

1 HSCPs are bodies that were formed during the integration of health and social care in Scotland. They are jointly run by Local Authorities and NHS boards. They aim to provide closer links between services for seamless, integrated care.

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controllers. This analysis does provide an early insight into the profile of people with

communication support needs who are seeing AHPs across Scotland.

A number of other specific data and analysis limitations are shown below.

a) The survey did not set out to reach a random sample of the population, but

was completed by people who happened to see an AHP on the day of the

survey, and whom the AHP considered to be typical clients. For this reason,

and because of the provisional nature of the data analysed as discussed

above, it has not been weighted or otherwise adjusted, and the results have

not been tested statistically.

b) The questionnaires were completed in written format and there was some

variation in the information provided and the completeness of responses

received.

c) Each survey response relates to one AHP appointment only, and does not

capture information about the respondent’s other appointments with AHPs or

other health and social care needs.

d) Data for respondents who answered ‘yes’ to the communication question has

been ‘cleaned’: for example, obvious errors such as postcodes without spaces

have been amended (e.g. EH13DG changed to EH1 3DG). However data for

the other survey respondents has not been cleaned, so comparisons with that

group are provisional but are provided for information.

e) Some data which was submitted late has not yet been incorporated into the

dataset. While it is considered unlikely that the profile of the missing data will

vary significantly from the data which has been analysed, this cannot be ruled

out.

f) Information about respondent gender was not requested, so male vs female

breakdowns are not possible.

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5. Report Layout and Approach The report will first present demographic information for respondents, followed by

respondents’ answers to the survey questions. Selected pairs of data variables will

also be compared.

The report will present the overall responses of the people who answered ‘yes’ to

the communication support needs question, and where relevant these responses

will be compared with people who answered ‘no’ to the communication support

needs question.

For all analyses shown in this report, the number of people who responded to the

question or for whom data is available is shown, to provide context for the

percentages in the analysis. Findings are reported as percentages of those

numbers, not as percentages of the overall sample who responded to the survey.

People who responded ‘yes’ or ‘no’ to the communication support needs question

are treated as two separate sub-samples, and percentages shown relate to each

sub-sample, not to the overall sample, to allow the profiles of each to be compared.

Where two numbers are reported, the first will be for respondents who answered

‘yes’ to the communication support needs question unless otherwise stated.

For all the charts shown, the ‘y’ axis has been scaled as appropriate so that the

chart is legible, rather than being routinely scaled to 100%. All numbers and

percentages shown comply with guidance around the non-disclosure of small

numbers.

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6. Main Findings • Communication support needs: approximately one fifth of survey

respondents reported having communication support needs. These needs

could reflect loss of voice or difficulty speaking, but also wider sensory needs

such as vision or hearing loss.

• Age Profile: o survey respondents were on average older when compared with the

population of Scotland;

o survey respondents with communication support needs were older on

average than respondents without communication support needs: a higher

proportion were aged over 65.

• LifeCurve™ profile: a higher proportion of respondents with communication

support needs were in the ‘late-curve’, reflecting a greater loss of functional

ability, while respondents without communication support needs were more

likely to be ‘pre-curve’.

• Appointment location: respondents with communication support needs were

more likely to be seen as in-patients or at home, while respondents without

communication support needs were more likely to be seen as out-patients.

• Travel to appointment: respondents with communication support needs were

more likely to select N/A (not applicable) from the travel options presented,

probably reflecting their appointment location profile discussed above.

• Living arrangements: slightly more respondents with communication support

needs lived alone, whereas respondents without communication support

needs were slightly more likely to live with others. A relatively small proportion

of both groups lived in sheltered accommodation or care homes.

• Home suitability: respondents with communication support needs were less

likely to be able to manage their daily activities and more likely to report

difficulties, compared with respondents without communication support needs.

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• Emotional wellbeing: the profiles of respondents with and without

communication support needs were similar, with a clear majority in both

groups reporting their wellbeing positively or neutrally.

• Referral source: the majority of respondents with and without communication

support needs were referred to an AHP by another healthcare staff member.

• AHP professions seen: people with communication support needs were

accessing a wide range of AHP services. Around half of those respondents

were seeing an occupational therapist or a physiotherapist. Only 8% of this

group were seeing a speech and language therapist or support worker.

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7. DemographicsRespondents’ basic demographic information is outlined below.

7.1 Age Age data was available for 41% (n=1196) of respondents with communication

support needs, and for 43% (n=4533) of respondents without communication

support needs.

The age profile of all survey respondents was compared with the equivalent

population of Scotland (age 18+) using the most recent mid-year population

estimates (National Records of Scotland, 2018a), as shown in Figure 2 below.

