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A Report on the Mapping of Training for Carers
                  (Edited)




Produced for The Princess Royal Trust for Carers, at the request of
                  the Department of Health




                          March 2006




                               by

    Dr. Malcolm Clarke, Headway Consultancy Services Ltd.
             & Stuart Riley, The Research Engine
Contents

                                          Page

Introduction, context and methodology      3

Results of the questionnaire               4

Telephone discussions                      15

Summary                                    17

Appendix A – The questionnaire             18




                                  2
Introduction, context and methodology used

In early March 2006 we were asked by The Princess Royal Trust for Carers to
undertake a ‘mapping’ exercise of the existing provision of ‘training’ for carers. This
work had been requested by the Department of Health in connection with the
Government’s commitment in the health and social care White Paper,
“Our health, our care, our say”, published in January this year, to
“allocate specific funding for the creation of an Expert Carers Programme. Similar
to the EPP (Expert Patients Programme) this will provide training for carers to
develop the skills they need to take greater control over their own health, and the
health of those in their care”.

For the purposes of this exercise, we have taken “training” to mean training in the
knowledge or skills necessary to undertake the caring role in its broad sense and to
maintain the carer’s health to do so. It does not, however, include activities such as
pampering, leisure activities or short breaks, which, although they are very valuable
and appreciated, are not directly related to those knowledge and skills. It is, however,
appreciated that this distinction may not always be completely clear-cut.

The timescale for completing the work, by the beginning of April, was extremely
short which limited the methodological options available. It was not feasible to
undertake a postal questionnaire. However, we had the benefit of access to the email
database of Carers Week which includes about 2500 contacts of organisations and
which should include a very high proportion of organisations involved with the
provision of services to and support for carers.

It was therefore decided to email everyone on that list to ask them to complete an
internet-based questionnaire which we set up on a dedicated web location. The Carers
Week list was supplemented by emails sent to national organisations known to be
active in this field. Completion of the questionnaire took about 5-10 minutes,
depending on how much information respondents had to give.

The objectives of the questionnaire were to identify those organisations who are
currently providing training for carers; the nature of that training, both in terms of its
method of delivery and target group, and the views of the respondents on how best to
provide training for carers in the context of an Expert Carers Programme. The
questionnaire is reproduced in Appendix A.




                                            3
Results of the questionnaire
 Do you provide training for carers?

           Number %
 Yes         176  66
 No           90  34
 Total:      266

 Approximately two-thirds of those who responded do provide training at present.

 Do you provide or commission this with any other organisations?

        Number          %
 Yes      138           80
 No        35           20
 Total:   173

 Four out of five of those who do provide training, do so in collaboration with other
 organisations. Each respondent was asked to indicate the organisations involved in the
 collaboration, including their own. The organisations specified are shown below.

                                                                                     Number   %
Local carers organisation                                                               88    25
Local authority                                                                         84    24
NHS body                                                                                75    21
Local non-statutory charity/organisation(excluding national carers organisations)       59    17
National carers organisation                                                            23     7
National non-statutory charity/organisation(excluding national carers organisations)    22     6
Total number of respondents:                                                           138

 The numbers relate to the 138 organisations that provide training in collaboration
 with others. The %s shown are the proportions of all 'collaborations' mentioned which
 come into each category It will be seen that Local Authorities, the NHS and local
 non-statutory organisations are the major partners in such collaborations.

 The types of training undertaken by the 176 organisations are:

 Meetings with a trainer          157
 Written training material        117
 On-line training                  16


 It will be seen that on-line training is still in its relative infancy compared with the
 more traditional types of training. Although 117 organisations also said that they
 provide ‘other types’ of training, an examination of the original returns reveals that
 when asked to specify these, the majority of responses described the subject matter of
 training, rather than a different method of its delivery. However, there were some



                                                4
examples of different types of delivery, or at least, variations on a type. These
included:
Residential weekends or courses
Conferences
One to one work
Whole family work
Group work/workshops

Cost to the carer of training

Very few organisations make a charge to the carers. Specifically, only 5 charge for
meetings with a trainer; 0 for on-line training; only 2 for written material and only 5
for other types of training.

At which carers is training targeted?

                    Number        %
All carers            120         69
Specific groups        53         31
Total:                173

Two-thirds of the training is targeted at all carers, with the other third being targeted
at specific groups, as follows.

                                                                 Number         %
Carers of people with mental illness                               31           28
Carers of people who are old and frail (Including Alzheimer’s)     20           18
Carers of people with physical disability                          11           10
Carers of people with chronic physical illness or disease          11           10
Carers of people with terminal illnesses                           11           10
Carers of people with learning disabilities                        10            9
Carers of people with drug or alcohol problems                      5            5
Other                                                              10            9
Total number of respondents:                                       53

The largest group who are mentioned for targeted training are the carers of people
with a mental illness, followed by carers of people who are old and frail.

When asked if this training could be adapted to other groups of carers, 69% of
respondents (37) said that it could be, with the remainder saying that it couldn’t. The
reasons given for the responses of the latter group were largely due to the content
being specific in relation to the needs of the particular group targeted. The decisions
as to what training can appropriately be provided generically, and what should be
targeted towards specific groups of carers will, of course, be a key issue in the
construction of an Expert Carers Programme.




                                            5
Which areas does training cover?

                                                                                   Number %
Carer's own health                                                                   128  9
Moving and handling                                                                  111  8
Carers' rights                                                                       111  8
Available services and support                                                       110  8
Clinical information about the management of the condition of the cared-for person    93  7
Financial or benefit matters                                                          93  7
Carers assessment rights/policy and legislation affecting carers                      92  7
Alternative, complementary therapies                                                  87  6
Advocacy/assertiveness                                                                86  6
First Aid                                                                             77  5
Legal issues (including power of attorney, legislation affecting carers               67  5
Computer/IT skills                                                                    62  4
Aids/adaptations                                                                      51  4
Home safety (including fire safety)                                                   45  3
Community involvement skills                                                          45  3
Food hygiene, meal planning                                                           43  3
Employment matters                                                                    38  3
Writing/numeracy skills                                                               25  2
Other                                                                                 50  4
Total number of respondents:                                                         172

Each respondent was asked to identify the categories of training with which they are
involved. The %s shown are the proportions of all training identified which come into
each category.

It will be seen that training in a wide range of topics is offered, with Carer’s health,
which as stated above was specifically identified in the White Paper, coming out top
of the list. This is followed by a group of three very close together, namely Moving
and Handling, available services and support, and carers’ rights. The next category is
clinical information about the management of the condition of the cared for person,
which, again, is specifically mentioned in the White Paper. There then follows a range
of other relevant topics.

