Topic Specific Information
Click on the headings to find out more.
Advance Directives
These are also referred to as advance statements, advance decisions or advance agreements: they are an expression of the wishes of someone who experiences mental illness about the type of care and treatment they would like to be provided if they become unwell. They can contain information about how they would like their family involved in their care and are useful because: • making an advance directive can help to ensure that the person gets the treatment of their choice if they have a further episode of mental illness. • they can also use an advance directive to state who they want to manage your benefits or direct payments and other practical matters if they become ill. However Advanced Directives are often not legally binding and can be overruled.
Factsheets Advance Statements – Planning For The Future
https://www.rethink.org/advice-and-information/carers-hub/planning-for-future-care-and-support/
Books Atkinson, J. M., Advance Directives in Mental Health: Theory, Practice and Ethics, 2007, Jessica Kingsley Publishers, London. Moncrief, J., Bentall, R. & Sanders, P., A Straight Talking Introduction to Psychiatric Drugs, 2009, PCCS Books, Ross-on-Wye.
Websites http://www.leedspft.nhs.uk/service_users/Advancestatements
Advocacy
Advocacy is an important process which enables people to say what they want, obtain their rights and gain the services that they need. All people are entitled to be in control of their lives but sometimes they may find themselves in a position where their ability to exercise choice or represent their own interests is limited. In these circumstances an advocate can help to make sure that your views are heard, respected and acted upon. Since April 2009 all patients who are detained under the Mental Health Act have a legal right to an Independent Mental Health Advocate (IMHA). IMHAs can help patients to find out about their rights and how to exercise them. Hospital managers should be able to provide information about their local IMHA service. The Care Act, which came into force in April 2015 for NHS England, also provides for advocacy for any eligible person undergoing a social care assessment or review. This includes carers, as well as people who are cared for. To be eligible you must have ‘substantial difficulty’ in understanding and engaging with the process and not have anyone who can help you to take part in the process fully, for example a trusted relative or friend. If you meet these criteria you may be eligible for an independent advocate, paid for by the local authority. This advocacy should be available at any point in the process, and your eligibility can be reviewed at any time.
Factsheet Advocacy
Websites
http://www.nhs.uk/conditions/social-care-and-support-guide/pages/advocacy-services.aspx http://www.voiceability.org/support-for-you/independent-mental-health-advocacy-imha
Benefits
The benefits system is complicated and the regulations change frequently, so most families will need expert help and advice if they are to receive their full entitlements. The Department for Work and Pensions (DWP) is the government department responsible for benefits. As well as mental health organisations, Citizens Advice Bureau welfare rights workers should be able to help. Some local authorities also have teams who are there to help you understand what you may be entitled to, and to navigate the benefits system. Make sure you start the process as early as you can as applications usually start from the date of your phone call to the Department for Work and Pensions (DWP). This is likely to generate a long application form or forms. Completing them can take time and patience; it’s useful to create a folder containing copies of all the necessary things you may need. This might include: • medical professionals contact details, such as Consultant, GP and Mental Health Nurse • your relative/friend’s National Insurance number • any letters sent to you or your relative/friend from the DWP/Job Chttp://ubd.spectrumdevelopment.org.uk/understandingbipolar.pdfentre • any reference numbers given to you by the DWP/Job Centre Always keep a copy of what you have sent and a log of all communications. If you are worried about missing a deadline for sending information back it is best to phone them in advance to notify them of this. Department for Work and Pensions (DWP) staff often know very little about mental health problems so it is important for each answer to be given carefully and with sufficient detail. Bear in mind that whilst you may want to focus on the positives, and care plans often do the same, the Department for Work and Pensions need to know about the ‘worst day scenario’. If in doubt seek help from an organisation such as the Citizens Advice Bureau or mental health charities’ advice services.
Websites
https://www.citizensadvice.org.uk/benefits/
https://www.gov.uk/browse/benefits
https://www.rethink.org/advice-and-information/
The following website asks you some questions and they can then guide you to information that may be helpful:
The following are some of the main benefits that are available in 2015/2016: a) Employment and Support Allowance (ESA) Currently, everyone who is unable to work because of sickness or disability can claim Employment and Support Allowance (ESA). Up-to-date information and contact details can be found on this
website: https://www.gov.uk/employment-support-allowance/how-to-claim
Personal Independence Payment
Up-to-date information and contact details can be found on this website: https://www.gov.uk/pip/how-to-claim
The Personal Independence Payment (PIP) has now replaced the Disability Living Allowance (DLA). People already on DLA are gradually being ‘migrated’ to PIP. When this will happen depends on which area of the country you live in. PIP is a benefit which is paid to help with costs that may be incurred due to ill health or disability, and which is paid in addition to other benefits. Currently, there are two components to this payment, ‘daily living’ and ‘mobility’, which can be paid at the standard or enhanced rate. Your entitlement is based on the amount of points you score on both components, so it is important to explain clearly how the mental health condition affects everyday tasks and activities. For some claims, a medical assessment may be required. This payment is not means tested, taxable, or dependent on the National Insurance contributions made by the claimant. The application form is very long and your relative would probably benefit from getting help with its completion as replies should focus on a ‘worst day scenario’ which can be hard to consider when you may be focussing on what your relative can do (rather than what they can’t do) to aid their recovery.
