Whose choice? What choice?

Choice in Mental Health Conference 10am – 4pm Thursday December 11th 2003

Royal Armouries Leeds

Speakers:

Rosie Winterton MP, Minister of State

Cliff Prior Chief Executive of Rethink severe mental illness

Andrew Hughes – Mental Health Training

Dr Phil Thomas, Centre for Citizenship and Community Mental Health, University of Bradford

Fair for All Personal to You – Patient Choice Consultation

The extension of the principles of patient choice into mental health services will be very challenging for all concerned. This conference is intended to examine the implications of this development together with the new Mental Health Bill which we hope will be published by December.

Invited: a mixed and including patients/users and carers, service providers and voluntary organisations, managers and non-executives, Health Scrutiny Committees and other advisory organisations.

Choice in Mental Health

They ask how I want
The new buildings,
They put me on the User’s Group
We are holding a kitty, of £200,
And we’re installing a small
Hearing loop.
They tell me, to take empowerment,
They ask, how I want my cup of tea?
But the Stelazine –
Well I have no choice…
I have to take it at three.

Carol Batton

Fair for All Personal to You – Patient Choice Consultation

Sainsbury Centre for Mental Health – paper on Choice

Notes on the proceedings:

Group work – what choices would we want if we were mentally unwell?

Flip chart notes

Group1

• · Young people – Their choices vs. parents
• · Family choices vs. users generally
• ·Advance Directives (respect for)
• · Directional care from professionals :
  • Their choices
  • Training

· Detained patients

· Choices based on services available

• Home based treatments
• Local services ->travelling distances

· Enforcing choice in practice

• Eg. In training – eg. Professional accreditation
• Treatment options
• Quality standards in service specification
• · How do less articulate people exercise choice?
• · Choices vs. rationing eg reliance on carers
• · Choice to be expected not exception
• · Needs resources (some things might be changes of existing working methods, but that’s not enough)
• · Not waiting for breaking points – eg detention in hospital, carer breakdown, other crisis
• · Use of private sector long term/secure beds (away from home area)
• · Inpatient options still need to be available

· Is choice a good thing?

· Not either/or -> levels of choice based on capacity/setting.

Group 2

· Professionals

• ·Treatment (meds) (ie. to include control over care packages)
• ·Where (which area) to have treatment – good services are not always in your own area – freedom to go to where the best is!
• To include social care in the ‘mix’ of health
• Who has access to information?
• Diagnosis ?
• Local priorities – local service delivery needs
• Better and more early intervention services
• Alternative therapy (+ ways of care)
• A service that attracts the right staff (MOT. Com. Value)

Group3

• More information about treatments are care to allow informed choice
• Need information in suitable form – spoken, written, simple etc.
• May need to be given information more than once – over a period of days
• Need information about voluntary and self-help and user groups
• Need a place to go for information, not just Helplines etc.
• Need relevant information at the appropriate time
• Information needs to be “full”
• Would like to know which workers I will see, what type of worker, where, when
• Need to find ways to prevent loneliness, isolation, exclusion
• Need to know when service is restricted, eg. In rural areas
• More flexible benefit system
• Need to have enough money for ongoing living costs while in hospital
• Need clearer incentives to get back to work – eg. Appropriate types and hours of work
• Need assessment for Disability Living Allowance by doctor with mental health experience
• Need education nationally and locally including of employers to combat discrimination esp. at work
• Equity of access to social care eg. Between adults and older adults using day centre
• Access to direct payments including support to administer them
• Direct payments could be used for a wider range of services, including complementary therapy
• A right to choose the workers caring for you
• Need our workers to be working as a team to reach the same goals for us
• Confidentiality issues ie. Patient information being given to outside personnel
• Need our physical health cared for
• Need help to stay well, as well as get well: this means being part of healthy communities
• Need to know which services are valued – who monitors them?
• Need to be included in planning our own care
• Need to have an advocate available when needed
• Need to have an informed choice over a range of really useful services
• Advance directives can help people get the services they value; avoid those they don’t
• Advance directives can cover practical matters – who cares for dogs; who pays rent

