paths to personalisation
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PATHS TO PERSONALISATIONIN MENTAL HEALTH
A whole system, whole lie ramework
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4 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
THE NATIONAL MENTAL HEALTH DEVELOPMENT UNIT
The National Mental Health Development Unit (NMHDU) is the agency charged with supporting
the implementation o mental health policy in England by the Department o Health in collaboration
with the NHS, Local Authorities and other major stakeholders. Further inormation about the
NMHDU and its programmes o work is available at www.nmhdu.org.uk
NEW HORIZONS
Paths to Personalisation is aligned with the vision and recommendations o New Horizons,
a cross government mental health strategy, published in December 2009. New Horizons is a
comprehensive programme o action or improving the mental well-being o the population and
the services that care or people with poor mental health. It brings together organisations across
national and local Government, voluntary and statutory agencies, as well as local communities and
individuals to work towards a society that values mental well-being as much as physical health.
Further inormation is available at www.newhorizons.dh.gov.uk
DEPARTMENT OF HEALTH PERSONAL HEALTH BUDGETS
PILOT PROGRAMMEThe Department o Healths personal health budgets team works with 73 PCTs, in 66 sites,
who have provisional pilot status as part o the programme. Twenty o these sites have
been selected or an in-depth study, as part o a wider evaluation exploring the potential o
personal health budgets to benet dierent groups o people and how PCTs can make them
work. The pilot programme will run until 2012. Further inormation is available at
www.personalhealthbudgets.org.uk
DEPARTMENT OF HEALTH PUTTING PEOPLE FIRST NATIONALDELIVERY PROGRAMME
The Department o Healths Putting People First national delivery programme works with key
stakeholders across local government, NHS, the third sector and proessional and regulatory
organisations, to support the implementation o the shared vision o Putting People First (DH, 2007),
through a radical reorm o public services enabling people to live their own lives as they wish,
condent that services are o high quality, sae and promote their own individual needs or wellbeingand dignity. Further inormation is available at www.dhcarenetworks.org.uk/Personalisation
THE NATIONAL DEVELOPMENT TEAM ON INCLUSION (NDTI)
The National Development Team or Inclusion is a not or prot organisation concerned with
promoting inclusion and equality or people who risk exclusion and who need support to lead
a ull lie. We have a particular interest in issues around age, disability and mental health. The
NDTi was commissioned to write this ramework on behal o the Department o Health and
the NMHDU. Further inormation is available at www.ndti.org.uk
http://www.nmhdu.org.uk/http://www.newhorizons.dh.gov.uk/http://www.personalhealthbudgets.org.uk/http://www.dhcarenetworks.org.uk/Personalisationhttp://www.ndti.org.uk/http://www.ndti.org.uk/http://www.dhcarenetworks.org.uk/Personalisationhttp://www.personalhealthbudgets.org.uk/http://www.newhorizons.dh.gov.uk/http://www.nmhdu.org.uk/ -
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INTRODUCTION 4
Who and what is this ramework or? 4
What is personalisation? 5
A whole system, whole lie ramework or personalisation
in mental health 6
SECTION 1: 8
HELPFUL, PERSON-CENTRED SYSTEMS AND APPROACHES
The systems I use support me to make my own decisions. People
listen to me and treat me with respect.
SECTION 2: 10
INFORMATION AND ADVICE, PERSONAL MOTIVATION
AND SELF-HELP
I have opportunities or sel-help and taking control. I have
the inormation and advice I need to eel empowered and
make choices.
SECTION 3: 12
SUPPORT FOR MANAGING PERSONAL BUDGETS
All the things are in place that can help me comortably managethe resources allocated to me, in a way that suits me.
SECTION 4: 15
SUPPORT FOR CARERS
I get the support I need to carry out my caring role, stay well and
live my own lie.
SECTION 5: 19
FAIR ACCESS AND EQUALITY
Opportunities are available to me without discrimination
or unairness
SECTION 6: 22
CREATIVE COMMISSIONING
There is opportunity, choice and innovation in what is available
to support me and give me a good quality o lie.
SECTION 7: 27PARTNERSHIP FOR INCLUSION
My needs are met in a way that is easy or me. I get the support
I need to participate as a citizen and take advantage o the things
available to all.
SECTION 8: 33
PREVENTION AND EARLY INTERVENTION
I get help and advice about how to stay well. Support and help
are available to me and my amily at an early stage i I begin to
eel unwell or things go wrong.
SECTION 9: 35
GOOD LEADERSHIP FOR ALL
I can have a leadership role and there is good leadership
wherever it is needed.
SECTION 10: 37
WORKFORCE AND ORGANIZATION DEVELOPMENT
The people who are paid to provide me with support and
treatment have the right skills and approach and are available
when I need them.
SECTION 11: 40
STORIES AND PERSONAL ACCOUNTS
SECTION 12: 41
REFERENCES
SECTION 13: 43
OUTCOMES AND QUALITY FRAMEWORK
CONTENTS
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6 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
INTRODUCTION
WHO AND WHAT IS THIS FRAMEWORK FOR?
This guide has been produced to help all those involved understand how things willneed to be done dierently to make personalisation a reality or people with mental
health needs. This is a whole system guide, so hopeully it will give some inormation,
guidance and signposts or people, whoever and wherever they are. The guide provides
inormation about what personalisation means or mental health services and supports,
oers examples o what needs to be in place to make things work, and provides
pointers to good practice and sources o advice and inormation.
There should be something o interest or useul links to be ollowed up, or example or
people with mental health needs and carers (particularly i they are in expert partner
roles) health and social care commissioners, providers, practitioners, care co-ordinators
and sta rom all sectors universal services community groups senior managers
board and elected members enthusiasts, advocates and leaders. It is also intended
to help people look across the system to recognise all the things that need to t well
together in partnership or a personalised approach.
The ramework has been developed and tested with the help o an expert group,
including people who use or have used mental health services. It starts rom the point
o view and perspective o someone with mental health needs and considers the range
and nature o things that need to be in place. The rst person statements, ormed
with the help o the group, are designed to consider the question What helps to make
this happen? The group elt that this approach would help ocus attention on what
needs to be in place to achieve the right outcomes or people, and on peoples real
experiences o systems and services. These statements also provide a whole systemquality checklist or personalisation (See Appendix 1).
The Signposts part o each section provides links to urther reading, websites,
examples and urther resources.
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There has been a gathering policy momentum leading to local authority
and health service reorm. A undamental re-think o the relationship
between citizens and public services runs through, or example, Improving
the Lie Chances o Disabled People1, Our Health, Our Care, Our Say2,
Putting People First3, and NHS Next Stage Review4.
The main messages are very clear. We should expect a personalised
approach, which means a relationship with public services which
ensures that:
We are empowered to have more say and control in all aspects o
public lie and participate as active and equal citizens
We have maximum control o our own lives, including control o our
own health and health care
We are supported to live independently, stay healthy and recover quickly
We have choice and control so that any support we may need ts the
way we wish to live our lives.
One way o giving us more control over the support we may need is to
allocate an amount o money (a personal or individual budget or direct
payment) so that we can decide ourselves how it can best be used. (For
more inormation about personal budgetssee Section 3). Having access
to personal budgets has undoubtedly led to very positive outcomes or
some people. An Individual Budgets Pilot Programme (IBSEN) took place
in England in 13 local authorities and has now been evaluated. The
evaluation report5 ound that having an individual budget was associated
with better outcomes and higher perceived levels o control and peoplehad more positive aspirations or their lives. Specic benets or people
with mental health needs were reported. However, the report also
highlighted major barriers to take up or people with mental health needs.
