Innovative use of Carers Direct Payments: ideas...
Transcript of Innovative use of Carers Direct Payments: ideas...
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Innovative use of Carers Direct Payments: ideas from good practice
Carers Direct Payments are most often monetary payments offered to carers who have
been assessed by their local authority as eligible for social care services. The aim is to
support them in their caring role. Direct Payments enable carers to buy services
themselves to meet their own needs instead of having the local authority arrange
social care services for them. Local authorities currently give Direct Payments at their
discretion – they are not legally obliged to provide services to carers. The
Government’s Care Bill aims to change this and give carers a legal right to services
when they reach the eligibility threshold. Nonetheless, though some local authorities
do not provide Carers Direct Payments, many local authorities have provided a Direct
Payments service to carers since they were introduced with the Carers and Disabled
Children Act 2000. In some localities, Direct Payments may also be provided to
carers using NHS funding or from a pooled health and social care budget, applying
different eligibility criteria.
This report focuses on Carers Direct Payments for people who provide care to an
adult. It aims to guide good practice and provide ideas for commissioners, carer’s
leads and practitioners on facilitating the innovative use of regular and one-off Carers
Direct Payments. By innovative, we mean using Direct Payments not simply to give
carers a break from the person they care for, but to give them something with added
value that makes extra difference to them personally as an individual, e.g. art classes,
driving lessons, or assistance on holiday with the person they care for. The document
draws upon a literature review, interviews and feedback from people involved in
commissioning and delivering Carers Direct Payments, and feedback from carers.
In theory, how innovative can Carers Direct Payments be?
Department of Health (2009) Guidance on Direct Payments: for community care,
services for carers and children’s services states that ‘Direct payments allow carers to
purchase the services they are assessed as needing as carers to support them in their
caring role and to maintain their own health and well-being.’i There are few legal
restrictions on what Carers Direct Payments may be used for: they may not be used
for equipment or services that should be paid for by the Health Service, normal
household bills, or (in most instances) services to meet the needs of the person the
carer looks after. ii
They may not be used to pay for personal care –the Department of
Health (2010) Carers and Personalisation: improving outcomes best practice
guidance, recommends that support for carers in the form of short breaks should be
included in service users’ personal budgets.iii
The 2009 Guidance clearly encourages innovative use of Carers Direct Payments,
giving the following examples of their use: purchasing ‘flexible respite care’ - having
a break from their caring role by using one-off Direct Payments to pay a personal
assistant to come on holiday with them and the person they care for; purchasing a
washing machine so they do not have to go out to the launderette; taking horse riding
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lessons to have a break and get some exercise; improving a path outside of the house
to the road to make it easier for someone in a wheelchair to get into a car to go out; and registering to do a charity trek.
The Department of Health Guidance states: ‘As a first principle, councils should aim
to leave choice in the hands of the individual, allowing people to address their own
needs as they consider best, while satisfying themselves that the agreed outcomes are
being achieved.’iv Councils may set reasonable conditions on the Direct Payments but
are asked in the Guidance to bear in mind that their purpose is to give people more
choice and control. The Guidance also states that councils should avoid setting up
disproportionately intensive monitoring processes.v Hence, in theory at least,
innovative use of Carers Direct Payments – use of Direct Payments for something
other than simply giving the service user and carer time away from one another - is
encouraged.
Are Carers Direct Payments being used innovatively? What benefit does innovative use of Direct Payment bring to carers?
Evidence suggests that giving carers the opportunity for a break can have a positive
impact on mental health: a 2001 study undertake in England found that 17% of carers
who had taken a break of more than a few hours suffered mental ill-health compared
to 36% of carers who did not have such a break since beginning their caring role.vi
There are pressing reasons for reducing carer stress. For example, carer stress is the
reason for admission to nursing or residential care in 38% of cases.vii
Research by the
Princess Royal Trust for Carers indicates that carers need time to carry out everyday
tasks and value short inexpensive holiday breaks to ‘recharge their batteries and
improve mental wellbeing.viii
The National Carers’ Strategy Demonstrator Sites
programme was an 18-month funded programme that started in 2009. As part of this
programme, 12 sites offered ‘breaks’ for carers. Some of the Carers Demonstrator
Sites included provision of short-term respite, sitting services or holidays and the
evaluation of the Sites indicated that breaks supported carers to continue caring and
prevented carer breakdown (and hence emergency admission to hospital or admission
to a care home) in some cases.ix
We can thus assume that using Direct Payments to
fund time away from the person cared-for could make a significant difference to
prevent carer stress and breakdown, but what difference does use of Direct Payments
in other ways make?
There is a great deal of published research on Direct Payments, but little specifically
on Direct Payments for carers of adults. Evidence on use of Carers Direct Payments is
included as part of the evaluation of the National Carers’ Strategy Demonstrator Sites
programme, however the evaluation does not clearly separate those which were given
as Direct Payments and those which are provided as services in its conclusions. There
is also a considerable amount of material published on Personal Budgets, including
many examples of innovative use, but examples tend to focus on Personal Budgets for
service users rather than carers. Hence in addition to undertaking a review of the
literature, we also we invited people who work with Carers Direct Payments to talk to
us about Direct Payments in their area, to discuss the impact of innovative Direct
Payments, the barriers, and what works for them in facilitating innovative use of
Carers Direct Payments. 12 people across eight localities – commissioners, managers
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and practitioners in voluntary sector organisations, local authorities and Clinical
Commissioning Groups (CCGs) - were interviewed. Several more people - carers and
people who work with carers - also reviewed or directly contributed feedback to this
document.
One-off Direct Payments
Carers Direct Payments may be a ‘one off’ payment, regular payments or payment of
a large sum in instalments, depending on the choice of the local authority. According
to a survey undertaken by ADASS, in 2011-12 just under half of the 51,191 carers in
receipt of a personal budget received their budget as a one-off Direct Payment.x Some
local authorities package Carers Direct Payments as ‘grants’. Some split them up with
different labels in order to apply different eligibility criteria or rules around what they
might be used for (e.g. ‘Short Break Grants’, and ‘Direct Payments’ being used for
anything else that may maintain the carers health and wellbeing).
Evidence suggests that many Carers Direct Payments have already been used in
creative ways. In 2010, as a one-off exercise, Hampshire County Council’s Adult
Services Department gave 826 carers a one-off Direct Payment of £200 to support
them in their caring role. Carers could spend the money however they felt would best
support themselves. The exercise was evaluated to find out how carers spent the
money and whether it made a difference to them in their caring role. 470 of the 826
carers choose to take part in the evaluation. The top two things that they spent the
money on were holidays and gardening. Other things that people spent it on included
equipment, leisure activities, utilities, driving lessons, education or a training course,
purchase of computers, car tax and MOT.
Less than 5% of respondents said that the money made no difference in supporting
them in their caring role. Over 95% said it made a difference and 45% said it made a
big difference. Feedback included:
‘The money has made a huge difference – I was able to pay for individual sessions at
the gym and have some ME time’
‘The money gave me the chance to go out for the day with my family and enjoy all the
things other families take for granted.”xi
Since 2004, Dudley Metropolitan Borough Council have been running a Carers Direct
Payment scheme, open to carers who cannot afford a break. In Dudley, Carers Direct
Payments are one-off payments of £300 available to give carers of adults a break’.
This is interpreted very widely - grants can be given for holidays, and short breaks
(with or without the cared for person), leisure activities and hobbies and equipment
for a hobby (including gardening), driving lessons etc. They may be used in
conjunction with support offered to a service user. For example, the Direct Payment
could be used to enable the carer to do something they would enjoy while the person
they care for has respite or sitting provision paid for out of their own budget.