Websites
c) Carer’s Allowance Up-to-date information and contact details can be found on this website: https://www.gov.uk/carers-allowance-unit https://www.gov.uk/carers-allowance
If you spend at least 35 hours a week looking after someone who receives certain disability or illness-related benefits you may be entitled to Carer’s Allowance. There is a limit on what you are allowed to earn if you receive this benefit. Carer’s Allowance cannot normally be paid in addition to a state pension or other overlapping benefit such as contributions based Job Seekers Allowance; you usually get whichever one is the higher amount. Qualifying for Carer’s Allowance may entitle you to a ‘carer’s premium’ when certain income based benefits such as Income Support are calculated. ‘Carer’s premium’ may also entitle you to a discount on Council Tax and an increase in Housing Benefit, but you would have to contact your Local Authority about this. It’s important to remember that if you are paid this allowance, some of the benefits you or the person you care for may be reduced as a result.
d) Carer’s Credit Up-to-date information and contact details can be found on this
Website: https://www.gov.uk/carers-credit
Carer’s who are not entitled to receive Carer’s Allowance because they earn more than the limit may apply for Carer’s Credit. Carer’s Credit is a National Insurance credit that helps with gaps in your National Insurance record
e) Universal Credit Up-to-date information and contact details can be found on this
Website: https://www.gov.uk/universal-credit
In some areas, many different benefits, including Employment and Support Allowance (ESA), are being replaced by a single ‘Universal Credit’ benefit. This is being rolled out in phases across the country. As universal credit replaces many different benefits and covers lots of different circumstances, it is very complex and you may need to seek advice before applying.
Websites
https://www.rethink.org/living-with-mental-illness/money-issues-benefits-employment/universal-credit
Biographies/Accounts
Personal Biographies: Henry’s Demons: Living with Schizophrenia, a Father and Son’s Story. Patrick Cockburn and Henry Cockburn. 2011. Simon & Schuster UK. The Father I Had. Martin Townsend. 2008. Corgi. Accounts but more fictionalised Shock of the Fall. Nathan Filer. 2013. HarperCollins. Illustrated Mum. Jacqueline Wilson. 2000. Corgi Yearling, London.
Bipolar Disorder
Websites Bipolar UK have information leaflets, amongst other useful information, on Bipolar Disorder on their
Website: http://www.bipolaruk.org/.
They have produced an information leaflet for family and friends:
https://www.bipolaruk.org/FAQs/leaflet-information-for-family-and-friends
A report from the British Psychological Society entitled ‘Understanding Bipolar Disorder’.
https://www.lancaster.ac.uk/reacttoolkit/wp-content/uploads/2020/12/understandingbipolar.pdf
Books Coping with Bipolar Disorder: A CBT-Informed Guide to Living with Manic Depression. Jones, Hayward and Lam. 2009. Oneworld Publications.
Carer Breaks
Taking a break It’s very important that as well as caring for your relative, you also take care of yourself. Helping or caring for someone with a mental illness can be exhausting and can have a negative impact on your health and wellbeing too. Sometimes you or your relative may need a break. This is sometimes known as respite care. There are different ways this can work. Respite care could include: · You go on holiday, whilst someone else cares for your relative · Your relative goes on holiday or stays in a residential home for a short time · Your relative receives overnight care, so you can get some sleep There are also different ways to arrange respite care. You can · try to arrange some respite informally, for example with family and friends · you can ask your local authority to help arrange and pay for respite care · you can ask one of the charities who offer help with respite care As someone who helps or cares for someone, you are entitled under the Care Act 2014 to a carer’s assessment, which looks at what needs you may have to protect and enhance your health and wellbeing (please see the section on Legal Information for more details.) This assessment should include if you need respite care. If you’re not eligible for help to have a break from your local authority, there are charities who may be able to help. You can find a list of some of these charities here https://www.rethink.org/carers-family-friends/what-you-need-to-know/respite/useful-contacts
Websites
https://www.rethink.org/advice-and-information/carers-hub/respite-care/
https://www.carers.org/help-directory/respite-care
https://www.carersuk.org/help-and-advice/health/looking-after-your-health/taking-a-break
http://www.ageuk.org.uk/home-and-care/advice-for-carers/having-a-break/
Complaints
Some people using mental health services or their relative may wish to make a complaint about the service they received or perhaps because help was refused when they asked for it. You have the right to make a complaint about care or treatment provided by the NHS or your local authority. You can do this by using the NHS and local authority complaints procedure, usually accessed through the Customer Care department. You may also approach an advocate or the Patient Advice and Liaison Service (PALs). This is a service that can be found in every NHS Trust, and provides information, advice and support to relatives and service users. PALs would be able to guide you through the NHS complaints procedure. If a person’s mental health problems make it difficult for them to complain, then as a relative or friend you can make the complaint on their behalf. The organisation you are complaining about must agree that you are a suitable representative.
Websites
http://www.nhs.uk/chq/pages/1082.aspx?CategoryID=68
Confidentiality
This toolkit makes reference to problems relatives sometimes experience accessing information about their relative from mental health professionals. This is often due to mental health professionals being worried about breaking patient confidentiality when your relative may not give permission to share information with you. There is plenty of information the care team can share with you without breaking confidentiality, in order to support you in your caring role. Relatives may also fear that their own confidences might be broken, with information you share about your relative ‘in confidence’ being leaked to your relative and affecting your relationship with them. There is further information about confidentiality in Module 9 – Understanding Mental Health Services. The resources listed below give useful tips on how to address information sharing difficulties and provide a more detailed review of what rights carers have to access information in practice.
