Planning ahead for your future care: A guide to talking about it, planning for it and recording your wishes.
Why should I plan for my future care?
Regardless of our current health and wellbeing, we can all benefit from being prepared for some of the choices that may face us in the future. There may become a time when we are unable to communicate what we would like to happen to us, either due to illness, an accident or mental incapacity. If we record and share our wishes in advance, we are more likely to get the care we want.
Feedback from people we have supported through this process, highlight the benefits some have found from going through the planning ahead process:
It was something I always meant to do but never found the time. Now I’ve got things in place I feel a weight has lifted and I can move on.
It was quite an emotional process but so valuable. I have talked to my GP and feel confident that all the relevant people now know how I’d like to spend the time I have left and how I want to be looked after.
Here actor Greg Wise explains why he has planned for his future care:
Getting started
We know it can be a difficult thing to think about and, for some, not an easy conversation to start with our family and friends. That is why the Princess Alice Hospice Wellbeing Service runs an information session about Planning Ahead that you and your loved ones are welcome to attend. Please contact our Wellbeing Service on [email protected] for more information.
Talk to your GP
We also recommend talking to your GP or other healthcare professionals who are involved in your care, as part of this process. This is particularly important if you already have a diagnosed condition that may impact some of the choices you need to consider. They will be able to take you through your options around clinical decisions and help you to understand the impact of these decisions.
Helpful resources
Universal Care Plan for London
The Universal Care Plan is an NHS service that enables every Londoner to have their care and support wishes digitally shared with healthcare professionals across the capital.
A care plan is created following a conversation between a healthcare professional (such as a doctor or nurse) and the person in their care. Throughout the conversation, the healthcare professional will listen, understand and make notes on:
- What is important to the person in their day-to-day life
- Their preferences or wishes about their care
- What support they need and who is best placed to provide this
- Information about others who may be involved in that person’s care, such as relatives
The care plan is then created following this conversation using the Universal Care Plan. As soon as information is saved on the plan, it is visible to all health and care services who use it. This includes the London Ambulance Service, 111 and Out of Hours GP services who may see the person in an emergency.
ReSPECT
For those living outside the London area there is a process known as ReSPECT . ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. The ReSPECT process creates a personalised recommendation for your clinical care in emergency situations where you are not able to make decisions or express your wishes.
The plan is created between you and your health professionals. Once you have created the plan (it is an easily recognisable purple form), it stays with you so it is available to health professionals called to help you in an emergency such as ambulance crews, out-of-hours doctors, and hospital staff.
For more information please visit the ReSPECT website or mention it to your GP if you would like to create a ReSPECT form.
Princess Alice Hospice – Planning Ahead Document for recording your wishes
Some people find it useful to work on their own paper Planning Ahead document either as preparation for completing MyCMC or a ReSPECT form, or as a standalone document. There are lots of different forms available online to record your wishes but Princess Alice Hospice has created a form in conjunction with a number of organisations.
Empowering you to lead your own care
Addressing systematic barriers to help improve palliative and end of life care for all.
Having difficult conversations/starting conversations
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Organisation that provides information to help prepare for the end of life. Has some great information booklets which can be downloaded.
https://compassionindying.org.uk/library/starting-the-conversation/
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The Marie Curie magazine that aims to support and inspire conversations about dying, death and grief. Includes some interesting articles around preparing for end of life and how to talk about it.
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Helpful booklet about how to start difficult conversations with loved ones.
End of life planning
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Information on end of life care, advanced statements and advanced decisions
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Provide information to help prepare for the end of life and specialise in supporting people to make Advance Decisions. Their free MyDecisions website enables recording of wishes.
https://compassionindying.org.uk/making-decisions-and-planning-your-care/
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Coalition of members which aims to help people talk more openly about dying, death and bereavement and to make plans for the end of life.
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National charity, with local services, supporting older people. Free information guides and factsheets are available, including those on end of life planning.
https://www.ageuk.org.uk/services/information-advice/guides-and-factsheets/
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Free advice and factsheets for older people which include ‘Planning for the End of Life’ and ‘Managing my affairs if I become ill’.
https://www.independentage.org/information/advice-guides-factsheets-leaflets
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The National Association of Funeral Directors https://nafd.org.uk/ and the National Society of Allied and Independent Funeral Directors https://saif.org.uk/ can help with finding a local funeral director.
Funeral celebrants can assist with planning and conducting a funeral https://funeralcelebrants.org.uk/
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Macmillan have produced a range of easy read booklets which may be helpful.
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Planning ahead is about making sure your wishes, values and preferences are understood, so that the care you receive reflects what matters most to you.
We are pleased to highlight the work of No Barriers Here, an award-winning programme developed by The Mary Stevens Hospice. No Barriers Here works alongside communities who may experience barriers to accessing palliative and end of life care, helping to create more inclusive, equitable and meaningful conversations about planning for the future. Using creative, arts-based approaches and co-production with local communities, they support people to explore their wishes and make informed choices about their care.
As part of their latest research, No Barriers Here has developed Empowering You to Lead Your Own Care, a community resource created with and for LGBTQ+ people from diverse ethnic backgrounds. The guide encourages people to think about what is important to them, understand their options, and feel confident discussing their future care needs with those around them. Developed through collaboration with community members and research participants, it aims to make conversations about care more accessible, inclusive and empowering.
Whether you are planning for yourself, supporting a loved one, or simply starting to think about the future, this resource can help you take an active role in decisions about your care.
Legal and financial
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The independent professional body for solicitors has a search facility to find a solicitor in your area for services such as will writing and Lasting Power of Attorney.
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A national member organisation for lawyers specialising in working with older or vulnerable clients.
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Princess Alice Hospice has partnered with trusted legal professionals to offer a free Will writing service. Appointments are available either online or in person – whichever works best for you.
For more information, visit Gifts in Wills.
If you’d like to speak to someone directly, Chris, Imogen, and Jo from our Legacy team are here to help. You can reach them by calling 01372 461808 or by [email protected].
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Information and online applications for Lasting Power of Attorney.
https://www.gov.uk/government/organisations/office-of-the-public-guardian
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Society of accredited financial advisers who can advise on financial planning in later life.
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Information on making, registering and ending Lasting Power of Attorney.
Other organisations supporting people approaching end of life
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Supports bereaved children and their families and those affected by a family member with a life limiting illness
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Emotional and practical support for those facing life threatening illness in the Surrey area.
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An End of Life Doula is someone who can support a person with a life limiting illness and their loved ones.
Providing Advance Care Planning support through our volunteers
“The ACP volunteer service provides the patient and carer with an opportunity to explore their thoughts and wishes for the future.”
– Judy Barnett, Planning Ahead Volunteer