Group 4

• Listened to and be heard
• Treated with respect
• Experience – recognition of broad spectrum
• Bottom up approach
• Work together with mutual respect/support
• Access to information – wide ranging – consideration as a whole person with culture and background
• Recognition of other strategies outside of traditional health services
• Right to choose a second opinion

Group 5

• Terminology needs to be easy to understand – importance of lay language to help understanding of information.
• Choice of professionals to see – same gender also how to choose the doctor you want
• Information on how to make a choice
• Knowing your rights to make a choice
• Whose responsibility will it be to educate patients and doctors on the choices available?
• Communication training for doctors and patients
• How do we empower patients?
• Continuity of care where possible otherwise if patient moves they have to change their psychiatrist
• Right to change psychiatrist if cannot work well with them.
• Choice of interview location , not necessarily outpatient clinic, home environment more relaxing, less stressful, hard enough to ask for help
• Threat of sectioning if there is non-compliance with treatments
• Advance statement/directives about treatment, who to be contacted when ill
• Inclusion of right to refuse treatment
• Personal comfort choices – in hospital, to choose what time to eat, when to have a drink etc need to find balance between “guarding and controlling + some normality for people who may self-harm
• Collaboration with medical professionals to bring about improvement e.g., GP training very limited
• Discharge planning to prevent discharge of patient back to family with no forewarning. Also need for family to acquire coping and understanding skills. Community mental health team could help with transition from hospital to home. Accommodation and housing is a huge issue – people do not get a choice of where to live.
• Who gets to choose?

Group 6

· Not wanted: can be in a state when can’t choose (people under enhanced care) Over reliance on medication

Wanted

• Treatment at home in a crisis instead of hospital
• A trained professional: under the Reform of the MHA where it will not necessarily be an Approved Social Worker who makes the application. ASW’s have dedicated post-qualifying training (currently 4 months), including a detailed study of the Mental Health Act, and formal assessment of their knowledge. They have expertise in co-ordinating assessments, in the process of conveyance to hospital and dealing with the family and social implications relating to detention or guardianship. Any other ‘Approved Mental Health Practitioner’ making an application for detention should be trained to the same degree. ASWs sometimes refuse to support an application for detention, but we are doubtful as to whether many nurses, OT or Psychologists working in the same team as the RMO would refuse to make the application. ASW’s are trained for this purpose and are ‘independent’ of the RMO.
• Focus on needs not diagnosis
• Advance directives
• Informed choice – what services are available – being confident that the decision one had made was based on good sound knowledge and information. A clear, understandable explanation of what choice was being offered and the effects/consequences of choosing one over the other.
• Wider range of different types of services
• Services available out of hours (funding for them)
• Crisis house
• Choice not to have a particular treatment
• Voluntary sector appropriately funded
• Choice vs. negligence (consultant responsibility)

Rosie Winterton

Treating this as part of the Big Conversation, having listened to what people said in their small groups: reminded the conference of the words in Clause 4 of the Labour Party constitution which were very relevant to discussions of social exclusion. A centralised approach had not delivered equality, and it was still much easier to access services, in mental health as elsewhere, for people who are well off.

There was still a need for more capacity in mental health services, but it was also important to improve responsiveness and respect for individuals. Keeping people in employment was very important for people with mental health problems. Going sick is an easier option, but highly damaging in the longer term.

The Social Exclusion Unit were doing work on stigma. There were still issues around the treatment of people from black and minority ethnic communities. People should be asked about their culture and language, and in the best services they already were.