The ‘other’ category included various answers, some of which could have been
included in the categories given. Among the interesting topics on the list were:

Stress management (arguably an aspect of the carers own health)
How to complain
Person-centred planning




                                           6
Which training has its content and outcomes based on a researched and validated
base?

                                                 Number          % of       Number             % of
                                                  content      training     outcome          training
                                                 validated                  validated
Carers' rights                                       67           60            28             25
Writing/numeracy skills                              14           56            10             40
Moving and handling                                  62           56            29             26
Carers assessment rights/policy and
legislation affecting carers                         50           54            22             24
Legal issues (including power of attorney,
legislation affecting carers                         36           54            16             24
Food hygiene, meal planning                          23           53            17             40
Financial or benefit matters                         49           53            16             17
First Aid                                            39           51            20             26
Employment matters                                   19           50            14             37
Clinical information about the management
of the condition of the cared-for person              46          49            26             28
Community involvement skills                          22          49            15             33
Computer/IT skills                                    30          48            17             27
Carer's own health                                    59          46            29             23
Available services and support                        49          45            24             22
Home safety (including fire safety)                   19          42            10             22
Aids/adaptations                                      21          41             8             16
Alternative, complementary therapies                  33          38            19             22
Advocacy/assertiveness                                28          33            17             20
Other                                                 13          26              7            14
Total:                                               115                        61


The table lists the responses in order of proportion of training which had its content
based on a researched and validated base. There are considerably higher proportions
for the content than the outcomes, and the proportions on the outcome scores in
particular should be treated with some caution due to low absolute numbers. It is
possible that some respondents did not fully understand the question, particularly with
respect to outcomes.

It could be argued that these figures for content which are all in the 30% - 60% range
are lower than might be expected and for some areas it might be expected that any
training delivered should be so based. Thus for example, it is surprising that only 49%
of training on clinical information about the management of the cared-for person is,
apparently, based on a researched and validated base. One might expect that topic to
be very close to the top of the list.

Looking at the relative rankings on the content and outcome scores, categories with a
particularly higher outcome ranking are computer/IT skills; community involvement;
employment; and clinical information. Categories with a higher content ranking are
financial/benefit matters in particular; carers’ rights; and carers’ assessment rights and


                                            7
legal issues. It can be seen that the outcomes of these may be more difficult to assess,
and the first has a confidentiality element.

Respondents were asked to give details of the research or validation on which their
training is based. In most cases the responses referred to the fact that the training is
provided by professionals within the relevant area of expertise who have the
appropriate qualifications to do so.

Is the training evaluated by the participating carers themselves?

161 of the 170 respondents, who answered this question, did so in the affirmative.

Are carers involved in the planning of the training?

           Number          %
Yes          131           79
No            35           21
Total:       166

The large majority of organisations do involve carers in the planning of the training,
although the proportion is perhaps no more than one would expect.

The questionnaire then moved on to ask for respondents views on a possible Expert
Carers Programme.

If an Expert Carers Programme is implemented what do you think should be in the
core training programme?

This was an ‘open ended’ question. Many of the responses identified many of the
areas which are listed in Question 31, and a significant number said that these are the
key areas. We undertook an analysis of the responses using a linguistic analysis
programme which identifies words which occur with particular frequency beyond that
of normal English usage. This revealed the following possible training areas as
appearing with particular frequency:-




                                           8
Training aimed at supporting the carer in their caring role

Moving and handling
Carer’s rights
Coping with stress/coping strategies
Services for carers
Information for carers
Communication skills
Looking after yourself
Advocacy

Training aimed at improving caring skills

First Aid
Medication

In addition, there were four particular concepts which had not been fully covered in
the questionnaire which merit a mention:-

   1. The desirability of asking the carers themselves what types of training they
      think should be included;
   2. Dealing with the changed relationship with the cared-for person;
   3. The concept of the carer exercising choice about the amount of caring which is
      undertaken, and how that might be enabled and dealt with.; and
   4. Drawing from the Expert Patients Programme the concept of carers
      themselves doing the training, and being trained as trainers.

What additional areas would be suitable for inclusion in an advanced programme?

Some respondents were unclear as to what was meant here. Did it mean more in-depth
coverage of topics which were included in the core programme, or, alternatively,
additional topics? We actually meant the latter, but the responses have raised a
relevant issue about whether there is scope for two levels of training on particular
topics.

Many respondents repeated many of the areas identified for the core programme. The
linguistic analysis did not throw up any significant new areas appearing very
frequently which had not appeared in the previous analysis. However, there were
some specific ideas which merit a special mention. These are

Training aimed at supporting the carer in their caring role

The effect of caring on other relationships of the carer
Bereavement counselling
Training for life after caring
Influencing local decision-making/influencing public perception/acting as a carers
representative
Starting/running a local carers group




                                            9
Training aimed at improving caring skills

Palliative care

Which key disability and medical condition specific issues would need to be
incorporated?


                                                                  Number        %
People who are old and frail (including Alzheimer’s)                203         14
People with mental illness                                          199         14
People with chronic physical illness or disease                     195         14
People with physical disability                                     192         14
People with terminal illnesses                                      192         14
People with learning disabilities                                   186         13
People with drug or alcohol problems                                168         12
Other                                                                81          6

Total number of respondents:                                       232

Each respondent was asked to identify all the key issues which they would like to see
included. The %s shown are the proportions of all issues identified which come into
each category.

The table shows relatively little variation between the different categories. In other
words, there were all seen as important for inclusion. Such variation as there is may
just reflect the variation in the numbers of organisations of different types responding.
Respondents were asked to specify the ‘other’ category. Most of these were more
specific conditions which come into one of the pre-defined categories. Some
responses identified other issues such as:

The transition to adult services for children with disabilities
Parent carers
Young carers

Would an Expert Carers Programme be suitable for young carers?

A large majority of respondents answered this in the affirmative.

                  Number               %
Yes                194                85
No                  35                15
Total:             229

Respondents were asked to amplify their response to this question. Two different
points of principle were expressed. A small number of respondents expressed the view
that young people should not have to be carers, and that therefore this role should not
be legitimised by ‘training’. Conversely, a larger number felt that young carers are
carers like other carers and should have the same access to support and training.


                                            10
Some respondents felt that whilst an expert carers programme would be suitable for
young carers, their special circumstances and needs are such that it would not be
appropriate to simply provide the same programme to them as is provided for other
carers. They felt that the content of the programme should be adapted for young carers
and, in many cases, that the method of delivery would be different.

What type of training would be most suited to an Expert Carers Programme?

Respondents were asked to score each type of training on the following scale, and a
score was allocated as indicated

Completely suitable – 5; Highly suitable – 4; Suitable – 3; Neutral – 2; Unsuitable – 1

Training:                                             Score:
Meetings or courses with a trainer                     4.15
One-to-one training in the carers own home             3.66
One-to-one training in another place                   3.32
Written material                                       3.15
On-line training                                       2.82

The results in the table shows that the ‘traditional’ type of training with a trainer is
still regarded as the most suitable for carers, even more than training in the carers own
home, with on-line being regarded as the least suitable.

Are certain types of training particularly suitable for specific groups of carers?

         Number       %
Yes        174        72
No          69        28
Total:     243

It will be seen from the table that almost three-quarters of respondents feel that certain
types of training are particularly suitable for specific groups of carers, suggesting that
a ‘one size fits all’ model might not be appropriate.




                                           11
Which types of training are suitable for specific groups?

   This question asked respondents to indicate which of 4 types of training
   (meetings/courses; on-line; written material; one to one) is suitable for the following
   types of carer:

   Carers of people with physical disability
   Carers of people with mental illness
   Young carers
   Carers of people who are old and frail (including Alzheimer’s)
   Carers of people with learning disabilities
   Carers of people with drug or alcohol problems
   Carers of people with terminal illnesses
   Carers of people with chronic physical illness or disease.



