MONEY

Robin Murray-Neill, Pauline Heslop, Koula Serle, Hazel March and Karen

Direct payments in mental health services have come a long way in the last few years, but are personal budgets and the
increasing prominence of social care in policy terms having detrimental effects on their success? While most people agree
that direct payments are a good idea, in reality less than five per cent of those eligible to use community care services
actually use them. Realising the government’s intention of ‘prevention, early intervention, enablement, and high quality
personally tailored services’ still has a way to go.

Key words: Direct payments; Individual budgets; Independent living; Mental health services; Self-directed support

A
few years ago the majority of people using or by organisations, could be adversely affected by two
involved in providing mental health services factors, which, in themselves, are to be welcomed: the
had either not heard of direct payments, or development of personal budgets (and the remodelling of
thought that they were a social services initiative that the social care system that this requires) and the increasing
would, at best, rarely be applicable to people who use prominence of social care in policy terms. This is of
mental health services. particular concern in mental health services, which,
Things have changed considerably, though not despite the clear intentions of the 1999 Care Programme
dramatically, since then. But now there is a real danger that Approach guidance, have still not become fully integrated,
the benefits realised by individuals, and the progress made coherent health and social care enterprises.

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 Direct payments: the future now

‘The CPA is care management for those of because of one recent problem. They seem to
working age in contact with specialist mental prefer me to come partly back within provided
health and social care services. It is essential to services and to take night sedation rather than
work towards an integrated approach across have “sleep-in” support, when I really don't want
health and social care, to minimise the distress either of these.
and confusion sometimes experienced by people ‘There’s still things that need resolving, not
referred to the mental health system and their least where to draw the line in a crisis between
carers.’ (Department of Health, 1999) when I can be supported at home by direct
payments (essentially how much money is
Instead of responding to mental health needs holistically – available in my budget) and when the purse
making health and social care support available as best
suits the particular needs of individuals – there are
strings are passed over to the mental health trust.
My impression is that social services are trying to
“ The campaign
growing signs of an even further delineation of redraw that boundary to put more of the onus on was centred
‘responsibilities’ between local authorities and mental health funding. So much for integrated care!’ on the belief
health trusts where direct payments are concerned. (Direct payments user, 2008)
There are two issues at stake here. First, a lack of
that far better
access to direct payments by mental health service users results could
when joint panel decisions need to be agreed: Background to direct be obtained if
payments and foreground individuals
‘[social care director] is making it virtually
impossible (along with [trust social care lead]) to individual budgets had control
to get a direct payment agreed by the panel… Direct payments were introduced in April 1997 following
Misinformation is still rife at team and higher a long campaign by disabled people and their allies. The over the
level about direct payments and although they campaign centred on the belief that far better results could resources that
are putting a training programme in place, this be obtained if individuals had control over the resources
were used to
will take time to roll out, and it will be their that were used to provide their support; services that many
version of direct payments and how it is being experienced as restricting or even denying them their provide their
implemented in [local authority] which… [is]
not within the “spirit” of how they were intended
individual rights and aspirations. support.
”
but more concerned with budgetary constraints.’ ‘The idea that those who oppose current methods
(Mental health worker, 2007) of psychiatric “treatment” do not acknowledge
the need for services is strange and fantastic to
‘I really do believe there is an underlying most of us whose experiences have led us to
boycotting of the direct payment system within traditional psychiatry. What is different is the
the entire NHS and social services network which existence of choice and freedom in meeting our
is continuing to be ignored by those in power. I am needs.’ (Lindow, 1994)
not the only one to think this way!’ (Carer, 2007)
Direct payments are a means by which people can be given
This is happening at the very time that Putting people first: control over the resources that would otherwise have been
a shared vision and commitment to the transformation of used to pay for services to be provided to them. To date,
adult social care (HM Government, 2007) has been tens of thousands of people have benefited from this
published ‘to set out and support the government’s opportunity to determine how best, in whole or part, to
commitment to independent living for all adults’; a meet their needs through social activity and support. They
transformation across public services, beginning with have provided compelling evidence that support based
social care, in which the increased use of direct payments around the individual is not only effective in meeting
will be a key feature. support needs, but can actually transform the lives of those
The second issue is that, once direct payments have who decide for themselves by whom, or by what means,
been agreed, there are reports from some local authority their needs for support should be met, and when, how and
areas that the flexibilities intended by their introduction where support would suit them best.
are being curtailed, and there is a holding back of the
commitment to independent living that they are ‘The freedom that direct payment gives me is
supposed to support: immeasurable. First and foremost it gives me
control… I employ staff of my own choosing, who
‘now I've got two social workers dictating to me are available when I need them most. They follow
which agency I can or can’t use, rewriting my my wishes and are not bound to distant, rigid
crisis plan so that I have to go into hospital rather policies to which I have had no input. And they
than use extra direct payment support at home, help me with the areas of life that I see as
and generally taking away a lot of the flexibility priorities for me, at that particular time, rather
that I used to have with my direct payment… than being restricted in the tasks that they can do.