Cliff Prior’s presentation

• Rethink: severe mental illness
• Working together to help everyone affected by severe mental illness, including schizophrenia, to recover a better quality of life.
• the charity for everyone affected by severe mental illness and their families
• a mass membership charity with a network of support groups
• the UK’s largest voluntary sector service provider in mental health helping 7500 people every day
• Choice, responsiveness and equity: Why a national consultation?
• Extend choice beyond elective care into services such as chronic conditions, primary care and maternity
• Work with patient groups….. to develop ‘radical proposals on how best we can empower patients in these and other areas’
• Enable patients, user groups and staff to contribute to the debate on how we take the next steps forward
• The questions:
  • What changes would have the most impact on improving the experience of health and social care for patients, users and carers?
  • What choices do users / carers want?
  • What information and support would patients/ users/ carers need to exercise these choices?
  • What changes in the system, or how people work, or communicate would be needed to create these choices and make health and social care more responsive?
• How could these choices be made fair for all?
• The consultation process:
  • Eight themes led by Task Groups
  • Local consultation led by Strategic Health Authorities
  • Open invitation to the public, staff, patients, users and carers Patient and professional organisations, the voluntary and independent sector
  • More than the brand of beans
  • Choice of what and how as well as Choice of when and where
• Broad themes: information, advice, advocacy
• access – convenient, easy, varied
• types of treatment
• support to live your life
• relationships and humanity
• elivering equity:personal view
• “Sure Start” style approach
• Target information and advocacy
• Prioritise deprived localities
• Prioritise excluded communities
• Dangers of school style choiceMental health areas: Information, advocacy, empowerment
• Access
• Options in a crisis
• Talking treatments
• Other treatment choices
• Informed choice of best fit medications
• Choice of professional
• Therapeutic relationships
• Social care options
• Employment and social inclusion
• High care inpatient and secure settings
• Drink and street drugs
• Carers
• Alternative approachesMental health ideas
• Talking treatments
• Informed choice of best fit medications
• Options in a crisis
• Access
• Choice of professional
• Information, advocacy and equity
• Therapeutic relationships
• Whole system change

  

Just one in 100 people said that they were satisfied with their quality of life

Three top themes from submissions on mental health

• “I want the choice to have talking treatments”
• “I want the choice to have a consultant and care coordinator I can communicate with”
• “I want an informed choice of the best medications for me”

• “would like to see doctor more often when in hospital”
• “to feel that he really cares and sees me as a person, not just a number in his book”
• “more staff, people who would be available out of hours”
• “GP who understands and is prepared to listen”
• “right to change if you cannot get on together”
• “as a woman, to see a female doctor”
• “because so much depends on communication, it has to be someone I can talk to”Main proposals:

1. A say in how you are treated- HealthSpace on epr
2. Wider range of services in primary care
3. Choice of when, where, how to get medicines
4. Booked appointments from choice of hospitals
5. Wider choice of treatment & care starting with maternity and end of life
6. Information – partnership
7. Mental health – needs more capacity

“The Mental Health Task Group produced a particularly comprehensive set of recommendations, which will help shape the next phase of action to implement the Mental Health National Service Framework and the work of NIMHE”

