2011

Brent Mental Health User Group and London Health Programmes

Wellbeing Toolkit

Brent Mental Health User Group (BUG) Merlin House 122-126 Kilburn High Road London NW6 4HY

This Wellbeing Toolkit is one of the implementation tools created as part of the London Health Programmes Mental Health Models of Care Project aiming to improve access to services for individuals in crisis as well as those dealing with mental health issues long term

Background to the Wellbeing Toolkit About the Wellbeing Toolkit and what is included This Wellbeing Toolkit has been developed together with those involved in the Service User Panel as part of the London Health Programmes Mental Health Models of Care Project. This project created models to facilitate appropriate provision of services to individuals needing to use services in crisis – including where they might not need psychiatric input but signposting to other resources to resolve issues which are contributing to mental health issues – and to those dealing with long-term conditions. The latter model aims to facilitate collaborative working between primary and secondary health – as well as social care – services placing individuals at the centre. The Wellbeing Toolkit is one of the implementation tools created as part of this project. It incorporates a number of elements, including a template to be used in comprehensive crisis planning and an example of the kind of information that an individual might want to include in a crisis plan that they choose to share with services. The Wellbeing Plan aims to enable individuals using services to develop their own self-knowledge and self-management which is a central plank of the recovery approach1. It can be used both in relation to crisis, including preventing crisis in future, and use of services to deal with long-term conditions. The Wellbeing Toolkit also includes a template to create a crisis card which could be used by individuals to record information that they want to share with others, for example, if they want specific action to be taken when they behave in particular ways or people to be contacted if they are finding it difficult to communicate with others. A template is also included which aims to enable individuals to create their own advance statement outlining what they need to happen if they are unable to communicate their wishes – and what they do and do not want to happen in this circumstance.

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Emerging Best Practices in Mental Health Recovery, NIMHE, 2006

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As well as being based on current thinking that the aim of services should be to enable people to improve their wellbeing and mental health – and quality of life2 the Wellbeing Plan included as part of this toolkit builds on Wellness Recovery Action Plans3. This plan, developed by a woman who used services in the US, incorporates enabling people to create their own Wellness Toolbox, highlighting what they feel keeps them well; identify how they are when they are well; identify signs of distress; and develop crisis and post-crisis planning. This Wellbeing Plan builds on this to enable people to additionally identify what they feel wellbeing means to them, identify their goals and aspirations and resources which they have found helpful, including their own strengths – all of which are consistent with current expectations of care planning4. While the aim is that the plan is created and owned by individuals themselves it also presents the opportunity for them to use it in order to share information they chose to with staff and services as part of their recovery and support planning. The plan also aims to enable people to identify what affects their wellbeing, what causes and how they can deal with mental health issues and move towards recovery. It additionally aims to enable people to identify barriers to dealing with mental health issues or improving their wellbeing with a view to their addressing them. This Wellbeing Plan can also be used in conjunction with the Mental Health Outcome Recovery Star5. A guide to using the Wellbeing Plan included in this toolkit is attached as well as appendices providing examples of some aspects of the toolkit to facilitate people developing their own crisis plans, crisis cards and advance decisions. Also included is a description of the kinds of organisations and resources that might be helpful as well as a few examples.

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No Health Without Mental Health, Department of Health, 2011 Wellness Recovery Action Plans, Mary Ellen Copeland Refocused Care Programme Approach (CPA), Department of Health, 2008 Mental Health Recovery Star, Mental Health Providers Forum and Triangle Consulting, 2010

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Guide to using this Wellbeing Toolkit About the Wellbeing Toolkit As described above, the aim of this Wellbeing Toolkit is to enable any individuals to address different aspects of wellbeing and to provide some tools which could facilitate them doing so.

Creating your own Wellbeing Plan

This toolkit includes lots of information and tips to enable people to create their own comprehensive Wellbeing Plan. A template for people to complete forms part of this toolkit.

Creating your own comprehensive crisis plan

As well as a comprehensive Wellbeing Plan, described below in detail, the toolkit also includes a template to enable people to create their own comprehensive crisis plan. As well as their utilising this themselves to avoid a crisis – or remind themselves what helps in a crisis – they can also use the detailed guide included to extract information they want to share with staff in services they use. An example is included of the kind of information an individual might include in their crisis plan as well as what detail they might extract to share with services.

Also included is a template which you could cut out and glue backto-back – and fold into three – to create your own personal crisis card. Some people find it very helpful to carry a card which explains the meaning of the ways they are behaving, who they want to be contacted if they are finding it difficult to communicate with others, and what they want people to do in these circumstances eg enable them to sit quietly, avoid touching them...

Creating your own advance statement

A guide and comprehensive template is also included to enable people to create their own advance statement. This is similar to a crisis plan but is a legal document and what you say you „don‟t‟ want to happen, for example, if you are taken into hospital, particularly needs to be respected by staff. You can also include information about what you do want to happen though there is no legal duty for staff to comply with this. However, they would be expected to explain why they had not taken your wishes into account.