                       Number
                     answering   Number                                        %
                                                                   one to                                     one to
                                 meetings              written       one     meetings             written      one
                                 /courses   on-line    material   training   /courses   on-line   material   training

mental illness          424        132           90        90      112         31         21        21         26
young carers            408        131          109        74       94         32         27        18         23
old and frail
(Including
Alzheimer’s)            383        121           64        86      112         32         17        22         29
learning
disabilities            382        133           74        85        90        35         19        22         24
physical
disability              381        114           78        87      102         30         20        23         27
drug or alcohol
problems                380        126           75        83       96         33         20        22         25
terminal illnesses      369         90           65        86      128         24         18        23         35
chronic physical
illness or disease      363        109           71        83      100         30         20        23         28
Total:                 3090        956          626        674     834         31         20        22         27


   It will be seen from the table that, overall, the relative rankings are

   Meetings and courses –                31 %
   One to One -                          27%
   Written material –                    22%
   On-line –                             20 %

   Within the different categories of carer, there is however a different picture.
   Respondents thought that for carers of people with a physical disability, written
   material training would be marginally more suitable. For carers of people with mental
   illness, alcohol/drug problems and chronic illness the position closely mirrors the


                                                      12
overall average. For young carers on-line training was considered more suitable than
average, with written material and one to one less suitable.

 For carers of the old and frail, on-line training was less popular than average. For
carers of people with learning disabilities, meetings and courses were considered
more appropriate and one to one training less so. For those caring for terminal illness,
one to one training was considerably above the average, and meetings/courses
considerably below it.

In considering these figures, it should however be remembered that, although these
relative variations exist, meetings and courses scored the highest in every category,
except for carers of people with a terminal illness.


How should an Expert Carer's programme be publicised?

Respondents were asked to score different methods of publicity, and the following
scores were allocated.

Very effective – 5; Effective – 4; Neutral – 3; Ineffective – 2; Very ineffective - 1

Publicity:                                              Score:

Mailing list of known carers                              4.46
Through other professional (GPs, social workers etc)      4.22
Posters in carers centres                                 3.97
Newspaper/radio advertising                               3.95
Posters in GP surgeries                                   3.84
Posters in public buildings                               3.58
Other                                                     4.01

The table shows that mailing lists to known carers and through other professional
were the two categories which had a mean score above 4.

The ‘others’ contained a range of suggestions. Two related common ones were
through existing carers groups or organisations and by word of mouth. Others
mentioned libraries, supermarkets, religious groups, GP surgeries by other methods
than posters, pharmacies, hospitals, post offices, schools and voluntary organisations.




                                           13
Which organisations are suited to provide carers training?

Respondents marked the suitability of different types of organisation which were
scored as follows
Very suitable – 5; suitable – 4; Slightly suitable – 3; Neutral – 2; Not suitable - 1

Organisation type:                                                             Score:
Local carers organisation                                                       4.67
National carers organisation                                                    4.24
NHS                                                                             3.90
Local non-statutory charity (excluding carers organisations)                    3.85
Local Authority                                                                 3.81
National non-statutory charity (excluding carers organisations)                 3.52

The mean scores obtained (above) show that specialist carers organisations were
considered most suitable, although all the scores are quite high.

Which places would be suitable for an Expert Carer’s programme to be delivered?


                                                                    Number         %

Carers Centres                                                        239          18
Voluntary organisations' premises                                     225          17
Community buildings e.g. village halls, community centres             224          17
Carer's own homes                                                     182          14
Other Health Centres                                                  180          14
GP's surgeries                                                        144          11
Public Authority offices                                               96           7
Other                                                                  39           3
Total number of respondents:                                          251

Each respondent was asked to identify which places they think would be suitable. The
%s shown are the proportions of all places identified which come into each category.

Respondents could tick as many as they thought appropriate. The results show that
Carers Centres or other voluntary organisations or community buildings are
considered the most suitable.

Respondents who ticked ‘other’ identified schools and colleges as the main category
not included in the list. They also identified day centres. A number said that what
matters is the accessibility of the building, not its primary use.




                                            14
Telephone discussions

A small number of telephone discussions were held with selected respondents to
explore particular issues and experiences which emerged from the individual
responses which appeared interesting and relevant. These were not in any sense
representative but do highlight some of the key issues as perceived by those already
working in this area.

Cares Sandwell have used lottery and other funding to undertake adult learning
programmes for carers in three basic categories: leisure learning; developing caring
skills and developing skills and schemes for employment.

This work has been evaluated by the local Learning & Skills Council and we have
been provided with a copy of their comprehensive report. It postulated a possible
model containing the following elements:

Care Learning – in 4 categories: health and medical; legal and benefits; emotional;
advocacy and support.

Basic skills and personal development, including access to IT and access to voluntary
and community activity.

Transitions – Personal reviews of qualifications and experience; brokerage with
learning and training providers; employment options, including transitional support;
community options and advocacy.

Thus, this approach links the skills for caring with other skills and training, and other
options for using those skills.

Middlesborough Council (Adult Services for Learning Disabilities and Mental
Health) think that an ECP programme presents exciting opportunities but raise some
specific issues. They believe that carers should be treated as “already experts”, who
know more about it than the statutory agencies and have often been doing it for the
life of the cared-for person. It will be resented if it appears that this is not recognised.
It should be part of a changed attitude to carers aimed at empowering them –
acknowledging and supporting their expertise.

Training should be geared to the individual situation and suggested the concept of
appraisal and personal development plans for carers, analogous to the approach
adopted for professional staff. A one size fits all model would not be appropriate

Manchester Carers Forum have very recently launched the on-line City and Guilds
Learning for Living Programme, in conjunction with Adult Education and Crossroads.
This is an accredited programme, leading to a qualification, for carers existing skills.
It is aimed at helping carers who want a role outside or after their caring role, which
the Forum sees as important.

Considering the point made by colleagues at Middlesborough, the Forum recognises
that many carers who have been doing it for years are experts but also point out that
many carers are thrown unexpectedly into the role, don’t know what it means and are


                                            15
expected to “hit the ground running”. We wouldn’t expect professional staff to
assume such a role without preparation and training, and shouldn’t do so for carers. In
extreme cases there may even be a safety issue in doing so. In this context it is
important that discharge planning should fully involve carers.

The Forum supports the use of existing carers giving training and using their expertise
in this process.

The Head of Young Carers development at The Princess Royal Trust for Carers
suggests that a programme for young carers might be given a more child friendly
name which does not suggest that young carers might be encouraged to embed
themselves in the caring roles. The emphasis should be on harm minimisation,
reducing the impact of caring roles and moving into independent adulthood.

Most of the core topics which have been identified for adults are also relevant to
young carers including moving & handling, coping with stress, information for carers,
First Aid, communication skills and looking after yourself. However, there are some
differences – approaches to advocacy and carers’ rights should be different for young
carers, services for carers should focus on generic sources of support for children, and
young carers should not be encouraged to develop skills in medication.

The following is also considered particularly relevant for young carers:-

1.     The need for any programme to have a substantial element of fun;
2.     Moving on from caring should be a core topic for young carers;
3.     The desirability of asking young carers themselves about what should be
       included;
5.     Support for accreditation of caring skills e.g through the Youth Achievement
       Award;
6.     The value of peer support; and
7.     Group work can be a very effective delivery method for working with young
       carers.




                                          16
Summary

Despite the speed with which it has been undertaken, the exercise has produced some
valuable and informative results from those who are currently delivering training for
carers and others working with carers.

