Mind conferences 2009 presentations
A sense of purpose
Service users' conference, 25 to 26 November 2009
Main plenary presentation (PowerPoint file)
Session 1: Personalisation - Putting us first
Personalisation is the principle that everyone is entitled to the support they need to lead a full and rewarding life, and that this is best achieved by supporting service users to make choices about the services they use. Personalisation is promoted through the use of personal budgets, where a service user or a person nominated to manage the service user’s personal budget is given direct control over the money that is spent to care for them. Personal budgets are intended to provide choice and control to the service user, and enable a service user to spend their personal budget on preventative strategies rather than relying on traditional mental health services when in substantial or critical need. Personal budgets can also be spent on universal services, rather than specifically mental health services.
The policy of personalisation has been substantially driven by service users, and reviews of the evidence of what works in mental health treatment supports its effectiveness. It also has cross-party support, with the conservatives supporting more extensive personalisation implemented faster. However, in the current economic environment, the money available to support the approach is an issue.
A number of concerns were raised in the discussion following the presentation:
- Many delegates were concerned that personal budgets could endanger day-centres and other traditional mental health services. Service users dissatisfied with the service they were receiving would be encouraged to vote with their feet and take their funding elsewhere. Although this would benefit the individual and should help to raise the standards of care that service users receive, some delegates felt that if it put existing services in danger of closing it would actually reduce the choice of service users who wished to continue to use that service. Although the legislation is clearly written to prevent this situation some delegates were not convinced that traditional services would be safeguarded.
- Other delegates were skeptical about how the principle of personalization was being implemented. One delegate said that because CPAs were a social care assessment rather than a purely health assessment, he had been prevented from applying for a personal budget, with which he hoped to access exercise therapies. Another said that because counties were keen to get people off CPAs, the preventative aspect of personalization was weakened, as once a service user lost their CPA they would lose their right to a personal budget.
- Some delegates felt that personal budgets were too complicated for low payment assessments. At the other end of the scale people feared that if those with high payment assessments spent their personal budgets outside of traditional services it could threaten their funding.
Personalisation – Putting us First presentation (PowerPoint file)
Session 2: Money matters - a practical guide
- Delegates spoke about the relationship between money and mental health and said; money worries exacerbate mental health problems because of uncertainty and fear; creditors are very heavy handed and no account is taken of mental health problems; pre-paid token system is useful as it prevents people going into debt as easily but it is much more expensive; little information about what help is available; service users may need budget training to help them stay out of or manage their debt.
- Delegates thought the value of budgeting was in; survival; ensure basic needs are met before other things; develop discipline; tools to help when ill.
- Delegates also thought that other skills could help people budget effectively, e.g. being able to cook means you can reduce money spent on food and eat better. It is possible to save a lot of money on transport, clothes. When borrowing it is important to shop around, there are significant negatives to borrowing such as unknown spirals of debt, paying interest on credit, and dangers of borrowing from bad companies.
- Money is crucial to wellbeing, especially the independence it gives a person.
Session 3: Welfare reform - good, bad or ugly?
- Welfare reform intended to avoid people claiming Disability Living Allowance (DLA) whilst working. We are currently in the middle of a revolution in the benefits system that began in 2003 with Welfare Reform and the DWP’s Pathways to Work, initially targeted at people with mental health issues. Employment and Support Allowance (ESA) intended as additional support for people to get back to work. Delegates questioned whether claimants could afford to take jobs found through government schemes. If they take jobs they risk losing benefits, but if they accept them they risk damaging their health and losing work again. Delegates also pointed out that governments have changed the status of various claimants for political reasons to make unemployment figures appear better.
- There are various contradictions at the heart of welfare reform; the government say that most claimants want to work yet they are coercing people back to work; resources to help people back to work are invested in ESA rather than jobseekers allowance; performance culture at heart of medical assessment process; doctors should be impartial yet are incentivised to sign people back to work.
- DWP’s own figures show that reform has not reduced numbers of claimants. DWP research has shown only 1 in 10 people still in work 13 months after starting Pathways. Introduction of ESA coincided with recession. There has also been a reduction in benefits in real terms, and a centralized claiming process has made it more difficult to claim.