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Dudley evaluated Direct Payments for a sample of their 450 Carers Direct Payment
recipients in November 2011. 47 of the carers who responded used their Direct
Payment for holidays and 22 for short breaks. 7 used them for day trips. Some people
in Dudley who used their Direct Payment to pay for a holiday or break away from the
person they care for found it difficult to get respite or alternative care for the person
they care for. Some experienced difficulty in reassuring the person they cared for that
they would be looked after in their absence. The presence of such barriers points
towards the importance of having flexibility in terms of options for carers to do
something else for rejuvenation if circumstances mean they cannot have a break from
the person they care for. An example from Hampshire illustrates the importance of
thinking outside the box:
“Trust is a major thing. We had a family where the carer didn’t want to leave her son
but she needed a break. They have gone away on holiday as a family. We gave her
money to pay her daughter to look after her brother on the holiday because that is
giving her a break and the reassurance that her son is looked after by a family
member. So they all have a family holiday together but she doesn’t deliver the care.
It’s about encouraging people to think outside the box rather than just putting
someone in residential care for a week.” Officer, Hampshire County Council
Eight of the Carers’ Strategy Demonstrator sites (Bath and NE Somerset, Bristol,
Derby, Lewisham, Liverpool, Nottinghamshire, Suffolk, and Sunderland) provided
one-off payments to help with or cover the cost of a holiday for the carer with or
without the person cared for. Carers and staff noted that funding holidays for both the
carer and person cared for enabled them to spend ‘quality time’ and made an
otherwise unaffordable break possible. Other sites offered breaks that were accessed
by the carer and person being cared for together (such as meals out with the person
cared for or with friends or family, as offered in the Sunderland, Bristol and Suffolk
sites). However, sometimes having ‘a break’ together can mean that carers do not
really get a break or indeed end up with more stress. Bearing this in mind, Cheshire
and Warrington Carers Centre try to build trust in respite services so that carers
became more able to feel that they can leave the person they care for with someone
else and have time away.
Bournemouth West Integrated Community Mental Health Team (CMHT) provide
one-off Direct Payments of approximately £300 to carers of people with severe and
enduring mental illness who are clients of the CMHT. Many carers use them for
breaks away or days out. Other uses have recently included horse riding lessons,
English lessons for a gentleman whose first language was Spanish, mobile phone
credit to enable a carer to maintain contact with the person they care for, and a
dressmaking course. An officer from the CHMT explained that even a one-off Direct
Payment can help prevent carer breakdown:
“One chap was really struggling to cope and we gave him a Direct Payment which
enabled him to go away. The person he cared for had to go to replacement care to
allow that to happen. I don’t think he would have been able to continue to provide the
support he was giving without having that break. Everybody has limits of what they
can deal with.” Officer, Bournemouth West Integrated CMHT
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Most carers who obtain Carers Direct Payments from Bournemouth Borough Council
also spend them on a holiday or short break. However, for some carers, having time
away with or without the person they care for is not an option because of frailty or
mental illness, and there may be a preference for very different things to enhance
wellbeing.
“We have a case at the moment where the carer wanted to get a laptop. She has been
having difficulty getting out to go shopping so she will use the laptop to shop. Her
husband has dementia and she doesn’t feel comfortable leaving him to go to the
market or shops. There are other services she could use to enable her to get out, but
she decided she wanted a laptop to shop online. Also her daughter is moving abroad
and she will then be able to Skype with her daughter and the grandchildren by using
that. So it's a creative way of actually improving their quality of life.” Debbie Hyde,
Bournemouth Borough Council
Other uses of Direct Payments from Bournemouth Borough Council recently have
included choir membership, refresher driving lessons, college courses and gym
memberships.
In Bristol, one of the types of one-off Direct Payments currently available is aimed at
carers who are supporting people that do not use social services. The reason they
might not use social services might be because the person cared for refuses social care
services or because the cared-for person is not eligible for them. This means that
people with only low moderate needs, self-funders, people with mental health
problems and no social care need, and Continuing Health Care clients currently may
be able to access Direct Payments in Bristol, whereas in many places in the country
they would not be able to access this form of support. To give an example, one
Continuing Health Care client towards the end of life received a Direct Payment to
enable him to go to church once a week. The funding from these Direct Payments
mainly comes from the NHS through a pooled budget. A recent example shows how a
Direct Payment might be used to keep a carer in employment:
“We had a lady who works full time and was in moderate need and had a one-off
Direct Payment. She was able to rent a ‘Just checking’ system, which is new assistive
technology, so she could stay in work and know her mum is ok.” Debbie Charman,
Bristol City Council
Another example from Bristol shows how a Direct Payment may help people
maintain relationships that have been affected by caring responsibilities:
“There is an elderly couple and the wife has moderate dementia but no social care
need and the husband was struggling. We gave them money to go on a steam train
trip because that was what they always used to do together. It enabled them to revisit
the things they used to do together before she got ill.” Debbie Charman, Bristol City
Council
In 2011-2012, in addition to holidays and short breaks, Direct payments were used in
Dudley for karate lessons, to attend concerts, meals out, attend football matches, go to
speedway meets, evenings out, exercise classes, health treatments, gardening
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equipment, pampering and shopping, fishing tackle and a fishing licence, new TVs
and computers, amongst other things.
‘Paid for 12 month Gym membership. The gym is only 2miles from dad's home, so I
can go after I’ve washed, dressed and fed father. An excellent way to use the grant
money.’xii
The 2012-13 scheme is currently being evaluated and carers giving feedback are
pointing out how the Direct Payments have given them the opportunities,
opportunities they otherwise would no longer have, of being looked after themselves
(e.g. through pampering or by being waited on at a restaurant), doing things they used
to enjoy (e.g. playing darts and pool), having some social contact (e.g. by having a
day out and the chance to converse with other people there, or by having the chance to
visit family and friends), or realising an inexpensive dream that was previously denied
to them because their caring responsibilities meant they could not afford it.
“All my life I have been a steam enthusiast. I loved them as a child and have always
wanted to go on this trip going over the Ribble Valley Viaduct. Both my wife and I
care for our son for twenty-five years so this trip was impossible. He died and now I
am the main carer for my wife. With caring all our lives money is very scarce so the
trip was still impossible. The money you sent helped us to realise this dream... We had
a wonderful day and gave a silent thank you to your office as we passed over this
wonderful Ribble Valley Viaduct structure. Many many thanks for this opportunity
you gave to me and my wife. We will remember this trip forever.” Carer, Dudley
Respondents are also highlighting the benefits upon their health or how these things
can keep them going. Several are also mentioning Direct Payments as bringing
something into their lives that is guilt-free or lessens feelings of guilt.
“Last year I bought a puppy Yorkshire terrier. The allowance covered the price of the
dog and some injections for her and I was able to get a bed and a dog carrier.
