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Personalisation & mental health
              exploring key ideas




Dr Simon Duffy - The Centre for Welfare Reform -
   UCLAN & Mind - Manchester - 19 March 2013
Dr Simon Duffy
•Social innovator - e.g. personal budgets
•Philosopher - work on citizenship
•Advisor - Campaign for a Fair Society

The Centre for Welfare ReformReform does not mean cuts
and inequalityWelfare state is good, but designed
wrongNeeds more innovation, andRespect for citizenship,
families, community & justice
•Reform does not mean cuts and inequalityWelfare state is
good, but designed wrongNeeds more innovation,
andRespect for citizenship, families, community & justice
Personalisation & Mental Health
Personalisation & Mental Health
Ideology: grassroots to mainstream & beyond
The development of personalisation theory and
relevance to policy development and wider health
and social care practice will be discussed. The
interplay between economic need for reform and
market development will be explored and its
significance to mental health service users and
local service and support provision discussed.
 and market development will be explored and its
significance to mental health service users and
local service and support provision discussed.
Know how to take things. Never
against the grain, though they’re
handed to you that way. There are
two sides to everything. If you grab
the blade, the best thing will do you
harm; the most harmful will defend
you if you seize it by the hilt.

Baltasar Gracian
“...the standard of justice depends on the
equality of power to compel and that in fact
the stronger do what they have the power to
do and the weak accept what they have to
accept.”

cited by Thucydides
Key points

1.Personalisation is ‘contested’
2.Mental health reform has been
 slow
3.Problems are going to grow
4.Change may yet come
1. Personalisation
Personalisation & Mental Health
I used to work in the fashion design industry as a product developer
until I became ill. This was a hard time in my life. I was diagnosed
with paranoid schizophrenia...
...as I am now on the road to recovery my budget has reduced. I
have updated my plan myself and this has given me the opportunity
to talk about what I want for the future. The opportunity to be
creative is very important to me and is something that keeps me
well. I now receive a little support and a one off payment which I
use to help me to buy equipment to make jewellery. I hope that I
will eventually be able to teach other people how to make jewellery
to give something back. My goal is to start up my own jewellery
business and be financially self-supporting, and the recovery team is
helping me with this.
Without the support that I have I would still be wondering where my
life is going, but now I have hopes for the future. I would definitely
recommend considering a personal budget. You can really make it
work for you in a way that I didn’t know was possible. I feel lucky
that I have been able to get back some of the life I have lost.
From Health Efficiency by Alakeson & Duffy
Citizenship Theory
by Duffy
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
Keys to Citizenship
Citizenship
is the key
1.Purpose - a life of meaning
2.Freedom - directing my own life
3.Money - having enough on which to build
4.Home - being where I belong
5.Help - that fits me
6.Life - getting stuck in
7.Love - getting it and giving it
Personalisation & Mental Health
Murray’s Real Wealth Model
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
2. Mental health
Personalisation & Mental Health
Erving Goffman's Asylums (1960) arose out the time he spent
in 1955-56 at St Elizabeth's Hospital Washington DC, where
he observed at first hand the daily life of mental patients and
staff. he concluded that in the 'total institution' that asylum
was, doctors and patients were bound together in a
masquerade in which the first had to behave in authoritarian
fashion while the second enacted variations on the themes of
manic craziness: even if power lay with the doctors, both
colluded in a social order which perpetuated madness rather
than the vaunted and hoped-for cure.

From Mad, Bad and Sad by Lisa Appignanesi
•   Funding for mental health services is
    currently invested in the wrong things
•   Improving mental health has more to do with
    citizenship and community than with services
•   Current systems of funding and
    commissioning have made no difference
•   Personalisation and greater community-focus
    could change that
•   Peer support will change that
Personalisation & Mental Health
These findings [better long-term outcomes for schizophrenia in
developing countries] still generate some professional contention and
disbelief, as they challenge outdated assumptions that generally people
do not recover from schizophrenia and that outcomes for western
treatments and rehabilitation must be superior. However, these results
have proven to be remarkably robust, on the basis of international
replications and 15-25 year follow-up studies. Explanations for this
phenomenon are still at the hypothesis level, but include:
1. greater inclusion or retained social integration in the community in
developing countries, so that the person retains a role or status in the
society
2. involvement in traditional healing rituals, reaffirming community
inclusion and solidarity
3. availability of a valued work role that can be adapted to a lower level
of functioning
4. availability of an extended kinship or communal network, so that
family tension and burden are diffused, and there is often less negatively
'expressed emotion' in the family
Dr Alan Rosen from Destigmatising day-to-day practices: What Can Developed Countries learn from
Developing Countries? World Psychiatry 2006, 5: 21-24
Personalisation & Mental Health
Personalisation & Mental Health
Government doesn’t
                          always know best




