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Wednesday, October 9, 2013
What is your idea of a hospice? Lynne Mortimer challenged her preconceptions at St Elizabeth Hospice, which provides care for people across East Suffolk, during annual Hospice Care Week and came away with a very different view of its work.
There’s no easy way to say it, so I’m going to come right out with it. There is a prevailing view that people go into hospices to die.
So I’m going to scotch that idea straight away. People go into hospices to be helped to live life to the full.
They may have life-limiting illnesses, but the hospice will help to push the limits for its patients; helping with pain management, treatment and quality of life. It is about giving people more power over their lives, not taking it away.
At least, that’s what I saw when I visited the in-patients unit, last week.
On a previous visit, I met day patients who have access to all manner of therapies and treatments. Today, I met patients staying in for a day or two; a week or so.
Most of us will have visited patients in hospitals so the first thing you notice here or, rather, don’t notice, is the smell. St Elizabeth Hospice smells rather good. And the other thing I notice is the number of people − staff and volunteers − about the place. There are a lot of them.
The unit here in Ipswich has 18 beds and there are another three in Ditchingham, over the Norfolk border. The hospice served the whole of east Suffolk and part of Norfolk.
I am going to be chatting to patients who are staying over rather than receiving day care or home care. This may be because they are more poorly or they have particular problems that need to be dealt with such as symptom control and pain relief, while some people might choose to be here because it gives a family carer a break. There is also, of course, end-of-life care.
But while you might expect a regime here, it is as laid back as it can be without actually hosting wild parties. Patients can have their pets here. Dogs are allowed on the bed. I’m told one former patient had her horse visit.
Visiting hours are not an issue; people can come and go. Some might spend all day here and that isn’t a wearisome prospect as the rooms have been designed, as far as possible, to be a home from home. Children are encouraged to visit.
The family is very much a part of the ethos of hospice care which provides support for families who may be reluctant to talk openly because they don’t want to upset each other. It tries to help dispel people’s fears.
Beliefs are respected; a chaplain is available and the hospice is currently doing a lot of work with growing cultures in local communities, members of which might not have thought about using hospice care.
Kelvin Bengtson is St Elizabeth’s Hospice’ medical director. Warm, friendly, approachable, he tells me about the ethos on which St Elizabeth has built its formidable reputation. “The pen,” he states, “is mightier than the stethoscope.”
Although there is something very reassuring about a doctor wearing a stethoscope.
Kelvin has been at the hospice for just over five years, having started in general practice before going to a hospice and training in palliative medicine. He came to Suffolk from the north Thames area.
“From our perspective, at St Elizabeth Hospice, the important things are comfort, quality of life and an individualised approach. We try to understand what the patient wants and needs and see what we can do to deliver that for them. We have the time and resources. Hospice care is not a luxury, it is a necessity. The good will flows on from the good care.”
His words reference both the fundraising and volunteer support on which this and all hospices rely. Many of those who take part in charity events and many of the volunteers have a close emotional connection to the hospice through someone they love having been a patient here.
I ask Dr Bengtson about dealing with the death of patients. He nods.
“Death is one of the few certainties and it’s making the difference in that time. It’s not just one patient it’s a patient and all their loved ones; those who are left behind.”
Care can extend beyond the usual boundaries.
“Earlier this year a (dying) patient asked me to be at the thanksgiving service for her life. She asked me here in this room, with her family there. I had known her for four years.”
He attended the service.
While the patient/doctor relationship remains professional, Kelvin says: “In the type of work we do you have to give of yourself to make a difference. You have to be there, with them.”
But it’s the patient that determines the path of care. There is no one-size-fits-all approach. In keeping with the theme of Hospice Care Week, every person counts.
Before I meet the patients I am shown the kitchen which was refurbished two years ago to make it more homely. It is used by staff, volunteers, patients and families.
The 18 beds are shared out between rooms each with 3-4 beds, each in its own bay; side rooms and large family rooms. Each bay provides private space if people want it. There is access to outdoors and, on this glorious, sunny autumn day, the gardens look inviting.
Margaret and Michael Pepper are in one of the bays. Margaret has bone cancer and is in the hospice for assessment.
The couple live a few miles outside Ipswich and Michael spends most of the day with his wife. “I come up here about 11am and go about 7pm.” As we chat, he stays watchful, making sure Margaret is comfortable.
He confirms the rumours are true. The hospice food is “superb”.
Margaret had previously been on Somersham Ward at Ipswich Hospital. The specialist nurses who work with the hospices first referred Margaret to St Elizabeth. But there are a number of ways to get in touch with the hospice – one of which is for the patient him or herself to make contact.
Margaret is dozing and the room is peaceful. Michael says the staff and volunteers are “so helpful”.
While I use the word “peaceful” it is a vigilant peace. There is always someone on hand if help is needed.
In the next bay are Norman and Sylvia Hoddy from Felixstowe, Norman has Chronic Obstructive Pulmonary Disease, a respiratory condition. He is about to go home and a nurse arrives to talk Sylvia through his medication so I pop outside where I find Ivy Jones out in the garden, crocheting a jacket, plugged into her i-pod.
She is here, she says cheerily, to “give my husband a rest because he is so loving and caring and he’s my only carer. He’s having a break.”
Barry, her husband of more than 50 years, used to work in the print room at the East Anglian Daily Times. We talk about the old days for a bit.
She has myotonic dystrophia, a degenerative condition that affects her muscles. Diagnosed in 1990, Ivy went into a wheelchair five years ago. For her, the hospice is “like a home from home”.
“If I come here my husband comes here with me. We are a loving couple.”
To be honest, Ivy and I could just sit here and natter all day. But I need to ask about the hospice.
“I think it’s absolutely wonderful. I have written a little poem about it... it’s on the wall in the day centre.”
One of the other rooms in this part of the hospice is a comfortable conservatory, built for the hospice by a local company. A couple of weeks ago it was a wedding venue.
Time is precious and here, patients and their families and friends are given the freedom to live each moment as they want to live it.
I get a strong sense that every patient is first an individual. While treatment and medical care are vital, so is maintaining dignity. People are listened to.
Back on the ward I catch up with Norman and Sylvia, who love their seaside home in Felixstowe.
Norman has been cared for at home but it can take a bit of adjustment to get medication right and Norman says he’d had a bit of trouble with “gremlins telling me to do naughty things”. This brought him into the hospice last week. (I didn’t ask what naughty things but he tells me the aforementioned gremlins have now dispersed).
Sylvia says: “It’s absolutely amazing (here). I can’t thank them enough. They are there all the time; you don’t have to ask for anything but if you do, it’s there in two minutes.
“Norman has had three baths since he’s been here – he hadn’t had one for six months.”
It is easy to overlook the importance of a simple thing like a bath.
“This is the most wonderful place on planet Earth,” Sylvia says from the heart.
Summoning his breath, Norman explains that his medication has been changed and now “I feel absolutely normal.” Which is, perhaps, the best tribute you can pay to the skill of the medical professionals here.
Across the room, Doreen Clements, a former Ipswich police officer, agrees that the staff and volunteers are “wonderful”.
To be honest, I haven’t met anyone here today who isn’t wonderful. Today I have witnessed indomitable human spirit and a sense of life’s true values: companionship, love, friendship, and small kindnesses.