Research on Direct Payments also shows that they are least commonly
provided to people with mental health needs6.
WHAT IS PERSONALISATION?
Direct payments or people with mental health problems: A guide to
action7sets out good practice in making direct payments more accessible
to people with mental health needs. This guide ollows on and places
personal budgets in a wider context.
Money by itsel does not guarantee choice or control. It is clear that i
opportunities are to be more generally available to people with mental
health needs and not just a battle won here and there (relying on good
luck and a ew right thinking people) there need to be radical changes
that will place personal budgets in the wider context o personalisation.
Personalisation means recognising and respecting us as individual citizens,
amily members and members o our community with the inormal
networks that provide most o our support, most o the time. It cannot
be achieved without an energetic and eective partnership approach
between and beyond health and social care. It requires partnership that
concerns itsel with improving the lie and health o all citizens, andremoving barriers so that there is access or all to activities, services and
opportunities. This is an approach requiring comprehensive cultural and
organisational changes to encourage creativity, innovation, positive risk
taking and to change the balance o power between citizens and public
services. The IBSEN evaluation reported cultural and organisational
barriers in these areas, particularly in mental health, that will need to be
addressed to make any real impact on the way many people with mental
health needs currently experience public services.
Personalisation? I know this is happening when I am treated with warmth, respect
and honesty when people listen to me, treat me as an equal, and support me andwhen I dont have to ght all the time to get what I want to help me recover and livemy lie the way I choose to.
Mental health expert by experience
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8 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
This guide describes the wide range o things that need to be in place
or a personalisation approach to be a common experience, not an
exceptional one, or people with mental health needs. It proposes a whole
system approach, looking at the way dierent elements and strands
o activity work together and impact on one another to achieve better
outcomes or people.
What people know and eel to be right sometimes gets lost in translation
when ltered through the systems set up, in good aith, to provide help
and support. However, it has always been the case that determined
individuals, sta and people using services, have managed to just get on
and make the right things happen. This oten involves working round
processes and systems and the prevailing culture in order to do something
dierent that meets an individuals unique and particular needs.
A whole system approach, looking at all the things that need to be
in place, does not mean that people should stop driving ahead or
individual successes while they wait or everything to be xed. It simply
acknowledges that we can only get so ar, or a limited number o people,
i we do not make progress on all the cultural and organisational changes
that need to take place so that everyone can benet as a matter o right
and common practice.
This ramework is only a guide and is not comprehensive. Like most
rameworks, there is not a perect t or all the sections, they are all
connected and there are overlaps. The aim o this ramework is to provide
a tool to start checking what needs to be in place or personalisation
in mental health, and planning what action can be taken to ensure
that it is. It highlights the need or rereshed and energetic partnership
and collaboration across the whole system. The ramework will be
urther developed to take account o learning rom the experience o
implementing personalisation as it progresses.
Anita Cameron
A WHOLE SYSTEM, WHOLE LIFEFRAMEWORK FOR PERSONALISATIONIN MENTAL HEALTH
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I am in control o the support I need to live my lie the way I want to.
What helps to make this happen?
A whole system ramework or personalisation in Mental Health
I have opportunities or sel-help and taking control.
I have the inormation and advice I need to eel
empowered and make choices
There is opportunity, choice and innovation in what
is available to support me and give me a good quality
o lie.
All the things are in place that can help
me comortably manage the resources
allocated to me, in a way that suits me.
My needs are met in a way that is easy or
me. I get the support I need to participate
as a citizen and take advantage o the
things available to all.
I can have a leadership role and there is
good leadership wherever it is needed.
Opportunities are available to me without
discrimination or unairness.
I get the support I need to carry out my
caing role, stay well and live my own lie.
The people who are paid to provide me with support
and treatment have the right skills and approach, and
are available when I need them.
I get help and advice about how to stay well. Support
and help are available to me and my amily at an early
stage i I begin to eel unwell or things go wrong.
Inormation and advice,
personal motivation and
sel-help
Creative Commissioning
Workorce and
organisation development
Prevention and
early intervention
Helpul, person-centredsystems and approaches
The systems I use support me to make my own decisions.People listen to me and treat me with respect.
Support or managing
personal budgets.
Good leadership or all
Fair access and equality
Support or carers
Partnership or inclusion
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10 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
From the very rst contact by phone, on line, personal
visit, or meeting the messages that individuals or their
riends or amily members receive will have an impact
on the way they eel about themselves and on the way
they engage with organisations and proessionals. A
personalised approach will be evident in the language,attitudes and behaviour on initial contact and in all the
processes that people go through. The simple test or this
is to ask How would I eel i this was what I, or a member
o my amily, experienced?
Person centred approaches were promoted through Valuing People
(DH, 2001)43 or people with learning disabilities. The guidance produced
to support the development o person centred approaches denes the
term as: activities which are based upon what is important to a person
rom their own perspective and which contribute to their ull inclusion
in society Person centred planning is a process or continual listening
and learning, ocusing on what is important to someonenow and in theuture, and acting upon this in alliance with their amily and riends.
(DH, 2001)43.
Putting People First3 highlights the intention or these approaches to be
used across the board and or Person centred planning and sel directed
support to become mainstream.
I have a good experience when I rst seek inormation, help or support.
I am treated in a respectul way that leads to the right outcomes or me.
People have a sense o being respected i they experience:
A recovery approach that treats people as equal partners with the hope
and expectation o a ullled lie
Assessment and sel-assessment that is a set o personalisation
principles, not just a document, and takes account o varied
experiences, backgrounds and complexity o need
Assessment that ocuses on what matters to people and what works
or does not work or them
Co-production as the everyday approach: this means people working
in partnership with their amily, carers and proessionals to plan,
develop, arrange or purchase the services and support that are
appropriate to them
Person centred planning and reviews that put people in control and
equip and empower them to make decisions about their own support
and recovery
People who genuinely listen and go at a pace that suits the person they
are supporting: this will be refected in outcomes and how close they
are to what people want or themselves
An integrated system that responds to peoples diverse roles and needs
(e.g. health, amily, parenting, relationships, housing, employment,
leisure, education) and does not only ocus on times when people
are unwell (For more detail see under Partnership section 7)
The right and appropriate support to help people be prepared and
ready to take control and to plan or their own recovery.
People I come into contact with have the right approach and skills
to treat me respectully, help me recover and live my lie the way I
choose to.
Examples o what needs to be in place to support this:
A culture that systematically promotes and nurtures the right
approaches and skills with all new sta routinely inducted into
person-centred approaches and person centred thinking
Senior management commitment and enthusiasm to get the
culture right
Clarity about resources or training in person-centred systems,approaches and person centred thinking (including or senior managers)
and or developing good inormation and communications
Learning and problem solving encouraged and built in to systems
Clear local and government support or innovation and creative use o
processes, practice and resources so that sta are condent that this
is a recognised and endorsed way o working (See also Workorce and
Organisation Development section 10).
SECTION 1
HELPFUL, PERSON-CENTRED SYSTEMSAND APPROACHES
THE SYSTEMS I USESUPPORT ME TO MAKEMY OWN DECISIONS.
PEOPLE LISTEN TO ME ANDTREAT ME WITH RESPECT
WHAT HELPS TO MAKETHIS HAPPEN?
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There is a planned and balanced approach
to crisis and risk that I eel condent in and
that does not undermine my sense o being in
control o my lie and recovery.
Getting the balance right between creativity,
personal control, aspiration and positive riskmanagement is a key challenge to address or
personalisation. Risk is something we all live
with every day and is an important part o
opportunity and change but responses to this in
services can sometimes result in over-restrictive
practices. On the other hand, signicant risk,
or example o sel-harm or harm to others,
needs to be acknowledged and worked with in
a responsible way.