Wellbeing Toolkit

Creating your own crisis card

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Contents 1 3 4 5 5 5 6 6 6 6 7 7 7 7 8 8 9 9 10 11 12 13 14 15 16 17 18 21 22 24 29 31 34 35 39 44 49

Contents

Introduction to the Wellbeing Toolkit and its contents Guide to using the Wellbeing Toolkit and what is included Contents Guide to creating and using your Wellbeing Plan What is in the Wellbeing Plan and tips to create your plan - Identifying what wellbeing means to you - Creating your Wellbeing Toolbox - Identifying your aspirations and achieving your goals - Identifying what affects your wellbeing, what causes and how you can deal with mental health issues and move towards recovery - Identifying how you are when you’re well and signs of mental health issues - Strengths and what helps you deal with mental health issues - Barriers to dealing with mental health issues or improving your wellbeing - Crisis planning - Advance decision - Crisis card - Post-crisis planning Sections to create your own Wellbeing Plan - Your wellbeing - Your Wellbeing Toolbox - Your goals and aspirations - What affects your wellbeing and causes mental health issues - When you are well - Signs of mental health issues - Dealing with mental health issues – and recovery - Your strengths and what helps - Addressing barriers to dealing with mental health issues or improving wellbeing - Creating your own personal crisis plan - Recovering from a crisis Appendix 1 – Template of crisis plan to be shared with services Spare sheets to use in your Wellbeing Plan Appendix 2 – Example of a crisis and post-crisis plan (including information about an individual) Appendix 2 – Example of a personal crisis and post-crisis plan Appendix 2 – Example of crisis plan information for use by services Appendix 3 – Information about advance statements and example of information which might be included in an advance statement Appendix 3 – Template to create your own advance statement Appendix 4 – Crisis card template and leaflet about creating your own crisis card Resources and sources of help

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Guide to using your Wellbeing Toolkit About the Wellbeing Toolkit The Wellbeing Toolkit refers to the whole of this document as it includes a number of different sections which can be easily separated. The different sections have different coloured headings to facilitate identification.

About the Wellbeing Plan The Wellbeing Plan included here aims to enable anyone to think about a whole range of issues from what wellbeing means to them and how they keep themselves well and look after themselves to signs of – and what triggers – mental health issues, what helps – including your strengths. You can also use it to think about barriers to dealing with what is contributing to your mental health issues – or improving your sense of wellbeing – with the aim of removing them. The toolkit also includes a whole section in relation to crisis planning which can be used to think about ways of dealing with a crisis, including to try and prevent a mental health crisis in future. This section can be separated out easily. The overall aim of the Wellbeing Plan is to enable you to develop your own understanding and self-management of your mental health and wellbeing, including to deal with mental health issues affecting your sense of wellbeing – and move towards recovery.

The intention is not that you create your wellbeing plan all at once but that you can address different parts of it at different times – and over time. You could complete it on your own – or it might be helpful to do it with someone you trust. And it is up to you what information you share with others, including if you use services. You can use a printed version or download one from the website. Details are included at the end about sources of information. _____________________________________________

What is included in the Wellbeing Plan The following sections are included. Each one includes a short introduction which aims to share some tips and ideas to help you think about the different aspects included and enable you to use the plan as a tool in relation to wellbeing.

Wellbeing Plan

Developing and using your Wellbeing Plan

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Identifying what wellbeing means to you It can be really helpful to identify first, very broadly, what wellbeing means to you personally and to think about your whole life and how you chose to live it. This can make it easier to identify where you feel you want to address different aspects of wellbeing in order to improve them or where you want to take action to remove barriers to achieving that sense of wellbeing. And, when you‟re thinking about what enables you to have a sense of wellbeing, you could think about what a good day looks like for you. Creating your Wellbeing Toolbox Your Wellbeing Toolbox should include all the things that you feel enable you to maintain your wellbeing and stay well. It might include representations of family, friends, pets, activities and ways of spending your time that you get pleasure from and enjoy such as reading, watching films or TV, listening to music, doing physical exercise, places that are significant. And you might want to include medication that you take that you feel helps and complementary treatments that enable you to deal with difficult feelings or change how you feel such as Bach flower remedies that lessen feelings of anxiety or aromatherapy oils that help you relax and sleep.

Identifying your aspirations and achieving your goals Use the plan to identify your aspirations and goals in order to improve your mental health and wellbeing. Using the plan also aims to enable you to identify how you might achieve your goals and what steps you might take to do so. Identifying what affects your wellbeing, what causes and how you can deal with mental health issues and move towards recovery You can use your plan to identify what affects your wellbeing and causes mental health issues in order to think about how you might deal with them and what resources you might be able to make use of. And you could use it in relation to thinking about what recovery means for you and what will enable you to move towards recovery.

Wellbeing Plan

Your Wellbeing Toolbox can be used to help you remember what helps when it can feel difficult to do so. And you could use the thinking you have done about what a good day feels like to help you create your Wellbeing Toolbox.