Because my husband suffers from depression and goes to a day centre twice a week, I
find myself very lonely. I have kept dogs before and thought she would be a kind of
company for me. It also gives me distraction from my circumstances and gets me out
for a walk each day. She is lovely company and a loyal little friend… the toll of caring
for someone often sucks the life out of you, leaving you unable to plan or arrange
anything for yourself/ so to receive something for yourself to use for yourself is like a
breath of fresh air to me and there is no guilty feeling of using house money just for
yourself. I am eternally grateful for this help.” Carer, Dudleyxiii
Over half of the Carers’ Strategy Demonstrator Sites (Bath and NE Somerset, Bristol,
Lewisham, Liverpool, Suffolk, Sunderland and Torbay) provided a Direct Payment
for the purchase of equipment or domestic goods that would enable the carer to do
something unconnected to their caring role (e.g. a computer for social networking
with friends and family, online shopping and leisure, or a bike). Staff in the Sites
noted that this enabled carers to choose something that met their individual needs (i.e.
rather than just choosing an existing service they could choose something
personalized to them). They felt that this can be a relatively cost-effective way of
meeting carers needs. Carers said this made new hobbies or leisure activities a
possibility for them. They appreciated the flexibility and choice that this option gave
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them.xiv
Carer Direct Payment Awards given by Telford and Wrekin Council usually range
from £100-£500, although higher amounts may be awarded. Money from the NHS in
a pooled budget is used to top up the Direct Payment Award budget if that pot runs
out. Direct Payments are most commonly used for breaks and relaxation therapies,
laptop computers, gym memberships and driving lessons, but some uses are more
unusual. The following example illustrates the importance of listening to the carer
about what will make a real difference to them and considering giving the go ahead
on something you would not usually give approval for.
“One social worker was working with a couple and they didn’t go out much. She went
out to do a bit of shopping but that was it. They didn’t socialize much at all. Her
partner was housebound. The social worker talked to them. They talked and talked
and she said ‘what I really would love is.. I sit her looking at this carpet day in and
day out and I’m ashamed to invite the neighbours in.’ This carpet was literally
threadbare. The social worker came back to me and said ‘what do you think?’ And I
said ‘well, if you can demonstrate that it will improve her wellbeing and quality of life
then I would go for it.’ And we did and I think the whole thing cost about £850. When
the social worker went back again and the lady had had neighbours in. She felt every
morning when she came down it was fresher, it looked lovely, it lifted her mood. It
tipped the balance of her wellbeing. For that particular carer, it was very relevant to
enhance that person’s quality of life.” Jill Tiernan, Telford and Wrekin Council
Other diverse examples of things Telford and Wrekin have given Direct Payments for
include sofas, flying lessons, French lessons, college courses, motorbike repairs to get
the carer back on the road, and hobby equipment.
Eight of the Carers’ Demonstrator Sites (Bath and NE Somerset, Bristol, Derby,
Lewisham, Liverpool, Suffolk, Sunderland and Torbay) gave one-off Direct Payments
for activities or courses to improve carers’ wellbeing. These were used in various
ways including alternative therapies, gym memberships, stress management courses
and pampering sessions, sometimes in conjunction with alternative care such as
sitting services. Carers said that therapies and gym memberships improved their
fitness and wellbeing. They said that using Direct Payments in this way promoted
relaxation and reduced their stress as well as facilitating weight loss. They also said it
increased their confidence and self esteem as well as providing an enjoyable
experience. Staff also noted that it reduced stress amongst carers, brought confidence,
gave carers a chance to relax and helped carers make positive lifestyle changes to
improve their health and wellbeing. xv
Cheshire and Warrington Carers Centre manage the Carers Personal Budget Project,
which currently funded by the Primary Care Trust. A multiagency panel, consisting of
staff from the Carers Centre, local authority and the CCG meet twice a month to make
decisions on awarding money for Personal Budgets. The money is most often
received as a Direct Payment of up to £500, which can be given in one lump or in
smaller chunks over a period of up to six months, depending on the request of the
carer and their circumstances. Some of the things carers have recently spent their
Direct Payment on include ballroom and Bollywood dancing, microlight lessons,
driving lessons, photography courses and weightwatchers.
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“We had someone who had microlight lessons. He was probably in his late 60s and
caring for his adult daughter and that's what he used to do when he was younger
before he had all of this responsibility. So it's the only time he had felt free. He’s up in
the air and nobody could get hold of him if they tried…
One lady joined Weightwatchers. The Direct Payment paid for her enrolment, the
books. She lost over two stone. She says she can fly up the stairs now. Its helped her
in her caring role as well but its making friends, having regular breaks, having
something else to focus on.” Steph Garner, Cheshire and Warrington Carers Centre
Regular Direct Payments
We do not have published evidence on what carers of adults currently spend regular
Direct Payments on across the UK. However, anecdotal evidence suggests that many
spend them on existing social care providers and services, using care agencies for
sitting/ ‘home based-respite’ or PA services so that either the person cared for or the
carer themselves can get out of the home. In other words, people are fitting into
existing ‘off the peg’ provider services. This is not ‘wrong’ or a problem: we know
that such services are very important to many carers and can help with emotional
wellbeing, reducing strain and giving peace of mind.xvi
Nonetheless there are strong reasons why local authorities should also consider how
they might better facilitate the more creative ways carers might use regular Direct
Payments to support them in their caring role and maintain their health and well-
being. One is that ‘alternative care’, such as use of sitting services and PAs, is not
acceptable to some. Feedback from carers in the National Carers’ Strategy
Demonstrator Sites indicated that those care for are sometimes reluctant to go
somewhere without their carer and it can be difficult or undesirable for carers to leave
the person they care for with someone else.
‘I got a greenhouse from the carers’ centre... It has helped me at a lot, but I don’t
know anything about breaks - I wouldn’t leave my husband with anyone. I would
rather be with him 24/7 and my son.’xvii
Another reason is that research shows that carers often have to give up things and put
their own lives on hold when they start caring for someone. The Survey of Carers in
Households found that in 2009-10, around two in five carers (42 per cent) said their
personal relationships, social life or leisure time had been affected because of the
assistance they provided. Those who had been affected in this way were asked an
unprompted question to establish the effects of caring. The most common effects were
having less time for leisure activities (69 per cent), being too tired to go out (32 per
cent), being unable to go on holiday (23 per cent) and the effect upon their own health
(20 per cent).
When asked about spending time doing social or leisure activities specifically, 25 per
cent of carers said they had less time with friends and 20 per cent had less time for
pastimes or hobbies because of their caring responsibilities.xviii
Recent research
undertaken by Carers UK between 2010 and 2011 has shown that 78% of carers have
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cut back on holidays and 74% have cut back on leisure activities as a result of
caring.xix
Carers UK’s State of Caring 2013 survey found that 74% of carers have cut
back on seeing friends and family in 2013.xx
Commissioned support services for carers do not always help mitigate this impact on
carers’ lives:
“I’ve found that not everyone wants to go to carers support groups for carers of
people with a particular condition. They don’t really want it rubbed in their face all
the time that they are a carer and this is the most they can expect in life. They don’t
always want any bit of leisure time that you can give them to be about caring.” Alison
Myers-Ward, Hampshire County Council.
‘Making it real for carers’, co produced by carers, tell us carers want to see in
practice:
“The space to be someone other than a carer.
Time to pursue my own hobbies and interests without worrying about the cared for
person.”xxi
If people are allowed to use them innovatively, Direct Payments can meet these
needs.
“There is often confusion [amongst practitioners) around what is a ‘carers service’.
It has to be something beneficial to the carer. Many people do carers assessments and
identify day services for the service user as a need for the carer as they think it will
give the carer a break. I say, that's ok, that can go in the support plan and personal
budget of the service user, but what does the carer get? What is specifically for them?
They may well only be able to use that time to try to catch up with the basic daily
things they are behind on, the housework, not do something that will really benefit
their wellbeing. Also, the clients may refuse services and the carers still need help
and are entitled to the assessments – they need something that is specifically for them.