Factsheets Confidentiality Confidentiality and Information Sharing – For Carers, Friends and Relatives
Factsheet: https://www.rethink.org/advice-and-information/carers-hub/confidentiality-for-family-friends/
Websites
http://www.mindwisenv.org/index.php?option=com_content&view=article&id=167&Itemid=134
https://www.rcpsych.ac.uk/mental-health/translations/welsh/partners-in-care-campaign
Debt
A person with mental health problems can fall into debt. They may not be able to cope with bills or paperwork. They may not be able to control their spending. They could risk eviction if they don’t pay their rent/mortgage or miss out on income by not claiming any benefits they may be entitled to. They could be taken to the County Court to settle any dispute about money owed and how to repay it. There are various different ways in which their relative could help them in relation to their finances. Mechanisms to formally involve a relative are: Someone can be ‘appointed’ to deal with another person’s benefits, including making applications to the Department of Work and Pensions, if symptoms of mental illness prevent the claimant from doing so. The DWP can provide a leaflet called ‘Help with getting benefits for people with a disability or illness’ which starts this process. A ‘third party mandate’ can be useful as it enables a person who is unable to deal with his/her affairs all the time to delegate responsibility for payment of bills when necessary. They can provide authorisation for someone else to have access to their bank account and to sign cheques on their behalf. Someone who understands what it means can give a ‘Lasting Power of Attorney’ to another person which provides them with the legal authority to manage some or all of their financial affairs. A Lasting Power of Attorney can be provided when someone is ‘well’ but comes into effect when the person loses the ability to manage his or her financial affairs. If the person who ‘lacks capacity’ has a significant amount of money or property, and there is no other person who is willing or able to assist, it is possible to apply to the Court of Protection for the appointment of a Deputy. The Rethink national information and advice service staff can support family members through this process.
Factsheets Options for dealing with debt
https://www.rethink.org/advice-and-information/rights-restrictions/money-benefits-and-employment/
Going into hospital money matters
https://www.rethink.org/advice-and-information/carers-hub/going-into-hospital/
Websites Managing budgets and debt
https://www.rethink.org/advice-and-information/rights-restrictions/money-benefits-and-employment/
Direct Payments
Direct payments are local council payments for people who have been assessed as needing help from social services, and who would like to arrange and pay for their own care and support services. Until recently, direct payments have been available for disabled people and relatives, but not for people with mental health problems. However, this has changed, and people with mental health problems, and their relatives, are now being encouraged to consider applying for direct payments. Personal health budgets are also being introduced in some areas – where health and social care budgets will be ‘pooled’ and service users able to directly purchase both social care and elements of their health care too.
Factsheets Direct Payments
Websites
http://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/direct-payments http://www.nidirect.gov.uk/direct-payments-for-carers
How to apply for direct payments:
https://www.gov.uk/apply-direct-payments
Domestic Abuse and Violence
IF YOU ARE IN IMMEDIATE DANGER, CALL THE POLICE ON 999 Domestic abuse and violence can affect people from all walks of life. People with psychosis or bipolar can be victims or perpetrators of violence and abuse. Relatives and carers can also be perpetrators or victims of abuse. Abuse does not have to include violent acts. To find support for someone experiencing domestic abuse or for perpetrators go to
http://www.mind.org.uk/information-support/guides-to-support-and-services/abuse/domestic-violence/
DVLA (Drivers and Vehicle Licensing Agency)
It is important to know about severe mental illness and driving. If your relative is diagnosed with any of the conditions below and they intend to drive they must tell the DVLA. If they do not, they will not be able to drive legally and their insurance may not be valid. This could mean that if they have an accident and have not declared their illness, the insurance company may not pay up. The conditions include: · Severe uncontrolled anxiety. · Severe depression with marked psychomotor retardation and/or psychosis. · Bipolar disorders to include hypomania or mania. · Acute psychotic disorder. · Schizophrenia or other chronic psychosis. · Alcohol and/or drug misuse or dependency. Check the website for a up-to-date list of conditions as they may change:
https://www.gov.uk/government/organisations/driver-and-vehicle-licensing-agency
The DVLA does not need to be notified of a diagnosis of mild or moderate anxiety or depression, which is controlled and does not affect memory or concentration, or cause agitation, behavioural disturbance or suicidal thoughts. For information on how to contact the DVLA and provide details of your doctor or specialists please follow the link below. What your doctor or specialist says will influence the DVLA’s decision on whether your relative will be allowed to keep their licence. Very occasionally, DVLA may ask you to undergo a medical examination, which will be free, although you would have to pay any travelling expenses yourself. This process is called a medical enquiry.
Factsheets Driving and Mental Illness
Websites
https://www.gov.uk/browse/driving/disability-health-condition
The Future
Books Promoting Recovery in Early Psychosis: A Practice Manual. French, P., Smith, J., Shiers, D., Reed, M. & Rayne, M. (Ed.). 2010. WileyBlackwell, London. Staying Well After Psychosis: A Cognitive Interpersonal Approach to Recovery and Relapse Prevention. Gumley, A. & Schwannauer, M. 2006. Wiley & Sons Ltd., Chichester The Compassionate Mind Guide to Recovering from Psychosis. Lowens, I. 2010. Robinson Publishing. Enabling Recovery: The Principles and Practice of Rehabilitation Psychiatry. Roberts, G., Davenport, S., Holloway, F. & Tattan, T. (eds). 2006. Gaskell, London. Accepting Voices. Romme, M. & Escher, S. (eds). 1993. MIND.
