End of life care training

opportunities for the

social care workforce in

the West Midlands

Contents

Acknowledgements 3

Executive Summary and Recommendations 4

1. Introduction: The importance of end of life care 7

2. The West Midlands study 7

3. Providers experience of end of life care 8

4. The composition of the end of life care workforce 9

5. The provision of end of life care training for staff 11

6. Training content 15

7. Training accreditation 19

8. The training provider 21

9. Priorities for end of life care 24

10. The growing importance of end of life care 26

11. Conclusions 28

Appendix one: Methodology 30

Appendix two: Individual responses to Q.10 38

Appendix three: Notes 41

2

Acknowledgements

Skills for Care West Midlands and Policyworks Associates Ltd would like to thanks the following partners for their support with the end of life care training opportunities project.

West Midlands Strategic Health Authority for funding of this project and in particular, Nicole Woodyat for her direction and support in considering the social care perspective.

Skills for Care sub regional employer partnerships across their involvement in conducting the research upon which this analysis is based. In particular

the Association of Care Training (ACT) Herefordshire and Worcestershire, Staffordshire Social Care Workforce Partnership, Black Country Partnership for Care and Solihull Workforce in Care Development Agency.

The research would not have been possible without the contribution of staff of the 340 registered social care providers across the West Midlands

region who gave up their time to respond to the research and share their valuable insight.

3

Executive Summary and Recommendations

This large-scale study of 340 registered social care providers, employing more than 11,300 staff across the West Midlands region, provided some

interesting and potentially valuable insights.

The study confirmed that issue of end of life care is firmly “on the radar” for social care providers in the West Midlands; with 42 per cent of providers reporting frequent or very frequent experience of end of life care and 66 per cent of providers reporting offering end of life care training to their

staff. Furthermore 76 per cent of care providers who currently have little or no experience of end of life care believe that providing end of life care will become a more or much more important part of their work in the future. As with any developing agenda, however, there is a measure of uncertainty on the part of care providers about how to invest most effectively in end of

life care training and workforce development.

Care providers with more experience of giving end of life care were generally larger organisations (over forty staff) with a higher ratio of clinical care staff to social care staff within their establishments. These larger, more familiar providers tended to provide common elements of end of life

care training such as communication training and advanced care planning as part of a broader ongoing programme of staff development. This “continuing professional development”-type approach for the majority of staff was supplemented with more specialist training (e.g. syringe driver training) for specific staff on an ad-hoc,development-led basis.

Care providers with relatively less end of life care experience tended to be providers with smaller establishments (under thirty staff) with an emphasis on providing social care rather than clinical care. Providers of this type do, of course, constitute the vast majority of the social care sector. The approaches of these providers towards training staff to give end of life care

were generally ad-hoc and demand-driven basis.

We spoke to a number of care providers who, having no previous experience of end of life care scenarios within their establishments, had gone on to support a small number of people up to their deaths. Whilst

the nature of this study meant that we were unable to focus in particular detail on the experiences of these providers, we would suggest their experiences are perhaps the most revealing and instructive in terms of the raising the standards of end of life care across the social care sector. The providers we spoke to in this category (all small providers emphasising the

provision of social care rather than medical care) described the impact of the death upon the life of their establishment; the impact on other service users, the impact on staff who were closely involved in the care of the individual, and the impact upon peripherally involved staff and managers. Although we only spoke to a small number of these providers they all

described, in very similar ways, the process of trying to identify appropriate training and familiarisation for their staff, the process of developing and checking protocols with family and - particularly - with medical practitioners and the general stress involved in ensuring that “all the necessary boxes had been ticked” whilst at the same time providing the

best possible care. The example of these providers illustrates the challenges experienced in meeting end of life care training needs and the differences in needs and training priorities of different members of staff within a care provider organisation. With an aging population meaning that more and more care providers with no prior experience will find themselves

needing to provide end of life care for the first time, we would recommend:

1. Skills for Care and its partners should carry out a small study with care providers with recent experience of providing end of life care for the first time. Through this study, Skills for Care

and its partners could map in detail the process and experiences these providers go through when exploring end of life care for the first time and the lessons they draw.

4

With the literature on end of life care training emphasising the role of the hospice movement in providing training, we expected to find that hospices would be the dominant providers of training. Whilst hospices were

important - providing training for more than 26 per cent of high end of life care familiarity care providers and 15 per cent of low-familiarity care providers - the dominant providers of end of life care training for both high- and low-familiarity provider were in-house trainers. This study also demonstrated, however, that satisfaction with the end of life care training

provided by in-house trainers is lower than with the majority of other forms of training providers. Given this, we would suggest that;

With some care providers, and especially those with relatively greater experience of dealing with end of life care, we identified that internal

learning processes were of particular importance for sharing knowledge about end of life care techniques, In a number of cases, survey respondents described the way in which specific members of staff had, over time, come to be seen as nominal end of life care experts within the establishment, and that they had taken on a role cascading their

knowledge through the establishment. Many of the respondents questioned in the study described the important of professional and

2. Skills for Care and its partners should work to develop a range of end of life care training resources (or signposts to appropriate resources) aimed specifically at in-house trainers.

3. Skills for Care and its partners should develop a professional development network for in-house trainers. This could focus on in-house training for end of life care, but would also have

the capacity to be broadened to support the development of in-house trainers in other areas of social care training.

emotional support from colleagues in learning about end of life care and providing end of life care. Given this, we would suggest that;

The ‘market’ for end of life care training is vibrant and diverse with organisations like the West Midlands End of Life Education Consortium (a

consortium of regional hospices) offering a co-ordinated programme of end of life training opportunities. The wide variety of choice in the market for training is not universally helpful. Some of the respondents we spoke to described their confusion when trying to identify appropriate end of life care training and development opportunities for staff. They described a

crowded market place of training opportunities and providers with little support to understand which training was best suited to their needs. To support care providers to make more effective, more efficient decisions about end of life care training we would suggest that; 1

4. Skills for Care and its partners should consider the merits of promoting and supporting end of life care action learning sets within establishments, or action learning consortia between

participants from multiple care providers.

5. Skills for Care and its partners should challenge training providers to identify clearly how the end of life care training they offer maps to the current Skills for Care and Skills for

Health Common Core Competencies and Principles for End of Life Care1. This should be done in a way that supports care providers to make better informed training choices.

5

Despite the fact that most social care staff will, at some time in their personal or professional lives, find themselves supporting a person

through the final stages of their lives, we should never assume that there is anything easy or formulaic about providing such care. Whilst it might be easy enough to meet the technical challenges of providing good end of life care provision, the need to support workers to manage the emotional challenges of the work will remain persistently high. Social care as a field

of study and practice benefits from a wealth of applied research. The field is somewhat less well endowed in terms of basic research; where deficits exist in the understanding (or utilisation of understanding) of the fundamentals of human relationships on which caregiving is based. The emotional intensity of providing end of life care means that a good

“emotional performance” is likely to be more important than a good “technical performance” as a determinant of overall care quality. Although the task of researching the emotional content of end of life care provision is challenging we would suggest that:

6. Skills for Care and its partners should challenge established umbrella bodies like the West Midlands End of Life Education Consortium to become a regional clearing house; signposting

specific end of life care training opportunities for staff across the public, private and third sectors.

7. Skills for Care and its partners consider commissioning studies into the emotional demands of providing good end of life care and the emotional determinants of a good

performance in end of life care. We believe that this approach to research is likely to yield valuable insights to help shape the end of life care training offer going forward.

6

1. Introduction: The importance of end of life care

Good end of life care is essential in ensuring people experience the highest of standards of dignity at the end of their lives, in death and to support their families and friends into bereavement2. Whilst the well established

and highly specialised domain of palliative care, with its 5,500 or so specialist staff3 will continue to be an important component in the matrix of end of life care support, its limited resource can only support a fraction of the total demand for end of life care. Demographic trends will drive that demand to unprecedented levels over the coming years and the increasing

ability of people to manage life-limiting conditions independently and for longer will mean that that good end of life care in practice will increasingly call for a sophisticated partnership between health, social care, end of life specialists, individuals and their families and friends.

Many social care staff will at some time find themselves supporting an

individual who is in the final stages of their life. They may also have experience of supporting members of their own family or friends at the end of their lives. Regardless of experience, there is never anything easy or formulaic about providing good end of life care. Studies indicate that effective training is essential in enabling social care staff to perform this

sensitive caring role competently and supportively;4 both to provide care for the individual and to help them understand how to manage their own personal and professional feelings in that challenging context.5

Whilst it is acknowledged that there are currently gaps in the end of life care training on offer for both health and social care professional6 there are

also significant opportunities to bring together the knowledge and experience of specialist palliative care practitioners, hospice-based trainers, training providers and health and social care workers to develop more integrated and more explicitly person-centered approaches to end of life care.7

2. The West Midlands study

This report contains the findings from two linked research studies: a large-scale telephone survey of social care employers carried out across the West Midlands during April and May 2010 and a much smaller qualitative

follow-up study with a handful of employers during July 2010. In total the views of 340 registered social care providers, employing more than 11,300 staff, were gathered8. The region-wide survey explored the familiarity of providers with end of life care, the training that care employers had provided to staff in order to support them to deliver end of life care and

views on end of life care training and providers. The smaller qualitative follow-up study used semi-structured interviewing to explore in more detail the specifics of what training was undertaken and by whom.