• HealthSpace
• Contact details for GP etc
• Appointment times & email reminders
• Personal health info eg blood group, weight, allergies, medication
• Faith, culture, diet
• Organ donation
• Birth plans
• Disability information
• Advance directives
• Communication & language
• Next of kin
• starting 2004, full implementation 2008
• Shared decision making:
  • Lara’s story:“In my dark times, when I feel that I control little of what is happening in my mind, it has been essential to my fragile self-belief that my astute, caring, listening GP has offered me full control of the ways forward. “I have always been consulted about any use of anti-depressants, with reasons given to explain why a particular medication is his anti-depressant of choice”
• Expert patient programme:
  • Blanche’s story:Blanche had suffered for many years from depression, diabetes and obesity, among other ailments. “On the Expert Patient Programme I could talk openly and honestly with people who understood. Although the course was very short, I am left feeling stronger and able to cope with whatever life throws at me. I also feel able to manage my chronic illnesses”
• Information
• Digital interactive TV
• NHS Direct and Thomson Local
• “Best Treatments” with BMJ
• Partnership with voluntary sector
• Kitemarked info & NHS Online
• “Your life” with Dr Foster in low income areas
• www.nhs.uk info on local services
• Navigator/guide/advisor roles
• Skills for shared decision makingChoice and equity
• Information and advice to excluded groups
• Mental health priorities:- women’s mental health- black and minority ethnic communities- people with learning disabilities
• Work with voluntary and community organisationsMaking it happen
• Shared, owned vision & values
• Investment and capacity growth
• Empowered staff
• High quality information systems
• Stronger patient voice
• Coherent incentives, regulation, inspection
• Considering both the positive and negative effects of your medication, on balance do you think it is helping you?
• If you have a problem with your medication, do you feel able to talk to the person who prescribes it?Key culture change drivers
• End of deference
• Consumerism
• Improved health outcomes- living with long term conditions
• Access to information
• Diversity
• I want it….
  • Absolutely safe
  • The latest innovation
  • Choice to try alternatives
  • Close to home
  • The very best experts
  • Integrated
  • Specialist
• I want….
  • To keep control of my own health and health care
  • Let the experts sort it out
  • To know people are there to care for me when I can’t
  • Change – but to what?
  • Limited value of “supermarket” consumerism in healthcare
  • Informed, engaged, involved patient
  • At the individual care relationship level for all
  • Backed up by organisational level for the few

  This is not soft stuff

• Length of life vs quality of life
• Pain vs side effects
• Hope vs risk
• Struggling to care for children
• Trying to keep a job
• It’s not optional
• The public will not carry on voting large amounts of tax to run the NHS unless the culture changes
• We are following, not leading, a culture change which has already happened among the public
• Making it happen
• “I don’t know where the path may lead, but I know that paths are made by walking”

 

Three paradigms of mental health care

• Medical: we can cure you/we can treat you
• Social: you have needs which we should meet
• Personal recovery: I have a problem, but with help I can grow beyond it

Clinicians’ priorities in psychosis

• stabilising mood
• ending voices
• stopping delusions
• reducing paranoia

Users’ needs identified in surveys

• somewhere to live
• money to live on
• something to do
• a social life
• someone to turn to
• respect and choice
• physical health care
• mental health care

The needs users actually express

• Example: somewhere to live:-
• to know someone is always there
• to have someone to come home to
• a place to bring my family to
• to learn to be independent
• to get accepted by the community
• staff to do the right things when I am ill
• someone there to stop me topping myself

More than services

Technical service improvements are necessary but not sufficient to improve quality of life

Key aspects of recovery oriented practice include:- information- access- listening

The Goal

Recovering a life which you find meaningful and fulfilling

Services and professionals are there to help people on that journey

Phil Thomas: Citizenship and Coercion

Slides based on work he did with Steve Hopker

Outline of talk:

Policy contexts – Choice and NHS Plan

Different types of Citizenship

Citizenship and Mental Health??

Conflicts at the heart of government policy

“But there is more to do to make services more responsive to people’s needs, to build an approach that treats the whole person rather than a collection of symptoms and that puts the patient in control. Only then will the NHS deliver the best possible care to everyone. Central to this is the extension of patient information, power and choice.”

Building the Best, p. 2

democratic ideals – the importance of accountability and the involvement of citizens

the importance of the social contexts of health care

citizenship

Citizen: Someone who is allowed to, and feels able to, participate fully in the society of which s/he is a member.

Someone who benefits from the rights, and carries the responsibilities available to other members of that society.

Democracy is impossible without citizens.

Citizenship: ‘Citizenship has its active modes (running for political office, voting, political organizing) and its passive modes (entitlement to rights and welfare)’

(Ignatieff, 1989, p. 63).