Respite alone might slow the point at which crisis is reached but some innovative use
of Carers Direct Payments means the situation of carers can actually improve, e.g.
relationships. For example, give them back the things they have had to give up, the
things that people who aren’t carers have, such as the chance to learn new skills,
resume a hobby and the chance to be looked after or pampered themselves. Its fine to
put a need for respite on the form and in the service user’s resource allocation but
you also need to consider what can be put in place to actively improve the carers life,
not only give them a bit of time to tread water rather than drown.” Officer Hampshire
County Council
Only three of the eight organisations we spoke to provided regular Carers Direct
Payments. In Hampshire, regular Direct Payments may be given to eligible carers if it
is agreed at assessment that they will provide what carers need to support them in
their caring role. One-off Direct Payments for specific items or courses may
accompany regular Direct Payments - the frequency and amount is determined by the
carers assessment. An example from Hampshire shows that Direct Payments can
make a difference in carers’ aspirations as well as their wellbeing:
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“We have a carer who has had reiki training. We arranged a Direct Payment for her
because she wanted a break from her caring responsibilities. We said ‘how can we
make a difference for you?’ and she said, “Well I’ve always wanted to do reiki
course. I’ve never had time to do it.” We said ‘well how can we help you?’ and the
carer said “well I can’t afford it.” So we said ok. The service user, her partner, can
be left on his own. So the carer did this course and she practiced on her partner and I
think it helped their relationship. So he benefitted from her class as well. She did the
introductory year. Then she did another year as well to go on further. Her aim was
then that she might eventually be able to get a little bit of money by doing reiki, which
is brilliant. So it gave her a break and it gave her something to work towards for the
future and I think her wellbeing improved dramatically.” Officer, Hampshire County
Council
Bristol City Council has a similar arrangement to Hampshire with regards to regular
Direct Payments for carers. Carers in Bristol who are assessed to be in ‘critical’,
‘substantial’ or ‘exceptional’ need and are supporting people eligible for social
services can get a set amount as a Direct Payment per week, with the amount
determined by the carer’s level of need. Substantial need equates to £45 per week,
which is the value equivalent to a three hours sitting service. Critical need would
attract £60 per week, which is the value equivalent to four hours’ sitting service.
Carers and practitioners in Bristol are encouraged to think of things other than using a
sitting service if that is not what they need. For example, they might spend the money
on a gardener so they do not have the additional worry of being unable to keep the
garden up together as a result of their caring duties. In Devon, regular Direct
Payments are sometimes are used for facilitating specific hobbies, e.g. art classes, but
most carers choose to use them to buy domestic support, such as help with ironing
and cleaning.
At the Carers Demonstrator sites that offered regular or ‘one-off’ or payments to help
with the costs of support with practical activities in the home such as gardening,
cleaning, shopping and home repairs (Bristol, Lewisham and Suffolk), staff
commented that such practical help in everyday life was a priority for some carers
rather than having a break from caring. They said it makes carers lives easier and
reduces stress. There was a perception amongst carers that support to improve or
maintain their home environment has a positive impact and reduces stress and
anxiety.xxii
Ideas on what can help facilitate innovative use of Carers Direct Payments
Raising awareness of, and improving access to, carers DPs in the community
Recent research undertaken by SPRU on local authority practice relating to carers
involvement in personalisation (main findings due summer 2013) has found that
carers often decline the offer of their own assessment because they cannot see its
purpose having contributed to the service user assessment. This means people are
likely to be missing out on Carers Direct Payments they may be entitled to. As
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support in the form of short breaks is often technically under the control of the service
user, carers do not have equal control to the person they care for. The study suggests
that if carers do not take up the offer of a separate assessment, the carer’s needs
should be fully assessed during the service user assessment and documented
sufficiently for any additional carers’ funding to be allocated separately to them to
meet their needs as carers.xxiii
In Hampshire, the officer responsible for Carers Direct Payments attends service user
and carers forums, BME groups and user-led organisations’ meetings to tell them
about Direct Payments and other services available to carers, and raise awareness of
what a carers service is to combat the commonly-held assumption that it equates to
day services for the person cared for or respite in a care home.
“The community needs to be educated as to what a carers service is. Carers don’t
realise it is for them. They never think about themselves.” Officer, Hampshire County
Council
One suggestion was that carers should be notified as a matter of course that Direct
Payments might be available to them.
People told us that carers are often reticent with regards to taking up something for
themselves that is free, so some may require a deal of reassurance about Direct
Payments. Debbie Hyde, Bournemouth Borough Council, says,
“Carers are sometimes unsure – they say, can we really do that?”
Jill Tiernan of Telford and Wrekin Council adds,
“There is a cautiousness amongst carers. It’s like we are giving something for free
and people really struggle with that idea. Carers are a fantastic bunch of people and
are not used to getting something for nothing. People are humble. They don’t always
think of themselves, they think of the person they care for in the first instance, so when
you have something that is going to help them and its free, there is a cautiousness.”
In some areas, statutory authorities have linked up with voluntary organisations to
provide more access routes to Direct Payments. Telford and Wrekin Council have two
types of one-off Carers Direct payments. Any carer can apply for a ‘Short-term Break
Grant’ of £60 if they are registered with the Carers Centre (a voluntary organisation
who manage the grant on behalf of the Local Authority). Carers can also apply for
‘Direct Payment Award’ if they are eligible once they have had a carers assessment at
the Centre or via the Local Authority. Hence people need not have a relationship, or
prior relationship, with the council to get a service.
Similarly in Devon, in addition to Direct Payments that are given by the County
Council to carers assessed as eligible, one-off cash payments are provided through
Devon Carers, a voluntary organisation. The funding for this additional service is
provided by Northern, Eastern and Western Devon CCG and Devon County Council.
To obtain the cash payment, carers do not have to have any contact with the local
authority. They fill in a simple questionnaire that is based around known risk and
stress factors for carers and this determines the amount they will get. Carers can use
the money for any purpose. They are encouraged to use it for hobbies and outings to
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add value and enjoyment to time out. In Dudley, organisations who work with carers
can also submit applications for a carers Direct Payment to the local authority - it does
not have to be done by a social worker or other local authority employee. This means
that there is a strong awareness about Carers Direct Payments amongst groups and
organisations in the community and, again, people do not have to already be in touch
with social services themselves to find out about the service.
For some local authorities, awareness of carers Direct Payments is very high and this
means demand may be too great. Worcestershire County Council have given Carers
Direct Payments for almost 10 years. Currently, workers can apply for a maximum of
£200 per carer, per year. When applying, they need to explain how the requested use
of the payment will help the carer maintain their caring role and will mitigate against
the more negative impacts of caring. The majority of Carers Direct Payments are
spent on holidays taken either whilst the person cared for is in respite, or together
with the person. Other things they have been spent on include gym memberships,
relaxation therapies and hobbies or interests.
Worcestershire commission a voluntary organisation to provide information, advice
and support to carers and as part of this, if relevant, Carers are informed about carers
assessments and the Carers Direct Payment. Because demand is so great,
Worcestershire have had to restrict access to Carers Direct Payments. Eligibility is
controlled by a carers assessment, developed by Worcestershire and based on Fair
Access to Care Services (FACS) guidance. Carers Direct Payments are only granted
where it is demonstrated that the caring role would be at critical or substantial risk of
breaking down if the identified outcome that the Direct Payment aims to achieve was
not met.
Having a clear message on what they can be used for and providing inspiration to carers.
People we spoke to stressed the need to have a clear message to carers about what
Direct Payments can be used for. However, they were keen that if examples were
used to promote innovative use of Direct Payments, they should be present as ideas
for inspiration rather than as a set menu.
