End of Life Carers Project – End of Year 2 Review

Francis Training CropUpdate from Francis Ngale, End of Life Carers Project Manager:

The End of Life Carers Project is now in its third year. A review of the first 2 years has highlighted the need for services that specifically help support the needs of carers looking after someone nearing the end of their life.

The project is funded to work exclusively with carers aged 65 or over and looking after someone who:

  • Has been diagnosed with a terminal illness, or
  • Is 80 or over, and has general frailty and/or co-existing conditions, or
  • Is in a residential or nursing home.

During the second year (which ended on 30 September 2016) we offered an assessment and support to over 100 carers. We also sought to increase awareness of matters relating to death, dying and bereavement by making the workshops we delivered as part of the project accessible to all carers across Westminster and Hammersmith & Fulham. Between March and July 2016, 6 workshops sessions covered: benefits & older people; will writing; advance care; planning for the last years of life; and advance planning & funeral costs.

A total of 86 carers from Westminster and Hammersmith & Fulham booked onto these workshops and there were 56 attendees. Furthermore, we also teamed up with Barclays to deliver Tea & Teach sessions for carers. These were attended by 17 carers who got help, advice and support around making the most of their laptops, tablets, iPads or smart phones.

Some of the attendees have subsequently been able to get a will for themselves or the person they are looking after. I also supported a number of carers in completing and registering Lasting Power of Attorney. Finally, we organised two trips during Dying Matters Week to the Poppy Factory and Trinity Hospice.

One of the recurring themes throughout this project has been the recognition that it is common in our society for carers and their cared-for persons not to talk about death. As a result, the opportunity to discuss wishes and preferences around future care and funeral arrangements are being missed. Far from being taboo, socially repressed or terrifying, death is much more personal and present than we choose to acknowledge.

We hear about and see images of death every day – and the inevitability of dying means we can’t really avoid it. We want to support and encourage all carers and their cared-for persons to discuss death – or at least to consider and think about a checklist of 4 important issues:

  1. Legal and financial matters: such as writing a will and registering a Lasting Power of Attorney;
  2. Organ donation: registering and letting your family know your decision;
  3. End-of-life care: writing an advance care plan including future care wishes and preferences;
  4. Planning your funeral: the loved ones who will honour you in death will value this input.

For more information, advice or support contact me on francis@carers.network.org.uk or call the office on 020 8960 3033

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