The different situations of carers should be recognised. Some have been caring for the
whole life of the cared-for person and are already experts. Others may be thrown
unexpectedly into a caring role for which they are unprepared.

Carers themselves should be involved in the decision about the content and delivery
style of any programmes.

It may be helpful to distinguish different types of training e.g training for the caring
role itself and training in other skills, some of which may be useful to help carers
move on from the caring role. There may also be much value in accrediting the skills
which carers have as carers.

“Carers” should not be seen as an homogenous group. There are great differences in
carers’ needs, based on their personal situations, and the longevity and nature of the
caring need. This should affect both the content and delivery style of training
provided. The special circumstances of young carers, in particular, should be
recognised.




                                          17
Appendix A


                        Training Provision for Carers

                                          March, 2006

  For the purposes of this questionnaire, by "training" we mean provision which is aimed at
  improving the skills and/or knowledge of carers, in undertaking their roles as carers and/or in
  managing their own health.
  We do not mean the provision of pampering, leisure activities, respite support and other activities
  which, while being valuable in the support they give to carers, are not designed to improve their
  knowledge and skills.

  The time you spend filling in this questionnaire will be time well-spent in improving the support
  available to carers. Thank you for doing so.


  Q1        Name of responding organisation




  Q2        Address




  Q3        Post Code




  Q4        E-mail address




  Q5        Telephone number




  Q6        Name of the Chief Officer




  Q7        Name of the person to contact about this questionnaire if different from above




  Q8        Does your organisation provide or commission any training for carers to develop their
            skills in and knowledge about their caring role?
                Yes                                         Go to Q9

                No                                          Go to Q35



  Q9        Do you provide or commission this in partnership or collaboration with any other
            organisation ?
                Yes                                         Go to Q10

                No                                          Go to Q11




                                                  18
Q10   Please indicate below the types of organisation involved in this
      partnership/collaboration, including your own

          Local carers organisation
          National carers organisation
          Local authority
          NHS body
          Local non-statutory charity/organisation
          (excluding carers organisation)
          National non-statutory charity/organisation
          (excluding carers organisation)


Q11   Do you offer meetings or courses with a trainer?
          Yes                                           Go to Q12

          No                                            Go to Q14



Q12   Is this training free for the carers?
          Yes                                           Go to Q14

          No                                            Go to Q13



Q13   Please give an indication of the charges you make to the carers




Q14   Do you offer on-line training?
          Yes                                           Go to Q15

          No                                            Go to Q17



Q15   Is this training free for the carers?
          Yes                                           Go to Q17

          No                                            Go to Q16



Q16   Please give an indication of the charges you make to the carers




Q17   Do you offer written training material?
          Yes                                           Go to Q18

          No                                            Go to Q20



Q18   Is it free for the carers?
          Yes                                           Go to Q20

          No                                            Go to Q19



Q19   Please give an indication of the charges you make to the carers




                                                   19
Q20   Do you offer other types of training?
          Yes                                                     Go to Q21

          No                                                      Go to Q24



Q21   What type of training is this?




Q22   Is it free for the carers?
          Yes                                                     Go to Q24

          No                                                      Go to Q23



Q23   Please give an indication of the charges you make to the carers




Q24   Is the training that you offer targeted at all carers or specific groups of carers?
          All carers                                              Go to Q28

          Specific groups                                         Go to Q25



Q25   Which groups is your training targeted towards?
          Carers of people with physical disability
          Carers of people with chronic physical illness or disease
          Carers of people who are old and frail (Including Alzheimers)
          Carers of people with learning disabilities
          Carers of people with mental illness
          Carers of people with drug or alcohol problems
          Carers of people with terminal illnesses
          Other
           Please specify "Other"




Q26   Could the training that you offer be adapted to other groups of carers?
          Yes                                                     Go to Q28

          No                                                      Go to Q27



Q27   Why do you say it couldn't be adapted?




                                                 20
Q28    Which of the following areas does your training cover?
           Moving and handling                               Legal issues (including power of attorney,
                                                             legislation affecting carers
           Clinical information about the management of
           the condition of the cared-for person             Advocacy/assertiveness
           Financial or benefit matters                      Aids/adaptations
           Employment matters                                Home safety (including fire safety)
           Available services and support                    Computer/IT skills
           Carers' rights                                    Writing/numeracy skills
           Carer's own health                                Alternative, complementary therapies
           First Aid                                         Food hygiene, meal planning
           Carers assessment rights/policy and legislation   Community involvement skills
           affecting carers
                                                             Other

Q28a        Please specify "Other"



Q29    In which of the areas you mentioned in Q28 above, has the content of your training been
       based on a researched and validated base?
           Moving and handling                               Legal issues (including power of attorney,
                                                             legislation affecting carers
           Clinical information about the management of
           the condition of the cared-for person             Advocacy/assertiveness
           Financial or benefit matters                      Aids/adaptations
           Employment matters                                Home safety (including fire safety)
           Available services and support                    Computer/IT skills
           Carers' rights                                    Writing/numeracy skills
           Carer's own health                                Alternative, complementary therapies
           First Aid                                         Food hygiene, meal planning
           Carers assessment rights/policy and legislation   Community involvement skills
           affecting carers
                                                             Other

Q29a        Please specify "other"



Q30    Please give details of the research or validation




                                                     21
Q31   In which of the areas you mentioned in Q29 above, have the outcomes of your training
      been based on a researched and validated base?
          Moving and handling                               Legal issues (including power of attorney,
                                                            legislation affecting carers
          Clinical information about the management of
          the condition of the cared-for person             Advocacy/assertiveness
          Financial or benefit matters                      Aids/adaptations
          Employment matters                                Home safety (including fire safety)
          Available services and support                    Computer/IT skills
          Carers' rights                                    Writing/numeracy skills
          Carer's own health                                Alternative, complementary therapies
          First Aid                                         Food hygiene, meal planning
          Carers assessment rights/policy and legislation   Community involvement skills
          affecting carers
                                                            Other
           Please specify "Other"



Q32   Please give details of the research or validation




Q33   Is your training evaluated by the participating carers themselves?
          Yes
          No


Q34   Are carers involved in the planning of the training?
          Yes
          No


Q35   If an Expert Carers Programme is implemented what do you think should be in the core
      training programme?




                                                 22
Q36    What additional areas would be suitable for inclusion in an advanced training
       programme?




Q37    Which key disability and medical condition specific issues would need to be incorporated?
             people with physical disability
             people with chronic physical illness or disease
             people who are old and frail (Including Alzheimers)
             people with learning disabilities
             people with mental illness
             people with drug or alcohol problems
             people with terminal illnesses
             other

Q37a         Please specify "other"



Q38    Do you think an Expert Carers Programme would be suitable for young carers?
             Yes
             No


Q39    Why do you say that?