Factsheets British Columbia Schizophrenia Society How to Help People Recovering from Psychosis: What Family and Friends Need to Know
http://www.bcss.org/documents/HTH/pdf/HowToHelpRecoveryfromPsychosis.pdf A brief factsheet with tips and what to look for following a return from hospitalisation.
Websites Intervoice – The international community for hearing voices – a forum for discussion, stories from service users, hearing voices and creativity, support groups, etc. with links to national networks and initiatives.
http://www.intervoiceonline.org/ WRAP – Mary Ellen Copeland’s Mental Health Recovery and WRAP® method of promoting recovery and wellness in service users. Her methods were developed for depression but are applicable to a wide variety of conditions. http://mentalhealthrecovery.com/
Early Intervention Services
Below are some websites with information about early intervention services, information about early detection and mental health sites for younger people.
Youth mental health site targeted at 16-25 year olds providing useful information and support for understanding and coping with mental health issues. www.youngminds.org.uk
Informative Canadian site with youth appeal and helpful explanations of psychosis. www.psychosissucks.ca
Oxford Health NHS Foundation Trust website www.am-i-ok.co.uk
Housing
Housing has an important part to play in managing mental health problems. Having safe and stable accommodation promotes recovery. A good care plan, that the care team supporting your relative produce in consultation with your relative (and maybe you) should address housing and employment support. Getting advice and support may also be important to understand the options, which will need to change over time.
Factsheets Housing Options for People with a Mental Illness https://www.rethink.org/advice-and-information/living-with-mental-illness/treatment-and-support/housing-options/
How Relatives Can Help
Websites Triangle of Care The Triangle of Care report offers key principles and resources to influence services and other people working with carers to be more effective in involving them within acute care. It hopes to benefit staff, service users and carers themselves. It discusses how carers are increasingly being recognised for their expertise and knowledge, and that they can be essential partners in the treatment and recovery process. The Triangle of Care report makes it even more important that carers are meaningfully involved in care and support planning, and offered the information and support they need to care safely and effectively. http://static.carers.org/files/caretriangle-web-5250.pdf
Books The Young Mind: An Essential Guide for Parents, Teachers and Young Adults. Bailey, S. & Shooter, M. 2009. Transworld (Bantam Press), London. The First Episode of Psychosis: A Guide for Patients and Their Families. Compton, M. T. & Broussard, B. 2009. Oxford University Press, Oxford. Disability Rights Handbook: A Guide to Benefits and Services for All Disabled People, Their Families, Carers and Advisers. Greaves, I. 2013. Disability Rights UK. The Recognition and Management of Early Psychosis: A Preventive Approach. Jackson, H. J. & McGorry, P. D. (ed.). 2009. Cambridge University Press, Cambridge. The Essential Carer’s Guide. Jordan, M. 2006. Hammersmith Press Ltd A Straight Talking Introduction to Caring for Someone with Mental Health Problem. Kilyon, J., Smith, T., Bentall, R. & Sanders, P. 2009. PCCS Books, Ross-on-Wye. The Carer’s Handbook: Essential Information and Support for All Those in a Caring Role. Matthews, J. 2007. How To Books Ltd., Oxford. Ramsey, R., Szmukler, G., Gerada, C. & Mars, S. Mental Illness: A Handbook for Carers. Ramsey, R., Szmukler, G., Gerada, C. & Mars, S. 2001. Jessica Kingsley Publishers, London
Websites The Citizen’s Advice Bureau website, providing answers to many frequently asked questions, e.g. benefits, the tax system, housing and the legal system.
Information and advice on dealing with debt and accessing assistance
Helplines Disability Benefits Helpline – 08457 123 456 The National Debtline – 0808 808 4000 The Money Advice Service – 0300 500 5000
Insurance
Most people need insurance cover at some point in their lives. People with mental health problems often find that the standard insurance policies that are offered (with package holidays for example) contain exclusions which may result in them not being covered should they need to make a claim under the policy. There are rules that insurance companies must follow and if they discriminate on grounds of disability then complaints can be made and they may be sued. Rethink has a list of insurers who will provide cover to people with pre-existing medical conditions:
Factsheets Insurance https://www.rethink.org/advice-and-information/rights-restrictions/rights-and-restrictions/insurance-and-mental-illness/
Jargon Buster
Click here for the jargon buster PDF
Looking After Yourself
Books Carers and Their Rights: The Law Relating to Carers. Clements, L. 2009. Carers UK. Stress Management: A Comprehensive Guide to Wellness. Charlesworth, E. A. & Nathan, R. G. 1997. Souvenir Press. Relaxation and Stress Reduction Workbook. Davis, M. & Eshelman, E. R. 2008. New Harbinger Publications Looking After your Future: A Self Study Pack for Carers Wanting to Enter Work or Learning. Dyer, A. 2008. HCS Publishers. Managing Stress for Carers. Edworthy, A. 2006. Cerebra. Anger Management: A Practical Guide for Teachers, Parents and Carers. Faupel, A., Herrick, E., & Sharp, P. 2010. David Fulton Publishers, London. The Little Book of Positive Thoughts for Carers. Munitich, B. 2009. www.youwriteon.com From the Heart: Voices of Leeds Carers. Scott-Melton, F., & Elleswei, R. 2007. Together: Working for Wellbeing. Families and Mental Disorders: From Burden to Empowerment. Sartorius, N. N., Leff, J., LopezIbor Jr., J. J., Maj, M. & Okasha, A. (eds). 2004. WileyBlackwell, London. One Day at a Time: Meditations for Carers. Stewart, D. M. 2010. SPCK Publishing.