Survey respondents had a relatively older age profile compared with the population

of Scotland, which is likely to reflect attendance at AHP clinics.

Figure 2: Survey respondents with and without communication support needs: by age and compared with the Scotland population

Survey respondents with communication support needs had an older profile than

those without, as shown in Figure 3 below, which contrasts respondents aged

under and over 65. 75% of respondents with communication support needs were

aged 65+, compared with 57% of respondents without. This could reflect the

0

5

10

15

20

25

30

35

18-24 25-34 35-44 45-54 54-64 65-74 75-84 85+

Under 65 Over 65

% o

f tot

al

Survey Respondents with and without Communication Needs: Age Breakdown compared with Scotland population aged 18+

Scotland Population (age 18+) Respondents with Communication Needs

Respondents without Communication Needs

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greater likelihood that people aged 65+ will have age-related changes to one or

more of vision, hearing or speech, all of which can impact on communication

support needs. Respondents with communication support needs might also have

more complex medical presentations than those without, resulting in higher

proportions requiring access to AHP services. The available data does not enable

exploration of the underlying factors in more detail.

Figure 3: Survey respondents with and without communication support needs by age: under and over 65

7.2 NHS Board and Health and Social Care Partnership NHS Board information is available for 92% (n=2657) of respondents with and for

93% (n=9775) of respondents without communication support needs. Partnership

area is available for 68% (n=1958) of ‘yes’ respondents, and 65% (6794) of ‘no’

respondents.

The overall profile for both respondent groups was very similar, therefore only

respondents with communication support needs are shown in Figure 4 below. The

largest proportion came from Greater Glasgow and Clyde NHS Board (19%), with

the smallest from Orkney NHS Board (<1%). The variation across NHS Boards

probably reflects a combination of population and AHP distribution across Scotland,

0

10

20

30

40

50

60

70

80

Under 65 Over 65

% o

f res

pond

ents

wit

h /

wit

hout

com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs by Age: under and over 65

Respondents with Communication Needs Respondents without Communication Needs

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as well as local AHP interest in the survey. As discussed earlier, full data for all

boards was not available for this analysis. The full breakdown of available data from

Boards and Partnerships is shown in Appendix 3.

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Figure 4: Survey respondents with communication support needs: percentage breakdown by NHS Boards

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7.3 Urban-Rural Classification Urban-rural data was available for 33% (n=960) of respondents with and 34%

(n=3529) of respondents without communication support needs.

Respondents were categorised using the Scottish Government’s 6-fold Urban Rural

Classification, which classifies local areas according to their population density and

accessibility.

Of the respondents with communication support needs, 71% live in ‘large urban

areas’ or ‘other urban areas’, and 16% live in ‘accessible rural’ or ‘remote rural’

areas. Their profile is very similar to people without communication support needs,

and to the equivalent population of Scotland (age 18+) using the most recent

population estimates (National Records of Scotland, 2018b), as shown in Figure 5

below.

Figure 5: Survey respondents with and without communication support needs: by urban-rural classification and compared with the Scotland population.

0

510152025303540

1 Large UrbanAreas

2 Other UrbanAreas

3 AccessibleSmall Towns

4 Remote SmallTowns

5 AccessibleRural

6 Remote Rural

% o

f tot

al

Survey Respondents with and without Communication Needs: Urban/Rural Breakdown compared with Scotland population

aged 18+

Scotland Population (age 18+) Respondents with Communication Needs

Respondents without Communication Needs

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7.4 Scottish Index of Multiple Deprivation (SIMD) The Scottish Index of Multiple Deprivation (SIMD) is an area-based, relative

measure of deprivation across Scotland, which combines seven measures of

deprivation into a single index (Scottish Government, 2016). Scotland is split into

6,976 small areas called ‘data zones’, with roughly equal populations, which are

ranked on this combined index, with 1 being ‘most deprived’ and 6976 being ‘least

deprived’. These areas can also be divided into deciles, with decile 1 comprising

the 10% most deprived and decile 10 comprising the 10% least deprived small

areas in Scotland.

As with urban-rural data, SIMD data was available for 33% (n=960) of respondents

with communication support needs and 34% (n=3529) of those without.

Respondents with and without communication support needs had relatively similar

SIMD profiles, and were distributed relatively evenly across the SIMD deciles, as

shown in Figure 6 below. For this purpose it is assumed that approximately 10% of

the Scottish population lives in each decile, so that comparison is not shown in this

chart.