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 Direct payments: the future now

Re-energize
‘…incentives need to be created for moving resources from day services
and repeat “special” college courses into mainstream leisure, cultural,
sport and social opportunities, under the disabled person’s control’
(Prime Minister’s Strategy Unit, DWP, DH, DfES, ODPM, 2005).

Re-energize, is a unique fitness and social group run by and for people who
use mental health services. The group is about recovery, relapse prevention
and social inclusion. It currently has a membership of 20, many of whom
are using direct payments in order to access the facilities used and activities
undertaken by the group.
We meet three days a week at an Oxford Sports Centre. There, we swim,
use the gym, play squash and socialise before and after our activities; plus,
week by week the group chooses a social activity to go to, such as the
cinema, horticultural visits or art galleries.
The group has been going for several years now. It emerged from the
Hub day centre, where there was a sports group that members enjoyed so
much that after the Hub closed down they kept it going. Re-energize
Koula Serle, manager of Re-energize, outside sports centre operates independently and outside of the services, and promotes a group
ethos of: health; well-being; moving forward; reclaiming life.
The role that direct payments plays in Re-energize is twofold: people use
direct payments to enable them to get to the venue and also to contribute towards the costs of maintaining the group. At the time of writing,
the local primary care trust has awarded Re-energize funding to support the group’s social activities. This is a tremendous recognition of
the value of the group itself and of how its activities provide both health and social benefits for its members.
The contributions to Re-energize from people’s direct payments go into a community business account. This goes towards expenses
incurred in running the group, such as phone costs, stationery and members attending conferences and giving presentations about Re-energize.

‘Second, direct payments provides me with the Commission for Social Care Inspection (CSCI) and the
support and confidence to live my life as I wish to Social Exclusion Unit, as failing to give adequate access to
live it, rather than being constrained by fear, lack direct payments. The latest official figures from CSCI (for
of confidence and low self-esteem. I now live in 31 March 2007) show that the number of people using
my own home, hold down regular employment direct payments in lieu of learning disability services was
and have friends who do not need to worry about three times greater than the number of people using direct
also being my “carers”. I go out independently, do payments in lieu of mental health services.
voluntary work with people with mental and It is both the success of direct payments where they are
emotional support needs, and have learned how used and the limitations imposed on access to them within
to trust, albeit a cat! the current community care system, that have led to the
‘Third, it acts as a form of mental health current political agenda. This has been informed by
promotion and maintenance, rather than being bringing together and implementing ideas and evidence as
part of all too familiar “crisis intervention” to how the whole care system could be adapted to provide
process, which, in my experience, has come too the same maximum level of choice and control to all.
late to be a very positive or empowering form of The work on designing a new system (generally known
help.’ (Heslop, 2001) as ‘self-directed support’) has been led by In Control since
2003 and given further impetus by the 13 pilot individual
But, however compelling the evidence, the reality is that budget sites funded by the Department of Health since
comparatively few (under five per cent) of those eligible to 2006 (www.individualbudgets.csip.org.uk). Two recent
use community care services use direct payments, and developments are of particular interest: the publication by
there remain huge variations in access to direct payments, In Control of a discussion paper on mental health and self-
depending on where a person lives and which type of directed support, A choice and a voice (Brewis, 2007), and
services they use. the publication of Putting people first: a shared vision and
Many people are simply not being offered direct commitment to the transformation of Adult Social Care (HM
payments as an option when they should be, and even Government, 2007).
when they have been, many people’s experiences have Direct payments (as we currently define them) are not
been of protracted delays, staff uncertainty or being told being replaced, as has been supposed, but will remain as one
that they are not eligible to receive them. For a number of way of receiving an individual budget. Effectively, the system
years now, mental health services have been routinely is being remodelled to reflect the aspirations of those who
identified by, for example, the Department of Health, the campaigned for so long to bring direct payments into being:

