Supporting unpaid carers in Westminster City Council (WCC), Royal Borough of Kensington & Chelsea (RBKC), and Hammersmith & Fulham (H&F) 

Are you caring for someone with a life limiting diagnosis? 

When someone you care for has a life limiting illness or is reaching an age where they are becoming more vulnerable, there may be many emotional, practical, and medical considerations for both them and you. 

This may include: 

  • Care arrangements and preferred place of care  
  • Coordinating health and financial affairs  
  • Planning ahead and recording wishes  
  • Liaising with professionals and services  

We aim to support unpaid Carers to make caring as manageable and least stressful as possible. 

Is this service right for me? 

The person you care for may be: 

  • Diagnosed with a life limiting illness or disease 
  • 80 years old or over, and considered vulnerable 
  • Living with a long-term or complex health condition 
  • Living in a care or residential home 

If you are an adult unpaid Carer supporting someone over 18 living in WCC, RBKC, or H&F, then we may be able to support you, and can help you navigate liaising with health and social care professionals, local authorities, and other agencies. 

What support is available? 

We offer: 

  • Online and community workshops  
  • One-to-one guidance and support  
  • Help prioritising urgent concerns  
  • Peer support and connection with other carers  
  • Newsletters with updates and resources  
  • Flexible support via phone, email, and online  

Support is tailored to individual need and available resources. 

At Carers Network, the wellbeing of both carers and the people they support is central. We offer free, impartial, and practical guidance. You are not alone. 

Advance Care Planning (ACP) 

Advance Care Planning is a voluntary process that helps people think about, discuss, and record their wishes, values, and preferences for future health and social care. 

This is especially important if there may come a time when a person cannot make or communicate decisions. 

ACP can include: 

  • Lasting Power of Attorney (LPA)  
  • Preferred place of care  
  • Treatment preferences 
  • Religious, cultural, or spiritual wishes  
  • Who should be involved in decisions  
  • What matters most to the individual  

These conversations should be supported by GPs and healthcare professionals where appropriate and recorded with health care teams and places of care, to ensure that the wishes of the individual are met on their care pathways. 

Early planning helps reduce uncertainty and ensures care reflects personal wishes. 

Advance Care Planning tools and support: 

  • Gentle Dusk: Resources for funeral planning, wills, and end-of-life planning conversations. 
  • MyWishes: Digital platform to record; Funeral wishes, Health and care preferences, Digital legacy, and important documents and contacts. 
  • Hospice UK: Guidance on Advance Care Planning and planning ahead. 
  • Maggie’s: Emotional and practical support for people affected by serious illness. 

Digital Legacy (Online Accounts and Digital Life Planning) 

Digital legacy refers to the online presence and digital information a person leaves behind. This is an increasingly important and overlooked part of Advance Care Planning. 

It may include: 

  • Social media accounts and email accounts  
  • Online banking, subscriptions, shopping/ retail accounts 
  • Photos, videos, music, cloud storage, crypto currency 
  • Messaging apps and digital communications  

Hospice sector guidance highlights that planning for digital accounts can help reduce stress for families and ensure a person’s wishes are respected after death, and it can: 

  • Reduce uncertainty for families and carers  
  • Help protect privacy and personal data  
  • Ensure wishes about online accounts are respected  
  • Preserve memories if desired  
  • Reduce administrative burden after death  

Supporting digital legacy planning can include; Naming a trusted person to manage accounts, recording wishes about account closure or memorialisation of social media accounts, sharing access securely where appropriate, and including digital assets in Advance Care Planning discussions.  

Resources 

  • MyWishes: Includes digital legacy planning tools alongside funeral and care wishes. 

Funeral planning and financial support 

Funeral planning can help reduce stress and ensure wishes are known in advance. It can: 

  • Ensure preferences are respected  
  • Reduce pressure on families and carers  
  • Support financial planning  
  • Provide clarity at a difficult time  

Always check providers are authorised by the Financial Conduct Authority (FCA): FCA Funeral Plans for Prepaid Funeral Plans 

Ways to reduce funeral costs can include; Direct cremation, natural or woodland burial, Government support schemes, or Body, organ and tissue donation | Human Tissue Authority (must be arranged in advance). 

Funeral Expenses Payment (DWP) GOV.UK Funeral Expenses Payment may help with up to £1,000 towards funeral costs. Applications are usually required within 6 months. 

Funeral Planning tools and resources 

  • Gentle Dusk: Downloadable funeral planning tools to record wishes in advance. 
  • MyWishes: Digital platform to record funeral wishes. 
  • Hospice UK: Guidance on Advance Care Planning and planning ahead for end of life. 
  • Marie Curie: Practical information on end-of-life planning and caring support. 
  • Sue Ryder: Support with bereavement and information on planning funerals. 
  • Age UK: Advice on planning ahead, funeral arrangements, and end-of-life support. 

Find out more

Contact Amber Poulter, End of Life Carers Project Manager on amber.poulter@carers-network.org.uk