Figure 6: Survey respondents with and without communication support needs: by SIMD decile

0

2

4

6

8

10

12

14

110% MostDeprived

2 3 4 5 6 7 8 9 1010% LeastDeprived

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icatio

n ne

eds

Survey Respondents with and without Communication Needs: by SIMD decile

Respondents with Communication Needs Respondents without Communication Needs

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8. Responses to Survey QuestionsRespondents’ responses to the survey questions are described in the following

section. The questions, as asked in the questionnaire, are shown at the top for

reference, and the questions are reported in the order in which they were asked in

the survey.

8.1 LifeCurve™ Stage

1. Please look at the list of activities below and tick every one you CAN manage

unaided i.e. without help.

2. Next tick every activity which you CANNOT manage unaided i.e. without help.

N.B. without help means from a person or using equipment.

3. Next tell us how many months and/or years you have needed help with the

activity or activities.

(NB: the activities were not presented in the order of the LifeCurve™ Stages).

LifeCurve™ stage information was available for 100% of respondents with (n=2883)

and without (n=10462) communication support needs.

Overall, respondents with communication support needs were further along the

LifeCurveTM compared with those without, reflecting a greater loss of functional

ability. This is shown in Figure 7. This could reflect their older age profile.

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Figure 7: Survey respondents with and without communication support needs: by LifeCurve™ stage

Data for the key LifeCurveTM stages (pre-curve, heavy housework and late-curve)

illustrate more clearly the difference in profile of people with and without

communication support needs, and are shown in Figure 8 below.

A significantly lower proportion of respondents with communication support needs

(11%) reported themselves to be ‘pre-curve’ and independent in all the activities of

daily living, compared with 30% of respondents without communication support

needs.

The ‘Heavy Housework’ stage showed relatively higher AHP involvement for both

groups, but with little difference between them.

A significantly higher proportion of people with communication support needs (47%)

were at the ‘late-curve’ stages (10-13), compared with 35% of respondents without

communication support needs.

0

5

10

15

20

25

30

35

0 Pre-cu

rve

1 Cutting Toenail

s

2 Shopping

3 Usin

g Steps/Stairs

4 Walk 400 Ya

rds

5 Heav

y House

work

6 Full Wash

7 Cook a Hot Meal

8 Moving Aro

und

9 Get O

n/Off C

hair

10 Light House

work

11 Get O

n/Off

Toilet

12 Get D

resse

d

13 Get U

p/Off

Bed

14 Wash

Hands &

Face

15 Eat Independently

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icat

ion

need

sSurvey Respondents with and without

Communication Needs: by LifeCurve™ Stage

Respondents with Communication Needs Respondents without Communication Needs

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Figure 8: Survey respondents with and without communication support needs: by key LifeCurve™ stages

0

5

10

15

20

25

30

35

40

45

50

pre-curve heavy housework late-curve

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icatio

n ne

eds

Survey Respondents with and without Communication Needs: by key LifeCurve™ stage

Respondents with Communication Needs Respondents without Communication Needs

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The same data is shown for respondents aged under-65 in Figure 9 below. Only

25% of respondents with communication support needs fall into this age group,

compared with 43% of those without communication support needs. As with the ‘all

ages’ group analysis above, a significantly lower proportion of all respondents with

communication support needs (5%) reported themselves to be ‘pre-curve’ and

independent in all the activities of daily living, compared with 18% of respondents

without communication support needs. However the proportions at the ‘late curve’

stages were fairly similar.

Figure 9: Survey respondents with and without communication support needs: by key LifeCurve™ stages – age under-65

0

2

4

6

8

10

12

14

16

18

20

Pre-curve Heavy Housework Late Curve

% o

f res

pond

ents

wit

h /

wit

hout

co

mm

unic

atio

n ne

eds

Survey Respondents with and without Communication Needs: by key LifeCurve™ stages: Age under-65

Respondents with Communication Needs Respondents without Communication Needs

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The same data is shown for respondents aged 65+ in Figure 10 below. 75% of

respondents with communication support needs fall into this age group, compared

with 57% of those without communication support needs. As with the ‘all ages’

analysis, a significantly higher proportion of people with communication support

needs (37%) were at the ‘late-curve’ stages, compared with 24% of respondents

without communication support needs.

Figure 10: Survey respondents with and without communication support needs: by key LifeCurve™ stages – age 65+

0

5

10

15

20

25

30

35

40

Pre-curve Heavy Housework Late Curve

% o

f res

pond

ents

wit

h /

wit

hout

com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs: by key LifeCurve™ stages: Age 65+

Respondents with Communication Needs Respondents without Communication Needs

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8.2 Appointment Location

Q1. Where are you seeing the AHP member of staff today? Please tick only one

option:

- Inpatient - Outpatient - Community - Your Home

Information was available for 99% of respondents with (n=2867) and without

(n=10365) communication support needs. Responses across the four categories

are shown below in Figure 11.