Q40    What types do you think would be most suitable for an Expert Carers Programme?
                                                 Completely         Highly
                                                  suitable         suitable      Suitable   Neutral   Unsuitable

       meetings or courses with a trainer
       one-to-one training in the carers own
       home
       one-to-one training in another place
       on-line training
       written material


Q41    Do you think that certain training types are particularly suitable for specific groups of
       carers?
             Yes                                                     Go to Q42

             No                                                      Go to Q43




                                                 23
Q42   Which types of training do you think are suitable for specific groups?
      Please tick the relevant boxes
                                                                                                                     one to one
                                                  meetings, courses          on-line          written material        training

      Carers of people with physical disability
      Carers of people with chronic physical
      illness or disease
      Carers of people who are old and frail
      (Including Alzheimers)
      Carers of people with learning
      disabilities
      Carers of people with mental illness
      Carers of people with drug or alcohol
      problems
      Carers of people with terminal illnesses
      Young carers


Q43   How do you think an Expert Carers Programme should be publicised?
      Please use the scales below to indicate, from your experience, the likely effectiveness of
      the listed forms of publicity
                                                      Very                                                                Very
                                                    effective         Effective        Neutral         Ineffective     ineffective

      mailing list of known carers
      posters in carers centres
      posters in GP's surgeries
      posters in public buildings
      through other professionals
      (GPs, social workers etc.)
      newspaper/radio advertising
      other


Q44   Please say what you mean by "other"




Q45   Which organisations are suited to providing carers training?
                                                                                       Slightly
                                                  Very suitable       Suitable         suitable         Neutral       Not suitable

      Local carers organisation
      National carers organisation
      Local authority
      NHS body
      Local non-statutory charity/organisation
      (excluding carers organisation)
      National non-statutory
      charity/organisation (excluding carers
      organisation)




                                                      24
Q46      Which of the following places would be suitable for an Expert Carers Programme be
         delivered? Tick as many as you think appropriate
             Carers Centres
             Voluntary organisations' premises
             Public Authority offices
             Carer's own homes
             GP's surgeries
             Other Health Centres
             Community buildings e.g. village halls, community centres
             Other

Q46a         Please specify "other"




       Thank you very much for completing the questionnaire.
           Your time and effort are greatly appreciated.




                                                 25

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D of h mapping report edited