[The ill-fated Pruitt-
   Igoe housing
       project]
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
Of 44 women working with WomenCentre:
Managing a serious health condition                    64%
Finding a safer place to live                          27%
Living with childhood abuse                            51%
Didn’t finish their education                          76%
Recent experience of domestic violence                 85%
Fractured family (for those with young families)       66%
Children experienced abuse (for those with children)   55%
Living with a severe level of mental illness           55%
Living with some mental illness                        91%
History of drug or alcohol misuse                      52%
Victim of crime                                        41%
Perpetrator of crimes                                  39%
Worried by debt or lack of money                       65%
Lots of services,
no support
no support
Personalisation & Mental Health
Our hypothesis
Poor mental health is a function of real poverty




Multiple reinforcing erosion of personal resilience
Service label       N        Urgent
                             problem       N      Real need         N

Victim of domestic
violence             55 Debt               50 Better self-esteem    64


Mentally Ill         39 Housing            48 To overcome past
                                              trauma                54


Criminal             35 Benefits           46 To manage current
                                              trauma                51


Poor Mother          33 Health             37 To stop being
                                              bullied               50

Misuses Alcohol      24 Rent               32 Guidance              50

Uses Drugs           22 Criminal Justice
                        Advocate           24 Relationship skills   45

Violent              19 Dentistry          8   Mothering skills     26

Chronic Health
Condition            16 Others             3   Others               1
3. Crises
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
The relative risk by different environments
Personalisation & Mental Health
We spend people’s money for
them on things they wouldn’t
    really buy for themselves
Personalisation & Mental Health
•   End of Disability Living Allowance
•   Cuts in Housing Benefit & Council Tax benefit
•   Reductions in Access to Work
•   Reduced eligibility for ESA
•   Increasingly intrusive testing by ATOS
•   Introduction of Universal Credit
•   Benefits reindexed to increase poverty
•   End of Independent Living Fund
•   Increased eligibility for social care
•   Increasing bureaucracy in social care
•   Reducing budget levels in social care
•   Return people to institutions and care homes
•   Increasing social care charges
•   Increased taxes, e.g. VAT, Council tax
•   and many, many other measures
Personalisation & Mental Health
Mental health will deteriorate as



1.Inequality will increase
2.Stigmatisation will increase
3.Real poverty will increase
Income inequality correlated with mental illness
Some of this may be caused by practical aspects of
poverty, e.g. debt:

45% of people in debt have mental health problems
compared to 14% of people who are not in debt

Developing unmanageable debt is associated with
an 8.4% risk of developing a mental health problem
compared to 6.3% for people without financial
problems (i.e. a third higher)

Relative risks for people in debt: alcoholism (2x),
drug addiction (4x), suicidal ideation (2x)

Martin Knapp, 2012 Tizard Lecture
Some of this may be caused by psychological
aspects of poverty, e.g. stigma:




 Chick Collins on the ‘Scottish Effect’
Personalisation & Mental Health
Mental health spending itself may not decrease
much, but this is not necessarily a good thing


Rather than reducing inequalities itself, the
initiatives aimed at tackling health or social
problems are nearly always attempts to break the
links between socio-economic disadvantage and the
problems it produces. The unstated hope is that
people - particularly the poor - can carry on in the
same circumstances, but will somehow no longer
succumb to mental illness, teenage pregnancy,
educational failure or drugs.

Wilkinson & Pickett, The Spirit Level
4. Reforms
Personalisation & Mental Health
Personalisation & Mental Health
Emerging themes in policy

1.Personalisation still has momentum
2.GPs may have more influence
3.LAs may have more influence
4.Social care will be slashed
5.PBR may make a difference
Personalisation & Mental Health
Not gifts, but entitlements
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
Personalisation & Mental Health
creative support for folk with
       complex needs
Personalisation & Mental Health
personalised support means...
Personalisation & Mental Health
Transportation                               13%   Crafts                           2%

Computers and accessories                    12%   Licenses/ certification          2%

Dental services                              11%   Entertainment                    2%

Medication management services               8%    Vision services                  2%

Psychotropic medications                     8%    Furniture                        1%

Mental health counselling                    8%    Non-mental health medical        1%

Housing                                      7%    Camera and supplies              1%

Massage, weight control, smoking cessation   5%    Education, training, materials   1%

Utilities                                    3%    Haircut, manicure etc.           1%

Travel                                       3%    Pet ownership                    1%

Equipment                                    3%    Supplies and storage             <1%

Clothing                                     2%    Other                            <1%

Food                                         2%    Total                            100%
Personalisation & Mental Health
Personalisation & Mental Health
integration through
  personalisation
the need to change investment
           patterns
Personalisation & Mental Health
rethinking outcomes




LA Resources       ‘Social Care’        Well-being?