The social care employers included in the survey included residential care homes9, nursing homes10, domiciliary care providers11 and nursing

agencies12. Figure 1, below, illustrates the distribution of respondents across the sub-regions of the West Midlands13.

Figure 1. Geographical distribution of survey respondents

Solihull

12

Coventry and Warwickshire

37

Black Country

67Birmingham

59

Shropshire and Telford and

Wrekin

36

Staffordshire and

Stoke on Trent

60

Herefordshire and Worcestershire

69

7

The social care providers in the study were carefully sampled from the Care Quality Commission register and then randomly selected to provide a representative sample of the organisational composition of the registered

social care sector in the West Midlands region.

Figure 2(a), below, illustrates the composition of the sample population (proportionately identical to the total population of registered social care providers within the West Midlands) whilst figure 2(b) illustrates the composition of the respondent population; the comparison clearly shows

that there is very little variance between the sample and respondent population14. An extensive methodology can be found in the appendices.

Figure 2. Sample population and respondent populationAn=1000 Bn=340

3%17%

24%56%

A. Sample Population

Residential HomeHome Care AgencyNursing HomeNursing Agency

2%18%

24%57%

B. Respondent Population

Residential homeHome care agencyNursing homeNursing agency

3. Providers experience of end of life care

The social care providers we surveyed exhibited a broadly normal distribution of experience of providing end of life care; with 42 per cent of of establishments providing end of life care either frequently or very

frequently and 39 per cent providing end of life care either infrequently or very infrequently. Sixteen per cent of the providers we spoke to told us that they had never experienced providing end of life care. Figure 3, below, illustrates the range of responses from providers on their familiarity in providing end of life care.

Figure 3. Familiarity in providing end of life caren=340

Of the different types of social care providers surveyed, nursing homes and nursing agencies were most familiar with providing end of life care whilst residential homes and home care agencies are generally less familiar. These trends, which are illustrated in figure 4 below, are primarily indicative of the different type of service users for each of these different types of

service, and specifically the fact service users requiring regular medical

Very frequently

Frequently

Infrequently

Very infrequently

Never

Don’t know

0% 5% 10% 15% 20% 25% 30%

3.2%

16.1%

13.6%

25.6%

25.3%

16.8%

8

care (either via nursing homes or nursing agencies) exhibit higher mortality rates.15

Figure 4. Relative familiarity in providing end of life care across different provider types n=340

Further analysis on the survey data and respondent variables16 showed that the distinction between high familiarity and low familiarity with end of

life care was the principal determinant of providers approaches to end of life care training.

Residential homes

Nursing homes

Home care agencies

Nursing agencies

0% 25% 50% 75% 100%

20.0%

54.1%

16.7%

69.7%

80.0%

44.6%

81.5%

28.6%

High-Familiarity Low-Familiarity Don’t know

4. The composition of the end of life care workforce

The survey of 340 organisations covered more than 11,300 staff. On average providers reported an establishment size of 35.9 staff, of which some 69.9 per cent were classed as social care staff. On average 6.4 per

cent of the workforce were deemed - by the employer - to be specialist palliative care staff. Figure 5, below, illustrates the average workforce composition of the surveyed care providers17.

Figure 5. Workforce composition of surveyed providersn=316

With a total of 35.9 staff, the average size of respondent care providers, is around eight employees larger than the regional average for social care providers as determined by the most recent NMDS-SC data which suggested an average establishment size of 28 employees.

To better understand the composition of the end of life care workforce, we

separated out data from those care providers who reported “frequent” or “very frequent” contact with people whose end of life was expected (referred to subsequently as “high-familiarity” providers) from those providers who told us that they provided care for people nearing the end of

Specialist palliative care staff

Medical care staff

Social care staff

Non-care staff

Average Establishment Size

0 10 20 30 40 50

35.9

5.5

25.1

3.0

2.3

9

their lives only either “infrequently,” “very infrequently” or “never” (referred to subsequently as “low-familiarity” providers). Figure 6 illustrates the workforce composition amongst high -familiarity providers whilst figure 7

illustrates the same data for low-familiarity providers.

Figure 6. Workforce composition amongst high end of life familiarity providersn=133

Figure 7. Workforce composition amongst low end of life familiarity providersn=175

Specialist palliative care staff

Medical care staff

Social care staff

Non-care staff

Average Establishment Size

0 10 20 30 40 50

45.6

7.9

29.4

5.5

2.8

Specialist palliative care staff

Medical care staff

Social care staff

Non-care staff

Average Establishment Size

0 10 20 30 40 50

29.2

3.8

22.5

1.1

1.8

The 175 low-familiarity providers were observed to have average establishment sizes of 29.2 staff - broadly comparable with the regional average social care establishment size as determined by the most recent

NMDS-SC data. In contrast, the 133 high-familiarity providers were observed to have significantly larger average establishment sizes of 45.6 staff as well as subtly different workforce compositions. Figure 8, below, illustrates the comparative workforce composition of high- and low-familiarity organisations in the survey.

Figure 8: Comparative workforce composition between high- and low-familiarity

providers

In high-familiarity establishments we observed that 64.4 per cent of the

workforce were classified as social care staff as opposed to 77.0 per cent of the workforce in low-familiarity establishments. Whilst high-familiarity providers report an average of one more specialist palliative carer per establishment, it is interesting to note that both high- and low-familiarity

Specialist palliative care staff

Medical care staff

Social care staff

Non-care staff

0% 10% 20% 30% 40% 50% 60% 70% 80%

17.4%

64.4%

12.2%

6.0%

13.2%

77.0%

3.7%

6.2%

10

providers report a very similar percentage of specialist palliative care staff as a total of their workforce18.

High-familiarity providers also exhibit a significantly higher percentage of

medical care staff within their workforce; with 12.2 per cent of the workforce classified as medical care staff rather than the 3.7 per cent of workforce classified as medical care staff in low-familiarity providers. The prevalence of non-care staff (a category which would include administrators, domestic staff, and volunteers) within the workforce was

also greater in high-familiarity organisations. The qualitative data gathered during the survey suggests that this reflect, at least in part, the anecdotally higher incidence of use of volunteers in those provider who experience the highest-familiarity of end of life care.

5. The provision of end of life care training for staff

When asked if they had provided any end of life care training for staff, 65.5% of social care providers questioned reported that they had indeed provided such training.

Figure 9. Reported provision of any end of life care trainingn=316

Amongst high-familiarity providers, almost 91 per cent of staff were reported to receive specialised end of life care training, whereas a little less than half of low-familiarity providers received such training (Figure 10, below).

Figure 10. Differences in provision of EoLC training between high and low-familiarity providers

n=316

Yes

No

0% 12% 23% 35% 47% 58% 70%

34.2%

65.5%

High-familiarity providers

Low-familiarity provider

0% 20% 40% 60% 80% 100%

48.3%

90.8%

11

Non-providers of training

Of the 34.2 percent of respondents (n=106) who told us that they had not provided any end of life care training for staff, the overwhelming majority

(86.8 per cent) were providers with infrequent or no experience of end of life care issues. Those providers who reported either frequent or very frequent experience of end of life care and who had not provided specific end of life care training (12.3 per cent) were questioned on why they did not provide training. In one case a provider with little prior experience of

end of life care had experienced a number of deaths in a very short period and was in the process of trying to identify appropriate training for staff. In other cases providers took the view that the balance of training which they did provide, through common induction and NVQ courses, provided an adequate grounding in end of life care without the need for further or more

specialist training provision. In a small minority of cases the provider took the view that, although they encountered end of life scenarios frequently, specific end of life care support was best left to acute care providers such as hospices and hospitals; the emphasis for these providers was to “hand over” care to these providers in anticipation of end of life. The graph

below, figure 11, shows the relationship between provider familiarity and non-provision of end of life care training.

Figure 11. EoL familiarity of providers who do not provide any EoLC training for staffn=106

Very frequently

Frequently

Infrequently

Very infrequently

Never

Don’t know

0% 7% 13% 20% 27% 33% 40%

2.8%

35.8%

25.5%

25.5%

8.5%

3.8%

The same cohort of providers who reported that they had not provided any end of life care training for their staff were asked how they would respond if an end of life care training need arose within their organisation. The

majority (55 per cent) responded that they would provide some training for all of the care staff within their establishment. Those respondents who were not able to offer training for all frequently cited it as an aspiration. The second highest cohort (at 23 per cent) responded that they would provide training for some care staff, and specifically those care staff

involved in the end of life care scenario. Fourteen per cent of respondent organisations said that they would provide training for all staff regardless of weather they were directly involved in providing end of life care or not. Further analysis showed that all of these providers were smaller residential homes with a average of 16.92 places (median = 12) against an average for

the cohort of 25. 32 (median = 20). Those respondents who said that they would not provide any specific training for any staff if an end of life care training need arose were all providers who did not have any current experience of end of life care or end of life scenarios. Whilst all of these providers took the view that end of life care would become a more

important part of social care in the future they were also generally ambivalent about the impact which this wider trend would have upon their establishments.