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Identifying how you are when you’re well and signs of mental health issues It can also be helpful to identify how you are when you‟re well eg your personality traits and ways you act. And you can use it to think about the signs of your experiencing mental health issues. This might be helpful for you to be aware of as well as using it to ask others to let you know if they notice your behaviour is different. That might make it easier for you to ask for support as well as developing your own understanding and self-management. Strengths and what helps you deal with mental health issues You can use the plan to think about and record your strengths and what has helped in the past. Particularly when we are feeling stressed or overwhelmed it can be difficult to remember what has helped in the past and our strengths and use them to deal with mental health issues. Barriers to dealing with mental health issues or improving your wellbeing You can use the wellbeing plan to think about and keep a record of what stops you either addressing your mental health issues – or improving your sense of wellbeing. And then you can use this information to address those barriers. _______________________________________________

You can also use your wellbeing plan to think about what contributes to a crisis for you – and what you want and what helps when you are experiencing a mental health crisis. A crisis plan is not just about handing yourself over to others to solve difficulties for you but thinking about how you can take responsibility and action yourself – but what you want from others too. While your Wellbeing Plan belongs to you, some people find it helpful to share relevant information with people you want to. This might be because you want particular people to take specific action or you want people to do – or not do – specific things. And having a crisis plan means that you can think about what you need to avoid a mental health crisis in future. Example of a crisis plan An example of a crisis plan which includes information about an individual, what they want in their crisis plan and then information they want to be shared with mental health services is also included.

Wellbeing Plan Wellbeing Plan

Crisis planning

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Advance decisions & statements Some people choose to create what is known as an „advance decision” or an “advance statement‟ stating what they want to happen – and what they don‟t want if they cannot communicate this information in a crisis. An example of a template that you could use is also included here though exactly what you want to include is entirely up to you. If you do create one you would need to share this with mental health services in order to enable staff to act on the information. Some information about what you need to take into account and who you need to involve if you create an advance decision or statement is also included. Crisis card Some people find it helpful to carry a crisis card with them which gives information you might want to share if you are in crisis and, for example, need help from others in different circumstances. Again, it is up to you what you include in your crisis card but generally it gives brief information about you, explaining ways you might behave in a crisis that you feel might be misunderstood, what you find helpful from others, for example, sitting somewhere quietly and someone talking with you calmly – and contact details of someone you would like to be contacted.

Post-crisis planning You can use your plan to think about and record what you want to happen as you recover from a crisis as we can often feel that there‟s lots of activity and support available while we are having a mental health crisis but that it all stops very suddenly.

Available resources

Information is included at the end about the kinds of organisations and resources that individuals might find helpful. This includes selfhelp resources and organisations as well as community groups for different communities, for example, as well as those which aim to enable people to address life experiences which are impacting on their mental health. This can be given out as a leaflet.

Wellbeing Plan

An information leaflet about crisis cards, together with a template you could use to create your own card are attached as an appendix.

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Your wellbeing First, think about what wellbeing means to you, considering all aspects of who you are, your life and how you choose to live it and spend your time. Do think not just about yourself as an individual but also about who you think of as your support network – your social network – and your community. For example, if faith is something that contributes to your sense of wellbeing then you might feel that you are part of a faith community. And you might feel you are part of more than one community.

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Your Wellbeing Toolbox Think now about what makes you feel – and stay – well and achieve and maintain all the aspects of wellbeing that you have identified. If you imagine having a physical toolbox that you can use at any time – and you could create one for yourself in order to remind yourself – think about what you would put in it. There are a number of ideas included in the guide at the beginning of the Wellbeing Toolkit. You could use photographs, draw pictures or write information on cards that represent what you want to include. Or you could include particular items that you want to keep in mind as helpful.

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Your goals and aspirations What are your aspirations, including in order to deal with mental health issues and to improve your health and wellbeing, thinking about what wellbeing means to you? What do you want to do with your life – and your time – and what do you feel enables or would enable you to move towards recovery? What are the goals that will enable you to achieve your aspirations? How are you going to achieve your goals? You might want to identify short and longer term goals. You could identify here what steps you are going to take. You could also think – and record here – what can help you achieve your goals, such as organisations and resources – and people. And remember that we all have potential and can often do much more than we think we can! So try not to limit yourself to what you think you can do today but think longer term about what you want to achieve and then you can think about how you might do that. And bear in mind that it is really important not to beat ourselves up if we don‟t manage to achieve what we set out to do. We can always try again – and use what we learn during that process to try again – including to think about what we need and what has helped in the past.

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What affects your wellbeing and causes mental health issues Thinking about what you identified earlier about what wellbeing means to you, you could think about – and record here – what you feel causes mental health issues for you. For example, some people might feel that it is particular times of year or memories of traumatic events, recently or in the past. Or maybe feeling overwhelmed and unable to cope feels particularly difficult. Maybe obsessive thoughts – or voices or particular beliefs – affect your mental health. Or perhaps people acting in particular ways or doing specific things have a big impact on you. Or maybe not feeling able to deal with difficult feelings contributes to your mental health issues. Maybe you are worried or afraid that particular things will happen again such as being arrested.

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When you are well It can be useful to think about how you are when you are well. For example, do you sleep well, get pleasure from particular activities, enjoy spending time with others? And how would you describe your personality characteristics or traits? Would you describe yourself as chatty and sociable, for example, or maybe you‟re quiet and thoughtful. Think about all the different aspects of how you are and how you act when you feel well and mentally healthy and have a sense of wellbeing and list them here. Try not to make judgements. We know that some character traits and ways of behaving can be valued more than others in this society – and that beliefs and understandings of different ways of being alters based on our individual cultures.