Figure 11: Survey respondents with and without communication support needs: by appointment location

A breakdown of appointment locations by age is shown in Figure 12 below. The

chart reflects the older age profile of respondents with communication support

needs. This group was more likely to be seen as in-patients or in their own home,

particularly in the 65+ age group. Around half of this group were aged 65+ and

seen in those two locations. Respondents without communication support needs

were most likely to be seen as out-patients, with around 25% of these respondents

aged under-65 and seen in this location. As discussed earlier, this location pattern

could reflect poorer health and increased frailty and dependence experienced by

older respondents with communication support needs.

0

5

10

15

20

25

30

35

40

Inpatient Outpatient Community Own Home

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icatio

n ne

eds

Survey Respondents with and without Communication Needs: by Appointment Location

Respondents with Communication Needs Respondents without Communication Needs

25

Figure 12: Survey respondents with and without communication support needs: by appointment location and age (under / over 65)

0

5

10

15

20

25

30

Inpatient Outpatient Community Own Home Inpatient Outpatient Community Own Home

Under 65 Over 65% o

f res

pond

ents

wit

h /

wit

hout

com

mun

icat

ion

need

sSurvey Respondents with and without Communication Needs:

by Appointment Location and Age

Respondents with Communication Needs Respondents without Communication Needs

26

8.3 Travel to Appointment

Q2. If you travelled to get here today, how did you get here? Please tick only one

option:

- By Bus - By Car - By Ambulance - N/A - Walking - Combination of travelmethods

93% (n=2678) of respondents with and 94% (n=9834) of respondents without

communication support needs reported the form of transport they took to the

appointment, and this is shown below in Figure 13.

Nearly 60% of respondents with communication support needs reported mode of

travel as N/A (non-applicable), possibly reflecting the relatively high proportions

seen as in-patients or at home. Around 40% of respondents without communication

support needs also reported N/A, with car being the next most common option. It is

difficult to draw conclusions from this data on respondents’ level of activity and

ability to access public transport. It is possible that the accessibility of the hospitals

and clinics where they were being seen was more of an influence on transport

options selection.

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Figure 13: Survey respondents with and without communication support needs: by method of travel to appointment

8.4 Living Arrangements

Q3. Who do you normally live with? Please tick only one option:

With other people e.g. Partner, family, friends - I live alone - In sheltered

accommodation or a residential home (e.g. care home)

Information about living arrangements was available for 99% of respondents with

(n=2861) and without (n=10367) communication support needs.

About half of respondents with communication support needs lived with others such

as partners or families, with 44% reporting living alone. Just 6% reported living in

sheltered accommodation or residential homes. Respondents without

communication support needs were more likely to live with others, and slightly less

0

10

20

30

40

50

60

70

Car Ambulance Bus Walk Combination N/A

% o

f res

pond

ents

wit

h /

wit

hout

com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs: by Travel Method to Appointment

Respondents with Communication Needs Respondents without Communication Needs

28

likely to live alone or in sheltered accommodation/care homes. This is shown in

Figure 14 below.

Figure 14: Survey respondents with and without communication support needs: who they normally lived with

Of the 75% of respondents with communication support needs who are aged 65+,

the profile of their living arrangements is broadly similar to Figure 13 above. Nearly

all were living alone or with others, split fairly evenly, with only 5% living in

sheltered accommodation or care homes.

0

10

20

30

40

50

60

Live Alone Live with others Sheltered Accom/Care Home

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icatio

n ne

eds

Survey Respondents with and without Communication Needs: who they normally live with

Respondents with Communication Needs Respondents without Communication Needs

29

8.5 Work Status

Q5. Are you in work or do you take part in other regular activity? Please tick which

apply:

- Yes I work - I am a volunteer - N/A - I help to look after other family members e.g.

grandchildren/nieces/nephews

98% of respondents with (n=2813) and without (n=10214) communication support

needs answered this question. Only one response was recorded per respondent,

so it is not known if respondents had more than one of these roles.

Most respondents selected the N/A (not applicable) option (86% of respondents

with and 66% of respondents without communication support needs), suggesting

that the options offered did not match their circumstances. It is possible that some

of those selecting this option were retired, particularly among respondents with

communication support needs, 75% of whom were aged 65+. This is shown in

Figure 15 below.

Figure 15: Survey respondents with and without communication support needs: work or other regular activity undertaken

0

10

20

30

40

50

60

70

80

90

Work Look after Family Volunteer N/A

% o

f res

pond

ents

wit

h /

wit

hout

com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs: by Work Status or other Regular Activity

Respondents with Communication Needs Respondents without Communication Needs

30

When responses to this question are broken down by age, it is notable that, in the

under-65 age group, only 16% of respondents with communication support needs

are in work, compared with over 40% of respondents without communication

support needs. This is shown in Figure 16 below.