Although the IBSEN evaluation5 o the Individual
Budget Pilots did not demonstrate any increased
risk to or by people using individual budgets,
it did report concerns raised by care, social
work and adult saeguarding sta around the
possible risks o nancial abuse, neglect and
physical harm. Balanced against this is the
evidence o people with mental health needs
using individual budgets reporting a higher
quality o lie and a possible tendency towards
better psychological wellbeing (SCIE, March
2009)8and evidence rom international research
that people using sel-directed support instead
o traditional services are generally more likely
to report improved outcomes and satisaction(SCIE, March 2009)8.
Examples o things that will help achieve
this balance:
Advance directive and crisis planning and
day to day person-centred risk management
that is taken seriously so that people are
condent that action will be taken with due
regard to their plans and wishes
Recognition that peoples needs are not
constant and any risk agreements should be
regularly reviewed and subject to change
Activity that promotes a positive risk tak ing
culture in organisations, or example:
involving people in developing a Choice,
Empowerment and Risk policy, training or
all, and support rom senior managers so that
sta eel condent about this approach
Sel-regulation, with investment in resourcesto oer peer support and share eedback
about, or example, peoples experiences o
providers and personal assistants
Involvement o people in setting up and
carrying out quality assurance activities
Sucient time spent with people to help
them design support that will be based on
their choices and wishes, whilst recognising
those risks that can be reduced
Acknowledgement o carers needs and wishes
and the sensitive balance o support or the
rights o all involved.
SIGNPOSTS
Care Programme Approach and Assessment
1. Wellness Recovery and Action Plan, A practical approach to recovery.
www.workingtogetherorrecovery.co.uk/Documents/Wellness%20Recovery%20Action%20Plan.pd
2. 3 Keys to a Shared Approach in mental health assessment, CSIP/NIMHE, 2008
www.3keys.org.uk
3. Re-ocusing the Care Programme Approach: Policy and Positive Practice Guidance , DH, March 2008.
www.dh.gov.uk/publications
4. Eective Care Co-ordination in Mental Health services: Modernising the CPA: A policy booklet.
(DH, 2000)www.dh.gov.uk/publications
Positive Risk Taking and Risk Management
5. DH, Independence, Choice and risk: a guide to best practice in supported decision makingDH, 2007
Best practice guide, learning and development materials, supported decision making tool, leafet or
people using services. http://socialcare.csip.org.uk/index.cm?pid=6
6. Person centred riskA course or senior managers, rst line managers, amily members and carers andsupport workers.www.helensandersonassociates.co.uk
7. Risk enablement and personalisation project. DH Social Inclusion [email protected]
8. Positive Risk Taking Policy: Gateshead Councils Community Based Services An example o a policy that
has been developed to ensure that there is a consistent approach to the identication, assessment and
management o risk across services.www.scie-socialcareonline.org.uk/prole.asp?guid=4225c224-
60eb-48e-837b-c6c44172cb80
9. Clinical Risk Management: A clinical and practitioner manual,Steve Morgan, Sainsbury Centre or
Mental Health, 200. www.scmh.org.uk/pds/clinical_risk_management.pdwebsite
Person-centred approaches
10. Person-centred thinking with people who use mental health services,Helen Sanderson Associates
with David Coyle, University o Chester (2005).www.helensandersonassociates.co.uk/PDFs/
MHminibookweb.pd
11. Our choices in mental health, CSIP A ramework or providers to extend choices and practical support.
www.mhchoice.csip.org.uk
12. Supporting People with Long Term Conditions(Re: Statement o values and principles o care
planning. P12).www.dh.gov.uk/en/Publicationsandstatistics/Publications/
PublicationsPolicyAndGuidance/DH_4100252
13. Co-production: an emerging evidence base or adult social care transormation: SCIE Research
Briefng 31,2009.www.scie.org.uk/publications/briengs/brieng31/index.asp
14. Website with support planning resources.www.supportplanning.org/MentalHealth/
http://www.workingtogetherforrecovery.co.uk/Documents/Wellness%20Recovery%20Action%20Plan.pdfhttp://www.3keys.org.uk/http://www.dh.gov.uk/publicationshttp://www.dh.gov.uk/publicationshttp://socialcare.csip.org.uk/index.cfm?pid=6http://www.helensandersonassociates.co.uk/mailto:[email protected]://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80http://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80http://www.scmh.org.uk/pdfs/clinical_risk_management.pdfwebsitehttp://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.supportplanning.org/MentalHealthhttp://www.supportplanning.org/MentalHealthhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100252http://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdfhttp://www.scmh.org.uk/pdfs/clinical_risk_management.pdfwebsitehttp://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80http://www.scie-socialcareonline.org.uk/profile.asp?guid=4225c224-60eb-48fe-837b-c6c44172cb80mailto:[email protected]://www.helensandersonassociates.co.uk/http://socialcare.csip.org.uk/index.cfm?pid=6http://www.dh.gov.uk/publicationshttp://www.dh.gov.uk/publicationshttp://www.3keys.org.uk/http://www.workingtogetherforrecovery.co.uk/Documents/Wellness%20Recovery%20Action%20Plan.pdf -
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12 SECTION 2: INFORMATION AND ADVICE, PERSONAL MOTIVATION AND SELF-HELP
I have the opportunity to improve my knowledge o my mental health
and sel care options.
Sel care means having the opportunity to be responsible or your own
health and to make the most o lie and eel ullled.
Examples o things that help with this:
Access to local Expert Patient Programmes. These are sel-managementcourses giving people the condence, skills and knowledge to manage
their condition and be more in control o their lives
Support to develop a personalised sel-care plan or support plan
Inormation about, and access to, tools and assistive technology
(such as touch sensors) that could help people sel manage
Health and social care policies and sta guides about sel-care
Promotion o the role that pharmacies can have in providing sel-care
support with managing symptoms and medication
Accessible inormation about mental health diagnoses and treatmentoptions is available and oered to all
Inormation about mainstream activities in the community is made
available at the same time as inormation about more specialist supports
and services.
I can easily nd the inormation I need about a wide range o things that
are available in my locality.
Some people will already be clear what they want to help them live their
lives and know where to nd it. Other people will need dierent kinds
o help and inormation to see what opportunities there are and what
options they might have beyond their immediate knowledge o services.
This might be about where to get help or to take up activities in the
wider community (such as leisure activities, employment, or learning).
The power to change things can be limited by lack o inormation. Even
i you are clear about what you want, it can be very time consuming
and exhausting searching or how and where to nd it. This is
particularly dicult or anyone who does not speak English, or who has
communication or literacy diculties (or more inormation see section
on Fairness and Equality section 5) Anyone working with people to
help them put together support plans will also need reliable, easy to get
at, inormation.
Examples o things that help with this:
Partnership work within local authorities, across library and inormation
services and social care services, to plan or and manage the inormationneeds o all
Websites designed specically to provide inormation or people putting
together support plans
Access to inormation technology and specic training and support
to use it
Dedicated sta who are trained and ava ilable to help people use
computers and access the internet
Support or local networks and peer groups or the inormal exchange
o inormationMeetings and discussion groups on a planned and continuous basis
not just one-o opportunities so that there is a regular opportunity
or people to ask questions and be given up to date inormation
Use o local radio, community broadcasting and satellite channels that
are designed or dierent communities and audiences
Inormation available very locally e.g in local shops, pubs and GP surgeries
Inormation related to times in peoples lives when help is needed
Involving people with mental health needs in the design,
implementation and evaluation o inormation services
Making sure that providers are clear about their responsibility to
provide inormation
Undertaking research into what really gets inormation to people
Co-coordinating and managing inormation and knowledge that is
held by service users, sta, organisations and communities.