Dudley have a short but clear message that they use to tell people what their Carers
Direct Payments are for without being too prescriptive: “Grants may be used for
holidays, breaks, days out and a variety of leisure activities. Carers do not need to be
too specific. Grants must be used on an activity which the carer does. They can be
used to have a break with the cared for person but may not be used to fund formal or
informal ‘respite’.”
Other organisations have used particular devices to try and inspire people to use their
Direct Payments innovatively.
“I started a scrapbook with letters and photos and that kind of thing to show other
carers what they might like to do and pictures on the wall as well so that when people
come into the office people get a feel of how its benefitted other people.” Steph
Garner, Cheshire and Warrington Carers Centre
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Last year, Telford and Wrekin Council produced a ‘Carers Passport’ which included
the information about Direct Payments alongside information about free carers events
and activities, such as pampering days, and discounted mainstream leisure activities
and courses.
“The Passport was an attempt to try and get that information out to people. We found
locally that people need inspiring. We would ask ‘well what do you think you would
like the money for?’ and the carer would say ‘well I don’t know, I can’t think’. So we
say ‘in an ideal world, what would make a difference to you?’ And they would say
‘Well I’d like more respite for Joe’. So we would say ‘well we can look at that
through other means, but this is money for you to help you continue in your carer’s
role, to improve your quality of life or improve your wellbeing’ and try to inspire
them. So the Passport was for carers to inspire people on what they could do.” Jill
Tiernan, Telford and Wrekin Council
Educating councils, partners and practitioners on the purpose of carers DPs and giving carers the control.
Practitioners we spoke to agreed that local authorities, voluntary organisations and
health services needed to gain greater understanding that a Carers Direct Payment is
not for respite services or replacement care for the person cared for, but something
specifically for the carer.
“I think local authorities have to agree to let go a bit and trust the carer and stop
thinking that carers need [social] 'services' - on the whole they don't, although the
person they look after certainly might. It is also about everyone understanding the
difference between respite/PA support, etc. funded through a service user's Direct
Payment to meet the outcome of carer support, and giving the carer a Direct Payment
of their own for them to spend on something that they identify will give them a break
and lead to feelings of well being.” Christine Rowley, Dudley.
Some also said that it is a challenge to stop social worker and care manager
practitioners perceiving Carers Direct Payments as something that would diminish
their budget for service users - their priority. When asked what would help encourage
innovative use of Carers Direct Payments across the county, having money for carers’
services in a separate budget to money for service users was mentioned.
“We’ve got separate budgets so we can monitor if the money has been used, and if not
why? It helps practitioners because we, the Carers Unit, hold the budget and our
team is responsible for the monitoring and control of that. It’s not up to practitioners
to think ‘oh, we need to protect our budget’. The budget is there and our team will tell
you if it’s not being used or otherwise. If it’s needed, its needed, they shouldn’t need
to try to hold back on spending. However, the assessed need must come from the
worker, and not applied for simply because the carer has asked for it” Alex Daniel,
Worcestershire County Council
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However, it was mooted that ring-fencing budgets for Carers Direct Payments alone
might not necessarily enable practitioners to feel more comfortable in giving carers
cash payments to spend on well-being.
“When you have a family carer who is doing all the laundry and housework for an
elderly relative who won’t accept anyone else doing it, we could actually give the
carer some money to get a cleaner for their own home. Staff really struggle about the
idea of giving people money for that because as far as practitioners are concerned,
the social care budget is not to go on cleaning. And I say ‘no, its fine, its not for the
service user, it’s for the carer’. It's a big thing to move the mindset on that. It takes a
real shift in possibilities.” Debby Hyde, Bournemouth Borough Council
Some interviewees suggested that what helps, or what would help across the country,
is training or educating frontline practitioners about what Carers Direct Payments can
and cannot be used for, challenging cultures of control and changing tendencies to
focus on only social care services.
“I think it would really help to give practitioners more training and more guidance.
As practitioners we need to know what we can and can’t use them for and know the
process for setting them up. We are not experts in Direct Payments. I think it’s almost
a fear to a certain point. With commissioned services we have always got that control
over delivering it. You always have to be realistic with carers around expectations -
Direct Payments seem like a blank cheque but there isn’t a lot of funding there. We
don’t want to be going out to carers making promises that we can’t deliver.” Karen-
Lisa Palmer, Hampshire County Council
“There isn’t necessarily a great deal of knowledge about the possibilities for Carers
Direct Payments. I think having case studies more available would give practitioners
and carers more knowledge about the breadth of what they can actually do. We need
examples of what people have done and what difference it has made to them, because
it is often simple personalised solutions that will have the biggest impact. Its not
necessarily being ‘innovative’ or ‘creative’, it’s just doing things differently.” Sophie
Smeeton, Devon County Council
“We need to change the mindset that everything has got to be the classic type of care.
We need to consider the carer’s interests and the life they have had prior to caring –
we need to ask what things they liked to do when they could do it. Did they draw?
Travel? Did they like to follow sports? What was their recreation at home?” Alison
Myers-Ward, Hampshire County Council
Having leadership, through a dedicated team, a lead or through carers’ champions
who can give prompting, guidance, support, and help with processes, seems to help
encourage innovative use of Carers Direct Payments in some local authorities.
“We have a carers’ unit team and we work with the people who do the carers’
assessments. We regularly update them on the services that are out there and on how
the carers assessment process works. We are trying to embed carers into every stream
of work and it helps because they think of it outside of the service user work. It helps
them to recognise carers as individuals. It helps that we have dedicated people to do
that work - not to do the assessments for them- but we support them in the process
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and in awareness. We work with them to use the services available appropriately.
We’ve gone beyond the stage of having to remind them that there is money in the
budget to apply for. Having done all of that work over the years, we are now in a
good position where we have workers in teams that are more like carers’ specialists
and know the carers services out there, such as training, information, Direct
Payments and breaks and that helps.” Alex Daniel, Worcestershire County Council
“Across the Council, practitioners are understanding it more and being more
innovative and creative because they think ‘ooh we can do this’, you don’t just have
to pay for somebody to come and sit. We are getting more realisation of what people
can do with the money. We have a network of carers’ champions across the Council
and we have regular meetings and send out guidelines. It’s communicating with them
and getting the message out by word of mouth through the carers’ champions. Word
of mouth is always better. Because I look at all of the carers assessments, I can go
back to practitioners and say ‘maybe, have you thought about…’ and they say ‘oh,
can we really do that?’ and that’s another way of kind of giving people permission to
think creatively.” Debbie Charman, Bristol City Council.
Where voluntary organisations do carers assessments on behalf of local authorities,
they also need encouragement to support carers in ‘thinking outside the box’.
“I have done quite a lot of work with the voluntary sector, enabling them to be more
creative as well. And they are now comfortable in feeling that they can encourage
carers to be creative, rather than ‘you can have £500’ for a holiday’, knowing that
there is the flexibility to be much more person-focused and personalised.” Debbie
Charman, Bristol City Council.
Supporting carers to be innovative and overcome barriers in a person-centred way
Having initial person-centred support at the assessment stage was identified as
important. It should be not just filling in a form but sitting down with the person and
taking time to work out what sort of break would help them the most and identify any
barriers specific to that individual. Sometimes using a tool can help in looking at the
carer holistically as a person rather than just in the context of the person cared-for.
“Carers don’t like to have to fill in a form and put down what their level of needs are.