  • 1. A Report on the Mapping of Training for Carers (Edited) Produced for The Princess Royal Trust for Carers, at the request of the Department of Health March 2006 by Dr. Malcolm Clarke, Headway Consultancy Services Ltd. & Stuart Riley, The Research Engine
  • 2. Contents Page Introduction, context and methodology 3 Results of the questionnaire 4 Telephone discussions 15 Summary 17 Appendix A – The questionnaire 18 2
  • 3. Introduction, context and methodology used In early March 2006 we were asked by The Princess Royal Trust for Carers to undertake a ‘mapping’ exercise of the existing provision of ‘training’ for carers. This work had been requested by the Department of Health in connection with the Government’s commitment in the health and social care White Paper, “Our health, our care, our say”, published in January this year, to “allocate specific funding for the creation of an Expert Carers Programme. Similar to the EPP (Expert Patients Programme) this will provide training for carers to develop the skills they need to take greater control over their own health, and the health of those in their care”. For the purposes of this exercise, we have taken “training” to mean training in the knowledge or skills necessary to undertake the caring role in its broad sense and to maintain the carer’s health to do so. It does not, however, include activities such as pampering, leisure activities or short breaks, which, although they are very valuable and appreciated, are not directly related to those knowledge and skills. It is, however, appreciated that this distinction may not always be completely clear-cut. The timescale for completing the work, by the beginning of April, was extremely short which limited the methodological options available. It was not feasible to undertake a postal questionnaire. However, we had the benefit of access to the email database of Carers Week which includes about 2500 contacts of organisations and which should include a very high proportion of organisations involved with the provision of services to and support for carers. It was therefore decided to email everyone on that list to ask them to complete an internet-based questionnaire which we set up on a dedicated web location. The Carers Week list was supplemented by emails sent to national organisations known to be active in this field. Completion of the questionnaire took about 5-10 minutes, depending on how much information respondents had to give. The objectives of the questionnaire were to identify those organisations who are currently providing training for carers; the nature of that training, both in terms of its method of delivery and target group, and the views of the respondents on how best to provide training for carers in the context of an Expert Carers Programme. The questionnaire is reproduced in Appendix A. 3
  • 4. Results of the questionnaire Do you provide training for carers? Number % Yes 176 66 No 90 34 Total: 266 Approximately two-thirds of those who responded do provide training at present. Do you provide or commission this with any other organisations? Number % Yes 138 80 No 35 20 Total: 173 Four out of five of those who do provide training, do so in collaboration with other organisations. Each respondent was asked to indicate the organisations involved in the collaboration, including their own. The organisations specified are shown below. Number % Local carers organisation 88 25 Local authority 84 24 NHS body 75 21 Local non-statutory charity/organisation(excluding national carers organisations) 59 17 National carers organisation 23 7 National non-statutory charity/organisation(excluding national carers organisations) 22 6 Total number of respondents: 138 The numbers relate to the 138 organisations that provide training in collaboration with others. The %s shown are the proportions of all 'collaborations' mentioned which come into each category It will be seen that Local Authorities, the NHS and local non-statutory organisations are the major partners in such collaborations. The types of training undertaken by the 176 organisations are: Meetings with a trainer 157 Written training material 117 On-line training 16 It will be seen that on-line training is still in its relative infancy compared with the more traditional types of training. Although 117 organisations also said that they provide ‘other types’ of training, an examination of the original returns reveals that when asked to specify these, the majority of responses described the subject matter of training, rather than a different method of its delivery. However, there were some 4
  • 5. examples of different types of delivery, or at least, variations on a type. These included: Residential weekends or courses Conferences One to one work Whole family work Group work/workshops Cost to the carer of training Very few organisations make a charge to the carers. Specifically, only 5 charge for meetings with a trainer; 0 for on-line training; only 2 for written material and only 5 for other types of training. At which carers is training targeted? Number % All carers 120 69 Specific groups 53 31 Total: 173 Two-thirds of the training is targeted at all carers, with the other third being targeted at specific groups, as follows. Number % Carers of people with mental illness 31 28 Carers of people who are old and frail (Including Alzheimer’s) 20 18 Carers of people with physical disability 11 10 Carers of people with chronic physical illness or disease 11 10 Carers of people with terminal illnesses 11 10 Carers of people with learning disabilities 10 9 Carers of people with drug or alcohol problems 5 5 Other 10 9 Total number of respondents: 53 The largest group who are mentioned for targeted training are the carers of people with a mental illness, followed by carers of people who are old and frail. When asked if this training could be adapted to other groups of carers, 69% of respondents (37) said that it could be, with the remainder saying that it couldn’t. The reasons given for the responses of the latter group were largely due to the content being specific in relation to the needs of the particular group targeted. The decisions as to what training can appropriately be provided generically, and what should be targeted towards specific groups of carers will, of course, be a key issue in the construction of an Expert Carers Programme. 5
  • 6. Which areas does training cover? Number % Carer's own health 128 9 Moving and handling 111 8 Carers' rights 111 8 Available services and support 110 8 Clinical information about the management of the condition of the cared-for person 93 7 Financial or benefit matters 93 7 Carers assessment rights/policy and legislation affecting carers 92 7 Alternative, complementary therapies 87 6 Advocacy/assertiveness 86 6 First Aid 77 5 Legal issues (including power of attorney, legislation affecting carers 67 5 Computer/IT skills 62 4 Aids/adaptations 51 4 Home safety (including fire safety) 45 3 Community involvement skills 45 3 Food hygiene, meal planning 43 3 Employment matters 38 3 Writing/numeracy skills 25 2 Other 50 4 Total number of respondents: 172 Each respondent was asked to identify the categories of training with which they are involved. The %s shown are the proportions of all training identified which come into each category. It will be seen that training in a wide range of topics is offered, with Carer’s health, which as stated above was specifically identified in the White Paper, coming out top of the list. This is followed by a group of three very close together, namely Moving and Handling, available services and support, and carers’ rights. The next category is clinical information about the management of the condition of the cared for person, which, again, is specifically mentioned in the White Paper. There then follows a range of other relevant topics. The ‘other’ category included various answers, some of which could have been included in the categories given. Among the interesting topics on the list were: Stress management (arguably an aspect of the carers own health) How to complain Person-centred planning 6
  • 7. Which training has its content and outcomes based on a researched and validated base? Number % of Number % of content training outcome training validated validated Carers' rights 67 60 28 25 Writing/numeracy skills 14 56 10 40 Moving and handling 62 56 29 26 Carers assessment rights/policy and legislation affecting carers 50 54 22 24 Legal issues (including power of attorney, legislation affecting carers 36 54 16 24 Food hygiene, meal planning 23 53 17 40 Financial or benefit matters 49 53 16 17 First Aid 39 51 20 26 Employment matters 19 50 14 37 Clinical information about the management of the condition of the cared-for person 46 49 26 28 Community involvement skills 22 49 15 33 Computer/IT skills 30 48 17 27 Carer's own health 59 46 29 23 Available services and support 49 45 24 22 Home safety (including fire safety) 19 42 10 22 Aids/adaptations 21 41 8 16 Alternative, complementary therapies 33 38 19 22 Advocacy/assertiveness 28 33 17 20 Other 13 26 7 14 Total: 115 61 The table lists the responses in order of proportion of training which had its content based on a researched and validated base. There are considerably higher proportions for the content than the outcomes, and the proportions on the outcome scores in particular should be treated with some caution due to low absolute numbers. It is possible that some respondents did not fully understand the question, particularly with respect to outcomes. It could be argued that these figures for content which are all in the 30% - 60% range are lower than might be expected and for some areas it might be expected that any training delivered should be so based. Thus for example, it is surprising that only 49% of training on clinical information about the management of the cared-for person is, apparently, based on a researched and validated base. One might expect that topic to be very close to the top of the list. Looking at the relative rankings on the content and outcome scores, categories with a particularly higher outcome ranking are computer/IT skills; community involvement; employment; and clinical information. Categories with a higher content ranking are financial/benefit matters in particular; carers’ rights; and carers’ assessment rights and 7
  • 8. legal issues. It can be seen that the outcomes of these may be more difficult to assess, and the first has a confidentiality element. Respondents were asked to give details of the research or validation on which their training is based. In most cases the responses referred to the fact that the training is provided by professionals within the relevant area of expertise who have the appropriate qualifications to do so. Is the training evaluated by the participating carers themselves? 161 of the 170 respondents, who answered this question, did so in the affirmative. Are carers involved in the planning of the training? Number % Yes 131 79 No 35 21 Total: 166 The large majority of organisations do involve carers in the planning of the training, although the proportion is perhaps no more than one would expect. The questionnaire then moved on to ask for respondents views on a possible Expert Carers Programme. If an Expert Carers Programme is implemented what do you think should be in the core training programme? This was an ‘open ended’ question. Many of the responses identified many of the areas which are listed in Question 31, and a significant number said that these are the key areas. We undertook an analysis of the responses using a linguistic analysis programme which identifies words which occur with particular frequency beyond that of normal English usage. This revealed the following possible training areas as appearing with particular frequency:- 8