SECTION 2
INFORMATION ANDADVICE, PERSONALMOTIVATION ANDSELF-HELP
I HAVE OPPORTUNITIESFOR SELF-HELP ANDTAKING CONTROL
I HAVE THE INFORMATIONI NEED TO FEEL EMPOWEREDAND MAKE CHOICES
WHAT HELPS TO MAKETHIS HAPPEN?
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Self care and self help
1. Sel Care Connect. A website with inormation on courses and materials, actsand gures and a support network. www.sel-careconnect.co.uk
2. For research evidence on sel care. www.dh.gov.uk/selcare
3. Common core principles to support sel care: a guide to supportimplementation, Skills or Care/Skills or Health, 2008. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505
4. Department o Health,Sel Care A real Choice: Sel-care support APractical Option (2005) Practical ideas and action on how to supportsel care. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717
5. The sel care challenge: A strategy or pharmacists in EnglandThe RoyalPharmaceutical Society o Great Britain (2006). www.rpsgb.org.uk
6. Inormation about the Expert Patients Programme. www.expertpatients.nhs.uk
7. Sel care training or people with bipolar disorderwww.md.org.uk. A peer ledsel care training programme to help people learn to take action to prevent orreduce the severity o an episode.
8. HealthSpace is a ree, secure online personal health organiser. It providesinormation to help people to manage their own health, store important healthinormation securely, or nd out about local NHS services. www.healthspace.nhs.uk/visitor/deault.aspx
9. HUBB ( Barking and Havering and Brentwood Mental Health User Group) havedeveloped Recovery Plan and Well Being Plan booklets and Recovery courses inpartnership with the local PCT. [email protected]
10. A voice and a choice: Sel directed support by people with mental healthproblems: A discussion paperRita K Brewis, In Control, 2007. www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GB
11.Sel-directed support or mental health service users in West Sussex: Project
Evaluation Report, Rogers R , 2007 West Sussex County Council/WestSussex PCT. www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-sel-directed-support-in-west-sussex.html
12.Mental Health and Personalisation Agenda: Chaos or empowermentA projectto keep people inormed and infuence the way change towards personalisationhappens in the North East. This website also has links to a range o resourcesabout personalisation. www.mhne.co.uk/pge.asp?id=40
Enthusiasts and advocates
13. The National Advocacy Qualication is a qualication that has been unded anddeveloped by the Department o Health, together with advocacy organisationsand commissioners over the past two years. The introduction o two ormso statutory advocacy, Independent Mental Capacity Advocates (IMCAs) andIndependent Mental Health Advocates (IMHAs) led to the recognition o theneed or greater ocus on quality and consistency across the advocacy sector.www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/
independant-mental-health-advocacy
14. Transorming adult social care: access to inormation, advice and advocacy,IdEA, 2009. www.idea.gov.uk/idk/core/page.do?pageId=9454439
15. A lesbian and gay, bisexual and transgender mental health advocacy service.www.pacehealth.org.uk/mental_health_advocacy/
16. Independent mental health advocacy: Guidance or commissioners NIMHE,2008. This guide outlines the statutory independent mental health advocacy roleand discusses good practice or IMHA services and recommended commissioningprocesses.www.mhact.csip.org.uk/silo/les/imha-guidance-or-commissioners.pd
17.Mental health advocacy or black and ethnic minority mental health usersand carers, 2002, Joseph Rowntree Foundation. www.jr.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carers
One stop shop and on-line information
18. Leicestershire County Council provides a website giving inormation to helppeople be independent and make their own decisions. The service includesa team to provide support and training or people with little or no previousexperience or particular diculties in using a computer.www.leicscareonline.org.uk
19. Shop4Support is a website that provides inormation or people developing theirown support plans and or those managing their own budgets. It is an internetmarket place with inormation about support providers and services with aquality rating and eedback acility or people using them. It also provides readymade systems or managing budgets etc. www.shop4support.com
Accessible information
20. The Association o Social Care Communicators aims to develop and improvecommunication practice. It has a useul website with practical inormation,regional groups, networks, and a newsletter and runs conerences.www.ascc.me.uk
TV, video and roadshows
21.Southwark TV: Web based community media or all including mental healthgroups. www.southwark.tv
22. Community TV: TrustOers consultation, training, acilitation and production.www.communitytvtrust.org
23.Social care TV: A broadband service on the SCIE website called Social Care TV,that has short videos relating to e.g. personalisation, dementia, mental health.www.scie-sctv.org.uk
24. NHS South East Coast regional roadshows. www.southeastcoast.nhs.uk/news/
Makingchoicespersonalisingcare.asp
SIGNPOSTS
There are people around who really want to
help me ull my dreams and potential.
Examples o things that help with this:
Enthusiasts, supporters and advocates who
are positive and have high expectations and
encourage people to be hopeul and see a
positive uture
Inspirational gures, community
entrepreneurs, mentors or leaders who
work actively in their communities and
organisations to promote mental health sel-
care and recovery
Systematic organisation development
programmes to promote a culture o positive
approaches to mental health.
http://www.self-careconnect.co.uk/http://www.dh.gov.uk/selfcarehttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.rpsgb.org.uk/http://www.expertpatients.nhs.uk/http://www.mdf.org.uk/http://www.healthspace.nhs.uk/visitor/default.aspxhttp://www.healthspace.nhs.uk/visitor/default.aspxmailto:[email protected]://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBhttp://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBhttp://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.mhne.co.uk/pge.asp?id=40http://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.idea.gov.uk/idk/core/page.do?pageId=9454439http://www.pacehealth.org.uk/mental_health_advocacy/http://www.mhact.csip.org.uk/silo/files/imha-guidance-for-commissioners.pdfhttp://www.mhact.csip.org.uk/silo/files/imha-guidance-for-commissioners.pdfhttp://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.leicscareonline.org.uk/http://www.shop4support.com/http://www.ascc.me.uk/http://www.southwark.tv/http://www.communitytvtrust.org/http://www.scie-sctv.org.uk/http://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.southeastcoast.nhs.uk/news/Makingchoicespersonalisingcare.asphttp://www.scie-sctv.org.uk/http://www.communitytvtrust.org/http://www.southwark.tv/http://www.ascc.me.uk/http://www.shop4support.com/http://www.leicscareonline.org.uk/http://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.jrf.org.uk/publications/mental-health-advocacy-black-and-minority-ethnic-users-and-carershttp://www.mhact.csip.org.uk/silo/files/imha-guidance-for-commissioners.pdfhttp://www.pacehealth.org.uk/mental_health_advocacy/http://www.idea.gov.uk/idk/core/page.do?pageId=9454439http://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.nmhdu.org.uk/our-work/improving-mental-health-care-pathways/independant-mental-health-advocacyhttp://www.mhne.co.uk/pge.asp?id=40http://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.communitycare.co.uk/Articles/2008/06/26/108631/personalisation-self-directed-support-in-west-sussex.htmlhttp://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBhttp://www.in-control.org.uk/site/INCO/Templates/Library.aspx?pageid=331&cc=GBmailto:[email protected]://www.healthspace.nhs.uk/visitor/default.aspxhttp://www.healthspace.nhs.uk/visitor/default.aspxhttp://www.mdf.org.uk/http://www.expertpatients.nhs.uk/http://www.rpsgb.org.uk/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4100717http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084505http://www.dh.gov.uk/selfcarehttp://www.self-careconnect.co.uk/ -
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14 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
A personal budget can come in dierent orms and
be managed in dierent ways. It can be a cash, direct
payment or notional budget. Someone can manage a
budget themselves, and employ their own sta and directly
purchase what they need, or someone else (or example
an individual, agency, trust or provider) can do this on their
behal. A personal budget may be unded solely rom alocal authority or rom a combination o sources such as the
Independent Living Fund or Supporting People. The NHS
can also allocate a notional personal health budget, which,
with changes in legislation, may in the uture also come as
a cash payment. However people choose to manage their
personal budget, the idea is that they are encouraged to put
together a support plan to meet the personal outcomes they
want in their lives, and have maximum control over how the
plan is put into action.