They need to talk it through with someone really. It’s quite rare that you have
someone who comes in and says ‘I want driving lessons’ or ‘I want to do this’. A lot
of the carers we see caring, for example, an elderly husband, tend to really not know
what to do with a Direct Payment and people that have been in the caring role quite a
few years who haven’t had that change in routine don’t tend to know what to do. So
it’s about unpicking that at the appointment. It's a supportive process. It’s usually an
hour with the carer. We get the application done and its basically like an informal
chat… We are using the Carers Trust Pilot Caring Star as our model, which helps in
identifying things such as social needs. Usually by the end of that appointment we
have a general idea of what they want to do. The support appointment gives people
the opportunity to think about something else other than caring and you usually find if
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you haven’t got something down by the end of the appointment, when you ring them to
let them know if the funding panel have awarded them the money they will have had
the chance to think about it.” Steph Garner, Cheshire and Warrington Carers Centre.
Interviewees identified practitioner and conversation skills as key to enabling carers
to think ‘outside the box’ and use Direct Payments creatively. Observation at the
person’s home, and focusing on the carer as a person rather than just looking that
them in the context of their role as carer can help in drawing out potential ways in
which carers might use Direct Payments in an innovative way that really makes a
difference to them.
“When I do a carer’s assessment I always look not just at what the carer does for the
person but also try to build upon their interests and the things that they like to do. I
spent some time working with a carers’ support group when I was a student social
worker and lots of carers highlighted that sometimes they feel left out. As
practitioners we don’t always listen to their view - we put in things like sitting
services and respite services but that is more for the client. I worked with an elderly
couple where the husband had advanced dementia. Because of the nature of his
dementia he was very agitated and very possessive about his wife so if she went out of
the room he would get very upset. I spent a long time with her and managed to draw
the conversation out from the paintings in the room. I noticed them and was able to
approach that as a subject. I said ‘Aren’t they good’ and we were able to start from
that. And it turned out that the carer actually painted a lot of these paintings. In her
words, painting was like a relief. She had been able to escape from things when she
was painting. She said she really missed her art. So I said ‘what if we can find a way
so you can take part in art again?’.
There is a lot of research about the benefit of art therapy so that’s what we talked
about, and how to get her escape. She wanted to go to an art group, but because of
his advanced dementia and his following her, and because of her own health
problems and the stress it might cause she was too worried about leaving him. We
looked at a plan B for what could give her that escape. So I worked with the care
agency to commission a sitting service. We usually engage them so the carer can go
out for a couple of hours but in this case I said to the carer that she didn’t need to
leave the home - so I was able to build trust up with the sitting service. In time, I was
able to get her a Direct Payment of £100, a one-off, for her to purchase art materials.
Now she could go and paint in the garden or in the lounge without her husband
following her and she had the reassurance that this person was there with her
husband - if her husband could see her, he was settled. I went and did a review about
four weeks afterwards and the feedback was that she really benefitted from it.
I always look at ways to engage the carer to try to look at their interests and steer it
away from their caring role as such to make them feel valued as a person They are
not just a carer, they are a wife, they have a life as well, they are a person in their
own right. We’ve all got our different interests and values. This is what I try to draw
out.” Karen-Lisa Palmer, Hampshire County Council
Sometimes carers need extra time to think and some inspiration.
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“I think some of it is trying to help practitioners think outside the box of what might
benefit carers because people have for so long thought ‘respite - the cared-for person
can go into a home and the carer will stay at home on their own’. It can be hard to
change that way of thinking and also for carers to think that they are getting money
from the state that is not means-tested and it’s for their own health and wellbeing. We
talk to carers about the money that is available and might give pointers like ‘these are
the kinds of things that people have done before’ and give carers time so they don’t
have to make that decision there and then on what break they would like the money
for. They have time to think about what really might make a difference. Carers tend to
be so in the moment with the stress of caring that they almost can’t think past that and
they need time to think what they could benefit from.” Emma Moody, Bristol CCG
Sometimes the barriers carers face with regards to having a break or ‘me time’ need
drawing out. To overcome them may mean practical support has to be offered,
resources in the community need to be identified and utilised, and staff need to think
outside the box themselves.
“It is a struggle to get carers to think that they can have something for themselves. A
lot of carers, certainly the carers I experience, mainly older people, they have a lot of
gratitude for anything that comes their way and are almost like ‘I dare not ask’. I find
people will usually accept a sitting service and they might say ‘well I want to go out
with friends or do something without feeling in any way that I am disloyal to the
person I care for. I want to do interesting things, like go sailing, but I don’t want to
feel that my loved one is sat there and can’t go out.’ Often it is so interrelated. The
carer is stricken with conscience that ‘I don’t want to do it if my loved one can’t do
it’. So when I look at something for the carer, I also look at the loved one to make
sure they have something to do.” Alison Myers-Ward, Hampshire County Council
“We do have a few people who still don’t know what to do and we would have a
follow-up appointment to look at their hobbies and interests and things like that. We
would look at if they have additional things that are barriers - e.g. if they are too
stressed to cope with organising taxis - that we could help with and overcome so they
can have a break. We may need to look at resources available in the community such
as a voluntary sitting service that is free. It’s not just about taking a break, it’s
making sure everything else is in place so they can take a break and know that
everything will be ok. There are other barriers. For example, we have had carers
being unable to go on holiday because they had no one to go with - so we put them in
touch and they went on holiday together and that worked out really well. Having the
confidence to go and do something unknown is a barrier. We usually say do little
things slowly. ” Steph Garner, Cheshire and Warrington Carers Centre
Being flexible about payments
Carers Direct Payments may be a ‘one off’ payment, regular payments or payment of
a large sum in instalments, depending on the choice of the local authority. Department
of Health (2009) Guidance on Direct Payments: for community care, services for
carers and children’s services asks that councils bear in mind in the circumstances of
potential recipients in determining frequency of payments. A survey undertake in
2012 by Carers Trust suggested that only a small number of local authorities are
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flexible with regards to the frequency of payments to carers and give carers the
choice.xxiv
Though the Department of Health Guidance states that people may ‘bank’
any spare money, and that this may be particularly useful where people have long-
term and fluctuating conditions, the Carers Trust survey found that many councils
have rules in place prohibiting build up of contingency funds, and thus limiting
choice.xxv
In Hampshire, payments are arranged according to the outcomes of the carers
assessment: they are paid in the way that will enable the carer to meet their outcomes.
They are most commonly regular payments. The Council does not prohibit build up of
contingency funds up to six weeks.
“What we find is most carers don’t attend their own health appointments. This is not
good and should not be happening. So we say, if you know you have an appointment
two or three weeks down the road it’s ok to put some by so that you can get someone
to help the person you care for while you go for your hospital appointment, or if you
need emergency cover. If you are looking at thousands of pounds built up, then we
would reassess and probably need to take some back because they are not using it to
meet outcomes. Saving £50 here, £100 there is fine, but you, the carer, do need to let
us know- we need to document it on the support plan to show that there is a need
there to accumulate.” Officer, Hampshire County Council
In Devon, carers can build up seven weeks’ of their Direct Payment in their account
before the local authority will check if there is a problem or a previously unidentified
need.
In Bristol, regular payments may be adjusted if the carer would prefer to have some of
the total money they would get in a year as a lump sum to enable them to acquire a
particular item that would really help them.
“If the thing a carer with a substantial need would benefit most from now is, for
example, a bed or a mattress, we could give them a one off payment of £500 and then
do the calculations so the Regular Direct Payment would kick in 11 weeks later after
that – so that the total for the year equates to £45 per week. We have just supported a
carer who has very bad sciatica who didn’t have a bath in her bathroom and was
desperate to have a bath. We got the local voluntary sector home repair agency to do
the work at a very discounted rate and gave her a one-off payment to pay for the bath.