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 Direct payments: the future now

Hazel
‘Family members and carers to be treated as experts and care partners.’ (HM Government, 2007)

“
‘It took a year from the time I alerted the trust to my son’s urgent need for the 12 hours he was assessed as
needing, to being offered direct payments for just six of those hours.
‘We had been seriously misinformed about direct payments over a protracted period of time. Having been
initially told that direct payments were not applicable, we persisted as we had information to the contrary.
Twice we were assured that the direct payments were approved, and twice it turned out they were not!
‘On the third occasion, we were told that, contrary to previous assurances, our son’s level of need was not
significant enough for him to be deemed “eligible”. At the time, he was virtually a recluse in a bungalow in
our garden. Two years earlier, he had started work again on a part-time basis and had begun to rebuild his
previously successful career in business.
‘The protracted nature of the process, the apparent lack of knowledge by staff and the inconsistent and
incorrect information provided were all real problems. The strange phenomenon of needs being agreed as
eligible at an assessment, then at a trust panel meeting, but subsequently being declared ineligible by the local authority in a third part of
the process, should surely have been of serious concern for senior trust and authority staff. The decision was particularly unexpected given
that my son’s CPA assessment – used in the direct payments application – was actually graded at “critical”, the highest level on the scale.
‘However, I challenged and lost the six-hours-per-week decision. My son had deteriorated to such an extent that it seemed pointless
trying any longer, and I became resigned to the fact I had lost my long battle. The ordeal my son and I have gone through has made the
outcome far worse than could ever have been imagined, and I have regretted ever embarking on my fight for direct payments. I lost faith
and hope and, sadly, my son did too. He became a total recluse and wanted nothing to do with anyone, including me.
‘I still maintain that it would never have got to this situation had he received the help when I first asked. I watched him deteriorate
month by month, and constantly prayed for “intervention” that was not forthcoming. I felt pain and anger, and was disillusioned and
dispirited. My son had no will to do anything now other than to breathe, eat, sleep and smoke. I could do no more for him and felt ashamed
at admitting defeat and deserting him. I just couldn’t achieve what I knew could be achieved, without help – and it just wasn’t there.
‘Shortly after this, my son was shown a residential home by his social worker. He didn’t like what he saw and returned to the bungalow.
With considerable difficulty, we eventually recruited a support person for the six hours that were granted. We had a poor response to the
advert, but at first it seemed to work. He went bowling and enjoyed it, and even drove my car for about a mile after being advised that his
driving licence had been reinstated. But he quickly lost his confidence and is now saying he doesn’t like the support worker. His confidence
is now letting him down very badly, and he just wants to retreat to his solo world again.
‘The sad thing is that if he had received these direct payments a year ago, his confidence probably wouldn’t have plummeted as it has done
over the months, and he could have been much further advanced by now. Also, if we could have been offered the 12 hours he was originally
assessed as needing, we may have been able to attract a wider range of people and found someone he would feel more comfortable with.
‘I have sent the records to the Local Government Ombudsman to see if the six hour allowance can be challenged. I will not back down

”
though; we have come too far and fought too many battles to give up now.
‘On a brighter note, the new support worker is persevering and, in spite of some minor protests, my son is agreeing to continue. They
have just come back from a walk with the dog, the sun is shining, and they have just gone off to the pub for a drink! I never thought I
would see the day… watch this space!’