Figure 12. Reported provision of any end of life care trainingn=205

Provide training for ALL care staff

Provide training for SOME care staff

Provide training for ALL staff

Provide for some staff

Not provide training for any staff

Don't know

0% 10% 20% 30% 40% 50% 60% 70%

5.0%

10.0%

7.0%

14.0%

23.0%

55.0%

12

Approaches to training: Training at induction

Of the 65.5 per cent of social care providers providers who reported providing end of life care training for their staff, 98.8 per cent of providers

told us that they provided this training for staff at induction. Of this total, a slim majority (55.1 per cent) provided end of life care training at induction for all care staff, followed by 21 per cent of providers who provided this training for all staff (care and non-care) as illustrated in figure 13, below.

Figure 13. Reported provision of end of life care training at inductionn=205

The distinctions between high- and low-familiarity providers were fairly negligible; with high-familiarity providers appearing more likely to provide end of life care to all care staff and to all staff (care and non-care) or to discuss end of life care selectively with some staff. Providers with low familiarity with end of life care were markedly more likely not to provide any

end of life care training at induction. The differences between approach to end of life care training at induction are illustrated in figure 14, below.

Discuss EoLC at induction with ALL care staff

Discuss EoLC at induction with ALL staff

Don’t discuss EoLC at induction

Discuss EoLC at induction with SOME care staff

Discuss EoLC at induction with SOME staff

Don't know

0% 20% 40% 60%

1.0%

2.9%

5.9%

15.6%

21.0%

55.1%

Figure 14. Reported provision of end of life care training at induction; high and low-familiarity providers compared

n=205

Approaches to training: Training post-induction

Of the 65.5 per cent of social care providers providers who reported providing end of life care training for their staff, 98.2 per cent told us that they routinely provided this training for staff post-induction. As with induction training, the majority of this training (56.6 per cent) was provided

for all care staff, followed by just 12.2 per cent of providers who provided this training for all staff (care and non-care) as illustrated in figure 15, below.

Discuss EoLC at induction with ALL care staff

Discuss EoLC at induction with ALL staff

Don’t discuss EoLC at induction

Discuss EoLC at induction with SOME care staff

Discuss EoLC at induction with SOME staff

0% 20% 40% 60%

3.6%

6.0%

19.3%

20.5%

51.8%

2.5%

5.0%

12.5%

21.7%

58.3%

13

Figure 15. Reported provision of post-induction end of life care trainingn=205

Comparing the post-induction training received by staff in high- and low-familiarity providers, we can see that low-familiarity providers are significantly less likely to provide post-induction training to all care staff than their high-familiarity counterparts but are somewhat more likely to provide training selectively to care staff.

Routinely provide EoLC training for ALL care staff

Don’t routinely provide EoLC training

Routinely provide EoLC training for ALL staff

Routinely provide EoLC training for SOME care staff

Routinely provide EoLC training for SOME staff

Don't know

0% 20% 40% 60%

1.5%

2.9%

10.2%

12.2%

17.1%

56.6%

Figure 16. Reported provision of any end of life care trainingn=205

Routinely provide EoLC training for ALL care staff

Routinely provide EoLC training for ALL staff

Don’t routinely provide EoLC care training

Routinely provide EoLC training for SOME care staff

Routinely provide EoLCtraining for SOME staff

0% 20% 40% 60% 80%

1.2%

18.1%

24.1%

12.0%

43.4%

4.2%

5.0%

12.5%

12.5%

65.0%

14

6. Training content

The initial region-wide telephone survey did not yield adequate intelligence on the specific training content provided by social care employers19. To address this deficit we carried out a limited follow-up study with a number

of care providers across Birmingham and Coventry and Warwickshire. Whilst these qualitative findings20 are clearly not statistically robust in the same way as the findings from the region-wide survey they do provide some useful indications of the respective behavior of high- and low-familiarity care providers with regard to the specific content of end of life

care training which they provide for their staff. A number of the issues highlighted by this small, qualitative study are deserving of further investigation.

The approaches employers took to providing training (and therefore the content of that training) fell fairly distinctly into two camps; an ongoing

“continuing professional development” approach and an “ad-hoc” demand-driven approach. A further distinction is apparent between low- and high-familiarity providers; such that it is possible to discern three broad types of approach to the provision of end of life care training. These three typologies are outlined in the diagram below.

Figure 17. Identified typology of end of life care training provision

1

23

HighLow

Ad Hoc

CPD

Approach to EoLC Training

Familiarity with providing EoLC

Type one providers: Low-familiarity / Ad hoc training provision

In the small follow-up study we spoke to a number of low familiarity

providers - generally residential homes rather than nursing homes or nursing agencies - who had some limited experience of providing end of life care. One of the providers - a long-term home for people with learning disabilities - was conscious of the homes ageing population and the consequent importance of training staff to provide end of life care. In the

few instances where these providers were called upon to provide end of life care, their approach to training was very much ad hoc; with managers seeking out training for named staff on the basis of specific identified needs. The training content consisted of fairly basic end of life familiarisation training for staff broadly involved in the care of the

individual; with training topics including, stages of end of life, communication with the individual and with their family. More specific technical training was provided on topics including mouth care and the prevention of bedsores was for those staff who were involved in the close personal care of the individual. The care provider commented that the

experience had been challenging for staff and for the broader home community, and that as consequence the home would look to put in place a more systematic approach to end of life care in future.

The ad-hoc model of end of life care training provision, with a blend of general familiarisation training for a wide group of staff together with more

specifically technical instruction for a smaller group of staff seems to be the default model for low-familiarity providers. What is interesting, in the case of the example discussed above, is that - prior to any decision to provide end of life care training for staff - there was a discussion within the home around whether the individuals wish to die within the home could be

supported at all, or whether they would have to move elsewhere. This suggests that care providers with low or no end of life care familiarity may need specific and additional support to manage their first few end of life care situations.

15

Type two providers: Low-familiarity / CPD-type training provision

The majority of low familiarity providers we spoke to in the follow-up study who took a CDP-type approach to end of life care were larger

establishments which were part of larger parent organisations. Ongoing staff training in these establishments was built around a pre-determined syllabus. In a very small number of cases respondents mentioned that this syllabus had been constructed in response a higher competency framework for end of life care such as the Common Core Competencies

and Principles for end of life care21 or the Gold Standard Framework for Care Homes22. In most cases, however, the syllabus was developed at higher level within the organisation and then cascaded down the organisation. One respondent commented:

“we have workbooks with [company name] mandatory training. We

support the staff to work through the workbooks and then they get sent off. The company sets the programme. I suppose it’s all in line with [national] standards but we don’t actually see the standards here.”

This approach to training tended to emphasise generalist health and social

care topics (based around National Occupational Standards for Heath and Social Care) indeed one respondent commented: “we have training that works us towards the NVQ and some bits of end of life are covered in that.” Where more specific emphasis was placed on end of life care elements, respondents mentioned topics including advance care planning, symptom

management, personal care and hygiene related to end of life. Discussing the training her organisation had provided on end of life care, one respondent commented;

“we did a lot on advance care planning but that’s not just to do with end of life I don’t think. I think it’s good to talk about what’s going to

happen and to make plans - whether they’re for end of life or not. And then, of course, there is a lot of communication too associated with that. So that’s communicating between staff and especially

communicating with the family. Making sure that they know what the situation is and what everyone will be doing.”

When asked how they would approach the need for more advanced end of life care training, the responses from low-familiarity CPD-type care providers varied interestingly. For some providers there was a view (mentioned earlier, pp.15) that providing end of life care was better left to other care providers and therefore they did not envisage or plan for the

acquisition of more specialised end of life care skills. For other providers (generally the smaller providers) there was a understandable wait-and-see approach; with respondents suggesting that they would seek more specialised training on an ad-hoc basis as demand dictated. For a third group of providers (generally larger and more resource rich providers) there

was an acknowledgement that the aging of their residents (or clients in the case of domiciliary care providers) and the more general demographic aging within the population at large would mean that providing end of life care would become a progressively more important part of their work (see section 9 which corroborates this view). For these providers there was an

acknowledgement of the need to plan for future end of life care requirements and an acknowledgement that this would most likely necessitate some changes in the composition of their workforce; with the recruitment of more medical professionals to work alongside their social care staff.

Type three providers: High-familiarity / mixed training provision

The third type of provider we identified through the follow-up study were high-familiarity end of life care providers who took a blended approach to

staff training and development; with a mixture of CPD-type training and

16

more specialised development-led (rather than demand-led) technical top-up training.

We know (from the region-wide survey) that high-familiarity providers tend

to have larger and somewhat more technically specialised workforces; with a higher ratio of clinical staff to social care staff. It is unsurprising then that these providers were seen to blend a “continuing professional development” approach to end of life care training, with a demand-led approach to specific technical training for specific staff.

As with comparable low-familiarity providers, CPD-type approaches were most commonly arranged around a pre-determined syllabus developed either in-house (in larger organisations) or else developed by the parent organisation and cascaded down to the establishment level. The providers we spoke to in this category described providing training on the Care

Pathways (specifically the Liverpool Care Pathway), the physiology of death, communication and team working.

With a number of very high familiarity providers we were able to identify staff (all with clinical care backgrounds) who had become nominal in-house “specialists” in end of life care, who where intensively trained over and

extended period and who were instrumental in cascading knowledge throughout the rest of the workforce. Specific training for cited these individuals included syringe driver training, tissue viability training and compression dressing training.

