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

Ideology: grassroots to mainstream & beyondThe 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.

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

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

Keys to Citizenship

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

Citizenship is the key

Murray’s Real Wealth Model

2. 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

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

[The ill-fated Pruitt-Igoe

housing project]

Government doesn’t always

know best

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%

Of 44 women working with WomenCentre:

Lots of services, no support

Multiple reinforcing erosion of personal resilience

Our hypothesisPoor mental health is a function of real poverty

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

The relative risk by different environments

We spend people’s money for them on things they wouldn’t really buy for

themselves

• 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

Mental health will deteriorate as

1.Inequality will increase

2.Stigmatisation will increase

3.Real poverty will increase

Income inequality correlated with mental illness

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 practical aspects of poverty, e.g. debt:

Some of this may be caused by psychological aspects of poverty, e.g. stigma:

Chick Collins on the ‘Scottish Effect’

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

Mental health spending itself may not decrease much, but this is not necessarily a good thing

4. Reforms

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

Not gifts, but entitlements

creative support for folk with complex needs

personalised support means...

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%

integration through personalisation

the need to change investment patterns

LA Resources ‘Social Care’ Well-being?

NHS Resources

Medical services Clinical outcomes?

Welfare funding

‘what works’Improved mental

health

rethinking outcomes

• 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

Rethinking commissioning

Localism anyone?

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 Forum Group

The future social worker?

Time to Campaign?

Fund Life

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 victorious ‘Fabians’

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

The defeated ‘Distributivists’

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

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www.campaignforafairsociety.org

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