  • 9. Training aimed at supporting the carer in their caring role Moving and handling Carer’s rights Coping with stress/coping strategies Services for carers Information for carers Communication skills Looking after yourself Advocacy Training aimed at improving caring skills First Aid Medication In addition, there were four particular concepts which had not been fully covered in the questionnaire which merit a mention:- 1. The desirability of asking the carers themselves what types of training they think should be included; 2. Dealing with the changed relationship with the cared-for person; 3. The concept of the carer exercising choice about the amount of caring which is undertaken, and how that might be enabled and dealt with.; and 4. Drawing from the Expert Patients Programme the concept of carers themselves doing the training, and being trained as trainers. What additional areas would be suitable for inclusion in an advanced programme? Some respondents were unclear as to what was meant here. Did it mean more in-depth coverage of topics which were included in the core programme, or, alternatively, additional topics? We actually meant the latter, but the responses have raised a relevant issue about whether there is scope for two levels of training on particular topics. Many respondents repeated many of the areas identified for the core programme. The linguistic analysis did not throw up any significant new areas appearing very frequently which had not appeared in the previous analysis. However, there were some specific ideas which merit a special mention. These are Training aimed at supporting the carer in their caring role The effect of caring on other relationships of the carer Bereavement counselling Training for life after caring Influencing local decision-making/influencing public perception/acting as a carers representative Starting/running a local carers group 9
  • 10. Training aimed at improving caring skills Palliative care Which key disability and medical condition specific issues would need to be incorporated? Number % People who are old and frail (including Alzheimer’s) 203 14 People with mental illness 199 14 People with chronic physical illness or disease 195 14 People with physical disability 192 14 People with terminal illnesses 192 14 People with learning disabilities 186 13 People with drug or alcohol problems 168 12 Other 81 6 Total number of respondents: 232 Each respondent was asked to identify all the key issues which they would like to see included. The %s shown are the proportions of all issues identified which come into each category. The table shows relatively little variation between the different categories. In other words, there were all seen as important for inclusion. Such variation as there is may just reflect the variation in the numbers of organisations of different types responding. Respondents were asked to specify the ‘other’ category. Most of these were more specific conditions which come into one of the pre-defined categories. Some responses identified other issues such as: The transition to adult services for children with disabilities Parent carers Young carers Would an Expert Carers Programme be suitable for young carers? A large majority of respondents answered this in the affirmative. Number % Yes 194 85 No 35 15 Total: 229 Respondents were asked to amplify their response to this question. Two different points of principle were expressed. A small number of respondents expressed the view that young people should not have to be carers, and that therefore this role should not be legitimised by ‘training’. Conversely, a larger number felt that young carers are carers like other carers and should have the same access to support and training. 10
  • 11. Some respondents felt that whilst an expert carers programme would be suitable for young carers, their special circumstances and needs are such that it would not be appropriate to simply provide the same programme to them as is provided for other carers. They felt that the content of the programme should be adapted for young carers and, in many cases, that the method of delivery would be different. What type of training would be most suited to an Expert Carers Programme? Respondents were asked to score each type of training on the following scale, and a score was allocated as indicated Completely suitable – 5; Highly suitable – 4; Suitable – 3; Neutral – 2; Unsuitable – 1 Training: Score: Meetings or courses with a trainer 4.15 One-to-one training in the carers own home 3.66 One-to-one training in another place 3.32 Written material 3.15 On-line training 2.82 The results in the table shows that the ‘traditional’ type of training with a trainer is still regarded as the most suitable for carers, even more than training in the carers own home, with on-line being regarded as the least suitable. Are certain types of training particularly suitable for specific groups of carers? Number % Yes 174 72 No 69 28 Total: 243 It will be seen from the table that almost three-quarters of respondents feel that certain types of training are particularly suitable for specific groups of carers, suggesting that a ‘one size fits all’ model might not be appropriate. 11
  • 12. Which types of training are suitable for specific groups? This question asked respondents to indicate which of 4 types of training (meetings/courses; on-line; written material; one to one) is suitable for the following types of carer: Carers of people with physical disability Carers of people with mental illness Young carers Carers of people who are old and frail (including Alzheimer’s) Carers of people with learning disabilities Carers of people with drug or alcohol problems Carers of people with terminal illnesses Carers of people with chronic physical illness or disease. Number answering Number % one to one to meetings written one meetings written one /courses on-line material training /courses on-line material training mental illness 424 132 90 90 112 31 21 21 26 young carers 408 131 109 74 94 32 27 18 23 old and frail (Including Alzheimer’s) 383 121 64 86 112 32 17 22 29 learning disabilities 382 133 74 85 90 35 19 22 24 physical disability 381 114 78 87 102 30 20 23 27 drug or alcohol problems 380 126 75 83 96 33 20 22 25 terminal illnesses 369 90 65 86 128 24 18 23 35 chronic physical illness or disease 363 109 71 83 100 30 20 23 28 Total: 3090 956 626 674 834 31 20 22 27 It will be seen from the table that, overall, the relative rankings are Meetings and courses – 31 % One to One - 27% Written material – 22% On-line – 20 % Within the different categories of carer, there is however a different picture. Respondents thought that for carers of people with a physical disability, written material training would be marginally more suitable. For carers of people with mental illness, alcohol/drug problems and chronic illness the position closely mirrors the 12
  • 13. overall average. For young carers on-line training was considered more suitable than average, with written material and one to one less suitable. For carers of the old and frail, on-line training was less popular than average. For carers of people with learning disabilities, meetings and courses were considered more appropriate and one to one training less so. For those caring for terminal illness, one to one training was considerably above the average, and meetings/courses considerably below it. In considering these figures, it should however be remembered that, although these relative variations exist, meetings and courses scored the highest in every category, except for carers of people with a terminal illness. How should an Expert Carer's programme be publicised? Respondents were asked to score different methods of publicity, and the following scores were allocated. Very effective – 5; Effective – 4; Neutral – 3; Ineffective – 2; Very ineffective - 1 Publicity: Score: Mailing list of known carers 4.46 Through other professional (GPs, social workers etc) 4.22 Posters in carers centres 3.97 Newspaper/radio advertising 3.95 Posters in GP surgeries 3.84 Posters in public buildings 3.58 Other 4.01 The table shows that mailing lists to known carers and through other professional were the two categories which had a mean score above 4. The ‘others’ contained a range of suggestions. Two related common ones were through existing carers groups or organisations and by word of mouth. Others mentioned libraries, supermarkets, religious groups, GP surgeries by other methods than posters, pharmacies, hospitals, post offices, schools and voluntary organisations. 13
  • 14. Which organisations are suited to provide carers training? Respondents marked the suitability of different types of organisation which were scored as follows Very suitable – 5; suitable – 4; Slightly suitable – 3; Neutral – 2; Not suitable - 1 Organisation type: Score: Local carers organisation 4.67 National carers organisation 4.24 NHS 3.90 Local non-statutory charity (excluding carers organisations) 3.85 Local Authority 3.81 National non-statutory charity (excluding carers organisations) 3.52 The mean scores obtained (above) show that specialist carers organisations were considered most suitable, although all the scores are quite high. Which places would be suitable for an Expert Carer’s programme to be delivered? Number % Carers Centres 239 18 Voluntary organisations' premises 225 17 Community buildings e.g. village halls, community centres 224 17 Carer's own homes 182 14 Other Health Centres 180 14 GP's surgeries 144 11 Public Authority offices 96 7 Other 39 3 Total number of respondents: 251 Each respondent was asked to identify which places they think would be suitable. The %s shown are the proportions of all places identified which come into each category. Respondents could tick as many as they thought appropriate. The results show that Carers Centres or other voluntary organisations or community buildings are considered the most suitable. Respondents who ticked ‘other’ identified schools and colleges as the main category not included in the list. They also identified day centres. A number said that what matters is the accessibility of the building, not its primary use. 14
  • 15. Telephone discussions A small number of telephone discussions were held with selected respondents to explore particular issues and experiences which emerged from the individual responses which appeared interesting and relevant. These were not in any sense representative but do highlight some of the key issues as perceived by those already working in this area. Cares Sandwell have used lottery and other funding to undertake adult learning programmes for carers in three basic categories: leisure learning; developing caring skills and developing skills and schemes for employment. This work has been evaluated by the local Learning & Skills Council and we have been provided with a copy of their comprehensive report. It postulated a possible model containing the following elements: Care Learning – in 4 categories: health and medical; legal and benefits; emotional; advocacy and support. Basic skills and personal development, including access to IT and access to voluntary and community activity. Transitions – Personal reviews of qualifications and experience; brokerage with learning and training providers; employment options, including transitional support; community options and advocacy. Thus, this approach links the skills for caring with other skills and training, and other options for using those skills. Middlesborough Council (Adult Services for Learning Disabilities and Mental Health) think that an ECP programme presents exciting opportunities but raise some specific issues. They believe that carers should be treated as “already experts”, who know more about it than the statutory agencies and have often been doing it for the life of the cared-for person. It will be resented if it appears that this is not recognised. It should be part of a changed attitude to carers aimed at empowering them – acknowledging and supporting their expertise. Training should be geared to the individual situation and suggested the concept of appraisal and personal development plans for carers, analogous to the approach adopted for professional staff. A one size fits all model would not be appropriate Manchester Carers Forum have very recently launched the on-line City and Guilds Learning for Living Programme, in conjunction with Adult Education and Crossroads. This is an accredited programme, leading to a qualification, for carers existing skills. It is aimed at helping carers who want a role outside or after their caring role, which the Forum sees as important. Considering the point made by colleagues at Middlesborough, the Forum recognises that many carers who have been doing it for years are experts but also point out that many carers are thrown unexpectedly into the role, don’t know what it means and are 15