Type four providers?

Whilst we have identified three types of provider behaviour - based on the relationship between familiarity of providing end of life care and approach to training provision - the typology leaves open the possibility of a fourth

type in the upper right quadrant of the matrix; the high-familiarity / ad-hoc provider.

We did not identify any providers displaying this behavior in our sample

study. Moreover, we would suggest in any instance where this high-familiarity / ad hoc training combination is identified, that this would likely represent an indicator of inadequate or failing end of life care.

Figure 18. The potential for a fourth type of end of life care training provision

Other issues in end of life care training choices

The informal conversational style of the qualitative follow-up study allowed respondents to discuss their thoughts and feelings on end of life care with an openness that the rather more formal approach of the mass region-wide survey did not allow for. In the course of our conversations undertaken as

part of the follow-up study we identified a number of other issues which

1

2 3HighLow

Ad Hoc

CPD

Approach to EoLC Training

Familiarity with providing EoLC

4

17

are likely to be of importance to the development of end of life care training in the social care sector.

A number of respondents mentioned that priorities for providing end of life

care, and therefore the content of any end of life care training would differ depending on the position of the member of staff within the organisation. One respondent, discussing the findings from the region-wide survey on priorities for end of life care, commented:

“you won’t find many care staff who say ‘oh, we need to know our legal

position when someone is dying’ - and that’s a good thing. If that’s at the forefront [of the care workers minds] then the chances are the quality of care they’re going to give is going to be affected. But then, by the same token, if you’ve got a manager who thinks that the legal position isn’t important then that’s also going to be a problem - and it’s

also going to have a poor impact on the quality of care. The point is, I think, that there needs to be more distinct training for managers, and for care workers.”

Other respondents discussed the limits to social care in the context of end

of life care. One respondent commented:

“there’s a line between what’s [social] care and what’s medical. You get that [distinction] with the staff, and also in the training too - so you’ve got training for care staff and different training for medical staff. There comes a point when the needs of the person tip from being mainly care

to mainly medical. We’re a [care provider] and not a medical provider so that tipping point is difficult for us.”

Questioned as to whether this would lead the establishment to widen its staff team to include medical care professionals, the respondent answered:

“in time most likely, yes. But that’s not a decision for me”.

This response suggests that some “blindspots” may exist in terms of the scope ad potential to develop the social care worker role through more effective training, Whilst there are are clearly points at which medical care

needs are foremost, these can often be transient and often managed effectively within the social care setting given additional training and resource.

Communication in end of life care is widely acknowledged as being of high importance (see “Priorities for End of Life Care, pp.29-30). In the follow-up

study with care providers across Birmingham and Coventry and Warwickshire a number of respondents raised the issue of communication and relationships more generally. One respondent commented:

“the relationship with the GPs is very important. We can’t certify the death. We need a doctor to do that. And that means either calling 999

and sending the person into hospital or it means calling the GP in [once it appears that their end of life is imminent]. Now we would prefer not to call 999, but at the same time we know that GPs can be reluctant to certify the death unless they know the person and they’ve treated them - that’s because of [Harold] Shipman that reluctance. So what’s

happened sometimes is that the GP comes and it’s clear that the person is dying and it’s the GP who calls 999, not us. And that’s why I say the relationship with the GP is important. They need to be a part of the team providing care. They need to understand advance care planning. It’s quite contrary for them actually; the idea that it’s better sometimes

not to do something.”

Asked what training was available for GPs the respondent commented:

“I’m not sure. I suppose the PCT puts something on, but maybe they just do it for doctors. It needs to be for everyone involved. It needs to bring people together.”

18

On the subject of identifying appropriate training and providers one respondent - a residential care provider with limited experience of end of life care - commented:

“there are lots of trainers out there but it’s confusing knowing where to go first. What was our approach? Well I got on the internet and searched. And we also went back to providers who we’d used before to see if they could do anything for us. We tried a [a distance learning provider] but to be honest it wasn’t much good. It was relatively cheap

but the problem was that you just didn’t get the social side - the interaction. We approached [a local hospice] and they were really helpful but the training they were offering was just too much for what we needed. We found a trainer in the end - she was a retired nurse - and that was good for what we needed but it took a long time to get there -

and actually with end of life that sort of time is generally something you don’t have.”

7. Training accreditation

NB: The results quoted in the remainder of this section are based on the initial region-wide survey of care providers, and not on the findings from qualitative follow-up study.

When questioned, only 28.3 per cent of respondent care providers

reported that the end of life care training which they had provided for their staff resulted in an accredited, recognised qualification.

Figure 19. Reported incidence of EoLC training leading to a recognised qualificationn=205

In practice, however, even this low measure is questionable as only half for these respondents were able to cite a recognised qualification of any type. This is equal to just 14.6 per cent of the total respondents. The vast majority of cited qualifications (86.6 per cent of the total) were NVQ qualifications which included some element of training which the

respondent deemed to be end of life care training. In one case a respondent cited a postgraduate diploma qualification in palliative care at level 5 whilst in one other case a respondent cited an undergraduate degree BSc. degree in palliative care (a level 6 qualification). In the remainder of cases where respondents were able to cite a recognised

Yes

No

Don't know

0% 12% 23% 35% 47% 58% 70%

5.4%

66.3%

28.3%

19

qualification, the qualification cited was professional nursing qualification. In both of these cases, however, the cited qualification was from the now defunct English National Board for Nursing, Midwifery and Health Visiting -

indicating that the training leading to that qualification has not been offered recently. The breakdown of cited qualification levels is illustrated in figure 20, below.

Figure 20. rCited EoLC qualification levelsn=30

The remainder of respondents cited training resulting in either an attendance or completion certificate either from the training provider or from their employer. In some cases there was evidence of employers developing their own end of life care training materials to meet the needs of their organisation.

Comparing the response from high-familiarity and low-familiarity care providers, we find that high-familiarity providers are somewhat more likely to offer recognised qualifications than their low-familiarity counterparts. This is likely to relate to the fact that these (generally larger) providers can invest in in-house end of life care specialists, and need to invest

Level 2

Level 3

Level 4

Level 5

Level 6

Professional qualifications

0% 10% 20% 30% 40% 50%

6.7%

3.3%

3.3%

6.7%

36.7%

43.3%

commensurately in their professional development. This is illustrated in figure 21, below.

Figure 21. rPrevalence of cited EoLC qualification between high and low-familiarity providers

n=205

Yes

No

Don't know

0% 13% 27% 40% 53% 67% 80%

1.2%

73.5%

25.3%

8.3%

62.5%

29.2%

20

8. The training provider

Accounts of end of life care training in the literature tend to emphasise the role of hospices as the traditional providers of end of life care training in social care. Given this, we expected to find hospices providing the

majority of training. In practice we found a rather more complex picture with a “mixed economy” of end of life care training provision; with the hospice sector playing an important (but secondary) role to in-house trainers. Private-sector training firms, freelance trainers and further and higher education providers and others made up the balance of the provider

marketplace.

Figure 22. Type of EoLC training providers cited by all respondentsn=205

Comparing high- and low-familiarity providers we find that high familiarity providers are more likely to make use of in-house trainers, but that in-

house trainers are the most frequently use trainer for both high- and low-

In-house trainers

Trainers attached to a Hospice

Private sector training providers

Independent trainers

University or college

Some other type of trainer

Don't know

0% 8% 17% 25% 33% 42% 50%

4.9%

10.7%

19.5%

20.0%

20.5%

21.5%

46.8%

familiarity providers. High-familiarity providers were more likely to use hospice-based trainers. A number of the low-familiarity we spoke to suggested that hospice-provided training was something of a “Rolls

Royce” solution in terms of cost and quality, and consequently they were more likely to look to independent or private sector training providers in the first instance. The majority of independent training providers we identified through the study had clinical care (rather than social care) backgrounds either as former nursing staff or current or former general practitioners.

Where respondents cited using some other type of training provider, in most cases this referred to a distance learning or web-based training resource provided by a private training providers. Whilst a number of the respondents we spoke to had heard about the NHS end of life care web-based training resources [e-ELCA] but none of the respondents had

attempted to use these resources.

Figure 23. Type of EoLC training providers cited by high and low-familiarity providersn=205

In-house trainers

Trainers attached to a Hospice

Independent trainers

Private sector training providers

A university or college

Some other type of trainer

0% 10% 20% 30% 40% 50% 60%

13.3%

18.1%

20.5%

15.7%

14.5%

37.3%

9.2%

20.0%

20.8%

23.3%

26.7%

53.3%

21

When we examined the number of training providers cited by individual social care employer, we found that whilst nearly half of high-familiarity care providers cite two or more providers (46.7 per cent), only one fifth of

low-familiarity training providers cite two or more providers (21.7 per cent). No employer cited more than five different end of life care training providers. These statistics, illustrated in figure 24, suggest that whereas low-familiarity care providers are more likely to look for a “one-stop” training provider to meet their end of life care training needs, social care

providers with greater familiarity with end of life care are more sophisticated consumers of end of life care training; seeking out multiple providers to meet their more nuanced training needs.