Figure 16: Survey respondents with and without communication support needs aged under-65: work or other regular activity undertaken

0

10

20

30

40

50

60

70

80

90

Work Look after Family Volunteer N/A

% o

f res

pond

ents

wit

h /

wit

hout

com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs: by Work Status or other Regular Activity

Respondents with Communication Needs Respondents without Communication Needs

31

8.6 Home Suitability

Q6. Is your home suitable for your needs? Please tick only one option:

- Yes I can manage all daily activities within my home

- I am beginning to struggle with managing daily activities within my home

- I cannot manage some daily activities within my home without help

Data is available for 98% of respondents with (n=2824) and without (n=10226)

communication support needs.

Around two fifths of respondents with communication support needs reported they

could manage all their daily activities, with three fifths reporting that they were

beginning to struggle with or could not manage some daily activities. The opposite

pattern was evident among respondents without communication support needs,

with around three fifths able to manage and two fifths starting to struggle or unable

to manage (shown below in Figure 17).

Figure 17: Survey respondents with and without communication support needs: suitability of home for completing daily activities.

0

10

20

30

40

50

60

70

Can manage al l daily activities Beginning to Struggle with DailyActivities

Cannot Manage Some Daily Activitieswithout Help

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs: Suitability of Home for their Daily Activities

Respondents with Communication Needs Respondents without Communication Needs

32

When responses to this question are broken down by age, the same pattern is

evident in both the under-65 and the 65+ age groups. Respondents with

communication support needs in both age groups are less likely to report that they

can manage all daily activities and more likely to report that they cannot manage

without help. This is shown for the 65+ age group in Figure 18 below.

Figure 18: Survey respondents with and without communication support needs – age 65+: suitability of home for completing daily activities

8.7 Carer Status

Q7. Are you a carer? Please tick only one option:

- Yes - No - Both (I care for someone and I have a carer)

Data is available for 93% of respondents with (n=2681) and 92% of respondents

without communication support needs (n=9618).

The majority of respondents, both with and without communication support needs,

indicated that they were not carers (over 90%), with relatively few (around 5%)

indicating they were a carer, and the remainder reporting they were both a carer

and cared for (2%). Respondents were not asked if they had a carer, so this

information is not available. The breakdown is shown in Figure 19 below. No

pattern was observed across age, LifeCurve™ stage, or NHS board.

0

10

20

30

40

50

60

Can manage al l daily activities Beginning to Struggle with DailyActivities

Cannot Manage Some Daily Activitieswithout Help

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icat

ion

need

s age

65+

Survey Respondents with and without Communication Needs - Age 65+: Home Suitability

Respondents with Communication Needs Respondents without Communication Needs

33

Figure 19: Survey respondents with and without communication support needs: carer status

0

10

20

30

40

50

60

70

80

90

100

A Carer Not a Carer Both a Carer and cared for

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icatio

n ne

eds

Survey Respondents with and without Communication Needs: Carer Status

Respondents with Communication Needs Respondents without Communication Needs

34

8.8 Wellbeing

Q8. How would you describe your emotional wellbeing today?

NB: 1 is very good and 5 is very bad

98% (n=2839) of respondents with and 92% (n=9618) of respondents without

communication support needs rated their emotional wellbeing on the day of the

survey.

The profile of respondents with and without communication support needs was very

similar, as shown in Figure 20 below. For both groups, around 60% of respondents

rated their emotional wellbeing positively (1 or 2), around 25% rated it neutrally and

around 12-13% rated it negatively (4 or 5). This wellbeing profile was similar across

age, NHS board, suitability of their home and LifeCurve™ stage.

Figure 20: Survey respondents with and without communication support needs: self-reported emotional wellbeing

0

5

10

15

20

25

30

35

1Very Good

2 3 4 5Very bad%

of r

espo

nden

ts w

ith /

with

out c

omm

unic

atio

n ne

eds

wellbeing scale

Survey Respondents with and without Communication Needs: Self-reported Emotional Wellbeing

Respondents with Communication Needs Respondents without Communication Needs

35

8.9 Referral Source

Q9. Who arranged for you to see the member of AHP staff today? Please tick only

one option:

- A member of health staff - A member of social work staff - Myself, family member

or friend - Other - I don’t know/not sure - I don’t know as I was admitted in an

emergency to hospital

Information about referral source was available for 99% (n=2954) of respondents

with and 92% (n=9618) of respondents without communication support needs. The

pattern for both groups was similar, with around 70% of referrals made by a health

staff member, and the remaining 30% spread fairly evenly across the other options.