Rethink’s online advice and information for carers.
https://www.rethink.org/advice-and-information/carers-hub/
Legal Information
England, Scotland, Wales and Northern Ireland have different legal and healthcare systems. Please be aware that not all pieces of legislation cover all parts of the UK. We can’t provide you with legal advice, but below are contacts for finding legal advice near you, and brief information on key pieces of legislation regarding mental health and caring for someone with a mental illness.
Finding Legal Advice It’s important when you seek legal advice that you ensure that the person you ask to help you specialises in the right area. Each solicitor will specialise in their own areas of law and not all solicitors know about mental health-related legislation. To find legal services in your area, you can visit the following law society websites and use their ‘find a solicitor’ search function. England and Wales:
http://solicitors.lawsociety.org.uk/
Use the ‘quick search’ tab to find solicitors near you. Enter your postcode and choose a legal issue from the drop down list. One of the options is Social Welfare, Health and Benefits. If you choose this you can then filter your results by ‘mental health’ to find solicitors with experience in the area of mental health. You can also use the ‘pro search’ tab for more options.
Scotland: http://www.lawscot.org.uk/find-a-solicitor/
Use the ‘find a firm’ search to find legal advice near you. You don’t need to know the name of a firm, just fill in your postcode or town and select an area of law from the drop down menu. One of the options is Social Welfare, Health and Benefits. If you choose this you can then filter your results by ‘mental health’ to find solicitors with experience in the area of mental health.
Northern Ireland: http://www.lawsoc-ni.org/solicitors-directory/
Use the search function at the bottom of the page to find legal advice near you. You don’t need to know the name of a solicitor or legal firm, just choose a category and a location.
Mental Health Act 1983 The Mental Health Act covers many different regulations. This includes when people can be detained against their will in order to be treated for a mental health problem. The Act is split into different sections, hence why people often talk about being ‘sectioned’. The code of practice for the Act was last updated in 2015. Another regulation that may be relevant to you is the definition of a ‘nearest relative’. ‘Nearest relative’ is defined quite rigidly in the Act, and may be a different person to who a person thinks of as their ‘next of kin’. It’s important to know who will be considered the nearest relative as they have special powers and rights under the Act. You can find more about how the ‘nearest relative’ is defined here:
You can find more information about the Mental Health Act 1983 on these
Websites:
https://www.rethink.org/living-with-mental-illness/mental-health-laws/mental-health-act-1983
http://www.mind.org.uk/information-support/legal-rights/mental-health-act-1983/about-the-mha-1983
http://www.mentalhealthlaw.co.uk/Mental_Health_Act_2007_Overview
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/417412/Reference_Guide.pdf
Section 117 Aftercare As well as covering regulations about when a person can be detained, the Mental Health Act 1983 also includes provisions for care after compulsory detention has ended. Some people who have been compulsorily detained for treatment may be entitled to free aftercare from both the NHS and social services, including anything they need to keep them well. This is known as section 117 aftercare. You can find more information on these
Websites:
https://www.rethink.org/living-with-mental-illness/mental-health-laws/section-117-aftercare
http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/mental-health-aftercare.aspx
Mental Capacity Act 2005 The Mental Capacity Act (2005) gives a legal framework for when a person can’t make decisions for themselves. A person may be considered to lack capacity to make some or all decisions either temporarily or permanently. The Act includes five key principles. These are: • It can’t be assumed that a person lacks capacity due to an illness or injury, it has to be proved that they lack capacity • A person must be supported to make their own decisions before staff decide they do not have capacity. Examples of this include using simple language or showing relevant pictures or treatment equipment to the person. • People have a right to make ‘unwise’ decisions that other people may disagree with, as long as that person has capacity. • The best interest of the person is paramount. Any decisions made or treatment given must be done in their best interests • Any limits placed on a person because they lack capacity must be the least restrictive option available. Other key parts of the Act cover: • Advance Statement of Preferences. This is a non-binding written statement, made when a person has capacity, that staff should take into account when making decisions for someone who doesn’t have capacity. • Advanced Decisions to Refuse Treatment (ADRT). A statement made to refuse specific treatments, made when a person has capacity. When an ADRT is drawn up correctly it is legally binding. • Lasting Powers of Attorney (LPA). LPAs are people appointed when a person has capacity, to act on their behalf if they lose capacity. The Mental Capacity Act brought in new regulations about how a person can appoint someone to act on their behalf. They are split into LPAs for welfare (health and wellbeing-related decisions) and for finance. Court Appointed Deputy. A person appointed by a court to make decisions for a person who lacks capacity. • Independent Mental Capacity Advocates (IMCA). Usually when a person lacks capacity, they have a friend or relative that staff can consult about treatment etc. If a person doesn’t have anyone, they may be entitled to an Independent Mental Capacity Advocate, who can represent the person’s best interests, but cannot make decisions. • Restraint. The Mental Capacity Act gives new regulations over when restraint can be used. • Deprivation of Liberty Safeguards. The Mental Capacity Act gives new safeguards over restricting a person’s liberty (freedom) when they don’t have capacity to consent or object. Other than circumstances covered under the Mental Health Act, staff now need to go through an official process if they want to restrict a person’s liberty. You can find more information on these websites: https://www.rethink.org/living-with-mental-illness/mental-health-laws/mental-capacity http://www.mind.org.uk/information-support/legal-rights/mental-capacity-act-2005/overview