Figure 24. Number of EoLC training providers cited by high and low-familiarity providers

n=205

2

3

4

5

6

0% 8% 17% 25% 33% 42% 50%

0%

2.4%

3.6%

9.6%

21.7%

0%

2.5%

5.0%

20.8%

46.7%

Satisfaction with training providers

This idea that high-familiarity end of life care providers are more sophisticated consumers of end of life care training is further reinforced by

the statistics we were able to gather on satisfaction with training providers. Whilst satisfaction with training providers was generally high here, as illustrated in figure 25, we see that high-familiarity providers are less likely to be ‘very satisfied’ with training provision than those care providers with relatively less familiarity.

Figure 25. Reported satisfaction with EoLC training providersn=205

Examining the responses in more detail we find that, in general, private sector training providers tend to elicit the best and most consistent

satisfaction ratings from employers; with every respondent indicating that they were very satisfied with the training that they had received from this type of trainer. “Other types of training provider” received the most

Very satisfied

Satisfied

Neither satisfied nor unsatisfied

Unsatisfied

Very unsatisfied

Don't know

0% 12% 23% 35% 47% 58% 70%

11.0%

0%

1.2%

3.7%

22.0%

62.2%

3.3%

1.7%

1.7%

0.8%

40.8%

51.7%

22

negative reviews from respondents - although still a relatively small number. In one case this criticism was directed at a hospital-based training provider who was perceived to lack knowledge about the social

care context. In all other cases the criticism was directed at web-based training resources. In general, whilst respondents recognised the value of web-based training materials there was a widespread view that when used in isolation, these material gave a rather limited appreciation of the complexity of good end of life care. Respondents who offered an opinion

on this were united in the view that good end of life care required a degree dialogue and sharing of knowledge between learners which web-based training alone could not support. Figure 26 below illustrates these findings.

Figure 26. Satisfaction with different types of EoLC training providersn=205

Trainers attached to a Hospice

Private sector training providers

A university or college

An independent trainers

In-house trainers

Some other type of trainer

0% 25% 50% 75% 100%

33.3%

39.1%

53.8%

50.0%

0%

37.0%

57.1%

58.6%

46.2%

42.5%

100.0%

60.9%

Very satisfied Satisfied Neither satisfied nor unsatisfied Unsatisifed Very unsatisifed

What more do employers want from end of life care training?

Respondents to the survey were asked what changes they would like to see in end of life care training. Of the 98 respondents who replied, 26.5%

of respondents said that they were happy and did not want to see any changes to the current system of end of life care training. Of the 73 respondents who suggested specific changes, the vast majority would like to see improvements in the availability and accessibility of end of life care training. Figure 27, below, shows the breakdown of responses to this

question and appendix two contains the full-text responses from respondents.

Figure 27. Satisfaction with different types of EoLC training providersn=73

More availability and access

More specialist training

More effective delivery model

Higher provider quality

Lower cost

Greater sensitivity in delivery

0% 15% 30% 45% 60%

5.5%

6.8%

9.6%

11.0%

13.7%

53.4%

23

9. Priorities for end of life care

Respondents were asked to respond to a list of potential topics which might be covered in end of life care training, rating these topics on a scale from one to ten, when ten was the most important. The topics included in

the question were derived from the current Skills for Care Knowledge Set for End of Life Care23 and the responses from social care employers are illustrated in figure 28, overleaf.

We know, from the extensive research that exists on patient and family perspectives on what matters in end of life care, that there are a number

of key recurring themes. From approaches to communication,24 to pain management,25 to dignity and respect what unites these themes is the need for care workers to adopt a resolutely person-centered approach built around the needs, wishes and beliefs of the individual26. Given this research evidence, it is extremely positive to see that the kind priorities

identified by survey respondents chime very closely with priorities identified by those receiving end of life care.

Whilst non of the priorities could be said to be seen by respondents as unimportant - the average rating for the lowest factor was nine out of ten - there is a clear trend towards prioritising the more explicitly human factors

such as dignity and safeguarding. Institutional factor such as awareness of prevailing legislation are, in comparison, seen to receive lower prioritisation from respondents.

Whilst it was not possible in this study, it would be interesting to use future studies to explore the way in which priorities for end of life care and end of

life care training vary with position in an organisation. The priorities outlined here are generally the priorities espoused by training managers; it would be interesting and potentially instructive to explore the way in which the priorities of establishment managers and care workers differ from this.

24

Figure 28. Rating of a range of topics which might be covered in end of life care training

n=313

25

Understanding the importance of dignity and respect in end of life care

Understanding the importance keeping people safe from injury, abuse and harm

Understanding how to provide end of life care from a person-centered perspective

Understanding how to communicate effectively with people nearing the end of their life

Understanding how to communicate effectively with the families and friends of people nearing the end of their life

Understanding how to communicate effectively with colleagues as you care for people nearing the end of their life

Understanding how to review care plans as people’s needs change

Understanding the role of advance care planning in end of life care

Understanding the normal physiological changes that take place as people near the end of their lives

Understand how to managing the symptom management of people nearing the end of their lives

Understanding how to use assessment tools to assess pain and quality of life when caring for people nearing the end of their life

Understanding the importance of advocacy in end of life care

Understanding how your own personal and work experiences will affect the end of life care you provide

Understanding how different services and organisations should work together to care for people nearing the end of their life

Understanding how legislation and policy affects organisations who provide end of life care

Understanding how legislation and policy affects individual care workers who provide end of life care

0% 25% 50% 75% 100%

57.9%

58.2%

62.7%

66.2%

67.2%

71.4%

72.0%

73.6%

74.6%

75.6%

78.8%

84.2%

86.8%

87.8%

92.0%

92.6%

10 9 8 7 6 5 or less

10.The growing importance of end of life care

It is a given, if for no reason other than prevailing demographics, that end of life care will become more important feature of social care policy and practice over the coming years. It is good to find, therefore, that

respondents to the survey were in overwhelming agreement with this; with almost 84 per cent of respondents telling us that end of life care would become much more important in future years.

Figure 29. Future important of end of life care in the social care sectorn=313

It is also good to see, as illustrated in figure 30, that there is little disparity between the view of high-familiarity providers and low-familiarity providers in this regard.

Much more important

A little more important

Neither more or less important

A little less important

Much less important

Don't know

0% 20% 40% 60% 80% 100%

1.3%

0%

0.3%

2.9%

11.6%

83.9%

Figure 30. Future important of end of life care in the social care sector; high and low familiarity organisation compared

n=305

When questioned about the future place of end of life care within their own establishments, respondents were similarly emphatic with 63 per cent of all respondents suggesting that end of life care would become much more important within their own organisations.

Much more important

A little more important

Neither more or less important

A little less important

Much less important

0% 15% 30% 45% 60% 75% 90%

0%

0.6%

4.0%

11.6%

82.1%

0%

0%

1.5%

11.4%

87.1%

26

Figure 31. Future important of end of life care within respondents organisationsn=313

Comparing the differences in organisation-level impact between high- and low-familiarity organisations we see that around one-fifth (19.1 per cent) of organisations who currently have low levels of familiarity with end of life care believe that end of life care will become neither more nor less important to them in the coming years. In contrast, more than three

quarters of current low-familiarity respondents believe that end of life care would become either a little more important or much more important to them over the coming years. A number of the respondents - specifically respondents from long-term residential care homes - suggested that demographic aging amongst their current residents meant that they

needed to begin considering the role of end of life care within their organisations.

Much more important

A little more important

Neither more or less important

A little less important

Much less important

Don't know

0% 20% 40% 60% 80% 100%

1.6%

0%

2.3%

12.9%

20.3%

63.0%

Figure 32. Future important of end of life care within respondent organisations; high and low familiarity organisation compared

n=305

Much more important

A little more important

Neither more or less important

A little less important

Much less important

0% 15% 30% 45% 60% 75% 90%

0%

3.5%

19.1%

24.3%

51.4%

0%

0%

5.3%

15.9%

78.8%

27

11.Conclusions

This study is a useful contribution to our understanding of the behavior of care providers with regard to training for end of life care:

• It has demonstrated that end of life care is a priority for care providers across the region, and that a majority of those providers who currently have no experience of end of life care believe that it will become progressively more important for them over coming years.

• It has told us - perhaps not unsurprisingly - that the approach to

providing end of life care training for staff is dictated primarily by the care providers familiarity with of end of life care. Those with high familiarly provide more training and to a higher degree of specialisation, whilst those care providers with less familiarity provide less training to a less specialised degree.

• It has shown how care providers tend to take an incremental approach to end of life care training; with the least familiar providers taking an ad-hoc approach to training and more experienced providers often taking a more integrated approach with continuing professional development for care workers.

• It has illustrated that - whilst the ‘market’ for end of life care training in the West Midlands may be vibrant and diverse - it is also confusing for time-starved social care providers to navigate in order to make the most efficient, effective investments in end of life care training.

• It has revealed that - despite the vibrance of market for end of life care

training within the region, the predominant model of training delivery is in-house training, and that satisfaction with the end of life care training offered in the way is lower than with almost all other forms of training delivery.