NHS Resources     Medical services   Clinical outcomes?

                                      Improved mental
Welfare funding     ‘what works’
                                           health
Rethinking commissioning

          • Total place - the
             Humpty-Dumpty
             challenge
          • Community sourcing -
             individuals, communities
             and local organisations
          • Innovate - you can’t
             move without changing
          • Measure - focus on what
             really matters
Localism anyone?
Personalisation & Mental Health
WomenCentre:

1. Start with the whole woman - gendered and holistic

2. Offer a positive and comprehensive model of
   support - every woman is a one-stop-shop

3. Build a bond of trust - create the means for woman
   to do real work together

4. Be a new kind of community - women, working
   together, to improve lives and communities.
A positive model of service...




5 and 1/2 levels of support
Knitting together the bond of trust
Personalisation & Mental Health
Personalisation
  Forum Group
Personalisation & Mental Health
The future social worker?
Time to Campaign?
Fund
 Life
Personalisation & Mental Health
Personalisation & Mental Health
The victorious ‘Fabians’



We have little faith in the 'average sensual man',
we do not believe that he can do more than
describe his grievances, we do not think he can
prescribe the remedies

Beatrice Webb
The defeated ‘Distributivists’

We say there ought to be in the world a great
mass of scattered powers, privileges, limits, points
of resistance, so that the mass of Commons may
resist tyranny. And we say that there is a
permanent possibility of that central direction,
however much it may have been appointed to
distribute money equally, becoming a tyranny.

G K Chesterton
Honour can exist
anywhere,

love can exist
anywhere,
but justice can exist
only among people
who found their
relationships upon it.
Ursula Le Guin
1. Human Rights - Better fundamental legislation
2. Clear Entitlements - Its ‘my budget’
3. Avoid Crisis - Family support, lower
thresholds
4. Full Access - No ‘special’ funding for services
5. Choice & Control - Freedom, capacity
6. Fair Incomes - Enough for citizenship
7. Fair Taxes - No ‘special taxes’, no charges
8. Sustainability - Rethink health/social care split
If you want to get more involved

1.Join the Campaign for a Fair Society
     www.campaignforafairsociety.org

1.Subscribe to The Centre for Welfare Reform
     www.centreforwelfarereform.org

1.Twitter users can follow #fairsociety

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Personalisation & Mental Health