Care Act 2014 Another key piece of legislation is the Care Act 2014. The Act brought in new duties and guidance for anyone involved with the care of people with long term illnesses, disabilities or other vulnerabilities. It spells out the legal duties of local authorities and any organisation contracted by the authority to provide services. This can include some NHS services. Key elements include: • How local authorities have to assess people’s needs and provide for them • Putting the needs of the person centre-stage • Clear guidance about how assessments should be done • Duties include assessing the needs of carers • There are new duties to provide information and advice, including advocacy if a person can’t advocate for themselves • New guidance for financing care, personal budgets and direct payments More information – Overview of Care Act 2014:
http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/Care-Act-2014-overview.aspx https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/365345/Making_Sure_the_Care_Act_Works_EASY_READ.pdf More information – Care planning and assessments including carer’s assessments: https://www.rethink.org/diagnosis-treatment/treatment-and-support/social-care-assessment-and-eligibility https://www.rethink.org/resources/c (look for Carer’s Assessments and Care Planning factsheet) https://www.rethink.org/diagnosis-treatment/treatment-and-support/cpa Your local authority may also provide information on their duties to you.
Mental Health (Care and Treatment) (Scotland) Act 2003 The Mental Health (Care and Treatment) (Scotland) Act 2003 is similar in scope to the Mental Health Act 1983 but is limited to Scotland. Please see this easy-read guide here https://www.gov.scot/publications/delegation-local-authority-functions-mental-health-care-treatment-scotland-act-2003-adults-incapacity-scotland-act-2000/
Human Rights Act 1998 The Human Rights Act means that all public bodies, including hospitals and social care organisations, have to respect people’s human rights. When a public body exercises their legal powers, for example by detaining someone under the Mental Health Act, they must do it in a way which respects people’s rights. The Human Rights Act is one way you can challenge what a public body does. For more information, please see the following resources: http://www.mind.org.uk/information-support/legal-rights/human-rights-act-1998 http://www.equalityhumanrights.com/your-rights/human-rights/what-are-human-rights/human-rights-act
Managing Mood Swings
The following books have information on managing mood swings:
Books Coping with Bipolar Disorder: A CBT-Informed Guide to Living with Manic Depression. Jones, Hayward and Lam. 2009. One World Publications. The Bipolar Disorder Survival Guide, Second Edition: What You and Your Family Need to Know. David J. Miklowitz. 2013. Tantor Media.
Websites For advice on risky behaviour in particular you can visit this Australian website http://www.bipolarcaregivers.org/supporting-the-person/supporting-a-person-with-mania-or-hypomania/dealing-with-risky-or-inappropriate-behavior
Managing Stress (Thinking Differently)
Websites:
http://www.freemindfulness.org/
Power of Attorney
A power of attorney is where your relative empowers you to act on their behalf with regard to some or all financial decisions. The person giving the power is called the ‘donor’ and the person receiving the power is called the ‘attorney’ or ‘donee’. Once a power of attorney has been given, the attorney will have a document to prove that they are authorised to deal with the donor’s financial affairs. A power of attorney can be ‘ordinary’ or ‘lasting’. An ordinary power of attorney cannot be made by someone without mental capacity. A lasting power of attorney gives legal authority to someone else to make decisions about another’s affairs once they lack the mental capacity to make these decisions. It cannot be used until it is registered with the Office of the Public Guardian. It is important to note that lasting powers of attorney can be given in relation to decision relating to personal welfare as well as those relating to finances.
Websites http://www.mentalhealthlaw.co.uk/Lasting_Power_of_Attorney https://www.gov.uk/power-of-attorney/overview http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/lasting-power-of-attorney.aspx
Psychosis
Books Coping with Schizophrenia: A Guide For Patients, Families, and Caregivers. Jones, S. and Hayward, P. 2004. Oneworld Publications. Madness Explained: Psychosis and Human Nature. Bentall, R.P. 2004. Penguin Books Ltd, London Early Intervention in Psychosis: A Guide to Concepts, Evidence and Interventions. Birchwood, M. J., Fowler, D. and Jackson, C. (Ed.) 2000. Wiley and Sons Ltd., Chichester Psychosis from the Horse’s Mouth. Edwards, K. 2007. Chipmunkapublishing Understanding Mental Illness: Recent Advances in Understanding Mental Illness and Psychotic Experiences. Division of Clinical Psychology. 2000. The British Psychological Society Films A Beautiful Mind (2001, Director: Ron Howard). Shine (1996, Director: Scott Hicks). An Angel at My Table (1990, Director: Jane Champion).