As well a providing these insights, the study has illustrated very usefully the limits of mass-survey type research to “get under the skin” of complex, nuanced issues such as the provision of end of life care and the approach

to training staff to provide that care. Whilst the region-wide survey constitutes a useful benchmark in understanding, it was the smaller, more in-depth follow up conversations with social care providers which revealed the important details of how care providers approached training their staff to provide end of life care. It was - in particular - the qualitative follow-up

study which emphasised the importance of communication training in end of life care, and particularly the ability to communicate and work within an interdisciplinary team including both social care and medical care practitioners.

These insights together suggest that in order to improve end of life care

training in the West Midlands there needs to be some effort to improve the co-ordination of the end of life training offer from the public, private and third sectors. There needs to be some effort to clarify the content of the training offer to ensure that care providers seeking training are able to quickly and effectively identify whether the training they identify will meet

their specific needs. There needs to be some effort to support in-house trainers to provide more effective training. There also - perhaps most importantly of all - needs to be a renewed recognition that good end of life care has has a huge amount to do with good interpersonal relations between the team caring for the individual nearing the end of their life;

training which fails to adequately recognise this is likely to be flawed.

In the longer term - as the aging population leads to more to people reach the end of their lives needing some form of social care - it is likely that there will need to be a reshaping of the care workforce at the establishment level; with care providers who currently only employ social

care providers increasingly needing to take on a compliment of medical care staff also.

28

Appendices

29

Appendix one: Methodology

Brief

To identify the End of Life training opportunities for the Social Care

workforce in the West Midlands and take up of those opportunities.

Summary Methodology

To deliver the brief we will use a large-scale computer aided telephone survey of a stratified randomised sample of regulated social care providers

across the West Midlands. The survey instrument will be designed and developed by Policyworks Associates Ltd. Calls will be placed by call handlers from the regions sub-regional care partnerships operating under contract to Skills for Care West Midlands

Population and Sampling Strategy

We have used the Care Quality Commission register of regulated provider to define the eligible respondent population. Based on most recent published version of CQC register (February 2010)27 we were able to identify a total of 2593 social care providers in the West Midlands region.

The table below (Figure 1) shows the typological and geographical breakdown of these these providers28.

Type of Service*Type of Service*Type of Service*Type of Service*Type of Service*

Home Care Agency

Nursing Agency

Nursing Home

Residential Home✝ Total

Shropshire

The Wrekin

Sandwell

41 6 31 101 17922 4 14 36 7643 1 26 64 134

Type of Service*Type of Service*Type of Service*Type of Service*Type of Service*

Home Care Agency

Nursing Agency

Nursing Home

Residential Home✝ Total

Coventry

Dudley

Walsall

Birmingham

Herefordshire

Wolverhampton

Worcestershire

Staffordshire

Solihull

Stoke-on-Trent

Warwickshire

56 3 12 63 13425 1 21 95 14230 5 15 63 113103 15 68 284 470

28 2 23 73 126

42 6 24 64 136

61 6 60 161 288

69 10 84 177 34023 1 11 59 94

24 4 16 68 112

50 8 42 149 249

TotalPercentage

617 72 447 1457 259323.8% 2.8% 17.2% 56.2% 100.0%

* Excludes 11 “adult placement scheme” services. Adult placement schemes were removed from the eligible population on the basis of their very small number and the low probability of end of life care issue emerging within the adult placement scheme setting.

✝Total includes one service listed separately as a”non-medical care home”

To generate a sample population from the total population which delivers a

confidence interval of ±5% at the 95% confidence level we used the following equation:

where;

30

t is the sample size corrected for the size of the total populations is the sample size without population correctionpop is the total population eligible for selection

The statistic ‘s’ is given by the following equation:

where;

Z is the value of the requisite confidence level (=1.96)p is the probability of picking any one case from the total population (=0.5) c is the confidence interval (=0.05)

Based on this calculation we arrive at a target sample size of 333 respondents as shown in the figure below.

0

300

600

900

1200

1500

1800

2100

2400

2700

3000

0% 1% 2% 3% 4% 5% 6% 7% 8% 9% 10%

Req

uire

d r

esp

ond

ent

coun

t

Confidence Interval

To ensure this sample size was achieved in practice we oversampled to accommodate a typical response rate of 30%. This implies a total sample population of 1,000.

The total eligible population was stratified by geography and by establishment type. This means, for example, that where home care agencies comprised x percent of the total establishment population of a given geographical area, then x per cent of the survey sample for that

geographical area would be made up with care homes. The total and target sample sizes for each establishment type and geography are shown below.

Shropshire

The Wrekin

Sandwell

Coventry

Dudley

Walsall

Birmingham

Herefordshire

Wolverhampton

Worcestershire

Staffordshire

Solihull

Stoke-on-Trent

Warwickshire

Total sampled

Total target

Type of ServiceType of ServiceType of ServiceType of ServiceHome Care

AgencyNursing Agency

Nursing Home

Residential Home Sample Total

target

16 2 12 39 69 238 2 5 14 29 1017 0 10 25 52 1722 1 5 24 52 1710 0 8 37 55 1812 2 6 24 44 1540 6 26 110 181 6011 1 9 28 49 1616 2 9 25 52 1724 2 23 62 111 3727 4 32 68 131 449 0 4 23 36 129 2 6 26 43 1419 3 16 57 96 32

238 28 172 562 100079 9 57 187 333

31

Selecting cases

To select the requisite sample size data from the CQC registration database was filtered provide unique lists by geography and service

typology.

The random number generation service from Random.org 29 was used to identify unique random, non-consecutive integer string of length n. The cases within the original list were paired with the random integer string. The random integer string (and associated cases) was reordered in

ascending numerical order to randomise the cases. With the cases re-arranged in a random sequence, the requisite number of cases were chosen from the top of the list.

For example, in the case of care homes in Birmingham, CQC data was filtered to identify all residential care homes in Birmingham (284). A string

of 284 random, non-consecutive integer was generated using Random.org and attached to the filtered list of 284 care homes. The list was then reordered on the basis of the ascending numerical order of the random string. The first 110 cases were then selected to represent the total cohort of care homes in Birmingham.

Compiling call sheets

The selected cases were extracted and recompiled on the basis sub-regional care partnership geographies. So, for instance, all selected cases from Dudley, Sandwell, Walsall and Wolverhampton were amalgamated to

match the boundaries of the Black Country Partnership for Care area. Where such amalgamation was required the sampled cases were once again re-ordered using the random, non-consecutive integer string technique described above. The table below shows the number of contacts assigned to each sub-regional care partnership as part of this

process.

BCDA

BCPC

SWICDA

ACT

SSCWP

CWDP

CWPC

Total

Home Care Agency

Nursing Agency

Nursing Home

Residential Home

Total for Call

SheetTarget

Returns

40 6 26 110 181 6054 5 33 110 202 679 0 4 23 36 1234 3 32 90 160 5336 5 39 94 174 5824 4 17 53 98 3341 4 21 82 148 49

238 28 172 562 1000 333

Selected case records, groups by care partnership, were extracted into tabular format. The tabular “call sheets” contained the following fields:

• Unique case identified (UID)• District• Facility type• Contact person name• Establishment name• Telephone numberProviding such detail (specifically providing the contact name and establishment name) is somewhat unusual, and introduces the risk that call handlers from the sub-regional care partnerships will prefer calling organisations with whom they already have a relationship. On balance, the project team decided that providing disclosive call sheets would deliver a

net benefit; allowing care partnership call handlers to place calls efficiently to organisations with whom the care partnership has an existing relationship, and allowing call handlers to introduce or restate the care partnership offer to organisations with whom there is currently no relationship or a weak relationship.

Electronic copies of the calls sheets (including comprehensive instructions for call handlers) were sent to care partnership project leads and call handlers were invited to training session prior to the commencement of the data collection phase

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Survey instrument

The survey questions, developed in consultation with Skills for Care West Midlands, are shown in the table below

QuestionQuestion Type Responses

1 Roughly how many of the following types of staff work at your current location?

Multiple numerical entry

• Specialist palliative care staff• Medical care staff• Social care staff• Non-care staff• Don’t know

2 How frequently do any of these staff provide care to people whose end of life is imminent? (i.e. expected within a mater of weeks or days)

Single choice

• Very frequently• Frequently• Infrequently• Very infrequently• Never• Don’t know

3 Has your organisation arranged any training for staff on how to provide end of life care? This might be through induction training, through your regular programme of training activity or through specially arranged training.

Single choice

• Yes• No• Don’t know

QuestionQuestion Type Responses

4 [for those answering “Yes” to q.3] Thinking specifically about the induction training that you provide for your staff, would you say you...?

Multiple choice

• ...discuss end of life as part of the induction training for ALL care staff

• You discuss end of life as part of the induction training for SOME care staff

• You discuss end of life as part of the induction training for ALL staff

• You discuss end of life as part of the induction training for SOME staff

• You don’t discuss end of life as part of staff induction

• Don’t know

5 [for those answering “Yes” to q.3] Now thinking about the training that you provide AFTER induction, would you say you...?

Single choice

• ...routinely provide end of life care training for ALL care staff

• You routinely provide end of life care training for SOME care staff

• You routinely provide end of life care training for ALL staff

• You routinely provide end of life care training for SOME staff

• You don’t routinely provide end of life care training

• Don’t know

6 [for those answering “Yes” to q.3] Now thinking about if a specific end of life care need arose in your organisation, would you...