I get clear inormation that tells me what a personal budget is and the
dierent ways o using it.
I get support to decide which is the best option or me.
Lack o inormation, or conusing inormation, can stop people taking
advantage o opportunities or greater control. For example:
People are concerned because they believe that having a personal
budget means that they have to take on responsibility or employing
sta and managing money and they are thereore reluctant to take
up the oer
People are anxious that the change to a personal budget will upsetthe arrangements they already have that are working well and valued
by them
Language or cultural dierences are not taken into account and this
leads to misunderstandings.
Examples o things that help with this:
Clear inormation that is made available in ways and in places that suit
dierent people
Inormation and communication that makes clear:
the dierent ways in which it is possible or people to take control
over decisions about how money that is allocated to them is managed
and spent
that they do not have to directly manage the money themselves or
employ sta i they do not want to and that other people can do this
on their behal
Training and organisational culture which ensures that care
co-coordinators and sta are well inormed, supportive, positive and
hopeul about what people can do and achieve in their lives
A partnership between mental health services, the Direct Payments or
Individual Budgets team and learning providers to actively promote and
support the uptake o personal budgets
Training courses or people with mental health needs that helps them
to understand what is on oer with personal budgets, prepare and gain
condence to use them.
I get help with support planning i I want it and this includes support
with positive risk taking.
I get the support I need to turn the plan into reality.
When the money has been allocated and people have decided on a way
to manage it that suits them, the next stage is to explore how to make
best use o it to achieve what they want in their lives. Some people will
want to design their own support plans without help. For others, getting
the right kind o support to explore options, risks and make decisions
will be a vital actor in achieving positive outcomes. Some people will
be able to put their plans together quickly and some may want longer
to explore options. Support or planning, and or sorting out the things
that will make it happen (sometimes called brokerage) can come rom a
range o people, or example, rom amily or riends, care co-ordinators,
advocates, providers, independent brokers, or voluntary agencies.
(or more inormation about positive risk taking section 1)
SECTION 3
SUPPORT FORMANAGINGPERSONALBUDGETS
ALL THE THINGS ARE INPLACE THAT CAN HELP MECOMFORTABLY MANAGE THERESOURCES ALLOCATED TOME, IN A WAY THAT SUITS ME
WHAT HELPS TO MAKETHIS HAPPEN?
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16 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
SIGNPOSTS
1. Putting us First: A project about direct payments and individual budgets
or people who use mental health services. Norah Fry Research CentreUniversity o Bristol Contact: [email protected]/ pauline.heslop@
bris.ac.uk0117 331 0982
2. Mersey Care NHS Trust Individual Recovery Budgets Project. This
project was established in Early Intervention Services in Liverpool and
Seton, oering a virtual budget to support individuals to secure items
and services that enable people achieve recovery outcomes. Contact:
Carey Bamber, NW Joint Improvement Partnership: carey.bamber@
northwestjip.nhs.uk or Jenny Robb, Associate Director o Social Care,
Mersey Care NHS Trust:[email protected]
Training
3. A Learning journey to Direct Payments as part o sel-directed
support: Is it or me? Inormation and resources or trainers and people
in a position to make Direct Payments more accessible or people
with mental health needs. Includes workshops to give people the
inormation they need to assess whether or not they want to take up
the opportunity and how to prepare themselves i they do. Also training
the trainers or people who want to run these courses. NIACE (National
Institute o Adult and Continuing Education) Contact: susan.rees@
niace.org.uk 0116 204 4256
Support for managing personal budgets
4. Practical ino and publications on National Centre or Independent
Living website www.ncil.org.uk re: employing people, using
Direct Payments
5. In Control website or inormation on employing sta, and or stories
www.in-control.org.uk
6. Managing the Money: Resource Development options or personal
budgets (DH, 2008)Part o the Personalisation ToolkitAlso contains
inormation on User led organisations (In Appendix 1)www.toolkit.
personalisation.org.uk
7. Good practice in support planning and brokerage (DH 2008) Part o the
Personalisation Toolkit www.toolkit.personalisation.org.uk
8. Direct Payments or people with mental health problems: A guide
to action (DH) CSIP 2006 Contact: www.socialinclusion.org.uk/publications/Direct_Payments_web.pd
9. Barnsley Metropolitan Borough Council have developed a useul guide
to help people put together their own support plan. www.barnsley.gov.
uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20
planning%20guide%20version%203%2002.07.2007.pd
10. Outcome ocused reviews: A practical guide, DH, May 2009 www.
dhcarenetworks.org.uk/_library/Resources/Personalisation/
Personalisation_advice/OutcomeFocusedReviews2.pd
11. The independent broker role and training requirements: Summary
report, Skills or Care, 2009 www.dhcarenetworks.org.uk/_library/
Resources/Personalisation/Personalisation_advice/SC_ISB.pd
Research12. The implementation o individual budget schemes in adult social care
(2009) Research Brieng 20 Carr, S and Robbins, D Social Care Institute
or Excellence www.scie.org.uk
Positive Risk Taking and Risk Management
(See section 1 Helpul person-centred systems).
More inormation on DHs personal health budgets pilot programme can
be ound at www.dh.gov.uk/en/Healthcare/Highqualitycareorall/
Personalhealthbudgets/index.htm
mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]://www.ncil.org.uk/http://www.in-control.org.uk/http://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.scie.org.uk/http://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.dh.gov.uk/en/Healthcare/Highqualitycareforall/Personalhealthbudgets/index.htmhttp://www.scie.org.uk/http://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/SfC_ISB.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/OutcomeFocusedReviews2.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.barnsley.gov.uk/bguk/docs/Social%20Services/Individual%20Budgets/Support%20planning%20guide%20version%203%2002.07.2007.pdfhttp://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.socialinclusion.org.uk/publications/Direct_Payments_web.pdfhttp://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.toolkit.personalisation.org.uk/http://www.in-control.org.uk/http://www.ncil.org.uk/mailto:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected]:[email protected] -
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17
When someone becomes unwell it is very oten their
immediate amily or riends who provide much o the care
that helps them to recover, or who support them through
recurrences o mental illness throughout their lie. Anyone
could become a carer at any time during their lie.
The National Carers Strategy stresses the importance o support based on
personalisation principles and approaches. The strategy denes a carer
as someone whospends a signicant proportion o their lie providing
unpaid support This could be caring or a relative, partner or riend
who is ill, rail, disabled or has mental health or substance misuse
problems(DH, 2008)38.
Many people do not think o themselves as carers and thereore do not
seek support or are unaware o the support they are entitled to, including
nancial support. Carers themselves are twice as likely to have mental
health needs i they provide substantial care (Singleton et al, 202)36 (Hirst,
2004)39 An estimated 6,000 to 17,000 children and young people care or
an adult with mental health needs (Aldridge and Becker, 2003)37. Thoseproviding 35 hours or more o care a week and those in receipt o Carers
Allowance are more likely to be in the second lowest and middle income
bands than the general population and working carers are more likely to
be unqualied and less likely to hold university degrees than other people
in employment (DH, 2008)38.
