World Hospice and Palliative Care Day

This post’s got quite a history. Originally intended to follow on immediately after my discharge at the start of August, the piece ‘in praise of my local hospice’ (as it was originally titled) was my attempt to put a few words together in recognition and thanks for all the wonderful care I received at St Michaels Hospice. It somehow seemed fated not to be written as recent events took over forcing it to be continually rescheduled. Then with my second admission to the hospice I decided that it would be the first post I would publish once I was discharged. However with World Hospice Day (October 9th 2010) upon us (something which I didn’t even know existed) it seemed the ideal opportunity to do something in recognition of all the wonderful things that St Michaels, and indeed hospices all over the world do to ease people’s suffering and to allow them to live out the remainder of their lives with as much dignity as possible. I’ve also taken this opportunity to upload a new gallery of photos that were taken during my first visit to the hospice but were never posted. You can find them here.

What comes into your mind when you think of hospices? Well if you’re anything like I was before all this happened, it would be something along the lines of ‘it is a place to go to spend the last few days or weeks of your life’: in other words once you go there you never leave. I must admit that I was a bit apprehensive about meeting them at first. Bear in mind that I had only been diagnosed a few months earlier. I was still working, still driving a car, and already my GP was telling me that my case was being discussed with the hospice and would I like to meet them? Why had I appeared on the hospice radar so soon? Were the doctors not telling me something? Did I have less time left than I thought? It was to be honest quite a shock to hear the ‘H’ word in conjunction with myself for the first time.

Lara, my palliative care doctor, soon re-educated me when she first introduced herself to me and described the range of services that St Michaels Hospice offered. I’d been given something of a standing offer to come along and visit their day care centre and to take advantage of such things as alternative therapies, but I had always shied away. I felt that I wasn’t quite ready to visit a hospice despite now having a greater understanding of their role in the community. And to be honest it probably would have stayed that way for even longer had it not been for the sudden change in my situation back at the end of June when my legs finally gave up all pretences at trying to support my body. Fortunately I’d already had a taste of hospice care through their relatively new hospice at home service when I was suffering terrible pain all night in my lower spine earlier in the year. Because of this it made the transition to full in-house care that much easier to accept and I’m very pleased to say that all my experiences of life inside a hospice have been incredibly positive.

In my time at St Michaels I’ve seen a level of professionalism, care and concern that is simply hard to match. In fact I would say that it is the gold standard in care, certainly in this area. The local care agencies would do well in learning from them and using them as a benchmark. Take recruitment for instance, without exception everyone I came across was a genuinely nice person who would go out of their way to help you as much as possible. Nothing seemed too much trouble. They were kind, courteous and very friendly. The hospice also has an ongoing training programme and clearly believes in investing in people – and it shows!

What also impresses me is the tremendous team spirit and the way everyone acts in a professional and yet friendly manner, all the while offering you maximum dignity especially when performing personal care. They are also very good at communicating their intentions ahead of actually implementing them. For instance whenever I’m hoisted the staff will describe each step of the process before proceeding. Contrast that with some of the agency workers I’ve had who spend more time chatting to each other than focusing on what they’re doing.

The atmosphere here at the hospice has a very calming effect. Nothing seems rushed and things take as long as they need. Don’t get me wrong, I’m sure that behind-the-scenes there is a great deal of work going on supporting the in-patients, but they never let it show.

But St Michaels isn’t just about having an in-patient unit although that is clearly the one I have had the most experience of. It also has an expanding hospice at home service as many people wish to be cared for in their own home environment for as long as possible. In addition there is a day care centre where patients living at home can come twice a week and participate in such things as arts and crafts (for instance there is a lovely conservatory that has been made into a woodwork workshop where people can build such things as birdhouses and miniature wheelbarrows) or just enjoy companionship and lively debate. Amongst the other services that the hospice offers is a full range of complementary therapies some of which I have sampled myself and found to be very stress relieving.

Running a hospice, particularly one that offers such a wide range of services to the local community doesn’t come cheap in this day and age and the sad fact is they get very little money from the government. Consequently fundraising is absolutely crucial in enabling the hospice to continue offering the high level of care that they do and events like the Big Wheel and Midnight Walk have become regular and popular local community events. Like all charities they are heavily dependent on volunteers, and St Michaels is fortunate to have between 600-700 volunteer staff who bring with them a wide diversity of skills and life experiences which enable them to fully support the hospice staff in a wide range of areas.

And so we come to World Hospice and Palliative Care Day which is to quote “a unified day of action to celebrate and support hospice and palliative care around the world”. You can find out all about it and this year’s theme of ‘sharing the care’ here. If you want to find out what’s being organised around the world today to raise awareness (and much needed funds) please click here. If you would like to make a donation to St Michaels Hospice please click here.

In closing I would just like to express my gratitude to all the wonderful people I’ve met, who take such good care of me and have made my stays here at St Michaels Hospice very peaceful and enjoyable. I’d give them all a medal if I could. I just wish we could take what they have at the hospice, scale it up and wrap it around the world. The world would be a much better place for it.

So please join with me in recognising and appreciating the work done by these hard-working and dedicated people on this, World Hospice and Palliative Care Day.

Mark

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2 Responses to World Hospice and Palliative Care Day

  1. carol diane says:

    A few days before Christmas, 2009, my childhood friend, Susie, was admitted to our local hospice to live out her final days. She had endured three surgeries, and many therapies, for a malignant brain tumor. She had been dealing with an ever-worsening condition for seven years. I was apprehensive when I entered the hospice to visit her—these were grave circumstances, and I was a complete stranger to the staff. Also—what kind of shape would she be in? It was dark, early evening—it had been a harried commute from work—I felt on the wrong wavelength, too worldly, out of touch.

    I need not have worried. The atmosphere was cozy—a Christmas tree with twinkly lights stood in the entrance hall and colored lights lead me to the nursing station. The staff was welcoming, and jolly! Would I like some apple cider? In her room–there was Susie–ensconced under a pretty homemade quilt. She was not awake, but I spoke to her of days gone by, the beauty of the Christmas lights outside, and the pretty wreath on her door. All was right with the world.

    Did she hear me? I don’t know.
    She died later that night.

    And so–my last memory of a hospice.
    I cannot say enough good things about the place.

  2. Jane C says:

    Thank you for this wonderful post, Mark. Like you, Richard wasn’t sure, when the concept of the hospice (in our case Willen Hospice in Milton Keynes) was first introduced to him, whether it was something he would want to embrace in the early stages, but in fact the hospice-at-home service was absolutely marvellous right from the outset, even down to the wonderful therapist who just came to massage his arms and legs each week.

    When he then had a major chest inefction/pleurisy further down the line and was admitted to the hospice for 10 days so that they could manage his pain levels better than I could at home, we both experienced real love, care and attention from all the staff and they were so keen to make sure that I, as his carer, also had the chance to have some good food and some rest so that I could recharge my batteries – nothing was too much trouble. When we returned home, the hospice were in touch all the time to make sure we were both ok.

    Willen is beautiful, set in wonderful gardens with trees all around and overlooking Willen Lake, a bird and wildlife sanctuary, with a Buddhist temple on its shores. It’s no mistake that the hospice is placed where it is and Richard spent a good few hours ensconced in his wheelechair just able to contemplate the view and experience the serenity. Right from the outset of his MND diagnosis, he had expressed his wish to die at home, but when it came to it, despite not having really been able to speak at all for a few weeks, one morning, he managed to whisper just one word to me – “hospice”.

    And that was where he died that same evening, in a place where he knew he was surrounded not just by “staff” but by caring friends.

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