Then we made the calculation for the ongoing Direct Payment so that will continue in
due course for her to spend on a sitting service or whatever else she needs at that
time. All she wanted was this bath.” Debbie Charman, Bristol City Council
Some carers find regular Direct Payments stressful because of the record keeping
required, so having one-offs available may be important.
“A lot of Direct Payments scare carers because of the record-keeping. One-off Direct
Payments are good because it’s just a matter of being able to show the evidence on
what you sent it on if asked. When asked about Direct Payments a lot of carers say
‘Oh no, I can’t possibly think about that at the moment, its too stressful. I find that a
one-off Direct Payment is easier for them to accept.” Karen-Lisa Palmer, Hampshire
County Council
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Alternatively, introducing a pre-paid card system may help carers find regular Direct
Payments more attractive, enabling local authorities to easily keep track of spending
and removing that burden from the carer. Devon County Council has recently
introduced such a system:
“We have just introduced a pre-paid VISA debit card to make it easier and I think
that should make a difference because obviously we are not asking people to set up a
bank account. It is pre-loaded with the Direct Payment and people can spend that
flexibly whenever they want. It also means the authority can see what the spend is. It
means the carers don’t have to send in evidence of what they spend. It reduces a lot of
the paperwork and makes the initial offer of a Direct Payment a lot easier because
you are not asking them to do something. So it makes the process a bit easier for
carers.” Sophie Smeeton, Devon County Council
Being flexible on who and what Direct Payments can be used for
Evaluation of the Carers Strategy Demonstrator sites showed the importance of giving
carers choice and being flexible to meet carers’ individual needs to enhance their
wellbeing. In the sites, carers’ ‘breaks’, delivered through a Direct Payment or in
some instances as commissioned services, could take the form of training, courses,
leisure, goods, holidays with the person cared for, employment support, help with
gardening and domestic jobs etc., as well as alternative care such as sitting services
and short breaks for the carer. Evaluation found that these personalised ‘breaks’
achieved positive outcomes and gave carers time for themselves. Staff highlighted
the benefits of increased choice, control and meeting of individual needs, which came
with flexibility with particular regard to the varied types of breaks carers could choose
or identify for themselves, and the flexible eligibility criteria applied (the services
were not restricted to those caring for a person with a community care assessment of
‘critical’ or ‘substantial’ need). Research undertaken by Carers Trust indicates that there are differences amongst
local authorities on what carers can use Direct Payments for and some specifications
may prevent carers from experiencing flexibility and choice.xxvi
20 of the 52 local
authorities who took part in the Carers Trust survey said that carers cannot use their
Direct Payment to purchase alcohol, tobacco and gambling.xxvii
These restrictions
have been imposed by the council’s themselves, not the Department of Health. It
understandable that many local authorities are risk adverse in this way, it means going
to Bingo, going to the races, going to the pub, having a glass of wine with a meal,
activities that may be enjoyed by the wider population, are all activities that may be
denied to many carers.
The people we spoke to in this study said alcohol, tobacco and gambling were rarely
mentioned in requests for Direct Payments, if at all. Some prohibited their use and
some did not (though it was clear that if gambling and alcoholism was a problem for
the person concerned and the Direct Payment would therefore not enhance wellbeing,
the request would be declined).
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“In Dudley, carers decide what will give them a break. It’s what personalisation is all
about. We have such no restrictions. These carers are all adults! If going to Bingo
meets their outcomes and then who I am to say they can’t go? It will give them the
social contact that they want - who could argue with that? ” Christine Rowley,
Dudley Metropolitan Borough Council
“If something came up, we would look at it on an individual basis. Carers know what
will give them a break.” Debbie Hyde, Bournemouth Borough Council
Local authorities can currently specify their own eligibility criteria for carers services.
Carers usually have to complete a carers assessment and meet a specified level of
need, which may vary according to which local authority runs the scheme. Additional
criteria can include things such as proof of financial need, requiring the cared for
person to also have critical or substantial needs as well as the carer, or only giving a
Direct Payment if the person cared for has declined services. In some localities, Direct
Payments may be packaged as a range of different ‘grants’ for different types of
support, e.g. short breaks, help with domestic tasks and leisure activities, each with its
own different eligibility criteria. In contrast, in Dudley there is one Direct Payments
grant that can be used for any type of carers’ service, which, arguably, may prevent
confusion, at least amongst carers.
Pooling budgets
In some of the organisations we spoke to, the NHS and social care services funded
one-off Carers Direct Payments through a pooled budget using a Section 75
Agreement. A commissioner working in Bristol CCG, explained that, by breaking
down the barriers between health and social care using this budget, more carers can be
supported - carers in need who are not in receipt of social care services. Because
people do not have to be eligible for social care services to get a Direct Payment it
makes it easier for practitioners to feel they can promote Direct Payments, and their
innovative use, to carers.
“One of the biggest benefits is breaking down the barriers between health and social
care. Once people are totally health-funded (under Continuing HealthCare) social
care no longer have a responsibility for the service users/patients care. Health has
then traditionally focused on the patient, and the carer can remain in need but no one
is actually supporting them. The Integrated Carers Team and the money we have
allocated have really allowed us to support this group of carers effectively. Rather
than passing people between health and social care we can say ‘we are responsible’
for supporting carers and the money is there to support them. Before it might have
been felt ‘well I don’t want to raise expectations and carry out an assessment because
if the carer is not at the critical or substantial level of need, they won’t get anything.’
Now it doesn’t matter whatever the level of need, as long as there is some caring
going on and it is affecting their quality of life, we are able to provide something. So
it is always going to be a good thing. So when practitioners recognize a need,
something can be done now, and that has made a big difference to how practitioners
approach carers assessments.” Emma Moody, Bristol CCG
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Evaluating the service
People we spoke to talked about the need for more case studies to help both carers
and practitioners gain knowledge about the scope and benefits of Carers Direct
Payments, and hence use them innovatively. It was suggested that more evaluation
would help provide such case studies. Evaluation has also led to continued investment
in innovative Carers Direct Payments in some local authorities.
“Crucially we devised that really simple evaluation form which produced fantastic
feedback ... so our budget was then doubled to allow about 450-500 Direct Payments
a year. Carers like it, staff like being able to give the carers ' a treat' - often when they
cannot do much else (perhaps because of the person looked after refusing help). It
keeps on delivering great outcomes. So maybe that is what people need to do, get that
that evidence of how well it works.” Christine Rowley, Dudley Metropolitan Borough
Council
It was suggested that it can be difficult for social workers and care managers to
understand Carers Direct Payments because they are so used to having to work within
strict limits in relation to expenditure on social care services. Arguably, better
evidence for the preventative benefits of Carers Direct Payments would help to win
hearts and minds of practitioners and commissioners and help them feel able to
encourage innovative use of Direct Payments. However, such evidence is difficult to
obtain.
“The trouble we have is how we gather the actual evidence on how we have sustained
the caring role to demonstrate to commissioners that investment in the service is
needed. We have recently developed a feedback form to go out to carers which will
hopefully capture how its gone in terms of sustaining people in their caring role in
key areas such as health and wellbeing, relationships and things. Obviously we need
to word it in more carer-friendly language. We need some more evidence because all
we get from workers is ‘ it benefitted them and they want it again’ and a few
comments like ‘it recharged the batteries’.” Alex Daniel, Worcestershire County
Council
“We’ve got some research to back it up, but people still say ‘well how do you know
that it prevents the situation from breaking down?’ At the moment we can’t really say
that X amounts of investment now equates to X amount of continuing caring at home.