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Signs of mental health issues What are the signs of your experiencing mental health issues? For example, do you have difficulty sleeping – or want to sleep a lot? Or maybe you feel you haven‟t got the energy to do things you generally enjoy. Maybe you feel physically different. Maybe you feel distracted and lose things like keys or feel unable to deal with dayto-day things like shopping and cleaning or looking after yourself – dealing with difficulties that we all have to deal with in our daily lives. Maybe you feel that obsessive thoughts – or voices – get worse. Or you want to hurt yourself. Signs of distress are completely individual to us. While we might have them in common with others only we know what is different for us, thinking about how we are when we are well. And some people might consider that they feel particular ways a lot of the time and so it is a matter of degrees. You could think about using a „traffic light‟ system to measure how you feel and act at different times.

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Dealing with mental health issues – and moving towards recovery How are you going to deal with your mental health issues – or how do you deal with them? What helps – what can you do and what resources can you make use of? If you are having difficulties with debt or benefits, for example, then what organisations can help? Or do you know about or can you find out about organisations that can help you deal with experiences in your life like domestic violence – or racial or sexual or homophobic harassment? Or maybe you feel it would be useful to talk through what you are having difficulties with – with someone else – to find solutions and resources you can make use of. Or perhaps there are self-help resources and networks you can use. If you don‟t already have information, where can you find it? A few examples are included later in this plan. Using your Wellbeing Toolbox should be helpful here too.

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Your strengths and what helps Think here about your strengths. It can be helpful to think about what has helped in the past. Has it helped to talk with someone else about what might help and to get ideas? Maybe you‟re particularly good at finding information. Maybe you are prepared to try different ways of dealing with mental health issues. What solutions have you found to problems before? Think about what you‟ve achieved in your life, including, for instance, dealing with mental health issues because it‟s worth keeping in mind that that takes an enormous amount of strength which it is all too easy to forget. It could be useful here to identify what a good day looks like and then think about how you have achieved that.

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Addressing barriers to dealing with mental health issues or improving wellbeing Think about what you experience as barriers to either dealing with your mental health issues – or improving your life and your sense of wellbeing. This might be feelings we have about ourselves – like we‟re not worth it, or it‟s hopeless because nothing ever works and we don‟t manage to change things for the better... There is no magic solution to dealing with mental health issues and different things work for different people so you need to try out different ideas. Sometimes we can also stay in a situation or continue to live our lives in ways that make us feel bad because it is familiar – while it may feel bad, at least we know what it feels like. And making different choices means change which lots of us find scary. Think about how you can feel safe while taking positive risks in your life. What helps you feel safe, what can you do to deal with particular feelings like anxiety, for example, and where can you get ideas from – or support? And who can you share taking those risks with? It could be someone in your support network or a member of staff.

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Your personal crisis plan This information focuses on enabling you to think about issues in relation to a mental health crisis. Crisis planning is not just about handing yourself over to someone else to sort out difficulties but is also about taking responsibility yourself and thinking about what you want from others. What can you do yourself and what emotional and practical support do you need from others? Some prompt questions are included here. As well as space to create your own crisis plan for yourself, an appendix is also attached for you to enter specific information that you want to share with others – which might be people who you feel are involved in your support network or staff working for services with whom you are in contact. Also included is an example of a comprehensive crisis plan as well as information that this individual might chose to share with mental health services together with their post-crisis plan. Name: What contributes to a crisis for you?

(So, what are the experiences, memories, feelings... that contribute to and cause a mental health crisis for you?)

What are the signs of you experiencing a crisis?

(What do you do when you are experiencing a crisis? Do you withdraw from others and then feel isolated and overwhelmed and that you can‟t do anything. Or maybe you find yourself avoiding dealing with day-to-day difficulties that come up. And how do you act when you are experiencing a mental health crisis? How does it differ from how you behave when you are well?)

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What helps you deal with that crisis?

(You could think about what has helped in the past – and who has been helpful too. Does it help to talk over with someone how you are feeling and acting – and come up with a plan? This might be an immediate plan and then a longer term one to deal with practical difficulties, for instance. Are there services or organisations that can help? Or maybe there is particular medication that has helped in the past – or there are particular things you can do to change how you feel eg to enable you to feel calmer, to enable you to feel more in control... What makes you feel better?)

What do you want others to do?

(What needs to be dealt with? This will depend on what has contributed to the crisis, particularly in relation to practical issues such as difficulties with housing or benefits, for example, but there might be things that you always want from others. You might want someone to make sure your home is secure and looked after if you have to leave it, your children are safe, that your pets are looked after, your mail is either dealt with or given to you...)

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Who do you want involved and what do you want them to do?

(It would be useful to think here about who you trust and feel you want involved as well as what you want from them)

What do you want to happen?

(You could think here about what you want to happen if you are in a position where you can‟t say what you want – or need – or you are aware that others don‟t necessarily understand that how you are acting does not match how you are feeling and so can be misunderstood. So you might show anger when you feel very frightened of others. You could include information like this here about how you want others to act towards you – or to avoid acting. Perhaps you would like people to know that their making lots of eye contact with you can make you feel threatened. Do you want others to avoid touching you because of how it makes you feel – or is it helpful for someone to sit quietly with you or maybe you need help from others to calm down if you feel particularly wound up? You might have found use of a particular medication helpful – or maybe there is particular medication you positively do not want. It is worth thinking here about both what you find helpful as well as what you want to avoid in future. You could also think here about creating an advance decision to tell others what you do – and don‟t – want in future)

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Recovering from a crisis It can often feel as though there is lots of activity and support provided during a crisis but that it all stops suddenly. So it can feel helpful to think about what you want to happen as you are recovering from a crisis. What do you want from others as you move towards recovery? What is your plan to take on your responsibilities again? And what have you learnt from the crisis? As we are recovering from a crisis is often the best time to think about what we have learnt because it can help us avoid it again in future – and focus on getting on with our lives.