Single choice

• ... provide specific end of life care training for ALL care staff

• provide specific end of life care training for SOME care staff

• provide specific end of life care training for ALL staff

• provide specific end of life care training for SOME staff

• not provide specific end of life care training• Don’t know

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QuestionQuestion Type Responses

7 [for those answering “Yes” to q.3] What type of training providers do you currently use to provide end of life care training for your staff?

Multiple choice

• Trainers attached to a Hospice• Private sector training providers• Universities or Colleges• Independent trainers• In-house trainers• Some other type of trainer• Distance learning materials• Online learning• Some other type of trainer or training material• Don’t know

8 [for those answering “Yes” to q.3] And generally, how satisfied would you say you are with the quality of training offered by these providers?

Single choice

• Very satisfied• Satisfied• Neither satisfied nor unsatisfied• Very unsatisfied• Don’t know

10 [for those answering “Yes” to q.3] What changes - if any -would you like to see to the way in which end of life training is designed or delivered?

Free text • Free text commentary

11 [for those answering “No” to q.3] If a specific end of life care need arose in you organisation, which of these statements would best summarise your approach to providing training for staff in dealing with that need? Would you...

• ... provide specific end of life care training for ALL care staff

• provide specific end of life care training for SOME care staff

• provide specific end of life care training for ALL staff

• provide specific end of life care training for SOME staff

• not provide specific end of life care training• Don’t know

QuestionQuestion Type Responses

12 [for all respondents] I’m going to read out a number of topics that might be covered in end of life care training. After each topic could you tell me on a scale from one two ten, where ten is “very important” and one is “not important at all”how important you think that topic is in end of life care training.

Multiple rating scale

• Understanding how your own personal and work experiences will affect the end of life care you provide

• Understanding how legislation and policy affects individual care workers who provide end of life care

• Understanding how legislation and policy affects organisations who provide end of life care

• Understanding the importance of dignity and respect in end of life care

• Understanding the importance of advocacy in end of life care

• Understanding the importance keeping people safe from injury, abuse and harm

• Understanding how to communicate effectively with people nearing the end of their life

• Understanding how to communicate effectively with the families and friends of people nearing the end of their life

• Understanding how to communicate effectively with colleagues as you care for people nearing the end of their life

• Understanding how different services and organisations should work together to care for people nearing the end of their life

• Understanding how to use assessment tools to assess pain and quality of life when caring for people nearing the end of their life

• Understanding how to review care plans as people’s needs change

• Understanding how to provide end of life care from a person-centered perspective

• Understanding the normal physiological changes that take place as people near the end of their lives

• Understand how to managing the symptom management of people nearing the end of their lives

• Understanding the role of advance care planning in end of life care

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QuestionQuestion Type Responses

13 Do you think that providing end of life care will become a more or less important part of social care over the coming years?

Single choice

• Much more important• A little more important• Neither more or less important • A little less important• Much less important• Don’t know

14 Do you think that providing end of life care will become a more or less important part of the work of your organisation over the coming years?

Single choice

• Much more important• A little more important• Neither more or less important • A little less important• Much less important• Don’t know

15 When it comes to making decisions about training in your organisation, would you say you where...

Single choice

• the sole decision maker• a joint decision maker• an important influencer• a minor influencer• Don’t know

The truncated flow diagram below illustrates skip logic, associates with the

survey questions.

Unwilling to proceedOpen dialogue Reschedule dialogue

Roughly how many of the following types of staff work at

your current location?

How frequently do any of these staff provide care to people

whose end of life is expected within the next three months?

Has your organisation arranged any training for staff on how to

provide end of life care?

Does and of the end of life care training that you provide lead to a specific qualification in end of

life care?

What type of training providers do your currently use to provide end of life care training for your

staff?

And can you tell me specifically, what are the names of the

training providers you currently use

And generally how satisfied would you say you are with the

training offered by these providers?

What changes -if any- would you like to see in the way in which

end of life training is designed or delivered?

Do you think that providing end of life care will become a more

or less important part of the social care over the coming

years?

Do you think that providing end of life care will become a more

or less important part of the work of your organisation over

the coming years?

We may do more research in the future on end of life care and training. Would you like to be

involved in any of that research?

When it comes to making decisions about training in your organisation, would you say you

were...

Close dialogue

Proceed

Call Sheet Reference dialogue

1

2

3

6

7

8

9

10

13

14

15

16

Thinking specifically about the induction training that you

provide for your staff, would you say you...

4If a specific end of life care need

arose in your organisation, which of these statements would best summarise your approach to providing training for staff in

dealing with that need?

11

Now thinking about the training you provide for staff AFTER

induction, would you say you...

5

I'm going to read out a number of topics that might be covered in end of life care training. After each topic could you tell me ... how important you think that

topic is in end of life care training?

12

No / Don't know

Yes

35

Data collection

The Survey Monkey web-based survey tool was used to capture the data from the telephone surveys, with a script for call handlers provided through

the Survey Monkey interface. The images below capture the survey landing page and first pages.

Survey Monkey was selected over other similar (more advance) platforms due to its relative user friendliness and cost effectiveness. It is hoped that the experience of working with the platform will lead some of the sub-

regional care partnerships who are participating in the End of Life survey to use the platform subsequently for their own research and evaluation activities. The telephone survey “went live” on the 8th April 2010.

The following sub-regional care partnerships were involved in the data

collection phase of the exercise:

• Black Country Partnership for Care

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• Staffordshire Social Care Workforce Partnership

• Solihull Workforce in Care Development Agency

• ACT Herefordshire and Worcestershire (in addition to their own quota of

calls, ACT were also responsible for carrying out calls in Shropshire and Telford and Wrekin)

Policyworks Associates Ltd. were responsible for carrying out the data collection across Birmingham, Coventry and Warwickshire.

Response rate

To achieve the 340 positive responses, a total of 658 calls were required. This gives and net positive response rare of 51.7%. It is worth noting, however, that only 13.7% (n=90) of calls resulted in a firm rejection to participate. The remaining 34.7% of calls were “reschedules” where the

respondent asked or agreed to be called back at a later time.

Addendum: Follow-up study

Having completed and analysed the data from the large-scale region-wide survey of social care providers, a small, stratified sample of twelve care

providers was drawn from the list of providers which Policyworks had successfully surveyed across the Birmingham and Coventry and Warwickshire sub-regions in the first round of survey activity. These providers were re-contacted by telephone and asked three question in semi-structured interview format. The interview questions where as

follows;1) Specifically, what end of life care training do you provide for your staff?2) Do you provide this training for all staff at the same level, and3) How do you decided when and what end of life care training to offer?4) Are there any other issues that you consider, or think others should

consider when they plan or provide end of life care training.

The question were posed in a discursive style, with no pre-coded responses. Interviews were not recorded or fully transcribed, but extensive real-time notes with verbatim comments were made.

The sample of twelve care providers was constructed to yield five responses from high end-of-life-care familiarity providers and five responses from low end-of-life-care familiarity providers. A total of seventeen calls to potential were required to deliver the target response.

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Appendix two: Individual responses to Q.10

Question 10 of the telephone survey asked respondents what changes, if any, they would like to see to end of life care training in the West Midlands. The 99 individual responses obtained and recorded by call handlers are reproduced here.

1. more hands on training

2. more case examples when gping through the training

3. More experience trainers that can bring a wide range fr examples of good

and bad practice.

4. Not enough interaction, expand it somehow

5. Go to a hospice day centre to see how care is provided in other places, how they manage their homes to see if we could improve our services

6. More visual training rather than the trainer just talking about it

7. Sometimes releasing people is an issue. Distance can an issue.

8. Training at a lower cost.

9. More free training courses available for small homes, percentage of courses availabe for small homes

10. More free training

11. More free training

12.

13. More accessible

14. It is difficult to access

15. More readily available

16. Should be more accessible

17. Accessibility and distance learning not appropriate

18. Needs to be widely avaiiable and tailored to each home

19. More accessibility for general care staff

20. More availability

21. LIKE IT TO A STANDARD ACROSS SOLIHULL AND MUCH MORE

ACCESSIBLE

22. MORE ACCESSABLE FOR EVERYONE

23. more provision and delivered to all

24. More accessible and no charges, lower charges

25. Increase numbers that can do the course

26. Made more accessible

27. Like to see more training for all care staff not just senior level and in Dememtia care.

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28. Needs to be more training at induction.

29. More if possible, otherwise no difference

30. More of it please!

31. More courses to be run.

32. would like to see more training being provided

33. More of it

34. More of it

35. Need more end of life training not much to go round

36. More often

37. Would like more training!

38. Need more! Do not deal with enough...

39. More updated training .

40. Having knowledge is never enough, would welcome more, had some

volunteers

41. Need more training

42. more training for careres available

43. More training, hear from other trainers out there

44. speeder return of assessments

45. Make sure they have sufficient marker for the qualification

46. More local. Releasing people issue. More 'care' based.

47. Bit of travelling. Would prefer in house.

48. Needs more of a gentle approach

49. More sensitive and a bit gentler

50. No changes

51. No changes

52. Most changes are already in progress involving dignity, comfort and respect

53. Working well at the moment

54. No changes

55. No change

56. Quite happy with the mode we have in place

57. None

58. none, always been satisfied

59. No

60. N/A

61. No

62. designed by our training department (head office)

63. No

64. no changes - distance learning course

65. Very happy with it.

66. None

67. None

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68. No change

69. none

70. no changes with hospice but thinks would be good if the county provided

subside training

71. they do train the trainers

72. If needed, would change provider

73. currently have adequate training provision

74. Statisfied with current arrangments

75. None

76. The whole training package is being changed at the moment

77. Always changes as nobody is the same

78. Not sure yet

79. in the process

80. Certificated annual progress

81. Distance learning

82. Think this should be added onto the NVQ.

83. More fuding availiable to access more training or more access in local colleges etc. Currently the training offered in colleges are not short

courses they are too long to send a permanent member of staff.