Websites The Royal College of Psychiatrists have an information section for parents, carers and anyone who works with young people with factsheets about psychosis. http://www.rcpsych.ac.uk/healthadvice/parentsandyouthinfo/parentscarers/psychosis.aspx
The following website was created primarily for family members and friends of people who have experienced psychosis with the help of researchers who work at the Institute of Psychiatry, Psychology & Neuroscience, part of King’s College London, and mental health professionals who work at South London and Maudsley NHS Foundation Trust.
http://www.mentalhealthcare.org.uk/about_this_site www.aminormal.org www.patient.co.uk A report from the
British Psychological Society entitled ‘Understanding Psychosis’. https://shop.bps.org.uk/understanding-psychosis-and-schizophrenia.html
Recovery
A paper from Implementing Recovery through Organisational Change entitled Recovery: A Carer’s Perspective by Karen Machin and Julie Repper.
http://imroc.org/wp-content/uploads/2016/09/4ImROC_briefing_Carers_ImROC.pdf
A paper entitled Carers and Support Recovery was commissioned by the Scottish Recovery Network and is the result of a long-standing project to investigate carers’ perspectives of recovery and experiences supporting recovery.
https://www.scottishrecovery.net/resource/carers-and-supporting-recovery/
The following websites have links to personal stories about recovery:
http://scottishrecovery.net/resources/?cat=58
http://www.recoverydevon.co.uk/recovery-stories
http://www.power2u.org/recovery-stories.html
Treatment Options
General Information on Treatment Options
Books First Episode Psychosis. Aitchison, K. J., Murray, R. M., Power, J. R. & Tsapakis, E. M. 1999. Martin Dunitz, London. A Straight Talking Introduction to Psychiatric Diagnosis. Bentall, R. & Sanders, P. 2009. PCCS Books, Ross-on-Wye. Master Your Mind: The Mental Health Guide. Burton, N. 2009. Acheron Press, Oxford. Systematic Treatment of Persistent Psychosis (STOPP): A Psychological Approach to Facilitating Recovery in Young People with First Episode Psychosis. Herrmann-Doig, T., Maude, D., & Edwards, J. 2003. Martin Dunitz, London. A Straight Talking Introduction to Psychological Treatments for Mental Health Problems. Pilgrim, D., Bentall, R. & Sanders, P. 2009. PCCS Books, Ross-on-Wye. Rutter’s Child and Adolescent Psychiatry (5th Edn). Rutter, M., Bishop, D., & Pine, D. (eds). 2010. London: Blackwell. Psychiatric First Aid in Psychosis: A Handbook for Nurses, Carers and People Distressed by Psychotic Experiences. Smith, M., Coleman, R. & Good, J. 2003. P&P Press.
Alternative and Complementary Therapies
Books Integrating Traditional Healing Practices into Counselling and Psychotherapy. Moodley, R. & West, W. 2005. Sage Publications Ltd., London. Complementary Therapies and Mental Health: Integrative and Alternative Recovery Methods. Nygaard, M. 2008. Verlag Dr. Mueller. Handbook of Complementary and Alternative Therapies in Mental Health. Shannon, S. (ed). 2002. Academic Press, London.
Websites An online database of complementary therapy practitioners from acupuncture to yoga; many complementary therapies are ideal for tackling stress and taking time out for yourself. www.naturalmatters.net
Art Therapies
Books Art, Psychotherapy and Psychosis. Killick, K. & Schaverien, J. 1997. Routledge, London. Drama, Psychotherapy and Psychosis: Dramatherapy and Psychodrama with People Who Hear Voices. Moreno, Z. & Casson, J. 2004. Brunner-Routledge, London.
Organisations The British Association of Arts Therapists – The professional organisation for Art Therapists in the UK. http://www.baat.org/ The British Association of Dramatherapists (BADth) – The professional body for Dramatherapists in the UK. https://badth.org.uk/ The British Association for Music Therapy – The organisation responsible for promoting and developing music therapy in the UK. They run a public information service on music therapy. http://www.bamt.org/ The Association for Dance Movement Therapy UK (ADMTUK) – Aim to further communication amongst dance movement therapists, students & practitioners. http://www.admt.org.uk/
Cognitive Behavioural Therapy
Books What Works with Children and Adolescents?’ – A Critical Review of Psychological Interventions with Children, Adolescents and Their Families. Carr, A. (ed.). 2000. Brunner-Routledge, London Person Based Cognitive Therapy for Distressing Psychosis. Chadwick, P. 2006. John Wiley & Sons Ltd., Chichester Mindfulness-Based Cognitive Therapy. Crane, R. 2009. Routledge, London. Mind Over Mood: Change How You Feel by Changing the Way You Think. Greenberger, D. & Padesky, C. 1995. Guildford Press, New York. The Case Study Guide to Cognitive Behaviour Therapy of Psychosis. Kingdon, D. & Turkingdon, D. 2002. Wiley Blackwell, London. Think You’re Crazy? Think Again: A Resource Book for Cognitive Therapy for Psychosis. Morrison, A. P., Renton, J., French, P. & Bentall, R. 2008. Routledge, London. Narrative CBT for Psychosis. Rhodes, J. & Jakes, S. 2009. Routledge, London. Back to Life, Back to Normality: Cognitive Therapy, Recovery and Psychosis. Turkington, D., Kingdon, D., Rathod, S., Wilcock, S. K. J., Brabban, A., Cromarty, P., Dudley, R., Gray, R., Pelton, J., Siddle, R. & Weiden, P. 2009. Cambridge University Press, Cambridge. CBT for Dummies. Willson, R. & Branch, R. 2006. John Wiley & Sons Ltd., Chichester.