The evaluation o the Individual Budgets Pilot reported that:
individual budgets were signicantly associated with positive impacts on
carers quality o lie (SPRU, 2008)5.
There is inormation relevant to carers throughout this document, but this
section tries to look specically rom a carers perspective.
I have easy access to inormation and advice to help and support me
as a carer.
Examples o things that help with this:
Inormation available very locally e.g. in local shops, pubs and
GP surgeries
Websites designed or carer inormation and support and access
to the internet (and i needed, training and support to use
inormation technology)
Local networks and peer groups or support and exchange o inormation
Well inormed sta who can give me the right inormation and advice,
or direct me to other sources
Health and social care telephone systems that are warm and responsive
and can answer my questions or quickly direct me to the right place.
(See also Inormation and advice section 2)
I I have to go through an assessment or sel-assessment process it is
easy to access and sensitive to my needs and wishes. I I am eligible,
assessment leads to the support I want in a way that suits me.
The contribution I make, and the inormal amily and riendship
networks that support me and the person I care or, are recognised in
assessment and support planning.
It is clear what can reasonably be expected rom me as a caregiver and I
have choices about how and when I provide care.
The processes I go through recognise that I can have a lie o my own
outside o my caring role.
Examples o things that help with this:
Assessment systems and processes that are based on a set o
personalisation principles, not just a document
Person-centred tools and approaches that put people in control,
recognise and respect the signicant role o carer and acknowledge
the support o amily members and riends
Being treated as an equal partner to develop support plans and
nd support
SECTION 4
SUPPORTFOR CARERS
I GET THE SUPPORT I NEEDTO CARRY OUT MY CARINGROLE, STAY WELL AND LIVEMY OWN LIFE
WHAT HELPS TO MAKETHIS HAPPEN?
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18 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
Being supported to look beyond health and social care to
consider things like being part o a community, leisure,
education, employment, aith and culture
Support or community participation
(See also Helpul, person-centred systems section 1 and
Partnerships section 7).
I get help and support when I need it and at times o crisis.
Examples o things that help with this:
Advance directive and crisis planning according to peoples
wishes, that people are condent will be carried out
Acknowledgement o carers needs and wishes and the
sensitive balance o support or the rights o all involved
Creative commissioning that allows or fexibility and choice
Carers control over how money allocated or their support
is spent
(See also Creative Commissioning section 6 and Helpul,
person-centred systems section 1).
I am given inormation about personal budgets. I get the
support that I need, and that suits me, i I take on the
management o a personal budget.
I am not put under pressure to take on management o a
personal budget i I do not eel comortable with this.
Examples o things that help with this:
Clear, accessible inormation in ways and places that suitdierent people
Clarity about the choices in managing a personal budget or
having it managed on your behal
Well inormed, positive sta who are sensitive to the right kind
and level o support needed to help people take control
Support or person centred care planning and nding what is
wanted, i this is needed
Support and training as a personal budget holder e.g. as an
employer, managing the money, nding the right support
(See also Support or Managing personal budgets section 3).
I can get breaks rom caring when I need them and in a waythat suits me.
In the consultation or the National Carers Strategy, carers made
it clear that the provision o breaks and replacement care were
among their highest priorities. Carers who do not have breaks
rom caring are ar more likely to have mental health needs
(Hirst, 2004)39.
Examples o things that help with this:
Senior management support or innovation to develop ways o
providing breaks in ways and at times that suit people
Programmes that actively promote inormation about breaks,
in ways that will reach people whoever, or wherever they are
Expert carer commissioners and consultation that impacts on
the way short breaks are provided and made available
Resources that local and health authorities, in partnership,
can invest in a range o ways to meet everyones short break
needs, in response to expert advice rom carers
Personal budgets or carers to decide on and arrange their own
ways o taking breaks
Investment in assistive technology such as Telecare (e.g.sensors placed around the home that trigger alarms connected
to help at the sign o unusual activity such as ront doors
opening at night).
I am not orced into nancial hardship as a direct result o
having a caring role.
Examples o things that help with this:
Inormation about benets that carers are entitled to is easily
available and there are programmes, campaigns and strategies
to make sure that inormation reaches people
Employers put into practice the requirements o the Work and
Families Act 2006 or fexible working or employees who care
or an adult
Improving inormation about fexible job vacancies via
Jobcentre Plus
Specialist training or Jobcentre Plus Advisers and or health
and social care sta
Funding or replacement care that will allow people to take
part in training and employment programmes
Return to work support
Inormation and support or employers to promote the positive
benets o employing carers.
I can continue my learning and personal development.
Examples o things that help with this:
Replacement care that people are condent in and eel
comortable with, so that they can participate in training
and personal development opportunities
Training and urther education opportunities that are designed
to be fexible and t in with caring responsibilities
Careers guidance and advice services to help carers
progress back to learning and work through skills and
condence building.
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I am able to stay well as a carer
Examples o things that help with this:
Regular breaks, a decent place to live and nancial security
Annual health checks or carers
National and local projects providing emotional support
or carers
Training and guidance or General Practitioners to help them
better understand the needs o carers
Making sure carers can easily access inormation relevant to
the needs o the person they are caring or and training to
help them in their caring role, i appropriate.
Peer support in the orm o local groups and networks and
the opportunity to meet new people
Prevention and early intervention initiatives (perhaps through
Local Area Agreements) to reach carers who may not be awareo what is available to support them in their caring role
Providing replacement care and nance or caring or carers
programmes local and health authorities in partnership
with the voluntary sector and local shops and services
(e.g. relaxation, therapy and exercise services, drop in centres,
meals out, carers cards that give concessionary rates in shops,
leisure services and or transport etc).
As a child, I am protected rom inappropriate caring and
have the support I need to learn, thrive and have a positive
childhood.
Examples o things that help with this:
Dedicated Young Carers projects that provide, or example,
evening clubs, weekends away, days out, holidays, someone to
talk to, inormation and advice
High quality targeted support or young carers
Support to have the time and space to learn and have riends
Training and awareness raising initiatives or general
practitioners and teachers
Whole amily approaches to support.
I am respected by proessionals as an expert partner.
Examples o things that help with this:
Support or involvementin consultation, including
replacement care
Flexible and innovative ways o including carers in consultation
and planning
Experts by experience paid as advisers and commissioners -
in local and wider strategic planning and decision making,
inspection and service design
Carers are able to explore and discuss their concerns in an
atmosphere o trust and:
given general actual inormation
helped to understand issues o condentiality and any
restrictions requested by the person they are caring or and
how to access help
oered a chance to see a proessional on their own
given condence to voice their views
encouraged to eel a valued member o the care team
oered an assessment o their own needs.
(See also under Creative Commissioning section 6).
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20 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
Information and websites
1. A list o local carer support groups, and links to their websites can beound on: www.mentalhealthcare.org.uk/carersupport/?id=158#Avon
2. There are many good local websites or mental health carers. An
example is the website or mental health carers in the Bolton area.
www.mentalhealthcarers.org
3. Princess Royal Trust website or young carers: www.youngcarers.net/
who_can_help_me/86/92
4. MIND Carers Factsheetgives inormation about the help and services
that are available or carers o people with mental health needs.