84. need more support

85. End of life home, needs to be consistent across the board

86. like more councelling to care staff offered

87. You have to shop around as some of the training in private sector is rubbish

88. Sometimes the training doesn't take account of issues for staff who have

never seen a death - would like links to local funeral directors.

89. Better in house.

90. Important that it is recognised by SFC Open up more opportunities for Care Workers - struggle to get Care Workers on NCFE training due to requirement for Literacy & Numeracy first - this put some staff off

completing the training

91. Distance learning don’t always cater for what you need

92. permanent long term training

93. Need more training on Beavement

94. Yes, more related to Dementia Care

95. It would be good to have specific training

96. It would be useful to have some advanced end of life care training for Senior staff.

97. More indepth training and support for care workers

98. More specialist training

99. More in depth training

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Appendix three: Notes

1 Skills for Care & Skills for Health. (2009). Common Core Competences and Principles for End of Life Care. London: Department for Health. Available at: http://www.skillsforcare.org.uk/nmsruntime/saveasdialog.aspx?lID=1659&sID=783

2 National Council for Palliative Care. (s.d.). A Guide to Involving patients, carers and the public in palliative care and end of life care services. London: NCPC. Available at: http://www.ncpc.org.uk/download/publications/InvolvingPatientsCarersAndThePublicInPalliativeCareAndEndOfLifeCareServices.pdf

3 National Audit Office (2008). End of Life Care. London: The Stationery Office. Available at: http://www.nao.org.uk//idoc.ashx?docId=F077F70F-4E5F-44CD-87B2-5640571A5E64&version=-1

4 Christ, G. H. & Sormanti, M. (1999). Advancing social work practice in end-of-life care. Social Work in Health Care. 30(2): 81-99.  .

5 NYS Developmental Disabilities Planning Council. (s.d.). Life Span Planning and End of Life Care Training. Available at: http://www.ddpc.state.ny.us/pages/tracking_portfolio/community_participation/Life_Span_Planning.pdf .

6 National Audit Office (2008). End of Life Care. London: The Stationery Office. Available at: http://www.nao.org.uk//idoc.ashx?docId=F077F70F-4E5F-44CD-87B2-5640571A5E64&version=-1

7 The Scottish Government (2008). Living and Dying Well: A national action plan for palliative and end of life care in Scotland. Edinburgh: Scottish Government. Available at: http://www.scotland.gov.uk/Resource/Doc/239823/0066155.pdf  .

8 Based on a total regional population of 2593 registered social care providers the achieved figure of 340 responses allows for statistical confidence of ±4.96% at the 95% confidence level.

9 Residential care homes are defined by the Care Quality Commission as homes which “people live in either short or long term. They provide accommodation, meals, and personal care (such as help with washing and eating).” For more information see: http://www.cqc.org.uk/registeredservicesdirectory/q2.html

10 Nursing homes are defined by the Care Quality Commission as homes similar to residential care homes but which also have “registered nurses who can provide care for more complex health needs.” For more information see: http://www.cqc.org.uk/registeredservicesdirectory/q2.html

11 Domiciliary care providers - also called “home care agencies” - are defined by the Care Quality Commission as care providers who provide “help to people in their own homes with things like preparing meals, bathing and dressing (also known as personal care). It may also provide support or a break for carers. There are two types of home care agency. The first type simply acts as an employment or introductory agency which places self-employed people into employment with people who need help at home. The other type of agency employs, trains and supervises its own staff. The care could just be for a few hours or could be 24-hour care.” In the research we make no specific distinction between either of these two types of domiciliary care agency. For more information see: http://www.cqc.org.uk/registeredservicesdirectory/q2.html

12 Nursing Agencies are defined by the Care Quality Commission as agencies which “send nurses to visit people at home when they need specialist or medical care, usually after leaving hospital. The frequency of the visits can vary from several times a day to once a week. There are two types of nurses agency. The first type simply acts as an employment or introductory agency which places self-employed nurses into employment with people who need nursing help at home. The other type of agency employs, trains and supervises its own staff.” In the research we make no specific distinction between either of these two types of nursing agency. For more information see: http://www.cqc.org.uk/registeredservicesdirectory/q2.html

13 The geographies correspond to the current geographies of the Skills for Care West Midlands sub-regional employer-led care partnerships.

14 This indicates that, amongst other things, there was minimal selection bias at work on the part of call handlers

41

15 Exploring other potential factors behind the higher familiarity of providing end of life care amongst some provider type, we examined the relationship between the number of people cared for (expressed in terms of registered places) and the number of staff reported. We carried out this analysis because a number of the care providers we spoke to were concerned that their reported higher familiarity with end of life care would be perceived as a consequence of neglect or understaffing within their homes. For those providers who provide care in a residential setting, we identified a proportionate relationship between the familiarity of providing end of life care and the staff to resident ratio. Where providers told us the only experienced end of life care infrequently, very infrequently, or never we observed a staff to resident ratio of 0.87. Where end of life care was frequently or very frequently experienced we observed a staff to resident ratio of 1.19 and where end of life caregiving was very frequent we observed a ratio of 4.17 staff to residents. This would suggest that there is no general relationship between reported higher familiarity with end of life and staff numbers.

16 Other variables tested for significance included ownership type (e.g. private vs. voluntary), establishment size in terms of reported headcount and in terms of registered places, and geography in terms of sub-regional care partnership area. None of these variables were found to account for significant variations in response

17 Quoted averaged are adjusted in each case to account for variable response rates

18 This is likely to be a product of definitional issues around the nature of a “palliative care specialist”. In high-familiarity providers there is likely to be a higher benchmark for what constitutes a “palliative care specialist” than in low-familiarity providers organisations. Illustrative of this, in one case a respondent from an provider reporting low-familiarity commented “[Sylvia] went on a course. I suppose that makes her our palliative care specialist.”

19 Through conversations with the sub-regional care partnerships, we determined that asking for this detailed information through the region-wide survey instrument would impair the survey; causing it to be overly long and (consequently) degrading the quality of responses and the response rate. Also, although our interviewers asked to speak to the person responsible for training, we could not guarantee that individual respondents had sufficient knowledge to answer such specific questions accurately. Given this, we determined that it would be best to avoid such detailed questioning in the region-wide survey study.

20 A small, stratified sample of twelve care providers was drawn from the list of providers which Policyworks had successfully surveyed across the Birmingham and Coventry and Warwickshire sub-regions in the first round of survey activity. These providers were re-contacted by telephone and asked three question in semi-structured interview format. The interview questions where as follows;1) Specifically, what end of life care training do you provide for your staff?2) Do you provide this training for all staff at the same level, and3) How do you decided when and what end of life care training to offer?4) Are there any other issues that you consider, or think others should consider

when they plan or provide end of life care training.

The question were posed in a discursive style, with no pre-coded responses. Interviews were not recorded or fully transcribed, but extensive real-time notes with verbatim comments were made.

The sample of twelve care providers was constructed to yield five responses from high end-of-life-care familiarity providers and five responses from low end-of-life-care familiarity providers. A total of seventeen calls to potential were required to deliver the target response.

21 Skills for Care & Skills for Health. (2009). Common Core Competences and Principles for End of Life Care. London: Department for Health. Available at: http://www.skillsforcare.org.uk/nmsruntime/saveasdialog.aspx?lID=1659&sID=783

22 See http://www.goldstandardsframework.nhs.uk/

23 See http://www.skillsforhealth.org.uk/about-us/news/2010/End-of-life-care.aspx

42

24 von Gunten, C. F., Ferris, F. D., Emanuel, L. L. (2000). Ensuring Competency in End-of-Life Care: Communication and Relational Skills. The Journal of the American Medical Association. 284(23): 3051-3057. Available at: http://jama.ama-assn.org/cgi/content/full/284/23/3051

25 Singer, P. A., Martin, D. K. & Kelner, M. (1999). Quality End-of-Life Care; Patients' Perspectives. The Journal of the American Medical Association. 281(2): 163-168. Available at: http://jama.ama-assn.org/cgi/content/full/281/2/163 

26 Singer, P. A., Martin, D. K. & Kelner, M. (1999). Quality End-of-Life Care; Patients' Perspectives. The Journal of the American Medical Association. 281(2): 163-168. Available at: http://jama.ama-assn.org/cgi/content/full/281/2/163 

27 Available at http://www.cqc.org.uk/guidanceforprofessionals/socialcare/careproviders/statisticsonregisteredproviders.cfm

28 Geographies and typologies are drawn directly from CQC data

29 Random.org uses atmospheric noise to generate random number sequences. For more information see http://www.random.org/randomness/

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