There is research out there but it’s quite patchy.” Debbie Hyde, Bournemouth
Borough Council
Clearly, whilst anecdotal and qualitative evidence is sometimes gathered, further
research to quantify and cost out any preventative benefits of Carers Direct Payments
is needed. One piece of work along those lines is currently in progress: Bristol CCG
and Bristol City Council Adults and Children’s Services have commissioned the
University of the West of England (UWE) to evaluate their carers’ breaks services,
which includes their one-off Direct Payment service.
22
“We thought it was best to have it evaluated externally rather than trying to do it
ourselves. UWE are looking at the breaks and how they improve quality of life for
carers and also the economic impact on the health and social care system. Everybody
says it is a very good idea to give carers’ breaks but nobody has quantified what that
actually means and demonstrated the impact that breaks can have on the health and
social care system. UWE are working with a company who do a lot of the evaluations
with the National Institute for Health and Care Excellence (NICE) and they are
looking at the breaks and the value based on feedback from carers to try and attribute
costs to it. It is quite an extensive evaluation and there is a lot of national interest in it
as well because it hasn’t really been looked at previously.” Emma Moody, Bristol
CCG
The findings from this evaluation should be available end of 2013 or early 2014.
Rachel Dittrich
29 August 2013
This mini project is part of the Social Care Evidence in Practice (SCEiP) project
funded by London School of Economics and Political Science's Higher Education
Innovation Fund. The author would like to thank the carers who gave permission for
their stories to be used, the professionals who consented to be interviewed or
reviewed this report and mentors Laura Clohessy and George Julian. Particular thanks
are due to Gary Spencer-Humphrey for his help and inspiration.
i Department of Health (2009), Guidance on Direct Payments Guidance on Direct
Payments: For community care, services for carers and children’s services, p.75.
London: Department of Health.
http://www.cambridgeshire.gov.uk/NR/rdonlyres/A2CC66B2-DB2C-40C7-92E9-
3C971D78565C/0/dh_121131.pdf. ii Gheera, M. (2012), Direct payments and personal budgets for social care.
http://panet.org.uk/wp-content/uploads/2012/11/SN037351.pdf. iii
Department of Health (2010), Carers and personalisation: improving outcomes.
London: Department of Health.
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/213806
/dh_122383.pdf. iv
Department of Health (2009), Guidance on Direct Payments Guidance on Direct
Payments: For community care, services for carers and children’s services, p.11.
London: Department of Health.
http://www.cambridgeshire.gov.uk/NR/rdonlyres/A2CC66B2-DB2C-40C7-92E9-
3C971D78565C/0/dh_121131.pdf. v Department of Health (2009), Guidance on Direct Payments Guidance on Direct
Payments: For community care, services for carers and children’s services, p.33.
London: Department of Health.
http://www.cambridgeshire.gov.uk/NR/rdonlyres/A2CC66B2-DB2C-40C7-92E9-
3C971D78565C/0/dh_121131.pdf
23
vi
Singleton, N. et al. (2002), Mental Health of Carers. London: Office for National
Statistics, The Stationery Office. vii
Bebbington, A., Darton, A., Netten, A . (2001), Care Homes for Older People:
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Princess Royal Trust for Carers (2011), Any Breakthrough for Carers? Glasgow:
The Princess Royal Trust for Carers and Crossroads Care. ix
Yeandle, S. and Wigfield, A. (eds.) (2011), New approaches to supporting carers’
health and well-being: evidence from the National Carers’ Strategy Demonstrator
Sites Programme, p.108-110. University of Leeds.
http://circle.leeds.ac.uk/files/2012/08/new-approaches-report-jan-12.pdf. x ADASS (2012), Personal Budgets Survey March 2012.
http://www.adass.org.uk/images/stories/Policy%20Networks/Resources/Key%20Doc
uments/PersonalBudgetsSurveyMarch2012.pdf. xi
Johnston, T. (2010), Hampshire County Council DP Carers One-Offs 2009/10
Evaluation project. Unpublished. xii
Rowley, C. (2012), Carers Direct Payments – feedback report 2011-2012.
Unpublished. xiii
Corespondence with Christine Rowley, Dudley Metropolitan Borough Council. xiv
Yeandle, S. and Wigfield, A. (eds.) (2011), New approaches to supporting carers’
health and well-being: evidence from the National Carers’ Strategy Demonstrator
Sites Programme, p.91. University of Leeds.
http://circle.leeds.ac.uk/files/2012/08/new-approaches-report-jan-12.pdf. xv
Yeandle, S. and Wigfield, A. (eds.) (2011), New approaches to supporting carers’
health and well-being: evidence from the National Carers’ Strategy Demonstrator
Sites Programme, p.91. University of Leeds
http://circle.leeds.ac.uk/files/2012/08/new-approaches-report-jan-12.pdf. xvi
Victor, E. (2009), A systematic review if interventions for carers in the UK:
outcomes and explanatory evidence, p.102-103. Essex: the Princess Royal Trust for
Carers. http://static.carers.org/files/systematic-review-15-jan-3840.pdf and Yeandle,
Y. and Wigfield, A. (eds.) (2011), New approaches to supporting carers’ health and
well-being: evidence from the National Carers’ Strategy Demonstrator Sites
Programme, p.91. University of Leeds http://circle.leeds.ac.uk/files/2012/08/new-
approaches-report-jan-12.pdf. xvii
Yeandle, S. and Wigfield, A. (eds.) (2011), New approaches to supporting carers’
health and well-being: evidence from the National Carers’ Strategy Demonstrator
Sites Programme, p.90. University of Leeds
http://circle.leeds.ac.uk/files/2012/08/new-approaches-report-jan-12.pdf. xviii
HM Government, Health and Social Care Information Centre (2010), Survey of
Carers in Households – England, 2009-10.
http://www.hscic.gov.uk/pubs/carersurvey0910. xix
Carers UK (2011), The cost of caring: how money worries are pushing carers to
breaking point.
http://www.carersuk.org/media/k2/attachments/The_Cost_of_Caring_1.pdf. xx
Carers UK (2013), The State of Caring 2013.
http://www.carersuk.org/media/k2/attachments/State_of_caring_report_PDF_version.
pdf.
24
xxi
think local act personal (2013), Making it real for carers, p.7.
http://www.thinklocalactpersonal.org.uk/_library/MIRcarers_FINAL_13_August_201
3.pdf. xxii
Yeandle, S. and Wigfield, A. (eds.) (2011), New approaches to supporting carers’
health and well-being: evidence from the National Carers’ Strategy Demonstrator
Sites Programme, p.91. University of Leeds
http://circle.leeds.ac.uk/files/2012/08/new-approaches-report-jan-12.pdf. xxiii
Glendinning, C., Mitchell, W. and Brooks, J. (2013), Carers and Personalisation:
Discussion Paper for the Department of Health. Working Paper No.DH 2576. xxiv
Carers Trust (2012), Progressing Personalisation: a review of personal budgets
and direct payments for carers, p.5.
http://www.carers.org/sites/default/files/progressing_personalisation.pdf. xxv
Carers Trust (2012), Progressing Personalisation: a review of personal budgets
and direct payments for carers, p.5.
http://www.carers.org/sites/default/files/progressing_personalisation.pdf. xxvi
Carers Trust (2012), Progressing Personalisation: a review of personal budgets
and direct payments for carers, p.13.
http://www.carers.org/sites/default/files/progressing_personalisation.pdf. xxvii
Carers Trust (2012), Progressing Personalisation: a review of personal budgets
and direct payments for carers, p.11.
http://www.carers.org/sites/default/files/progressing_personalisation.pdf.