  • 1. Personalisation & mental health exploring key ideas Dr Simon Duffy - The Centre for Welfare Reform - UCLAN & Mind - Manchester - 19 March 2013
  • 2. Dr Simon Duffy •Social innovator - e.g. personal budgets •Philosopher - work on citizenship •Advisor - Campaign for a Fair Society The Centre for Welfare ReformReform does not mean cuts and inequalityWelfare state is good, but designed wrongNeeds more innovation, andRespect for citizenship, families, community & justice •Reform does not mean cuts and inequalityWelfare state is good, but designed wrongNeeds more innovation, andRespect for citizenship, families, community & justice
  • 5. Ideology: grassroots to mainstream & beyond The development of personalisation theory and relevance to policy development and wider health and social care practice will be discussed. The interplay between economic need for reform and market development will be explored and its significance to mental health service users and local service and support provision discussed. and market development will be explored and its significance to mental health service users and local service and support provision discussed.
  • 6. Know how to take things. Never against the grain, though they’re handed to you that way. There are two sides to everything. If you grab the blade, the best thing will do you harm; the most harmful will defend you if you seize it by the hilt. Baltasar Gracian
  • 7. “...the standard of justice depends on the equality of power to compel and that in fact the stronger do what they have the power to do and the weak accept what they have to accept.” cited by Thucydides
  • 8. Key points 1.Personalisation is ‘contested’ 2.Mental health reform has been slow 3.Problems are going to grow 4.Change may yet come
  • 11. I used to work in the fashion design industry as a product developer until I became ill. This was a hard time in my life. I was diagnosed with paranoid schizophrenia... ...as I am now on the road to recovery my budget has reduced. I have updated my plan myself and this has given me the opportunity to talk about what I want for the future. The opportunity to be creative is very important to me and is something that keeps me well. I now receive a little support and a one off payment which I use to help me to buy equipment to make jewellery. I hope that I will eventually be able to teach other people how to make jewellery to give something back. My goal is to start up my own jewellery business and be financially self-supporting, and the recovery team is helping me with this. Without the support that I have I would still be wondering where my life is going, but now I have hopes for the future. I would definitely recommend considering a personal budget. You can really make it work for you in a way that I didn’t know was possible. I feel lucky that I have been able to get back some of the life I have lost. From Health Efficiency by Alakeson & Duffy
  • 17. Citizenship is the key 1.Purpose - a life of meaning 2.Freedom - directing my own life 3.Money - having enough on which to build 4.Home - being where I belong 5.Help - that fits me 6.Life - getting stuck in 7.Love - getting it and giving it
  • 25. Erving Goffman's Asylums (1960) arose out the time he spent in 1955-56 at St Elizabeth's Hospital Washington DC, where he observed at first hand the daily life of mental patients and staff. he concluded that in the 'total institution' that asylum was, doctors and patients were bound together in a masquerade in which the first had to behave in authoritarian fashion while the second enacted variations on the themes of manic craziness: even if power lay with the doctors, both colluded in a social order which perpetuated madness rather than the vaunted and hoped-for cure. From Mad, Bad and Sad by Lisa Appignanesi
  • 26. Funding for mental health services is currently invested in the wrong things • Improving mental health has more to do with citizenship and community than with services • Current systems of funding and commissioning have made no difference • Personalisation and greater community-focus could change that • Peer support will change that
  • 28. These findings [better long-term outcomes for schizophrenia in developing countries] still generate some professional contention and disbelief, as they challenge outdated assumptions that generally people do not recover from schizophrenia and that outcomes for western treatments and rehabilitation must be superior. However, these results have proven to be remarkably robust, on the basis of international replications and 15-25 year follow-up studies. Explanations for this phenomenon are still at the hypothesis level, but include: 1. greater inclusion or retained social integration in the community in developing countries, so that the person retains a role or status in the society 2. involvement in traditional healing rituals, reaffirming community inclusion and solidarity 3. availability of a valued work role that can be adapted to a lower level of functioning 4. availability of an extended kinship or communal network, so that family tension and burden are diffused, and there is often less negatively 'expressed emotion' in the family Dr Alan Rosen from Destigmatising day-to-day practices: What Can Developed Countries learn from Developing Countries? World Psychiatry 2006, 5: 21-24
  • 31. Government doesn’t always know best [The ill-fated Pruitt- Igoe housing project]
  • 35. Of 44 women working with WomenCentre: Managing a serious health condition 64% Finding a safer place to live 27% Living with childhood abuse 51% Didn’t finish their education 76% Recent experience of domestic violence 85% Fractured family (for those with young families) 66% Children experienced abuse (for those with children) 55% Living with a severe level of mental illness 55% Living with some mental illness 91% History of drug or alcohol misuse 52% Victim of crime 41% Perpetrator of crimes 39% Worried by debt or lack of money 65%