- ESA forms are very complex and date sensitive – these two factors are not always easy to cope with for claimants.
- Dealing with welfare reform; support with claiming process through peer groups, Mind carer organizations, welfare rights input, and social workers; representation and support through appeals process; training in advocacy; liaise with DWP to find out more.
Welfare reform - good, bad, or ugly (PowerPoint file)
Session 4: Social enterprise - 'Doing it for ourselves'
- UnLtd supports and funds people to get their ideas off the ground that will benefit their communities. The community is whatever a ‘social entrepreneur’ wants it to be. UnLtd focuses on your needs and social business ideas.
- UnLtd encourages social entrepreneurs to be proactive in developing their project and reach autonomy and independence as soon as possible. A business development manager is allocated to each client for ongoing support.
- Social entrepreneurs can’t pay themselves during project except as a volunteer. You must provide a new service or product, cannot duplicate existing provision. You must prove that there is a demand for the service, and it should provide learning and training for the entrepreneur and others. Grant can’t be used to fund international travel, but can fund equipment and some minor training. Detailed budgets must be submitted, only including things directly related to the project. Projects must be long term.
Social enterprise: ‘Doing it for ourselves’ (PowerPoint file)
Session 5: regional networking
The benefits of regional networking are; increase awareness of what’s happening around the country; enable collective action or collective views; sharing good practice; peer support; identifying local issues; reaching out to people in rural communities.
Delegates felt that regional networking in their areas were generally good but there were particular challenges, including; many networks not inter-connected and often there were too many events taking place; networking very effective in some areas and virtually non-existent in some cities; there was sometimes the will to do more regional networking but lacked resources.
- A popular suggestion was for organizations to use a shared calendar so they could coordinate events.
- In the midlands, the Centre of Excellence in Interdisciplinary Mental Health acts as a networking hub for many different kinds of mental health organizations.
Regional networking (PowerPoint file)
Session 6: advocating advocacy
- Delegates thought Advocacy should be about; challenging discrimination; showing choices; help for service users to access information; expressing views and concerns. Advocates must be independent, and is about supporting individuals to find where they can get information and help. It is not about giving advice, investigating complaints, or acting as a support worker, and is not about making decisions for someone.
- Peer advocacy is support from someone with experience of mental health problems. There is more of an equal relationship than other kinds of advocacy. Self-advocacy is speaking up for yourself. Independent Mental Health Advocacy (IMHA) helps in-patients understand the medical treatment they will receive, and the reasons for their treatment. Group advocacy includes service user groups, and allows the people meeting together to put forward shared views. Best Interest advocacy is when advocates represent what they feel would be in a person’s wishes. The IMCA helps vulnerable people in long-term accommodation in hospital or care homes. Legal advocacy is for people needing specialist legal knowledge. Community advocacy is often used for long term assistance, for service users to develop supportive relationships.
- Delegates thought that advocacy was important to help service users improve their self-esteem, and can be a very powerful mechanism to improve wellbeing
Where to with wellbeing?
Session 1: making the workplace mentally healthy
Session 2 : wellbeing in practice
Session 3: wellbeing project showcase - Ecominds
Mind’s 2007 report Ecotherapy looked at evidence that ‘green’ exercise and activities can benefit mental health. Growing Well is an Ecominds funded project in Kendal, Cumbria. It provides NVQ level 1, 2, 3 instruction, and maintains links with local primary schools. Programme of training and education especially for helpers with mental health issues. It runs as a cooperative venture with local farms and growers, operates as a charity and social enterprise with links throughout local area.
- It trains participating workers and encourages them to move into administration and board positions with the organization. A case study of Growing Well is Suzanne, who began volunteering who has now been asked to join the board. She said that Growing Well helped her to forget her problems and gain confidence in a therapeutic environment that gave her the opportunity to develop and recover well.
- Around 40 team members contribute to Growing Well, each individually supervised. Volunteers are asked to rate themselves subjectively on a scale at various times to measure and monitor their wellbeing and progress. Mental health issues are not normally directly addressed at Growing Well, but are acknowledged and understood amongst the team. Financially, an open door policy prevails and no time limits are put on placements.