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Appendix 1 – Your personal crisis plan to be shared with mental health services Thinking about what contributes to a crisis for you and what helps – and what you want to happen and who you want to be involved, this form is intended to record details you want to share with mental health services. Your crisis plan will then be tailored to you personally and to your circumstances. You could use the information you include here as the basis to create your own advance statement – and/or crisis card. Templates for both are included here. Name: Contact details: What contributes to a crisis?

What helps in a crisis?

What action do you want to take yourself – and what support do you want from others? What is your plan to deal with what is causing the crisis and who else can help?

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What you want – and don’t want – to happen:

(This might be how you want others to behave towards you eg if you are feeling very threatened by others then you might prefer people to avoid making lots of eye contact with you. Or maybe there is particular medication that you find helpful – or that you specifically don‟t want. Or perhaps being able to be in a quiet place and/or having someone sit with you quietly helps. Or maybe you need help from others to calm down if you feel particularly wound up)

Contact person in a crisis (and contact details): NB You would need to agree with this person that they are happy to be contacted if you have a crisis

People to contact and contact details: (This might be staff who work in services that you need support from and their contact details)

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Spare sheets to use in your Wellbeing Plan A few blank sheets of paper are included here for you to use as part of your Wellbeing Plan

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Appendix 2 – Example of a crisis and post-crisis plan (including information about an individual) Introduction

Information is included here about, first, an individual. This is followed by the personal crisis plan they might create and then by information that they might want to share with mental health services. ___________________________________________________________

Information about an individual

Esther is a 29-year-old Caribbean woman. She has been using mental health services since she was 22, having experienced depression and suicidal feelings and been hospitalised as a result. She has been given a diagnosis of post-traumatic stress disorder. She was abused by an uncle as a child and felt she would not be believed so did not tell anyone. She had been very engaged at school and did well until she was 14 when she began to withdraw, including from her family, and got into trouble with the police when she shoplifted with friends, though no action was taken. She began self-harming and kept it hidden. She had a child when she was 19. Memories of her abuse surfaced during her pregnancy and she self-harmed more often as a way of coping with her memories and feelings. She left home to live with the father of her daughter who subjected her to domestic violence. She became increasingly isolated from her family and friends as a result, feeling ashamed and to blame. She talked to her mother who was supportive, including with looking after her daughter, Wendy. She got an injunction against her ex-partner and moved to a housing association flat. Esther has difficulty sleeping as a result of flashbacks and finds it hard to feel safe. Lack of sleep can make her feel increasingly out of control, overwhelmed and unable to cope. She and her sister are close and she provides practical help, including to look after Wendy. Esther finds it very difficult to talk about the abuse by her uncle and self-harms to deal with her feelings. She has been taking anti-depressants but is keen to come off them as she feels they can make it feel more difficult to function and get pleasure from spending her time in ways she enjoys which make her feel better. She is reducing the dosage with support from her GP who has also referred her to counselling which she feels is helping. 30

She has been addressing her self-harm via a self-help network and is very clear that she does not want to go into hospital again. She is also using a helpline to talk about her experiences and develop her self-management as well as to deal with her feelings when she feels unsafe and cannot sleep. It has been suggested to her that creating a crisis plan might be helpful. Esther has started to use direct payments to do an access course in social care, moving towards further training. She is very capable and generally very organised, managing her different roles and responsibilities very well. She has a close relationship with her sister, is involved with her mother but tends to keep the rest of the family at a distance. She has good friends, including who she has known for some years, and has a good social life. Her daughter, Wendy, is sociable, is popular at school and has a good friendship network. Esther has developed her awareness of what she needs at different times, including negotiating with the college she is attending when she needs to take time out or needs additional support. Esther has no contact with her ex-partner and has made it clear that he should not be contacted under any circumstances since he was invited in error to a care planning meeting three years ago when she was supported for a time by the crisis and home treatment team. There have never been any concerns about Esther‟s ability to care for her daughter, including because she gets support, including in relation to practical tasks, from her sister.

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Appendix 2 – Example of a personal crisis plan based on information given above Name: Esther B Contact details: What contributes to a crisis Memories of abuse and domestic violence Feeling unsafe and threatened by others Feeling overwhelmed and unable to cope Feeling it is difficult to trust others Feeling isolated Signs of experiencing a crisis I withdraw from others and become isolated. I always have difficulty feeling safe enough to sleep because of flashbacks and nightmares but it gets worse when I am having a crisis. Lack of sleep then makes me feel overwhelmed and unable to do anything like looking after myself – eating enough and spending time in ways that make me feel better. I manage to function on one level so make sure that my daughter is looked after but find it very difficult to look after myself. I hurt myself to deal with my feelings. What helps in a crisis Talking to my sister about how I am feeling and, through counselling, I have become more able to ask for help when I need it. Angela also notices when I am withdrawing and offers to help. Angela helps with cleaning, shopping, paying bills and looking after Wendy. I use a helpline, especially when I am feeling really unsafe and so cannot sleep or am having suicidal feelings.