For more inormation on the emotional aspects o the caring role,
see Minds booklet How to cope as a carer. www.mind.org.uk/
Inormation/Factsheets/Carers/
5.Carers Direct
A website giving inormation, support and advice orcarers. Also gives inormation about local mental health services.
www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspx
6. Carers UK is a membership organisation o carers that campaigns
on behal o carers and provides inormation, support and advice.
www.carersuk.org/Aboutus/Howwehelp
7. Facts and statistics about carers. www.carersuk.org/Policyandpractice/
PolicyResources/Policybriengs/FactsaboutcarersJanuary2009.pd
8. Inormation about nancial support or carers can be ound on:
www.carersuk.org/Inormation/Financialhelp
9. Inormation about breaks or carers can be ound on: www.carersuk.
org/Inormation/Helpwithcaring/Takingabreak
10. Carers and condentiality in mental health: issues involved ininormation-sharingA leafet produced by the Royal College o
Psychiatrists and The Princess Royal Trust or Carers www.rcpsych.
ac.uk/PDF/Carersandcondentiality.pd
Policy and guidance
11. SCIE Guide 9: Implementing the Carers (Equal opportunities) Act 2004 ,
SCIE, 2007. Gives quick and easy access to inormation that aids the
implementation o the act, including research, practice examples and
urther inormation. www.scie.org.uk/publications/guides/guide09/
les/guide09.pd
12. Carers at the heart o 21st century amilies and communities: a
caring system on your side, a lie o your own Department o Health,
2007. www.dh.gov.uk/en/Publicationsandstatistics/Publications/
PublicationsPolicyAndGuidance/DH_085345
13. Department o Health website: Carers This section o the DH website
is aimed at health and social care proessionals in the statutory and
independent sectors who work with carers. It contains inormation on
Government guidance and regulations aecting carers, details o the
current carers grant and other relevant inormation on carers policy.
www.dh.gov.uk/en/SocialCare/Carers/index.htm
14. Frequently asked questions about the Work and Families Act
2006 can be ound on: www.carersuk.org/Newsandcampaigns/
makeWORKwork/WorkandFamiliesActFAQ
Projects
15. Partners in Care Partnership between The Royal College o Psychiatrists
and The Princess Royal Trust or Carers to highlight the problems aced
by carers o people with dierent mental health needs and learning
disabilities, and encourage partnerships between carers, patients and
proessionals. www.carers.org/articles/partners-in-care,264,CA.html
16. My care A project or young carers o parents with mental health
needs. Mental Health Foundation and The Princess Trust or Carers.
www.mentalhealth.org.uk/our-work/children-and-young-people/
mycare/?locale=en
17. Employers or Carers is relaunching as a membership orum
or employers, oering a range o support rom inormation on
good practice to training and consultancy. www.employersorcarers.
org/Home
Training courses for carers
18. Caring with condence A programme that provides training or carers,
empowering and enabling them. It inorms people o their rights, the
services available to them and develops their advocacy skills and their
ability to network with other carers to support their needs.
www.dh.gov.uk/en/SocialCare/Carers/DH_075475
SIGNPOSTS
http://www.mentalhealthcare.org.uk/carersupport/?id=158#Avonhttp://www.mentalhealthcarers.org/http://www.youngcarers.net/who_can_help_me/86/92http://www.youngcarers.net/who_can_help_me/86/92http://www.mind.org.uk/Information/Factsheets/Carers/http://www.mind.org.uk/Information/Factsheets/Carers/http://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspxhttp://www.carersuk.org/Aboutus/Howwehelphttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Information/Financialhelphttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.dh.gov.uk/en/SocialCare/Carers/index.htmhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.carers.org/articles/partners-in-care,264,CA.htmlhttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.employersforcarers.org/Homehttp://www.employersforcarers.org/Homehttp://www.dh.gov.uk/en/SocialCare/Carers/DH_075475http://www.dh.gov.uk/en/SocialCare/Carers/DH_075475http://www.employersforcarers.org/Homehttp://www.employersforcarers.org/Homehttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.mentalhealth.org.uk/our-work/children-and-young-people/mycare/?locale=enhttp://www.carers.org/articles/partners-in-care,264,CA.htmlhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.carersuk.org/Newsandcampaigns/makeWORKwork/WorkandFamiliesActFAQhttp://www.dh.gov.uk/en/SocialCare/Carers/index.htmhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_085345http://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.scie.org.uk/publications/guides/guide09/files/guide09.pdfhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.rcpsych.ac.uk/PDF/Carersandconfidentiality.pdfhttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.carersuk.org/Information/Helpwithcaring/Takingabreakhttp://www.carersuk.org/Information/Financialhelphttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Policyandpractice/PolicyResources/Policybriefings/FactsaboutcarersJanuary2009.pdfhttp://www.carersuk.org/Aboutus/Howwehelphttp://www.nhs.uk/carersdirect/Pages/CarersDirectHome.aspxhttp://www.mind.org.uk/Information/Factsheets/Carers/http://www.mind.org.uk/Information/Factsheets/Carers/http://www.youngcarers.net/who_can_help_me/86/92http://www.youngcarers.net/who_can_help_me/86/92http://www.mentalhealthcarers.org/http://www.mentalhealthcare.org.uk/carersupport/?id=158#Avon -
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21
SECTION 5
FAIR ACCESSAND EQUALITY
OPPORTUNITIES AREAVAILABLE TO MEWITHOUT DISCRIMINATIONOR UNFAIRNESS
WHAT HELPS TO MAKETHIS HAPPEN?
There have been some positive developments in
ensuring equality and air access in health and social
care services, supported by legislation, but recent
evidence shows that we still have some way to go.
Some examples o health and social care inequalities
have been evidenced or black and ethnic minorities
(DH, 20079 DH, 200810) lesbian, gay and bisexualpeople (CSCI, 2008)12, disabled people (CSCI,
2009)13. and people with mental health needs and/
or learning disabilities (Mencap, 2008)14, (Disability
Rights Commission, 200615) Some o the barriers to
equality that these studies identiy are, or example,
physical access, communication, stigma, and low
expectations. People with mental health needs are also
likely to experience higher levels o deprivation and
poverty (Thornicrot, 1991)16 and have a very high risk
o ailing to nd and retain employment (Oce or
National Statistics, 2003)19. All aspects o the ramework
outlined in this guide would need to be in place in
order to ensure air access and equality and improve
opportunities and outcomes or people with mental
health needs, but this section deals with some specic
equality issues.
My cultural background and communication needs are taken into
account in assessment and sel assessment and support planning.
Enough time is given to me so that I can explain my needs properly,
or or a amily member or advocate to explain them on my behal.
There is continuity in the contact I have with proessionals and I
dont have to keep explaining things over and over again.
Examples o things that help with this:
In health and social care assessments a whole lie approach
is taken, which includes, or example, taking into account
the importance o culture, aith, relationships, amily, caring
responsibilities, a decent place to live, nance and employment,
social and leisure activities
There is a streamlined approach to person centred inormation thatmeans people do not have to keep telling their stories over and
over again
Availability o interpreters, guides and advocates, including
dedicated time slots where interpreters are on hand
Flexibility in appointment systems to refect an understanding
that things may take longer i there are language or
communication dierences or i people have diculty in
speaking or expressing themselves
Opportunities or people to nd out about and easily access
English or speakers o other languages courses
Dedicated training or proessionals in working with language and
communication dierences and working with interpreters
Drop in acilities where people can get inormation in a range o
ormats and languages and check inormation they have received.
There are no barriers to access and the quality o the services I am
oered is the same or me as or everyone else.
There is a good choice o opportunities and services that take
account o my particular needs.