36

9. Allied Health Professional Background9.1 Allied Health Profession Seen at this Appointment Data was available for 96% of respondents with (n=2759) and without (n=10002)

communication support needs.

As noted earlier, each survey response relates to one AHP appointment only, and

does not capture information about the respondent’s other interactions with the

same or other AHPs, or with other health and social care services.

AHP information is broken down by overall professional group, and the staff

members’ role within that group: for example ‘Occupational Therapy’ includes

occupational therapists, AHP support workers, and student occupational therapists.

About three quarters of respondents were seen by AHPs, around 20% were seen

by AHP support workers, and fewer than 3% were students.

The AHP groups which saw the highest proportions of survey respondents are

shown below in Figure 21. Around half of respondents, both those with and without

communication support needs, saw either an occupational therapist or

physiotherapist. Around 7% of respondents with communication support needs saw

a speech and language therapist, compared with 3% of respondents without.

37

Figure 21: Survey respondents with and without communication support needs: Allied Health Professional group seen

AHP support workers saw 21% of respondents with communication support needs,

suggesting that this group would benefit from skills in supported communication to

adequately support their patients. Support workers include assistant practitioners

who have skills in a particular area through on-the-job training and experience, and

clinical support workers who provide more general support. Where information was

available, the AHP support workers were grouped according to the professional

group they supported, with physiotherapy and occupational therapy the most

common. Otherwise they were categorised as ‘General/Not Stated’, which was the

most common grouping. A breakdown of support workers by professional group is

shown in Figure 22 below.

0

5

10

15

20

25

30

35

OccupationalTherapist

Physiotherapist AHP SupportWorker

Podiatrist Speech andLanguageTherapist

Dietitian Student DiagnosticRadiographer

% o

f res

pond

ents

with

/ w

ithou

t com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs: Allied Health Professional groups most commonly seen

Respondents with Communication Needs Respondents without Communication Needs

38

Figure 22: Survey respondents with and without communication support needs: Allied Health Professional Support Workers seen broken down by professional group

9.2 Allied Health Profession Seen by Age of Respondent Information on AHP seen and age of respondent was available for 41% of

respondents with (n=1184) and 43% (n=4457) of respondents without

communication support needs.

As stated earlier, 75% of survey respondents with communication support needs

were aged 65+, and the profile of AHPs seen by that age group is shown below in

Figure 23. The AHP groups most frequently seen were, once again, occupational

therapists and physiotherapists, at around 18% each, followed by AHP support

workers. Six per cent of the 65+ age group were seen by speech and language

therapists.

0

2

4

6

8

10

12

14

General/Not Stated

Physiotherapy Occupational Therapy Speech and LanguageTherapy

Podiatry Dietetics

% o

f res

pond

ents

wit

h /

wit

hout

com

mun

icat

ion

need

s

Survey Respondents with and without Communication Needs: AHP Support Workers seen broken down by most common Professional Groups

Respondents with Communication Needs Respondents without Communication Needs

39

Figure 23: Survey respondents with communication support needs – age 65+: Allied Health Professional group seen

0

2

4

6

8

10

12

14

16

18

20

OccupationalTherapist

Physiotherapist AHP SupportWorker

Podiatrist Speech andLanguageTherapist

Dietitian

% o

f res

pond

ents

wit

h co

mm

unic

atio

n ne

eds

age

65+

Survey Respondents with Communication Needs - age 65+: AHP professional groups most commonly seen

40

9.3 Allied Health Profession Seen by Location Data was available for 95% (n=2743) of respondents with and 99% (n=10365) of

respondents without communication support needs.

The breakdown of respondents with communication support needs for the four AHP

groups most frequently seen (including their support workers and students) and

location is shown below in Figure 24. These groups saw around three quarters of

this group of respondents, across all appointment locations, but were all more likely

to see respondents as in-patients or at home.

Figure 24: Survey respondents with communication support needs: by selected AHP group and appointment location

0

2

4

6

8

10

12

Occupational Therapy Physiotherapy Podiatry Speech & Language Therapy

% o

f res

pond

ents

with

com

mun

icat

ion

need

s

Survey Respondents with Communication Needs: selected AHP groups seen by Appointment Location

In-patient Out-patient Community Own Home

41

9.4 Allied Health Profession Seen by Age and Location Data by AHP seen, appointment location and age was available for 41% (n=1178)

of respondents with and 42% (n=4436) of respondents without communication

support needs.

