Hospices & their ethos of care

st catherine's logoI used to have an irrational fear of hospices.   The very sound of the word, with its soft susurrations, whispered to me of sorrow and foreboding.  On the rare occasions I allowed myself to imagine what a hospice might be like, I conjured up visions of corridors punctuated with shadowy doorways beyond which lay sights too sombre to think of, too remote from my colourful life even to contemplate.

I’m pretty sure that my reaction wasn’t (and isn’t) an uncommon one.  It was born, of course, of ignorance.

This week, my two siblings and I attended an intimate, candlelit event in our home town of Dorking.   It evoked, through its familiar church setting and seasonal carols, a sense of peace and continuity, tinged with a pine-scented sadness as we remembered our dad.

The tree of light service (there were 13 others throughout the area) was organised by St Catherine’s hospice in Crawley, which had provided our father with palliative care – in his own flat – during his last years.

Casting sideways glances at the congregation, muffled in scarves and winter coats on a bitter December night, I reflected on the profound human experience of losing a loved one that had drawn us together and the extraordinary institution which, in its many and varied ways, had offered us solace and support.  And I thought for the umpteenth time since I’d first encountered St Catherine’s of just how different it was from how I’d imagined.

For although, to my knowledge, dad never set foot inside it, I did.  I’ve written here about the competing emotions I experienced as my father slowly relinquished his hold on life, and how my counselling sessions at St Catherine’s saved my sanity (and quite possibly my marriage) as stress took its toll on me and those around me.

I can still remember how nervous I was on the fresh spring morning I first ventured into the hospice, how I fought my doubts and slowed my pace as I approached the front door, hesitating for a moment before pushing it open.

I entered a place of calmness and warmth, brightness and light.  Every Friday morning for the next few months, I drove from London to Crawley and spent an hour in the company of a woman I barely knew who, with a few well-chosen words and a fathomless capacity for listening, eased the pain of a seemingly endless period of grief that threatened to subsume me.

The support I received from St Catherine’s formed just a small part of the comprehensive, compassionate care and understanding that it provides, free of charge, for the thousands of people living in Crawley, Horsham, Mid-Sussex and East Surrey.

tree of lightUntil he died five years ago, dad lived in his own flat and was visited by community nurses from St Catherine’s.  Until he came under its auspices I’d no idea that 90 per cent of its patients are cared for at home.  I’d no idea that it provides welfare advice, that it offers patients the chance to meet socially, to enjoy a range of alternative therapies such as aromatherapy and massage.  To be honest I’d no idea, until someone mentioned it when I was seeking help, that it had a team of counsellors.  Hospices are far more than mere buildings; they house an ethos of care.

Behind the philosophy sits a highly personal holistic approach which places the physical, emotional and spiritual welfare of patients and their families at its heart.  How good that sounds to those of us who’ve struggled too often with process-driven systems of care for older people, particularly those with dementia.

Over 50 per cent of St Catherine’s patients are discharged after a short stay; they might be admitted for assessments, for symptom control, or to give their family carers some respite.  Others are admitted to one of the 18 in-patient beds for the very best end of life care.

Now that I’m beginning to understand so much more about dementia, with which my mum lived for a decade, I find it sad that hospices –the first of which was established almost 50 years ago to care for those with incurable illnesses – rarely admit those with mum’s condition.

It seems I’m not alone.  Last year the Commission into the Future of Hospice Care published a report calling for the NHS to help with training hospice staff to care for people with other complex terminal illnesses, including dementia.  But this will cost money, at a time when we all know the NHS is cash-strapped.  In general hospices receive a third of their finance from government and raise the remainder through fundraising.

The National Council for Palliative Care (NCPC) says that a partnership between dementia care and palliative care is key to achieving flexible, responsive services that help deliver a good death for all those with dementia.

Having discovered that in 2010-2011 just nine people with dementia were seen at specialist palliative day care services, the NCPC recommended a review of admissions policies, internal monitoring and staff education programmes to ensure that those with dementia have full access to hospice care.

Such developments are part of a growing national debate about how we as a society care for, and pay for, increasing numbers of older people and those with dementia.  It is a complex, nuanced debate predicated on the simple truth that the vast majority of us grow old and when we do so we remain human, with human needs and emotions, and should be treated no differently from our younger counterparts.  For far too many, this doesn’t happen.

An exploration of how the hospice movement might be helped to offer more of its valuable support to those with dementia, is surely worthwhile.  It is possible; in some places – including St Catherine’s, whose staff run training and education programmes on dementia care – it’s already happening.

Willow Wood hospice in Ashton-under-Lyne has a dedicated dementia service led by Ann Regan, a nurse with many years’ experience of the mental and physical health needs that people with the condition present towards the end of their lives.

Dementia has been misunderstood for far too long; those living with it and their families have been side-lined, often stigmatised, by society.  I believe – but then I’m generally a glass-half-full girl – that attitudes are changing, albeit slowly, and that finally, hopefully, the condition is attracting the positive, constructive attention it deserves.

