Terminally ill man shares the challenges of life in a global pandemic to help others

A 56-year-old man with terminal cancer is speaking of his experience living with limited time during a global pandemic as part of ‘Dying Matters’ Week. Paul is asking the people of Essex to support the national campaign, Dying Matters Week, and to join the conversation around death, dying and bereavement; something so many people are having to face unexpectedly over the last few months.

Paul Budden is dealing with the impact of coronavirus (COVID-19) whilst facing his terminal illness of advanced stage 4 prostate cancer. Due to his condition, Paul is self-isolating with his wife, Holly, for a minimum of twelve weeks which is a struggle for many people in similar situations.

Paul recently moved to be closer to those he loves but now he cannot see them. He said: “I want to go outside and carry on with the life I have left and spend as much time with family and friends as I can. I had a stage of thinking I would be invulnerable because we don’t hang about in groups, but the more I learnt, the more I discovered that the things I wish to do involve being close to crowds.”

Despite the limitations of lockdown and his diagnosis, Paul’s spirit is not broken, and he spends his time in isolation giving back to the NHS. Paul said: “I’m tackling this head on and finding a way that I can help, whilst keeping myself safe is very important to me. Giving back to the NHS and following this campaign gives me a level of support during our ‘new normal’.”

Paul and Holly are busy producing face shields as part of much needed Personal Protective Equipment (PPE) with their 3D printer and are dropping off the products to nurses during his hospital appointments. Having distributed 80 face shields since March, Paul said: “This way, I can help keep our vital health warriors healthy and safe. Turns out that all they have is masks, no shields or anything in the cancer unit. I left them 25 shields with my Cancer Nurse Specialist who was very grateful”.

This year, the ‘Dying Matters’ campaign, which runs 11th-17th May 2020, gives us an unparalleled opportunity to place the importance of talking about death, dying and bereavement firmly on the national agenda. Paul and Holly are supporting the campaign in Essex, led by Dying Matters in Essex, a dedicated group of local organisations providing support across the county.

Clare Turner, founder of huunuu, a key partner in the group said: “Everyone knows that talking helps most situations and I have always believed we should talk about dying. Dying Matters week serves to highlight these issues and given our own personal circumstances I feel it’s really important to take this opportunity to get involved and encourage our communities to talk to their loved ones.”

My brother, Paul, is no different except a consultant has told him he has limited time, but death is the one true common denominator across the globe! My hope through this truly awful time for families, friends, carers and clinicians is that we all talk and share a little bit more and take time to listen to each other.”

Rachel Horton-Smyth, Communications Lead at Healthwatch Essex, said: “We recently produced a report on end of life care which highlights the challenges that patients, families and hospital staff experience when planning for end of life. Much of what we discovered is helpful to people facing the end of life and professionals supporting people at the end of life, during times of normality. But we are living in extraordinary times, where normal practices like being close to one another at the end of life and attending ceremonies to commemorate someone’s life are not possible in the way that they previously were.

It is more important than ever that we help people have the conversations that they need, and want to have, and help them access the support services that still are available during this time. With the increased complexity of coronavirus affecting local services, we are proud to be supporting this campaign and hope to encourage people to have these crucial conversations.”

Our Information and Signposting Team are available to support you with all health and social care enquiries. For confidential support, call 0300 500 1895, text 07712 395 398 or email info@healthwatchessex.org.uk.”

Click here to be a part of the movement in Essex by joining the conversation online with the following upcoming events:

  • Four free virtual death cafes running throughout May. This is an online space to speak openly with no agenda, objectives, or themes.
  • Online storytelling events
  • Art exhibition in partnership with the Ideas Hub.

Alternatively, tune into the Dying Matters in Essex social media channels during the week for a variety of supportive videos and updates – Facebook & Twitter.