Websites The website of the British Association for Behavioural and Cognitive Psychotherapies, providing information on available therapies, accessing therapies and an online search facility for finding a local therapist. www.babcp.com An informative website giving more detail on the Cognitive Behavioural Therapy Model – can be used in conjunction with; Greenberger, D. & Padesky, C., Mind Over Mood: Change How You Feel by Changing the Way You Think, 1995, Guildford Press, New York www.mindovermood.com
Diet and Exercise
Books Nutrition and Mental Health: a Handbook: An Essential Guide to the Relationship Between Diet and Mental Health. Crawford, M., Cadogan, O. & Richardson, A. Edited by Watts, M. 2008. Pavilion Publishing Ltd Patrick Holford’s Optimum Nutrition for the Mind. Holford, P. 2007. Judy Piatkus Ltd, London
Websites The website of the British Nutrition Foundation, providing information on healthy eating, nutrition in schools, allergy advice and nutrition and energy levels.
Sustainweb’s Food and Mental Health project has investigated the link between food and mental health. Their main publication (Changing Diets, Changing Minds: how food affects mental health and behaviour, 2007, Sustainweb) is available via their
Website:
https://www.sustainweb.org/publications/changing_diets_changing_minds/
Family Intervention
Books A Casebook of Family Interventions for Psychosis. Lobban, F. & Barrowclough, C. (eds). 2009. Wiley & Sons Ltd., Chichester. Psychosis in the Family: The Journey of a Psychotherapist and Mother: A Personal and Transpersonal Journey. Love, J. 2009. Karnac Books, London.
Medication
Guidance on obtaining the best fit medication is essential but can take time to achieve. Understanding the side effects of medication is also an important part of this process.
Factsheets Medication – choice and managing problems factsheet:
Antidepressants: https://www.rethink.org/advice-and-information/living-with-mental-illness/medications/antidepressants/
Antipsychotics: https://www.rethink.org/advice-and-information/living-with-mental-illness/medications/antipsychotics/
Mood stabilisers: https://www.rethink.org/advice-and-information/living-with-mental-illness/medications/mood-stabilisers/
Benzodiazepines: https://www.rethink.org/advice-and-information/living-with-mental-illness/medications/benzodiazepines/
Websites
The BNF provides UK healthcare professionals with authoritative and practical information on the selection and clinical use of medicines in a clear, concise and accessible manner. The site maintains pages on frequently asked questions and product information for a variety of medications www.bnf.org Supported by the United Kingdom Psychiatric Pharmacy Group (www.ukppg.org.uk) This website offers information on medication including side-effects, health warnings, frequently asked questions regarding medication and a facility for comparing the medications commonly used to treat various mental health conditions. www.choiceandmedication.org.uk The electronic medicines compendium (eMC) website provided by Datapharm Communications Ltd., aiming to improve public health and safety by giving information on medicines that is up-to-date, accurate and comprehensive. They work closely with the NHS, the pharmaceutical industry, patients and healthcare professionals to create simple and accessible medicines information services. www.medicines.org.uk
Books Doctoring the Mind. Bentall, R. 2010. Allen Lane, London. The Myth of the Chemical Cure: A Critique of Psychiatric Drug Treatment. Moncrieff, J. 2009. Palgrave Macmillan. Antipsychotics and Mood Stabilisers: Stahl’s Essential Psychcopharmacology (3rd ed.). Stahl, S.M. 2008. Cambridge University Press, Cambridge.
Understanding Mental Health Services/the Mental Health System
As mental health services can vary so greatly in how they work and what they offer, it may be best to look at the individual NHS Trust website for more specific information.
Books Mental Health Act 1983: Code of Practice (2008 Edition). Department of Health. 2008. The Stationery Office. A Consumer’s Guide to Mental Health Services: Unveiling the Mysteries and Secrets of Psychotherapy. Edwards, J. K. & Heath, A. 2007. Haworth Press, New York. The Prevention of Mental Illness in Primary Care. Kendrick, T., Tylee, A. & Freeling, P. (eds). 1996. Cambridge University Press, Cambridge. Learning About Mental Health Practice. Stickley, T. & Bassett, T. (eds). 2008. John Wiley & Sons Ltd, Chichester
Websites For more specific information on the following, please click on the links: Advance Planning:
https://emahsn.org.uk/images/Advance_Planning_for_people_with_Bipolar_Disorder_FINAL.pdf
Advocacy: http://www.advocacyforall.org.uk/careact.php
The Care Act: http://www.peoplefirstinfo.org.uk/money-and-legal/care-act-2014/the-care-act-an-overview.aspx
Mental Capacity Act:
http://www.nhs.uk/conditions/social-care-and-support-guide/pages/mental-capacity.aspx
Mental Health Act: https://www.rethink.org/living-with-mental-illness/mental-health-laws/mental-health-act-1983
Triangle of Care:
http://static.carers.org/files/caretriangle-web-5250.pdf