Why I volunteer: “To do something positive after the death of my daughter”

Categories: Community Engagement.

Volunteering should have been in my blood. My mother first worked with the Women’s Voluntary Service (WVS) and then for almost the rest of her life for the local hospital, church and school. When my father retired he worked for Amnesty International and spent a good deal of any other spare time driving his ‘old people’ – mostly younger than him – wherever they needed to go.

But as a journalist, writer, design consultant and occasional TV presenter (for the first 13 part series on decorating in the UK and US) working between the UK, US, France and the Antipodes, I had very little spare time. The idea of volunteering for anything had not really arisen until just after the totally unexpected death of my younger daughter from late onset epilepsy.

This deeply sad event happened only a few months after I had moved to a small flat in Clapham Old Town in South West London, about 10 minutes walk from the eponymous common and 15 minutes, as it happened, from Royal Trinity Hospice on its Northside edge. Despite all the shock and worry I was still grateful for the fact that my daughter, lying in a coma, had been treated so tenderly in those last days at the ICU in Salisbury Hospital, Wiltshire, that I really wanted to give something back. To do something positive in the face of all this family distress and upset. But what, exactly?

Then, about six weeks after her death, walking my dog, which had been hers, by the handsome early 19th century houses that formed Trinity, I decided on the spur of the moment, and really knowing shamefully little about hospice, let alone palliative care, to go in and see if they needed any volunteer help.

After various interviews and due diligence I was offered a job as a patient escort, assisting the driver of the converted minibus/ambulance to collect patients from their homes, accompany them to whatever service they were attending, wait for them and then see them home again. I did it three days a week from around 9am to early afternoon. Often there was a great deal of tricky manoeuvring to get people down stairs, or through doorways and into elevators with their awkward walkers or wheelchairs, especially if they were carting oxygen tanks around.

Some needed a lot of reassurance. Some were so fragile and in pain you nervously anticipated every bump and jolt in the road. But most of the regulars, once you came to know them, began to chatter away about their lives and family problems, and had obviously become very fond of the alternating drivers, Paul and Sue, who listened and joked and teased all to the background of Radio Magic, and made everyone feel as easy and relaxed as possible.

What was disturbing was the realization of how very lonely so many of the patients were and how much they relished any company, particularly when they seemed reluctant to be dropped home again. And no wonder; from the first week of volunteering I noticed a wholly unanticipated lightness of spirit about the hospice, a comforting welcome and warmth in the atmosphere which unexpectedly accompanied a general resignation to approaching death, and to underline subtly that we all had to die sometime, somehow, of something, so how much better – if we were fortunate enough to have the chance – to do it as well and as comfortably as we could.

I rapidly came to admire and wanted to know much more about the whole idea of hospice and palliative care and to think of the Day Centre as a sort of club which offers so much help, so many distractions and so much entertainment to ambulatory patients with a terminal diagnoses, and now to those with chronic illnesses and dementia as well. “A club,” as one patient told me, “which no one wanted to join but which everyone ends up appreciating.”

Not only did the patients interact and make friends with each other, free to easily discuss their symptoms and fears, but volunteers made friends amongst themselves as well. And I also admired the fact that so many of the staff were so young and friendly as well as dedicated. I truly looked forward to my hospice days and began to try to find out as much as I could about the hospice and palliative care movements, even visiting America’s first hospice near Yale University, inspired by Dame Cicely Saunders who had started St Christopher’s, the first ‘Modern’ hospice.

So when after about two years, the then Chairman of Trinity, Derek Wyatt, himself an ex-publisher, asked me if I would like to think about writing a book to celebrate Trinity’s 150th year, I was happy to try. But I ventured to suggest that as I understood it, so much had changed in the hospice and palliative care movements in the UK and internationally over the last half century, would it be an idea to research their history worldwide and write about their various pioneers and enormous achievements for a lay audience who may have been as unaware as I had? Since I could not volunteer in a number of different hospices I would use Trinity as an example of day-to-day workings. He and the board readily agreed.

In fact, so many people had commented that it must be really gloomy volunteering at a hospice that I was anxious to broadcast that on the contrary, hospices are invariably calm, curiously happy, even positive places and what a difference they and the increasing hospice at home services can make to the last days of both patients and families.

The book is now finished and scheduled for 2018 – a bit late for Royal Trinity’s 150th anniversary but a tangible entity called ‘Living Every Moment’ (Trinity’s sub-title). Instead of escorting patients I now help to run the hospice’s weekly ‘Thursday Club’, a drop-in coffee morning with a core of regulars and additional visitors, some of them from the In-Patients. A club within a club. And the most cheering thing about it is that some of the patients who come regularly are ones I used to escort when I first started nearly five years ago.

For more information visit Royal Trinity Hospice 

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