  • 36. Lots of services, no support no support
  • 38. Our hypothesis Poor mental health is a function of real poverty Multiple reinforcing erosion of personal resilience
  • 39. Service label N Urgent problem N Real need N Victim of domestic violence 55 Debt 50 Better self-esteem 64 Mentally Ill 39 Housing 48 To overcome past trauma 54 Criminal 35 Benefits 46 To manage current trauma 51 Poor Mother 33 Health 37 To stop being bullied 50 Misuses Alcohol 24 Rent 32 Guidance 50 Uses Drugs 22 Criminal Justice Advocate 24 Relationship skills 45 Violent 19 Dentistry 8 Mothering skills 26 Chronic Health Condition 16 Others 3 Others 1
  • 46. The relative risk by different environments
  • 48. We spend people’s money for them on things they wouldn’t really buy for themselves
  • 50. End of Disability Living Allowance • Cuts in Housing Benefit & Council Tax benefit • Reductions in Access to Work • Reduced eligibility for ESA • Increasingly intrusive testing by ATOS • Introduction of Universal Credit • Benefits reindexed to increase poverty • End of Independent Living Fund • Increased eligibility for social care • Increasing bureaucracy in social care • Reducing budget levels in social care • Return people to institutions and care homes • Increasing social care charges • Increased taxes, e.g. VAT, Council tax • and many, many other measures
  • 52. Mental health will deteriorate as 1.Inequality will increase 2.Stigmatisation will increase 3.Real poverty will increase
  • 53. Income inequality correlated with mental illness
  • 54. Some of this may be caused by practical aspects of poverty, e.g. debt: 45% of people in debt have mental health problems compared to 14% of people who are not in debt Developing unmanageable debt is associated with an 8.4% risk of developing a mental health problem compared to 6.3% for people without financial problems (i.e. a third higher) Relative risks for people in debt: alcoholism (2x), drug addiction (4x), suicidal ideation (2x) Martin Knapp, 2012 Tizard Lecture
  • 55. Some of this may be caused by psychological aspects of poverty, e.g. stigma: Chick Collins on the ‘Scottish Effect’
  • 57. Mental health spending itself may not decrease much, but this is not necessarily a good thing Rather than reducing inequalities itself, the initiatives aimed at tackling health or social problems are nearly always attempts to break the links between socio-economic disadvantage and the problems it produces. The unstated hope is that people - particularly the poor - can carry on in the same circumstances, but will somehow no longer succumb to mental illness, teenage pregnancy, educational failure or drugs. Wilkinson & Pickett, The Spirit Level
  • 61. Emerging themes in policy 1.Personalisation still has momentum 2.GPs may have more influence 3.LAs may have more influence 4.Social care will be slashed 5.PBR may make a difference
  • 63. Not gifts, but entitlements
  • 70. creative support for folk with complex needs
  • 74. Transportation 13% Crafts 2% Computers and accessories 12% Licenses/ certification 2% Dental services 11% Entertainment 2% Medication management services 8% Vision services 2% Psychotropic medications 8% Furniture 1% Mental health counselling 8% Non-mental health medical 1% Housing 7% Camera and supplies 1% Massage, weight control, smoking cessation 5% Education, training, materials 1% Utilities 3% Haircut, manicure etc. 1% Travel 3% Pet ownership 1% Equipment 3% Supplies and storage <1% Clothing 2% Other <1% Food 2% Total 100%
  • 77. integration through personalisation
  • 78. the need to change investment patterns
  • 80. rethinking outcomes LA Resources ‘Social Care’ Well-being? NHS Resources Medical services Clinical outcomes? Improved mental Welfare funding ‘what works’ health
  • 81. Rethinking commissioning • Total place - the Humpty-Dumpty challenge • Community sourcing - individuals, communities and local organisations • Innovate - you can’t move without changing • Measure - focus on what really matters
  • 84. WomenCentre: 1. Start with the whole woman - gendered and holistic 2. Offer a positive and comprehensive model of support - every woman is a one-stop-shop 3. Build a bond of trust - create the means for woman to do real work together 4. Be a new kind of community - women, working together, to improve lives and communities.
  • 85. A positive model of service... 5 and 1/2 levels of support
  • 86. Knitting together the bond of trust
  • 90. The future social worker?
  • 95. The victorious ‘Fabians’ We have little faith in the 'average sensual man', we do not believe that he can do more than describe his grievances, we do not think he can prescribe the remedies Beatrice Webb
  • 96. The defeated ‘Distributivists’ We say there ought to be in the world a great mass of scattered powers, privileges, limits, points of resistance, so that the mass of Commons may resist tyranny. And we say that there is a permanent possibility of that central direction, however much it may have been appointed to distribute money equally, becoming a tyranny. G K Chesterton
  • 97. Honour can exist anywhere, love can exist anywhere, but justice can exist only among people who found their relationships upon it. Ursula Le Guin
  • 98. 1. Human Rights - Better fundamental legislation 2. Clear Entitlements - Its ‘my budget’ 3. Avoid Crisis - Family support, lower thresholds 4. Full Access - No ‘special’ funding for services 5. Choice & Control - Freedom, capacity 6. Fair Incomes - Enough for citizenship 7. Fair Taxes - No ‘special taxes’, no charges 8. Sustainability - Rethink health/social care split
  • 99. If you want to get more involved 1.Join the Campaign for a Fair Society www.campaignforafairsociety.org 1.Subscribe to The Centre for Welfare Reform www.centreforwelfarereform.org 1.Twitter users can follow #fairsociety