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Learning about the effects of abuse and domestic violence is helpful so I feel less alone and know what I am feeling and how I am acting is normal. I try and get ahead with work I need to do for my course so that when I feel unable to do any work, I don’t get behind. I also negotiate working at home sometimes if I don’t feel able to be around other people. Action you want to take yourself – and support you want from others. Your plan to deal with what is causing the crisis and who else can help When I feel I am moving towards a crisis, I talk to my sister and we agree between us which tasks I feel able to do and which she can do. When I am feeling okay I cook large amounts and freeze food so I don’t need to cook when I don’t feel able to. I shop for food on the internet, including when I am finding it difficult to sleep as this can distract me from my feelings. I can find it easier to sleep during the day and do this when Wendy is out with her friends or out with Angela. I contact the helpline, especially at night, which helps. What you want – and don’t want – to happen: I have never acted on my suicidal feelings and am able to deal with them but do need to be taken seriously when I say I feel like that and also need to be able to do what makes me feel safe instead of someone taking over. I am prepared to get support if necessary from the home treatment team though I need only women staff to come into my flat. I would consider going to a crisis house. I am not comfortable when I feel very withdrawn being touched by people I don’t know. Contact person in a crisis (and contact details): Angela B on her mobile number People to contact and contact details: As above 33

Anyone who should not be contacted: Derek X (ex-partner) – under any circumstances Sophie Y (mother)

Example of a post-crisis plan It can often feel as though there is lots of activity and support provided during a crisis but that it all stops suddenly. So it can feel helpful to think about what you want to happen as you are recovering from a crisis. What do you want from others as you move towards recovery? What is your plan to take on your responsibilities again? And what have you learnt from the crisis? As we are recovering from a crisis is often the best time to think about what we have learnt because it can help us avoid it again in future – and focus on getting on with our lives. Angela and I negotiate what tasks I can gradually take on again and we discuss how I am feeling about looking after myself and my daughter – and getting back into college work.

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Appendix 2 – Example of crisis plan information for use by services based on information given above Details to be used to link your crisis plan with use of services: Name: Esther B

NHS number:

Address: GP: Contact in crisis: Angela B on her mobile number Staff contact name (if any) and contact details:

Not to be contacted: Derek X (under any circumstances) and Sophie Y (mother) Information about what should happen in a crisis: Contact my sister, Angela, on her mobile number. She will take responsibility for looking after my daughter, Wendy, and for anything practical that needs to be sorted out immediately. Angela also has information about what I want – and don‟t – want to happen if I am in crisis. I am prepared to be provided with support by the crisis and home treatment team and to go to a crisis house. If staff come to my flat, I need only women staff to come in. When I withdraw in crisis I need people not to touch or get too close to me as this makes me feel worse. I do not feel safe in hospital and going into hospital will not reduce risk for me. I need to be supported to deal with how I am feeling, including dealing with feelings that make me want to self-harm. I need support to deal with practical things and get my life back on track. I also need support to deal with how I am feeling, including suicidal feelings which I have never acted on. I am reducing medication and don‟t want it to be increased in crisis because it makes me feel more out of control and makes me feel worse rather than better. Permission to share information in this crisis plan Signed:

Date: 35

Appendix 3 – Information about advance decisions & statements and example of information which might be included in an advance statement About advance decisions & statements

Information included here as well as the template anyone could use to create their own advance decision and statement has been compiled from a range of sources including national Mind, Rethink Mental Illness, Northumberland, Tyne and Wear NHS Trust6 and Power Tools for Advocacy in a Hospital Setting7. This research highlights that broadly the same sections are included in advance decisions and statements though BUG carried out some work with individuals using services in Brent and their additional suggestions have been incorporated in the template included here. Some guidance notes are included below in the form of questions and answers. ___________________________________________________________

What is an advance decision or statement and who can create one?

An „advance decision’ was previously known as an „advance directive‟. The terms „advance refusal‟ and „living will‟ are also sometimes used. This enables you to refuse specified medical treatment for a time in the future when you may be unable (“lack capacity”) to consent to or refuse treatment. Basically if you want to make in advance a binding refusal to have medical treatment then you have to be at least 18 and have “capacity”. (The requirements for a legally binding advance decision and what its effects are can be found in ss24-6 of the Mental Capacity Act and are explained in chapter 9 of the Code of Practice to the Mental Capacity Act)8 An advance statement is intended to be used to record details more broadly of what you want – and don‟t want – to happen if it feels difficult to communicate your wishes for any reason, if you are not considered to be in a position to give consent to treatment or to make informed choices about treatment at a future time. Your wishes can be recorded in a written document such as in the template included here – or in a witnessed and spoken statement that is written down – or it can be based on a discussion recorded in an individual‟s file. However, it is often considered that a written statement can make your wishes clearer. Anyone aged 18 or over can create an advance statement, and it is not legally binding. 6

Advance Statement for Mental Health, Northumberland, Tyne and Wear NHS Trust in consultation with LAUNCHPAD, UserVoice, UCAN INPUT and Gateshead Mental Health User Forum 7 Power Tools for Advocacy in a Hospital Setting, Leader and Crosby, Pavilion Publishing 8

http://www.justice.gov.uk/downloads/guidance/protecting-thevulnerable/mca/mca-code-practice-0509.pdf 36

___________________________________________________________

Do staff have to take notice of what is included?