Two Aspects of Citizenship
Passive:	Active:
-Freedom from oppression and discrimination;	-Freedom to define one’s own identity
-Entitlement to benefits and support	-Being able to celebrate one’s identity

Loss of Citizenship: psychiatry’s understanding:

Effects of illness

Public ignorance: stigma

‘Care in the community has failed because, while it improved the treatment of many people who were mentally ill, it left far too many walking the streets, often at risk to themselves and a nuisance to others. A small but significant minority have been a threat to others or themselves.’ (Frank Dobson, 1998)

In future, compulsory treatment may also be provided in the community, as well as in a hospital. This new focus on flexibility, to meet individuals’ needs, will reduce the stigma and social exclusion that can result from detention for treatment in hospital.

JACQUI SMITH HILARY BENN DON TOUHIG

Ministerial Foreword: Consultation of Draft Mental Health Bill

‘The power of psychiatry is not simply located in coercion, but it also exists in terms of the possibilities it creates for us…there are negative and positive aspects of power. It is not simply a tool for the repression of individual subjectivity. It also generates subjectivities.’

Thomas & Bracken, 2003

Strategies for Living: A report of user-led research into people’s strategies for living with mental distress

Medical frameworks (Diagnosis)

Social (life circumstances)

Narrative (life history)

Spiritual and religious

Whose Choice? What Choice?

‘…work at ensuring choices and services genuinely reach everyone (sic), including the most disadvantaged and marginalised groups.’Building on the Best, p. 3

‘In future, compulsory treatment may also be provided in the community, as well as in a hospital.’

Consultation of Draft Mental Health Bill

The conflict at the heart of mental health policy
Government agenda around social control	vs ‘Citizenship’
Professional Interests power of professionals to define subjectivity	vs the rights of citizens to define their own understandings
Public Interests	vs Patients’ interests?

Coercive Care – A Healthy Option? – Andrew Hughes

Hello, pleased to see so many people, pleased to be here at all. They told me this would be a big show, lots of delegates.

I have used mh services on and off since I was 18, long time ago, my first section was written in Latin. In 80s when some Mind orgs passed for radical, I was involved at Oldham and then Rochdale and also in the regional set up for the NW. Anyone remember the regional network for the NW?

in 1988 helped set up DATA, the Distress Awareness Training Agency, a worker collective, then of 3 people, now of 6 people. Since March 2000, I have earned a living from mh work, training, research & consultancy

I want to talk about the Government plans for mh Act reform and the survey of the user movement reported this year, “On Our Own Terms”

Professor Appleby, the Czar, the mental health supremo, interviewed recently claimed that Labour since taking power in 1997 had supported the establishment of :

190 assertive outreach teams, 20 early intervention teams and 62 home treatment teams.

He further claims that millions in extra resources have been invested and more staff taken on:

– 25 per cent more consultant psychiatrists

– 7 per cent more mental health nurses over the past five years.

– He believes mental health is no longer an afterthought.

MH NSF was the first National Service Framework launched by the government and signalled a desire to push the care for people who experience distress to the top of the political agenda.

The Sun newspaper changed its stance over Frank Bruno. While the initial coverage was very shoddy, the about turn was brave by the Sun’s standards and to be welcomed, and influential. The very fact that large numbers of people were appalled by the Sun’s writing about a black Briton affected by mental health problems is encouraging itself.

There are more opportunities for involvement, for survivor training and research

However

but

on the other hand

looking at the flipside

reform of the mental health act: what a mess, have you been following that lark?

Czar Louis the first has said on quite a few occasions that the bill will be amended. What we don’t know is what will be in and what won’t be. The official line continues to be that the DoH has taken on board all of the responses to the bill blah and that it will be put to parliament when time allows.

Ms Winterton, the relatively new health minister, says she is still consulting. She is actually consulting far more than either of the previous two health ministers did, though how many service users she is consulting, I do not know!

I understand that judging by what Anthony Sheehan said at the Mental Health Today conference recently it looks like Community Treatment Orders, CTOs, are in the Government’s preferred menu still. Mr Sheehan was apparently trying to say there was just misunderstanding around CTOs and that the Department of Health had not explained them properly. Yeah right.

