This section is all about helping families organise themselves to make things easier to manage, even in a crisis.
There is no one set definition of a crisis: each person will have a different experience of a crisis or emergency. However, in general, a crisis occurs if your loved one does not appear to be coping or to be in control of their behaviour, and/or if you are feel unable to support and keep them or others safe. They may show signs of great emotional distress or anxiety. They may also experience deteriorating mental health, have thoughts of suicide or self-harm, experience hallucinations or be hearing voices.
For anyone living with learning disability, autism or both and whose behaviour is seen as challenging, a crisis can be caused by any number of things, including mental health issues, so identifying and managing the cause(s) may be complex.
To meet your loved one’s needs effectively, it is important to focus on three things:
- appropriate assessment of needs
- detailed planning, and
- an adequate support network.
In the previous section, we covered avoiding crisis from the ‘system’ perspective. This section deals with person-centred planning to help your loved one to stay well and avoid the need for crisis intervention.
A variety of crisis plan formats have been developed, primarily in the mental health field, to help prevent or manage a crisis. A plan typically consists of a very detailed summary of the person’s support network, likes, dislikes, what things look like when they are well, routines, potential triggers and warning signs.
A crisis plan can be very helpful for families (and other carers) to support their loved ones with learning disabilities and/or autism with any challenges they may face. It can help identify behaviour that is out of character or unusual, and to find coping mechanisms and strategies to help the person cope with the specific situation.
A crisis plan can also help the person, with support if needed, to recognise their own strengths, understand their own triggers and take an active role in their own wellbeing.
A good crisis plan puts the individual at the centre of their health and recovery. It is important to develop the plan with the person’s supporters (e.g. parents, carers, health and social service professionals, and care staff) in order to provide support strategies that everyone can use consistently.
None of us can foresee the future, so it pays to try to stay one step ahead. To help your loved one keep well and avoid crisis, it is important to prioritise careful planning and make it part of the everyday routine as much as possible. To tackle this, we recommend something called ‘My Backup Plan’. It is similar to a Communication Passport but more in depth. Sometimes these plans are known by different names, such as ‘Joint Crisis Plans’ or ‘Wellness Action Plans’.
My Backup Plan is described below. You can find a blank copy for you to fill in and use if you want to at the end of this guide. See Appendix A.
Alternatively, you may prefer to use a crisis plan from another source. There are quite a few different versions online.
My Backup Plan
My Backup Plan helps your loved one and those around them to think about and write down what they need to stay well, how to identify the signs or triggers that may make them feel unhappy, uncomfortable or unwell, what to do if a crisis occurs and how to get back on track after a crisis.
Using a Backup Plan has three benefits
- It helps maintain health and wellness
- It promotes the person’s needs and preferences during a crisis.
- It assists with the return to pre-crisis routines.
A blank Backup Plan template can be found at Appendix A. Once you have filled it in, reading it often will remind you, and others that help and support your loved one, what it is like when they are happy, comfortable and well supported. If anything starts to go wrong, the plan will help everyone put it right quickly.
The format we have used is based on NICE Quality Standard QS14/ Quality statement 9: Crisis planning. This can be found at: https://www.nice.org.uk/guidance/qs14/chapter/quality-statement-9-crisis-planning.
The standard identifies eight themes as follows:
- possible early warning signs of a crisis and coping strategies;
- support available to help prevent hospitalisation;
- where the person would like to be admitted, in the event of hospitalisation;
- the practical needs of the person if they are admitted to hospital (e.g. childcare or the care of other dependants, including pets);
- details of advance statements and advance decisions;
- whether (and the degree to which) families or carers are involved;
- information about 24-hour access to services; and
- named contacts.
My Backup Plan includes each of these themes as separate sections with plenty of space to enter the information requested on each page. You will need to look at each page in turn and answer the questions shown. The sections can be filled in to match your circumstances. Attention to detail is very important. Although it will take time to finish it just go through it carefully and avoid rushing it.
Once done, reading each page will help remind your loved one, and everyone providing their support, how best to keep them well and happy and how to help you manage on less good days.
Please note: It is important to involve your loved one in writing the plan as much as possible, and to give them the final say on what is included. They should also decide who receives a copy of the plan.
How can I plan for a crisis?
NICE Quality standard [QS14] Service user experience in adult mental health services
5 top tips for Mental Wellbeing
Wellness & Recovery Action Plan templates
Working together for recovery
Recovery Devon: Wellness Recovery Action Plan
Surrey and Borders Partnership NHS Foundation Trust WRAP:
Devon Partnership NHS Trust: Wellness Recovery Action Plan (WRAP)
DR&SH NHS Foundation Trust: My Wellness & Recovery Action Planning® Book
My WRAP Plan
Wellness Recovery Action Plan (WRAP)
Personal Crisis Plan (Advance Directive)
Advance Care Planning
Advance Care Planning (ACP) enables someone to make future plans for their care and treatment should they become unable to make decisions at any time in the future because of an illness. It is entirely voluntary and no one is under any pressure or obligation to make advance decisions.
Due to the complexity and legal basis of the process, it is not practical for us to cover ACP in detail within this guide. However, we did feel it was important to explain the difference between an Advance Statement and an advance decision and to introduce crisis cards.
What is an Advance Statement?
An advance statement allows someone to make general statements, describe their wishes and preferences about future care should they be unable to make or communicate a decision or express their preferences at that time. An advance statement is not legally binding. However, those making a ‘best interests’ decision on the person’s behalf should take its contents into account if the person is unable to tell them what they would like.
What is an Advance Decision?
An advance decision allows someone to decide now about speciﬁc treatments that they do not want to receive in the future. Its purpose is to ensure that, if they are not able to make decisions at the time, they are not forced to receive treatment that they would not want.
What are Crisis Cards?
A crisis card is designed to be carried in someone’s pocket or wallet. It should contain information about what to do and who to contact if the person is experiencing a crisis. They can be very useful if the person has difficulties communicating your distress. You can read an example at: https://www.cnwl.nhs.uk/wp-content/uploads/CNWL_Single_Point_Access_Crisis_Card.pdf
Planning for your future care
Advance decisions, advance statements and living wills
ReSPECT: Recommended Summary Plan for Emergency Care and Treatment
Advance care plans: Examples of document templates
Crisis services, cards and plans
Crisis Card App.
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