While the law states that staff only need to act on what you say you do not want to happen (in an advance decision), staff should take into account information about people‟s wishes included in their advance statement. If they don‟t, then they should give a full explanation about their reasons. Staff should also always check whether someone has an advance decision as well as information it gives before considering any action. There are certain conditions which need to be satisfied before an advance statement can be valid and there are some limits to what someone can direct. Information about what an advance decision and statement need to cover and limits is given below. ___________________________________________________________

How does an advance statement work?

You cannot normally be given treatment without your consent. But if doctors consider you incapable of consenting they can treat you according to what they think is in your „best interests‟. The courts, however, have confirmed that if you set out your wishes in advance they will be valid at the time treatment is being considered, even if you have at that time become what is considered incapable of giving consent. An advance statement is your instruction to staff, including doctors, who might be treating you in future about how you wish to be treated if you are considered to have become unable to make decisions. __________________________________________________________

Can an advance statement be ignored?

Your instructions cannot be ignored by your doctor unless: the advance statement is not clear the advance statement does not apply to the particular situation you have been detained under the Mental Health Act (in circumstances described below) There may be some situations where the law allows your wishes to be overridden, for example, the Children Act. ___________________________________________________________

Are there limits to what an advance decision can do?

An advance statement cannot be used to compel a doctor to give you a particular type of treatment. This is considered a clinical decision and services can also take into account other influences such as financial considerations. An advance decision can only be used to direct treatment you do not wish to have. 37

Your advance decision cannot prevent treatment being given where it is considered to be required a medical necessity to save life. More importantly, an advance decision can be overridden if you have been detained under sections of the Mental Health Act which permit a doctor (subject to the terms of the Act) to administer treatment, whether or not you consent, for the purposes of treating „mental disorder‟. However, an advance decision will still be valid if you have been admitted to hospital voluntarily. It can also still apply to treatment for physical disorders. ___________________________________________________________

What does an advance decision or statement need to cover? Information Your advance decision needs to include your name, address, the date it was drafted and your signature. You also need to include a statement that you understand what you are doing and have the necessary legal capacity to make an advance decision. An advance decision needs to state clearly what medical treatment you don‟t want to happen. An advance statement can cover other things you wish or do not wish to happen. It does not need to use specific language but does need to make it clear what treatment you are refusing or consenting to have and in what circumstances. And it is a good idea to review your advance decision periodically to make sure it still reflects your wishes. It must cover the particular circumstances which arise. For example, you might want to state that you do not want to be given particular medication because of specific effects or side-effects you have experienced. This information could then be taken into account in doctors‟ clinical decision making. Witnesses There is no legal requirement to have your signature witnessed but it can make your decision/statement more effective if you have it signed by someone who can confirm that you were mentally competent at the time you made it and understood what you were doing. While it might be helpful to have a doctor you are familiar make this statement as it could avoid arguments in future, it is important to ensure that your wishes are not compromised by the staff with whom you work, so you might want the support of an advocate when you met with your doctor. And you could get advice from a solicitor who specialises in mental health law. 38

Changing your mind As long as you can show that you are competent at the time, any written directive you have made in the past can be overridden by your express wishes made verbally at a future date, but someone would need to prove that you had changed your mind. If you do change your mind then you need to destroy all past written directives, replace it with your new advance decision or statement – stating that your previous directives have been superseded – and bring it to the attention of staff with whom you work. Where to make sure your advance decision or statement is lodged Your advance decision or statement needs to be attached to your medical notes so that in an emergency it can be located and acted on. So it is a good idea to give a copy to your GP and to relevant staff in mental health services. You should also give a copy to anyone you have nominated to make your wishes known or to anyone who might be consulted. ___________________________________________________________

Making your advance decision effective

The most important condition that needs to be satisfied, in order for an advance decision to be valid, is that the person making it is mentally competent at the time the decision is made. So they must understand the nature of the decision and the effect it has. Incapacity under the law in future does not invalidate the decision but please note information about use of the Mental Health Act above. Being given a diagnosis or being sectioned does not make someone legally incapable of making an advance decision or deciding what treatment they would prefer. However, it is advisable to include in your advance decision that you have the necessary competence to decide what treatment you don‟t want. One way of indicating your ability to make your own decisions is to set out the reasons why you have come to the conclusion you have and that you have not based your decision on incorrect information. So you should set out: what you understand about the treatment which you are refusing your belief about why that particular treatment has been given to you in the past or might be given to you in the future your reasons for your decisions now Your advance statement will come into effect only if and when you lose the capacity to make decisions about your treatment. Until that time you continue to make decisions yourself without reference to any written statement already produced. ___________________________________________________________

What does ‘having capacity’ mean? 39

It is generally assumed that individuals have capacity to give consent and be involved in decisions about how they want to be treated. However, when staff feel this might not be the case, they need to carry out an assessment under the Mental Capacity Act 2005. ___________________________________________________________