Let me tell you all you need to know about CTOs

CTOs

· The proposals will not work. The threat of compulsion will drive users away from services. What is needed is to create services which are attractive to users rather than finding new ways to force them to use services which don’t meet their needs.

· Medication is often ineffective or unnecessary. 20% of patients with schizophrenia will have only one episode of illness. 10 – 20% do not respond to medication.

· Psychiatric medication has serious side effects. Stopping or reducing medication can often be a rational decision and lead to an improved quality of life.

· A diagnosis of mental illness is not a good predictor of violence. Alcohol or drug abuse is a better indicator. People with mental health problems who do not abuse drugs or alcohol are no more likely to be violent than the rest of the population.

· In many of the high profile cases covered in the media, the person was asking for help before they killed someone, but never received it. Compulsory powers will not solve anything if treatment is not available.

· Experience shows that Compulsory Treatment Orders are more likely to be used against black and ethnic minority people than white people.

Alternatives to compulsory treatment in the community could include:

· A right to appropriate treatment for those who want it, so that people who need help are not turned away.

· Advance directives would allow people to say in advance what sort of treatment they want in a crisis. This addresses the needs of people who say that they are glad they were given compulsory treatment, even though they didn’t want it at the time.

Some of our movement’s smaller groups are being drawn into the NIHME “regional service user networks”. This will lead to a hierarchy in the movement where only one person represents a region, some of us may then dominate others. NIHME is a part of the Modernisation Department and so will have a duty to implement government policy.

I had the good fortune to take part in a national survey of the mental health service user movement in England.

The report of that project was published in May this year by the Sainsbury Centre for MH with the title “On Our Own Terms”

I was a member of the steering group along with a dozen or so other survivors from around the country. I also took part in the fieldwork gathering information from groups and individual members (We did not find many people in the fields so we started to visit them at user groups)

We had a postal survey with 318 groups responding. 25 groups provided members for in depth face-to-face interviews. Several national leaders and pioneers in the movement were also interviewed. All the work was carried out by users. I was later involved in analysing and compiling the material and in commenting on the final report and its publication

Some of the main findings were as might be expected; some were quite worrying; not many were encouraging

We discovered that women are well represented in the movement; Unfortunately, many women and black women in particular do not all believe the movement takes up their issues effectively and wholeheartedly. In many service user organisations black people are not well represented.

Existing service user networks have no mechanism to cooperate effectively at a national level. Most of our user groups are small, new and under resourced. Most groups have fewer than 50 members. 42% have been set up in the last 5 years. 75% of groups receive some external funding: for most that is between £20,000 and £40,000. Most also have to reapply for funding every year. Two-thirds of groups have a meeting place, but less than half have any office space

Brighter news included the fact that user groups take part in a wide range of activities beyond involvement and consultation, such as:

Fighting discrimination, supporting people in recovery and avoiding the need to use services, education and training, advocacy, campaigning, creative activities

Also there is an identifiable movement: there are common beliefs and understandings among the 300+ groups

These include:

an interest in forming closer links with the wider disability movement, particularly on issues such as benefits and discrimination

opposition to the widening of compulsion in any new Mental Health Act

Reciprocity

GENERAL PRINCIPLES

“3. The desire to promote the principle of non-discrimination on grounds of mental ill health has been fundamental to the Committee’s approach, and this has led to an emphasis on patient autonomy. The Committee recommends the inclusion within new legislation of statements of principle which will set the tone of the new act and guide its interpretation. Principles to be expressed include informal care, the provision of the least restrictive alternative compatible with the delivery of safe and effective care, consensual care, reciprocity, respect for diversity and the recognition of the role of carers.

RIGHTS WHICH FLOW FROM COMPULSION

6. The Committee recommends a number of specific rights to be accorded to patients under compulsion. In addition to the right to receive the approved care and treatment and ongoing care for a determined period, these rights would include, at the earliest possible opportunity, the right to advocacy, the right to information about and assistance with drawing up an advance agreement and, for those detained in hospital, the right to safe containment consistent with respect for human dignity.”