‘The time has now come to build on best practice can choose to meet their mental health needs, and the
and replace paternalistic, reactive care of balance of health intervention and social activity and
variable quality with a mainstream system support, is optimised by this transformation (Alakeson,
focused on prevention, early intervention, 2008). This requires an active engagement with the
enablement, and high quality personally tailored requirements of Putting people first, led by a true
services.’ (HM Government, 2007) partnership approach between health trusts and local
authorities, to maximise the flexibilities available to people
Unless the scale of the challenge that the required in meeting their mental health needs:
transformation presents to our current mental health
services is fully recognised and positively addressed, there is ‘This will not require structural changes,
a real danger that some of the significant progress that has but organisations coming together to re-design
been made towards this goal could be jeopardised. This local systems around the needs of citizens.’
would be a profound disservice to those pioneers who have, (HM Government, 2007)
often against considerable resistance or outright opposition,
created personal support solutions that reflect the ambitions Direct payments have enabled people to provide us with
of Putting people first and have greatly inspired others. some encouraging glimpses of the future, now.
Recent evidence from the USA supports our view that
it is of particular importance that the way in which people

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Direct payments: the future now

Karen
‘As a general principle, local councils should aim to leave choice in the hands of the individual by
allowing people to address their own needs as they consider best, whilst satisfying themselves that
the agreed outcomes are being achieved.’ (Department of Health, 2003)

“
‘Living alone in a rural area and with depression was making me feel worse and more isolated, and I
realised that I needed help. I was assessed by the community mental health team and they agreed that
I was in need of support to regain my confidence and self-worth.
‘They arranged for a community support worker to visit me at home for a couple of hours a week.
But this didn’t work well... I became more and more anxious knowing a stranger was coming to see
me, and that their service was often inflexible and unreliable.
‘Things got so bad that I had a meeting with my care co-ordinator and on my request they stopped
the service. Then I was informed about direct payments, which gave me choices that met my needs.
‘After thinking long and hard about what would reduce my isolation and get me out of myself, I
met with my care worker and we discussed my thoughts that my needs could be met by having a dog.
‘After a meeting with the direct payment team, and receiving a direct payment, I bought my dog,
Jess, through the RSPCA, who were very helpful and gave me the knowledge of how to care for her.
‘I’ve had Jess for sometime now, and everything seems to be working out just fine. I feel less

”
isolated, we go out for long walks and I often chat to people, and of course Jess is a great companion. Things have started to improve for
me, and I really feel that I’m on the road to recovery.
‘Direct payments gave me the opportunity to buy my social needs. Needs that I never could have received through in-house services.’

From Direct payments and mental health, CSIP North East, Yorkshire and Humber Development Centre/Rotherham MBC 2007.

References Department of Health (2003) Direct payments guidance:

Alakeson V (2008) Let patients control the purse strings. British community care, services for carers and children’s services (direct
Medical Journal 336 807–809. payments) guidance England. London: Department of Health.

Brewis R (2007) A choice and a voice. Downloadable from: Heslop P (2001) Direct Payments for people with mental health
www.in-control.org.uk support needs. The Advocate (May).

CSIP North East, Yorkshire and Humber Development HM Government (2007) Putting people first: a shared vision and
Centre/Rotherham MBC (2007) Direct payments and mental health commitment to the transformation of Adult Social Care. London:
DVD. Available from kevin.whiteley@csip.org.uk Department of Health.

Department of Health (1999) Modernising the care programme Lindow V (1994) Self-help alternatives to mental health services.
approach: effective care co-ordination in mental health services. London: MIND.
London: Department of Health. Prime Minister’s Strategy Unit, DWP, DH, DfES, ODPM (2005)
Improving the life chances of disabled people. London: Cabinet Office.

Robin Murray-Neill works for the Care Services Improvement Partnership as part of the NIMHE
National Social Inclusion Programme and Personalisation Team.

Pauline Heslop has been using direct payments to support her mental health needs for eight years.

Koula Serle manages Re-energize and has experienced mental illness for six years.

Hazel March is full-time carer to her 38-year-old son who developed schizophrenia five years ago. He
has significant ongoing problems and is severely disabled by his illness.

Karen is a pseudonym. Like Pauline, she has been using direct payments to support her mental health
needs. Since the DVD (see above) was made, Karen has stopped using mental health services.

For more information on Re-energize contact Antony Thorn, Direct Payments Development Officer,
Oxfordshire County Council at antony.thorn@oxfordshire.gov.uk

For information about the Wilby Campaign to promote the importance of dogs in recovery, and for
the recognition of their status as ‘assistance dogs’ contact Christine Mcdonald at
christine.mcdonald@nest-network.co.uk

For a copy of the DVD that features Karen’s story and four others contact call Jacqui White on 01206
287579; email: Jacqui.white@csip.org.uk

22 A life in the day Volume 12 Issue 3 August 2008 © Pavilion Journals (Brighton) Ltd