My name is Hannah, I’m a 21-year-old writer living with a life-limiting illness. I use a hospice – which is a great topic of conversation to make everyone collectively choke at a dinner party. I don’t have cancer, and I’m not ‘actively dying’, as you may expect. I have a complex medical history, and thus a shortened lifespan, which is why I qualify for hospice in a respite capacity. Respite offers my carer (my mum) a holiday, while I am in the safety and wonderful surroundings of St Mary’s Hospice in Ulverston, Cumbria. Not only this, but I’ve been able to trial drugs I would have otherwise needed to be admitted to hospital for, and I have been on nights out with friends (past midnight), which the nurses love, encourage and facilitate.
Something the hospice does in this enthusiastic fashion is Christmas. Christmas begins in the community, with the Barrow Santa Dash. This event is a rather amusing one to watch – hundreds of people, dressed up as Santa, complete a sponsored 4k walk or run to raise funds for St Mary’s Hospice. A huge component of what makes this event so successful is the fact that the event is accessible even to wheelchair users.
This is one of many ways the hospice encourages people like me, as both a patient and human, to get out in the community if we are able. A common denominator with many people who are seriously ill is that people stop knocking on your door. I have had this in a rather extreme fashion, because I became ill at 17, and while I was in hospital for six months my friends moved on to university. I don’t blame them, but it has left me quite isolated – I’ve had to start again in both finding myself and new friends. Part of this discovery process was accepting myself as a palliative care patient, and the hospice have been a very positive factor in that. They take you as you are, and help you build on that.
Mince pies are provided, as well as – to the surprise and glee of many – a very well stocked drinks trolley.
The hospice also organises multiple ‘Light Up a Life’ events held in the local area. These are designed to allow those who have lost someone, at the hospice or elsewhere, to come together and light a candle on the beautiful St Mary’s tree. There is a 45-minute non-denominational service, with thoughtful readings and the opportunity for family members to catch up with hospice staff over mince pies. This is another factor of the hospice. Their aftercare for those who have lost a relative is lifelong. I know a lovely lady who has been widowed over 20 years ago who still goes to these services, and some long-serving staff remember her husband and talk fondly of him to her. She has told me it feels like he’s back in the room with her, if only for an afternoon, during the gaping hole of grief that is the festive period.
In the In-Patient Unit (IPU) Christmas is a huge occasion – because, even though this isn’t my last Christmas, for many of the care recipients it is. I have heard from numerous families that the hospice Christmas is as close to a family Christmas as is possible. The wonderful thing about St Mary’s is that it its design medical features (for example, oxygen valves and furniture) have been cleverly hidden and furnished to allow the room a homely feel.
Staff even decorate every room with a mini Christmas tree and tinsel. On Christmas Day, staff dress up in a posh festive outfit, as you would in your own home, and try their best to leave patients (where medically possible) uninterrupted to allow for that irreplaceable family time.
Families are encouraged to visit as a group (whereas in hospital it is only limited to two visitors), and mince pies are provided, as well as – to the surprise and glee of many – a very well stocked drinks trolley. Staff sing carols at the end of patients' beds, and even give patients presents. There is a scheme in the hospice gift shop, a buy one get one free of sorts, which allows members of the public to purchase a gift to take home with them, and ‘unlock’ a free gift for a patient or their carer.
Every patient is given a chef-cooked meal on Christmas Day. This can either be the traditional meal or anything the patient fancies (this goes for every day, not just at Christmas). A huge barrier during end-of-life care is loss of appetite, and the quality of food has a huge bearing on how much patients can manage.
St Mary’s manage to de-medicalise Christmas in a way that is very tricky to achieve. They recognise that living and dying is an individual act, that people are not just medical conditions. St Mary’s, and other hospices, are rightfully well loved. If you have the ability to do so, please donate to your local hospice. You may need them one day – I didn’t expect to and would be lost without it.
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