It would certainly be nice to think that hospices, with their ethos of care that so helped me and my dad, could one day provide more support for people like my mum.

10 Responses to Hospices & their ethos of care

  1. Vicki 21st December 2014 at 8:41 pm #

    I’m so glad you posted this. I work for hospice and I’m glad you have mentioned all the other things we do that people do not know about. So glad our input was so beneficial to you, things like this give me such good job satisfaction xx

    • Pippa Kelly 22nd December 2014 at 6:59 pm #

      Thank you Vicki. Your input at St Catherine’s was, in its own quiet, understated way, crucial for me. Hospices are extraordinary things and it would be good to think that the very best bits of them could be translated into other parts of care, and even life.

  2. Wendy Lester 22nd December 2014 at 6:29 am #

    Thank you Pippa, a most excellent blog.

    Eventually all Hospices will, I’m sure, lead the way, with our prayers, enlightenment and determination.
    Dementia is indeed a most heartbreaking
    cruel condition that is so misunderstood.

    Wendy

    • Pippa Kelly 22nd December 2014 at 6:57 pm #

      Many thanks for taking the time to post a comment Wendy. I think you’re right about hospices leading the way and I hope (and believe) that many examples of best practice in dementia care will eventually become the norm as the word begins to spread.

  3. Nigel 24th December 2014 at 6:25 pm #

    Pippa you illustrate so eloquantly what power there is in sharing what is real – like Vicky I too work at St Catherines and it is a privilege to serve the community that we do. The longer I work with the dying and their families the more I learn about life and the small things that are so important to each one of us. Dying is never easy, it is done differently by each person. Fear of the unknown is what most of us can identify with. Having a terminal illness including diseases of cancer, MND and other neurological illnesses, Dementia will take us all, wether patient or a loved one, to places in our lives we would rather avoid and will often include fear of unknowns. How we often support our patients & families is to get alongside them as best we can and share some of our skills and experience to break down these fears. We don’t always get things right because dying is not an exact science. What I think is also true is yes we put ourselves forward as a resource for the community, to show leadership in this field, but we can’t do this on our own. Prof Bannerghee at his talk on Dementia care at Brighton Festival last May ended by saying that we need to create Dementia friendly communities – but to drop the word dementia – so friendly communities – reaching out to each other with gentleness and small acts of love and care.
    Pippa thank you for raising awareness of the work we do at St Catherines Hospice.

    • Pippa Kelly 26th December 2014 at 4:24 pm #

      Many thanks Nigel. The work you all do at St Catherine’s and other hospices is extraordinary – and the point you make about how those who are dying often show us how to live is very true.

  4. Jan Inman 22nd January 2015 at 8:45 pm #

    Great blog as usual Pippa I like you hope that things will change in the future but not without people like us fighting .
    Sometimes I feel like that’s all I do but I can not give in .
    So thank you for all you do .
    Love Jan.xxxx

    • Pippa Kelly 22nd January 2015 at 9:48 pm #

      Many thanks Jan. Never give in. x

  5. Deborah Bryan 13th June 2016 at 9:53 pm #

    Hi Pippa,
    It was lovely to read your blog about St Catherine’s and it Brough back lots of memories for me.
    My story with them starts back in April 2011 when my dad came home from France to spend his final months with me and my sister. He was placed under the care of the hospice a few days after arriving here and none of us knew enough about St Cats but my neighbour was a nurse there and she came into us and explained all about their care and services and it was a great help.
    Shortly afterwards we’re given a family support carer both for my dad, myself and sister and she was lovely we asked her alsorts of questions at any time. I looked after my dad at my home for 5 months and still doing my full time job (I don’t know how I did both). My dad went to the day centre and made lots of friends and he was able to talk to people going through the same the situation.
    Both myself and sister had counselling at the hospice. For me it was my time to have my tears and get my anger out for any hour and they never judged you.
    When it was time for my dad to go into the hospice. It was like going home somewhere safe and secure and he’s body woke up as he wasn’t ready to go. I would go everyday with days going for counselling first. I would chat to patients and families on the ward and in the big hall with laughter and sad and happy tears. There never a feeling of sadness there it was like a comfort blanket being wrapped around you. My dad stayed at the hospice for several weeks but went to a nursing home but still under the care of the hospice staff and both myself and my sister right up until he sadly passed away in December 2011. I would like to give back what I was given by doing some voluntary work for them at the hospice. I’m doing my first midnight walk in a few weeks time and really looking forward to doing it. Warm wishes Deborah Bryan

    • Pippa Kelly 16th June 2016 at 2:12 pm #

      Hi Deborah, Thank you so much for your lovely comment. I thought your description of being in the hospice as like having a comfort blanket wrapped around you was spot on. I did some volunteering at our local hospice, Trinity Hospice, up here in London for a while. It was certainly good to give something back and,just as with St Catherine’s, it was a surprisingly happy place (though obviously sometimes very sad), full of warmth, light and kindness. All the very best to you and your family, Pippa

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