Wellbeing project showcase - Ecominds (PowerPoint file)
Session 4: stigma, discrimination and wellbeing presentation
Session 5: real wealth of wellbeing
Delegates were asked what makes a ‘good life’ and answered; friendship; achieving goals; a sense of purpose; doing things you enjoy; having a comfortable environment; feeling appreciated.
- In 1946, WHO defined health holistically as a “state of complete physical, mental, and social wellbeing and not the absence of disease or infirmity”. The New Economics Foundation (NEF) considers wellbeing (the quality of a person’s experience of their lives) to be a dynamic process and their model includes enabling conditions such as health and the social environment (work status, family, physical health and social factors such as inequality), and psychological resources (resilience, self-esteem, optimism), to show what influences how well people function in the world. It includes dynamic feedback loops to show how life experiences can impact on wellbeing, for example experiencing positive emotions builds up psychological resources, and functioning well can improve a person’s enabling conditions.
- NEF research has shown the relationship between money and wellbeing. Rises in GDP improves people’s life satisfaction, but these gains quickly suffer from diminishing returns. This relationship is mirrored in studies of life satisfaction and household income in the UK.
- Levels of wellbeing in the UK are relatively low compared to other countries. The NEF explains this by highlighting the UK’s high level of materialism. Research has shown high levels of materialism are associated with anxiety, depression, unpleasant emotions, and lower self-actualisation, vitality, and pleasant emotions.
- Mind’s research has indicated a relationship between debt and mental health. Being in debt can cause mental health problems, but mental health issues can also lead to indebtedness. Mind is lobbying for; good practices among creditors and debt collection agencies; improved quality and accessibility of debt advice services; joined-up working between finance, advice, health, and social care sectors. Mind is working on bailiff regulation, creditor policies and practices, and supporting individuals.
- 5 ways to wellbeing i) connecting with other people ii) being physically active iii) taking notice and being curious about environment iv) lifelong learning v) giving, volunteering, helping others.
Session 5: real wealth of wellbeing (PowerPoint file)
Session 6: New Horizons and wellbeing
- New Horizons is a new style of policy-making, replacing the top-down target driven style of the National Service Framework. Most decisions will be delegated as locally as possible and it should lead to a new era of variation. Variation currently exists due to incomplete implementation of NSF, and in the likely future struggle to preserve resources for mental health, decisions will be made at the local level. It has two main tracks; improving the quality of services for people with mental health problems; focusing on wider determinants of mental health for the population through a focus on wellbeing.
- Mind’s focus groups of service users and non-service users found consistent reactions to New Horizons. Most associated wellbeing with an idea of balance and a holistic approach to life. Service user groups also highlighted the need to be understood. Reactions were mainly positive, particularly towards the 5-a-day approach to wellbeing. However, some service users felt that wellbeing wasn’t relevant to someone undergoing a crisis, but made more sense in terms of recovery.
- During the discussion, delegates raised a number of interesting points including;
i) The 5 ways to wellbeing are not useful for those with enduring and severe mental health problems, even if they were useful in a wider context. Some feared people with mental health problems who could not follow the 5 ways to wellbeing could be blamed for not helping themselves. The idea was suggested that those living with mental health problems need to connect with themselves before engaging with this approach.
ii) Other service users felt they were being shoehorned into a wellbeing agenda by LMAs and were concerned that they would be deprived of other services. Both speakers insisted that the wellbeing agenda should not be used to replace services.
iii) Some felt that wellbeing was being sold as a secret to happiness, and people should be more aware of the normalness of sadness, and the personal growth that is possible through feeling sad. Sadness is actually part of being healthy and having high wellbeing. Wellbeing is also about having resilience to hardship. Wellbeing should be about day-to-day maintenance, not a replacement for mental health therapies.
iv) Other delegates thought that the 5 ways to wellbeing missed the social aspect. One said that wellbeing is socially created and socially destroyed and that government paid little attention to cohesive communities, when it did it is very individualistic rather than enabling people to have an impact on their own future. Others felt that by concentrating on an individual’s paths to wellbeing it ignored the need for balance between the market economy and the social economy.
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