Examples o things that help with this: Inormation in dierent orms and rom dierent sources (more in
ino section 2)
Dedicated teams, and voluntary groups that speak a range
o languages and actively work locally to improve access and
outcomes (or example to employment and nancial advice) and
also work with health and other sta to increase awareness and
understanding o cultural and other dierences
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22 PATHS TO PERSONALISATION IN MENTAL HEALTH A whole system, whole lie ramework
Access to an employment adviser and to schemes like
Pathways to Work (more ino on partnership section 7)
Anyone who is eligible or access to public unding or services
is oered the opportunity to have a personal budget
Promotion o inormation about personal budgets through
local radio, community broadcasting and satellite channels that
are designed or dierent communities and audiences
Access to inormation technology and specic training and
support to use it
Availability o specialists with training and understanding o
special needs
Local organisations working with prisoners with mental
health needs - or example, providing the opportunity
to access training to talk about their experiences, so that
proessionals and services can have a better understanding
and be more responsive
Innovative approaches to involving people in planning and
development, designed by people who use or have used
services or example, community events run by local people
The involvement o mental health service user experts in the
commissioning, contracting and procurement process
Good, relevant data collection to inorm commissioning,
including what is working and what is not working or people
Specic equality targets in commissioning and contracting,
including equality principles as part o the criteria or
evaluating tenders.
Support and development o user led services (more ino in
the creative commissioning section 6)
Dedicated action in helping people to recruit personal
assistants who can meet cultural, linguistic and religious
requirements or example, advertising campaigns via local
and community specic media
Flexibility in the limitation in Direct Payments o payment to
relatives (but ensuring that assumptions are not made that this
might be the only option or some people)
PCTs working with local authorities through local strategic
partnerships and local area agreements to tackle wider social
issues impacting on health and well being such as housing and
employment as addressed within PSA 16.
I get a air choice and opportunities are available to me even
though I live in a rural area.
About 9.5 million people live in rural areas in England and this
is a growing number. There are particular diculties or people
living in rural areas, such as variability in provision, stigmatisation
and isolation, rural racism poor transport and housing poverty
(SCIE, 2007)20.
Personal budgets could provide an answer to some o the
diculties that people who live in rural areas have in nding
the right help and support to live their lives. However, thereneeds to be a recognition that health and social care policies and
programmes must recognise and address rural circumstances
and ensure equitable outcomes in rural areas (Commission or
Rural Communities, 2008)21.
Examples o things that help with this:
Geographical and community specic promotion o personal
budgets, and the provision o the right advice, advocacy and
support to take advantage o them
Inormation made available locally or example, in local
shops, GP practices, or via church and parish magazines
Good consultation and direction rom people in rural areas
about what is needed and what will work
Community development and practical support or the
development o local clubs and activities
Community transport schemes
Creative use o mobile services (e.g. mobile libraries) and o
local venues (e.g. lunch clubs in local pubs)
Market development and support or small, local voluntary
groups and social enterprises
Systems and services that can be fexible and adapt to
local circumstances
Good contingency planning or the management o crisis and
i things go wrong.
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23
SIGNPOSTS
Equality in health and social care and beyond
1. Will community-based support services make direct payments aviable option or black and minority ethnic service users and carers?
Dr Ossie Stuart, Social Care Institute or Excellence, 2006, London.
www.scie.org.uk
2. Delivering Racial Equality website: In January 2005, the Department o
Health published a ve-year action plan, Delivering Race Equality (DRE) in
Mental Health Care. DRE aims to help mental health services provide care
that ully meets the needs o BME patients and build stronger links with
diverse communities. www.actiondre.org.uk
3. Lakhani,M (2008) No Patient Let Behind: how can we ensure world class
primary care or black and minority ethnic people? London: Department
o Health. www.dh.gov.uk/en/Publicationsandstatistics/Publications/
PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_
FILE&dID=165661&Rendition=Web
4. Race or Health (2006) Towards Race Equality in Health: a guide to policy
and good practice or Commissioning Services. Manchester: Race or Health
www.raceorhealth.org/storage/les/Race_or_Health_Commissioning_
Guide.pd
5. MIND website with inormation about mental health discrimination
and how to challenge it. www.open-up.org.uk/resources
6. Vision and progress: Social inclusion and mental health. www.
socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pd
Local services
7. Health and Advice Links services based in GP surgeries in Tower Hamlets and
Hackney oer advice on a wide range o issues such as housing, debt, and
employment.
The services are managed by Social Action or Health, a community
development charity that works alongside marginalised local people and
their communities. It operates mainly in East London with sta recruited
rom local people trained to work with their community in their mother
tongue. www.sah.org.uk/sah_php/networks.php?gi_session_name=gi_
session_49d0e28dbc3a
8. Sharing Voices in Bradord (SVB) A community development charity that
works with black and ethnic minority communities to provide culturally
sensitive mental health services. www.sharingvoices.org.uk
9. Rural Emotional Support (REST) service, Staordshire. This is a service run by
a voluntary organisation providing emotional support and practical help or
people living in agricultural communities. www.staordshirementalhealth.
ino/details.asp?CourseID=104
Access
10. Department o Health Equal Access FrameworkPart o the Personalisation
Toolkit. www.toolkit.personalisation.org.uk
11. Inormation about rights to access, treatment and support. www.
equalityhumanrights.com/en/yourrights/rightsindierentsettings/
Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20health
12. Newman J, Hughes M (2007)Modernising Adult Social Care Whats
working? London DH. www.dh.gov.uk/en/Publicationsandstatistics/
Publications/PublicationsPolicyAndGuidance/DH_076203
Rurality
13. Manthorpe J, Stevens M (2008) The personalisation o adult social care in
rural areas, Cheltenham: Commission or Rural Communities.
www.ruralcommunities.gov.uk/les/CRC%2078%20Adult%20Social%20
Care.pd
14. Bowden C and Mosley M (2006) The quality and accessibility o services
in rural England: a survey o the perspectives o disadvantaged residents
Wolverhampton, ADAS. www.dera.gov.uk/rural/pds/research/quality-
accessibility-services-rural-eng-report.pd
15. Rural Emotional Support (REST) service, Staordshire. This is a
service run by a voluntary organisation providing emotional support
and practical help or people l iving in agricultural communities.
www.staordshirementalhealth.ino/details.asp?CourseID=104
http://www.scie.org.uk/http://www.actiondre.org.uk/http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_FILE&dID=165661&Rendition=Webhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_FILE&dID=165661&Rendition=Webhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_084971?IdcService=GET_FILE&dID=165661&Rendition=Webhttp://www.raceforhealth.org/storage/files/Race_for_Health_Commissioning_Guide.pdfhttp://www.raceforhealth.org/storage/files/Race_for_Health_Commissioning_Guide.pdfhttp://www.open-up.org.uk/resourceshttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.sharingvoices.org.uk/http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.toolkit.personalisation.org.uk/http://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.defra.gov.uk/rural/pdfs/research/quality-accessibility-services-rural-eng-report.pdfhttp://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.ruralcommunities.gov.uk/files/CRC%2078%20Adult%20Social%20Care.pdfhttp://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_076203http://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.equalityhumanrights.com/en/yourrights/rightsindifferentsettings/Healthandsocialcare/Pages/Accesstoservice.aspx#Mental%20healthhttp://www.toolkit.personalisation.org.uk/http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.staffordshirementalhealth.info/details.asp?CourseID=104http://www.sharingvoices.org.uk/http://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.safh.org.uk/safh_php/networks.php?gi_session_name=gi_session_49d0e28dbc3afhttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.socialinclusion.org.uk/publications/NSIP_Vision_and_Progress.pdfhttp://www.open-up.org.uk/resourceshttp://www.raceforhealth.org/storage/files/Race_for_Health_Commissioning_Guide.pdfhttp://www.raceforhealth.org/storage/files/Race_for_Health_Commission