Jane’s story

"Hospice care is about choice, independence, facilitating and empowering. We’re not fixing things for people – we’re giving people the tools to help themselves manage. We’re not helping – we’re helping people to help themselves.”
Occupational Therapist, Jane Iskander

My name is Jane, and I have worked as an Occupational Therapist at St Clare Hospice for nearly 8 years now. The role of an Occupational Therapist in a hospice is really broad, enabling people to maximise their potential within their lives. We work with people who are accessing all different hospice services, whether it is on the Inpatient Unit, in the community, or in Day Therapy.”

“An Occupational Therapist in a hospice assists people with anything from enabling them to access their bath, to getting in and out of the house, and engaging in hobbies they enjoy.”

“Those are what occupations are: the things that people do, how they live their lives, and do the things they want to do in life. They are activities of daily living – making a meal, making a cup of tea, going to the shops, living a life.”

“My support starts at looking at what the problem is for a person who is finding it difficult to do an activity. We break down where the problem lies, which could be that they are anxious to step out of the front door, or that they are finding it physically challenging – it is different for everybody.”

“Our support is really tailored to the individual’s needs and personal goals, and how they want to achieve those.”

“Whilst we look into sourcing equipment and resources, or making simple adaptations to their home, a lot of our role is also about motivation and emotional, spiritual (what gives their life meaning) and psychological support to empower a person to live how they want to live.”

“Throughout life, from when you’re a very small child, you have choices in your life. Yet, the moment that you get a diagnosis and a prognosis, it’s common that people feel like they’re having that control taken away from them. Life becomes about illness; disability; medication. The doctor says you have to go there, the doctor says you have to take that medication, you have to have this test, and that test, your family are worried about you and don’t want you to do this or that.”

“At the hospice and in the Day Therapy service, our holistic approach to care is very much about coping with change, and working to enable people to take back a bit of that control so that they can live how they want to.”

“One of my main roles at the hospice is to lead Day Therapy sessions. People starting the group for the first time often have many reservations about actually taking that first step in receiving hospice care.”

“Something that nearly all of us are probably familiar with is the feeling of not wanting to accept help, despite experiencing feelings of vulnerability. Somehow, it’s embarrassing to receive help. We grow up believing that we are strong, independent, and that we don’t need to be supported.”

“Yet, the key here is to understand that hospice care is about choice, independence, facilitating and empowering. We’re not fixing things for people – we’re giving people the tools to help themselves manage. We’re not helping – we’re helping people to help themselves.”

“In addition, we sometimes find that people don’t feel that they deserve the support we can offer, because there might be someone else ‘who needs it more than me’. There is this perception that there are these two sets of people: there’s me – whoever I am, who is normal, fine and just getting on with life – and then there are the ill people.”

“One of the huge benefits of attending Day Therapy is that when people join, they see people who appear more well than them, they see people who appear less well than them, and they see all of the individual personalities of those people as well. The group work as a team to help each other, and my role is to enable the group to do that.”

“Aside from that, people’s main worries and anxieties mainly pivot around a fear of unknown changes, and a fear of dying. People feel that if they recognise something, it’ll happen. If they accept their prognosis, it means they will die now; if they plan their funeral, death will happen sooner. It is just evidence that we are mortal. We as humans all experience these kinds of beliefs, and the anxiety of ‘tempting fate’.”

“In Day Therapy, there is an element of preparing for how a person might feel, and how they might cope with their feelings, later on in their illness. Being able to see people early on after their diagnosis means that we can address the emotional, psychological and spiritual issues they might be experiencing before other things become more prevalent.”

“Another very important thing about Day Therapy is that is instils a sense of normality for people.”

“When a person is at home, they’re the patient: the poorly person who everybody is worried about. They’re something different, and special. When attending a Day Therapy session, they become a member of the group. Although the group and the staff at St Clare care for that person and will do everything they can to address that person’s specific needs, they are just like everyone else. I actually think that is a real comfort to people.”

“The Day Therapy group is such an important service for people to have access to because of the huge changes we go through when we’re given a palliative prognosis, and when disease changes our ability to do things. The group is a vital support for people in those times.”

“It’s a shame that there are still these stereotypes of hospices that label them as dark, quiet places, where we all talk in hushed voices and people are dying. Quiet beds, in a quiet place, with quiet nurses – a place where people come to die. It causes people to find it very difficult to take the first step in visiting the hospice.  Yet, when they do, it’s not what they expect at all. It’s strangely lovely.”

“As soon as you get out of your car, there are birds tweeting and you can faintly hear the motorway. When you come in the front door, there are volunteers on reception to greet you cheerfully.

“If you walk past a Day Therapy session, or come and attend, you’ll find that it’s very often quite hilarious, with raucous laughter and lively chatter! There’s always something going on here.”

“It’s not always a happy thing that’s going on; obviously sometimes there are people who are dying. However, it is a privilege to work here, and it is so lovely.”

“There’s a lovely feeling when you come here; it feels like a good place to be – and patients and families often say that too.”

“I find it amazing when someone new comes into a Day Therapy session, and at the beginning of the day they’re like a rabbit in the headlights – terrified! Yet, by lunchtime or even by the middle of the morning, they’re joining in with the group. They go away and say ‘thank you very much, I really enjoyed it’!”

“In the morning session, we introduce the day by sharing a word to describe people’s past week or how they’re feeling. Usually, we hear words like, ‘dreadful,’ ‘tired,’ ‘exhausted,’ ‘frustrated’. At the end of the day, I do the same thing, and invariably people say they feel relaxed, refreshed, and that they’ve enjoyed a lovely day.”

“Day Therapy is also very much about independence.”

“People are getting away from their families, and coming to the hospice independently. People get to be themselves at St Clare. The dynamics of life carry on when they come into the Day Therapy group; if someone is a helper, they continue to help; if they’re a leader, they continue to lead; and so on.”

“I came to work in palliative care because I wanted to work with people.  This is the closest that you can get to people, and the people I work with are the closest to being themselves as you can get.”

“In a Day Therapy session, we try to help people to connect with themselves, encouraging them to recognise their value and the value in their lives – and then to enjoy it.”

“A morning session will be exploratory and reminiscent. It might be encouraging people to look at who they are, where they are, and how things have changed for them throughout their journey. There is a lot of peer support, as being part of the group gives extra value to the individual. We look at ways of addressing their concerns, talking amongst the group about how they might help themselves. An afternoon session is often more relaxed, perhaps with a visualisation activity or a quiz!”

“Most people will have a 1 to 1 session with a nurse during their day, where they can identify any further problems that a person might voice. I like to think that Day Therapy opens the door for people to access other services within the hospice, whether it’s occupational therapy, physiotherapy, or the Patient and Family Support team, who have counsellors, social workers, and a chaplain, offering psychological, emotional, spiritual, and practical support.”

“Hospice care is about what a patient wants, and it’s really important that we are working for them.”

“What I would love is for St Clare and the community to become closer together, and interlinked. That would really help the community to gain a better understanding of what we do here, and to understand what they’re doing when they support us. It would also help us to understand what we need to do for the community.”

“Hospice Care Week can enable us to reach more people who need St Clare, because the more people who get to hear about the hospice and understand it, the more people who would be willing to access the services. We want to support more people, and continue to make a difference in improving local people’s lives.”

– Jane

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