Sources of help and information about advance decisions and statements

You can contact national Mind‟s Legal Advice Line on 020 8519 2122 from 2-4.30pm on Mondays, Wednesdays and Fridays. Independent mental health advocates may also be able to help and most areas have independent advocacy projects. Solicitors specialising in mental health law can also help. ___________________________________________________________

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Appendix 3 - Advance statement (including advance decision) Personal details Name:

NHS number:

Address and contact details: ___________________________________________________________ Statement This is my advance statement and decision which I have made in case I have a mental health crisis and am unable to take part in decisions being made. I direct that the following instructions are complied with. In particular, I refuse treatment which is contrary to that stipulated in this document. Where I have objected to a specific form of treatment this shall be legally binding on those treating me. I confirm that I am over 18 years of age and understand that this document remains effective until I make it clear my wishes have changed. Signed: Dated: ___________________________________________________________ Witnesses

(this is optional but can make an advance statement more effective) Witness 1 Name:

Signed:

Date:

Signed:

Date:

Address: Witness 2 Name: Address: I confirm that I believe the above named: has freely stated their directions in this document. It is my understanding and belief that they have the mental capacity to understand the nature and consequences of these directions. ___________________________________________________________ 41

Person to be consulted if necessary If I am unable to communicate for myself or cannot make a decision for myself, I would like the following person/people to be contacted and consulted: Name/s:

Contact details:

I confirm that this person knows and understands the terms of this directive and that they have given permission to be contacted and will speak for me: Signed: Dated: ___________________________________________________________ Who knows about and has copies of this advance statement I have provided a copy of this advance statement to the following people:

(this might include specific professionals, including GP, consultant, your partner, family member, advocate)

I have discussed this advance statement with the following staff:

___________________________________________________________ Advance medical statement I declare that my wishes are as follows: My wishes regarding medication and treatment are:

(it is helpful to give reasons why and you could include details here of how you want medication administered)

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On previous occasions the following worked well for me:

(this might include how you want staff to work with you or particular treatments you have found helpful)

What has not worked well for me in the past:

(you could include information here about the ways that medication has been administered or approaches that have been taken with you)

_________________________________________________________ Advance statement in relation to personal and home life I declare that my wishes are as follows: I would like you to tell the following people immediately that I have been admitted to hospital:

Other people to contact and tell I am not at home:

(this might be milkman, home help, work)

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I do not want the following people told: I would like the following people to deal with urgent issues eg bills:

I would like you to ask me before you tell people how I am:

(please tick)  yes  no

What I would like you to know about me when I am in hospital:

(you could include here your needs and preferences in relation to specific diet or food, physical health or needs in relation to physical and/or learning disabilities, faith, your culture as a result of your ethnicity, gender, sexuality, age...)

___________________________________________________________ Children or dependants

(Give details here of children and/or any dependants eg older people)

I would like the following people to care for my children/dependants until I am able to resume this responsibility myself:

When someone explains my situation to my children I would prefer them to be told the following: 44

Pets

(Complete this section if you have pets to be cared for) I have the following pets:

I would like the following people to look after my pets:

People may need to know the following about my pets:

Security and my home I would like the following person to make sure my home is secure:

I would like the following person to hold a set of keys:

Any other information I would like known about my home:

___________________________________________________________ Any additional information you want to give

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Appendix 4 – Crisis card template Creating your own crisis card You could use information included here to create your own short crisis card which you can carry with you, giving information which you feel is particularly important for others to know. A template for a crisis card you could cut out and complete yourself is below and an information leaflet about the kinds of information you might want to include are on the next page. Both the crisis card and leaflet are designed to be double-sided and then folded in three.  ------------------------------------------------------------------------------------ Name: Address [optional]:

If I am having a mental health crisis I would like the following information to be taken into account:

And the following actions to be taken:

Date of birth [optional]: Preferred language is: GP/doctor: GP‟s/doctor‟s contact no:

-----------------------------------------------------------------------------------

Contact information Mon-Fri 9am-5pm (except bank holidays)

I have nominated the person below to be contacted as soon as possible and be informed about what is happening:

Care coordinator:

Name:

Contact details:

Contact details:

Mon-Fri 5pm-9am, weekends and bank holiday Mental Health A&E Team contact details: Social services Emergency Duty Team contact details:

Crisis card

Developed by BUG and Brent Mental Health Service with individuals using services in Brent

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Information about and accessing this toolkit and other implementation tools This Wellbeing Toolkit has been produced by Fiona Hill, Brent Mental Health User Group together with individuals using services to deal with mental health issues across London as part of the London Health Programmes Mental Health Models of Care Project. This is one of a number of implementation tools produced via the Service User Panel attached to this project. The others focus on enabling individuals to measure how they benefit from services9; to measure the approach of staff and services10 and guidelines for GPs working with individuals using services to deal with mental health issues11. Copies of all these implementation tools are available via: Website: www.londonhp.nhs.uk e-mail: [email protected] or, including for further information, contact Fiona Hill: 020 7624 4055 e-mail: [email protected]

9

Measuring how you have benefited from using mental health services, Brent Mental Health User Group/London Health Programmes, 2011 10 Audit tool to measure how individuals benefit from using services and services‟ approach, Brent Mental Health User Group/London Health Programmes, 2011 11 Guidelines for GPs working with individuals using services to deal with mental health issues, Brent Mental Health User Group/London Health Programmes, 2011

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