  • 16. expected to “hit the ground running”. We wouldn’t expect professional staff to assume such a role without preparation and training, and shouldn’t do so for carers. In extreme cases there may even be a safety issue in doing so. In this context it is important that discharge planning should fully involve carers. The Forum supports the use of existing carers giving training and using their expertise in this process. The Head of Young Carers development at The Princess Royal Trust for Carers suggests that a programme for young carers might be given a more child friendly name which does not suggest that young carers might be encouraged to embed themselves in the caring roles. The emphasis should be on harm minimisation, reducing the impact of caring roles and moving into independent adulthood. Most of the core topics which have been identified for adults are also relevant to young carers including moving & handling, coping with stress, information for carers, First Aid, communication skills and looking after yourself. However, there are some differences – approaches to advocacy and carers’ rights should be different for young carers, services for carers should focus on generic sources of support for children, and young carers should not be encouraged to develop skills in medication. The following is also considered particularly relevant for young carers:- 1. The need for any programme to have a substantial element of fun; 2. Moving on from caring should be a core topic for young carers; 3. The desirability of asking young carers themselves about what should be included; 5. Support for accreditation of caring skills e.g through the Youth Achievement Award; 6. The value of peer support; and 7. Group work can be a very effective delivery method for working with young carers. 16
  • 17. Summary Despite the speed with which it has been undertaken, the exercise has produced some valuable and informative results from those who are currently delivering training for carers and others working with carers. The different situations of carers should be recognised. Some have been caring for the whole life of the cared-for person and are already experts. Others may be thrown unexpectedly into a caring role for which they are unprepared. Carers themselves should be involved in the decision about the content and delivery style of any programmes. It may be helpful to distinguish different types of training e.g training for the caring role itself and training in other skills, some of which may be useful to help carers move on from the caring role. There may also be much value in accrediting the skills which carers have as carers. “Carers” should not be seen as an homogenous group. There are great differences in carers’ needs, based on their personal situations, and the longevity and nature of the caring need. This should affect both the content and delivery style of training provided. The special circumstances of young carers, in particular, should be recognised. 17
  • 18. Appendix A Training Provision for Carers March, 2006 For the purposes of this questionnaire, by "training" we mean provision which is aimed at improving the skills and/or knowledge of carers, in undertaking their roles as carers and/or in managing their own health. We do not mean the provision of pampering, leisure activities, respite support and other activities which, while being valuable in the support they give to carers, are not designed to improve their knowledge and skills. The time you spend filling in this questionnaire will be time well-spent in improving the support available to carers. Thank you for doing so. Q1 Name of responding organisation Q2 Address Q3 Post Code Q4 E-mail address Q5 Telephone number Q6 Name of the Chief Officer Q7 Name of the person to contact about this questionnaire if different from above Q8 Does your organisation provide or commission any training for carers to develop their skills in and knowledge about their caring role? Yes Go to Q9 No Go to Q35 Q9 Do you provide or commission this in partnership or collaboration with any other organisation ? Yes Go to Q10 No Go to Q11 18
  • 19. Q10 Please indicate below the types of organisation involved in this partnership/collaboration, including your own Local carers organisation National carers organisation Local authority NHS body Local non-statutory charity/organisation (excluding carers organisation) National non-statutory charity/organisation (excluding carers organisation) Q11 Do you offer meetings or courses with a trainer? Yes Go to Q12 No Go to Q14 Q12 Is this training free for the carers? Yes Go to Q14 No Go to Q13 Q13 Please give an indication of the charges you make to the carers Q14 Do you offer on-line training? Yes Go to Q15 No Go to Q17 Q15 Is this training free for the carers? Yes Go to Q17 No Go to Q16 Q16 Please give an indication of the charges you make to the carers Q17 Do you offer written training material? Yes Go to Q18 No Go to Q20 Q18 Is it free for the carers? Yes Go to Q20 No Go to Q19 Q19 Please give an indication of the charges you make to the carers 19
  • 20. Q20 Do you offer other types of training? Yes Go to Q21 No Go to Q24 Q21 What type of training is this? Q22 Is it free for the carers? Yes Go to Q24 No Go to Q23 Q23 Please give an indication of the charges you make to the carers Q24 Is the training that you offer targeted at all carers or specific groups of carers? All carers Go to Q28 Specific groups Go to Q25 Q25 Which groups is your training targeted towards? Carers of people with physical disability Carers of people with chronic physical illness or disease Carers of people who are old and frail (Including Alzheimers) Carers of people with learning disabilities Carers of people with mental illness Carers of people with drug or alcohol problems Carers of people with terminal illnesses Other Please specify "Other" Q26 Could the training that you offer be adapted to other groups of carers? Yes Go to Q28 No Go to Q27 Q27 Why do you say it couldn't be adapted? 20
  • 21. Q28 Which of the following areas does your training cover? Moving and handling Legal issues (including power of attorney, legislation affecting carers Clinical information about the management of the condition of the cared-for person Advocacy/assertiveness Financial or benefit matters Aids/adaptations Employment matters Home safety (including fire safety) Available services and support Computer/IT skills Carers' rights Writing/numeracy skills Carer's own health Alternative, complementary therapies First Aid Food hygiene, meal planning Carers assessment rights/policy and legislation Community involvement skills affecting carers Other Q28a Please specify "Other" Q29 In which of the areas you mentioned in Q28 above, has the content of your training been based on a researched and validated base? Moving and handling Legal issues (including power of attorney, legislation affecting carers Clinical information about the management of the condition of the cared-for person Advocacy/assertiveness Financial or benefit matters Aids/adaptations Employment matters Home safety (including fire safety) Available services and support Computer/IT skills Carers' rights Writing/numeracy skills Carer's own health Alternative, complementary therapies First Aid Food hygiene, meal planning Carers assessment rights/policy and legislation Community involvement skills affecting carers Other Q29a Please specify "other" Q30 Please give details of the research or validation 21
  • 22. Q31 In which of the areas you mentioned in Q29 above, have the outcomes of your training been based on a researched and validated base? Moving and handling Legal issues (including power of attorney, legislation affecting carers Clinical information about the management of the condition of the cared-for person Advocacy/assertiveness Financial or benefit matters Aids/adaptations Employment matters Home safety (including fire safety) Available services and support Computer/IT skills Carers' rights Writing/numeracy skills Carer's own health Alternative, complementary therapies First Aid Food hygiene, meal planning Carers assessment rights/policy and legislation Community involvement skills affecting carers Other Please specify "Other" Q32 Please give details of the research or validation Q33 Is your training evaluated by the participating carers themselves? Yes No Q34 Are carers involved in the planning of the training? Yes No Q35 If an Expert Carers Programme is implemented what do you think should be in the core training programme? 22
  • 23. Q36 What additional areas would be suitable for inclusion in an advanced training programme? Q37 Which key disability and medical condition specific issues would need to be incorporated? people with physical disability people with chronic physical illness or disease people who are old and frail (Including Alzheimers) people with learning disabilities people with mental illness people with drug or alcohol problems people with terminal illnesses other Q37a Please specify "other" Q38 Do you think an Expert Carers Programme would be suitable for young carers? Yes No Q39 Why do you say that? Q40 What types do you think would be most suitable for an Expert Carers Programme? Completely Highly suitable suitable Suitable Neutral Unsuitable meetings or courses with a trainer one-to-one training in the carers own home one-to-one training in another place on-line training written material Q41 Do you think that certain training types are particularly suitable for specific groups of carers? Yes Go to Q42 No Go to Q43 23
  • 24. Q42 Which types of training do you think are suitable for specific groups? Please tick the relevant boxes one to one meetings, courses on-line written material training Carers of people with physical disability Carers of people with chronic physical illness or disease Carers of people who are old and frail (Including Alzheimers) Carers of people with learning disabilities Carers of people with mental illness Carers of people with drug or alcohol problems Carers of people with terminal illnesses Young carers Q43 How do you think an Expert Carers Programme should be publicised? Please use the scales below to indicate, from your experience, the likely effectiveness of the listed forms of publicity Very Very effective Effective Neutral Ineffective ineffective mailing list of known carers posters in carers centres posters in GP's surgeries posters in public buildings through other professionals (GPs, social workers etc.) newspaper/radio advertising other Q44 Please say what you mean by "other" Q45 Which organisations are suited to providing carers training? Slightly Very suitable Suitable suitable Neutral Not suitable Local carers organisation National carers organisation Local authority NHS body Local non-statutory charity/organisation (excluding carers organisation) National non-statutory charity/organisation (excluding carers organisation) 24
  • 25. Q46 Which of the following places would be suitable for an Expert Carers Programme be delivered? Tick as many as you think appropriate Carers Centres Voluntary organisations' premises Public Authority offices Carer's own homes GP's surgeries Other Health Centres Community buildings e.g. village halls, community centres Other Q46a Please specify "other" Thank you very much for completing the questionnaire. Your time and effort are greatly appreciated. 25