Respondents aged 65+ comprised 75% of those with communication support needs

and their pattern of appointment locations was similar to the ‘all ages’ group. The

pattern for respondents aged under-65 (comprising 25% of those with

communication support needs) was more mixed, but this analysis was derived from

relatively small numbers of respondents.

42

10. ConclusionsThis report has been prepared to inform the Scottish Government Assisted

Communications Policy Team, who are working to better understand the profile of

people in Scotland with communication support needs. It provides a preliminary

overview of responses to the AHP LifeCurveTM Survey completed across Scotland

in May 2017. In this report the focus has been on respondents who answered ‘yes’

or ‘no’ to the survey question: ‘Do you have any communication support needs (e.g.

hearing or low vision aid, interpreter, large print, easy read, communication aid)?’,

and the analysis has considered these groups as two separate sub-samples.

This report demonstrates that people with communication support needs across

Scotland are accessing a range of AHP services and across a variety of settings.

The profile of respondents with communication support needs in this sample is

largely similar to the profile of those without, but there are some areas of

divergence. The respondents with communication support needs had a relatively

older profile than the respondents without, which probably reflects the age-related

nature of some communication support needs, for example age-related changes to

vision and hearing. Respondents over the age of 65 were also more likely to be

seeing speech and language therapists, which indicated they are receiving support

for their communication support needs.

However, the profile of AHPs and AHP support workers seen identifies potential

opportunities for upskilling these professionals in age-related and atypical

communication changes for onward referral to speech and language therapists,

where appropriate. It may also be indicative of a need to provide training and

education around communication support needs and supportive communication

strategies to all AHPs and support workers who are coming into contact with people

with communication support needs, including, but not exclusive to, users of

augmentative and alternative communication.

43

11. ReferencesActive and Independent Living Programme in Scotland. (2017a). LifeCurve Survey

2017. Available at: http://www.knowledge.scot.nhs.uk/ahpcommunity/lifecurve-

survey-2017.aspx

Active and Independent Living Programme in Scotland. (2017b). LifeCurve

Information Sheet 1. Available at:

http://www.knowledge.scot.nhs.uk/media/CLT/ResourceUploads/4080712/beb5f34

3-2a03-48c9-be09-3935954cee58.doc

ADL Smartcare. (2018). LifeCurve™ Branding Guidelines Last revision: 19th

December 2018 Version 1.1.3. Available at:

https://adlsmartcare.com/Content/PDF/LifeCurve_Branding_Guidelines.pdf

Health (Tobacco, Nicotine etc. and Care) (Scotland) Act 2016 (asp 14) Part 4.

Available at: http://www.legislation.gov.uk/asp/2016/14/part/4/enacted

National Records of Scotland. (2018a). Population Estimates Time Series Data:

Mid-year population estimates: Scotland by quinary age and sex: 1911 to 2017.

Available at: https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-

by-theme/population/population-estimates/mid-year-population-

estimates/population-estimates-time-series-data

National Records of Scotland. (2018b). Population Estimates by Urban Rural

Classification (2011 Data Zone based). Available at:

https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-

theme/population/population-estimates/2011-based-special-area-population-

estimates/population-estimates-by-urban-rural-classification

National Records of Scotland. (2018c). Population Estimates by Scottish Index of

Multiple Deprivation(SIMD) 2016. Available at:

https://www.nrscotland.gov.uk/statistics-and-data/statistics/statistics-by-

theme/population/population-estimates/2011-based-special-area-population-

estimates/population-estimates-by-simd-2016

44

Scottish Government (2014). See Hear: A strategic framework for meeting the

needs of people with a sensory impairment in Scotland. Available at

https://www.gov.scot/publications/see-hear/

Scottish Government (2016). Introducing The Scottish Index of Multiple Deprivation

2016. https://www2.gov.scot/Resource/0050/00504809.pdf

Scottish Government (2017) Allied Health Professions Co-creating Wellbeing with

the People of Scotland. The active and independent living programme 2016-2020.

Available at: https://www.gov.scot/publications/allied-health-professions-co-

creating-wellbeing-people-scotland-active-independent/

Scottish Government (2018a) Guidance on the Provision of Communication

Equipment and Support in using that Equipment. Available at:

https://www.gov.scot/publications/guidance-provision-communication-equipment-

support-using-equipment/

Scottish Government. (2018b). Allied Health Professionals. Available at: P https://www2.gov.scot/Topics/Health/NHS-Workforce/Allied-Health-Professionals

45

12. Appendices Appendix 1: Who the Allied Health Professionals are:

AHP Group What they do

Arts therapist

Arts therapists use art, dance, drama and music as a therapeutic intervention to help people with physical, mental, social and emotional difficulties. There are now four arts therapies with the preferred names of: art therapy/art psychotherapists; dance movement psychotherapy; dramatherapy; music therapy.

Diagnostic radiographer

Produces high quality images on film and other recording media, using all kinds of radiation.

Dietitian Dietitians translate the science of nutrition into practical information about food. They work with people to promote nutritional wellbeing, prevent food-related problems and treat disease.

Occupational therapist

Occupational Therapists help people to overcome physical, psychological or social problems arising from illness or disability, by concentrating on what they are able to achieve, rather than on their disabilities.

Orthoptist Orthoptists assess and manage a range of eye problems, mainly those affecting the way the eyes move, such as squint (strabismus) and lazy eye (amblyopia).

Orthotist Orthotists provide braces, splints, and special footwear to help patients with movement difficulties and to relieve discomfort.

Paramedic Paramedics respond to all aspects of urgent and emergency care, ranging from problems such as cardiac arrest, heart attacks, strokes, spinal injuries and major trauma, to minor illnesses and injuries.

Physiotherapist Physiotherapists treat the physical problems caused by accidents, illness and ageing, particularly those that affect the muscles, bones, heart, circulation and lungs.

Podiatrist Podiatrists, sometimes known as chiropodists, specialise in keeping feet in a healthy condition. They play a particularly important role in helping older people to stay mobile and, therefore, independent.

Prosthetist Prosthetists design and fit artificial replacements - or prostheses – for upper and lower limbs. They design and fit the best possible artificial replacements for patients who have lost or were born without a limb.

46

AHP Group What they do Speech and language therapist

Speech and Language Therapists work with people who have problems with communication, including speech defects, or with chewing or swallowing.

Therapeutic radiographer

Treats mainly cancer patients using ionising radiation and, occasionally, drugs. Provide care across the entire spectrum of cancer services.

Scottish Government. (2018b)

47

Appendix 2: AHP LifeCurveTM Survey

48

49

50

51

52

53

54

55

Appendix 3: Survey Respondents with Communication support needs by NHS Board and Partnership Board and Associated Partnerships Count Percentage

of Grand Total

Ayrshire and Arran 27 1 East Ayrshire 12 0 North Ayrshire 4 0 South Ayrshire 8 0 Unavailable 3 0

Borders 66 2 Scottish Borders 66 2

Dumfries & Galloway 62 2 Dumfries & Galloway 62 2

Fife 375 13 Fife 375 13

Forth Valley 119 4 Clackmannanshire and Stirling 36 1 Falkirk 57 2 Unavailable 26 1

Grampian 477 17 Aberdeen City 146 5 Aberdeenshire 149 5 Moray 44 2 Unavailable 138 5

Greater Glasgow and Clyde 499 17 East Dunbartonshire 20 1 East Renfrewshire 20 1 Glasgow City 151 5 Inverclyde 35 1 Renfrewshire 35 1 West Dunbartonshire 31 1 Unavailable 207 7

Highland 128 4 Argyll and Bute 19 1 Highland 55 2 Unavailable 54 2

Lanarkshire 268 9 North Lanarkshire 98 3 South Lanarkshire 104 4 Unavailable 66 2

Lothian 288 10 City of Edinburgh 97 3

56

Board and Associated Partnerships Count Percentage of Grand Total

East Lothian 36 1 Midlothian 27 1 West Lothian 24 1 Unavailable 104 4

Orkney 5 0 Orkney Islands 5 0

Shetland 12 0 Shetland Islands 12 0

Tayside 321 11 Angus 66 2 Dundee City 72 2 Perth and Kinross 82 3 Unavailable 101 4

Western Isles 10 0 Na h-Eileanan an Iar 10 0

Unavailable 226 8 Unavailable 226 8

Grand Total 2883 100

Social Research seriesISSN 2045-6964ISBN 978-1-83960-196-5

Web Publication www.gov.scot/socialresearch

PPDAS640582 (10/19)

researchsocial

© Crown copyright 2019You may re-use this information (excluding logos and images) free of charge in any format or medium, under the terms of the Open Government Licence. To view this licence, visit http://www.nationalarchives.gov.uk/doc/open-government-licence/ or e-mail: psi@nationalarchives.gsi.gov.uk.Where we have identified any third party copyright information you will need to obtain permission from the copyright holders concerned.

The views expressed in this report are those of the researcher anddo not necessarily represent those of the Scottish Government orScottish Ministers.

This document is also available from our website at www.gov.scot.ISBN: 978-1-83960-196-5

The Scottish GovernmentSt Andrew’s HouseEdinburghEH1 3DG

Produced for the Scottish Government by APS Group ScotlandPPDAS640582 (10/19)Published by the Scottish Government, October 2019