After complications following cancer surgery, Krista requested a referral to our In-Patient Unit (IPU), as she knew about the services that hospices provide to those living with an advanced or terminal illness.
“I’ve had a lot of experience with hospices, because I'm a doctor,” she said. “I actually worked as a palliative care doctor in a hospice, in my training. I’d had heart and lung surgery at the Royal Brompton Hospital and I’d gone home to recover, but I had some post-op complications, so I went back to hospital so they could get on top of things. I was in a lot of pain. It got to the point where I felt that I’d deteriorated quite a lot and it wasn’t getting better. I thought I needed a syringe pump and I wanted the best people to be looking after that pump, so I said I would like to go to a hospice, and that I thought the closest one to me was Phyllis Tuckwell, and asked if we could make arrangements. From when I asked, it didn't take long at all, just a few days. All of a sudden I had a bed and I was coming.”
“It was a huge relief to know that I was coming here. My pain is now completely under control and I'm much more comfortable, which is a huge relief. I feel really safe here; it's been a very positive experience. When I arrived, straight away they were on it with my syringe pump. The doctors had the expertise to know which of all the many things they should focus on, and they told me what medications they were starting me on, and that it would be a good amount to cover my pain. They added an anti-anxiety medication too, which helped me a lot. Because a lot of my tumours are affecting my ability to chest extend, it can feel like my chest is stuck, so that makes me feel a little anxious sometimes. But the medication they added to the pump has helped me a lot with that. Since I've been here, which is a month, there have only been one or two changes to the pump, that's how right they got it.”
Our doctors have specialist training and experience in palliative medicine, and choose medication which is right for the type of pain each patient is experiencing, and which won’t interact with any other medication that patient is taking. They can arrange for this medication to be given by a syringe pump, which delivers it through an injection under the skin, suppling a slow, steady amount around the clock, for smoother pain control.
“The doctors have all been wonderful. There are some GP trainees here too, which is nice because I'm a GP trainee, so I feel like we’re connected. I've seen the occupational therapist and the physiotherapist too, and they've both been lovely. Alison, the physiotherapist, has brought me this little foot exercise machine so I can keep my legs active during the day. I want to maintain a bit of mobility as much as possible, so I can get to the bathroom independently and things like that, so I'm trying to go for walks and do my foot exercises. We've talked through a lot of things together, and I think we're on the same page about exercises and equipment to support me. She’s also brought me a walker, which has been really helpful; I take that on my walks outside. It's been nice having all the support around me and knowing that I could ask for whatever I needed, if I needed a wheelchair to go out, or today I needed a portable oxygen cylinder and it was arranged straight away. Everyone's been great.”
Our physiotherapists and occupational therapists provide advice, guidance and equipment to help patients manage their symptoms and maintain their independence for as long as possible. Their specialist support enables patients continue to manage activities such as using the bathroom, eating, going outside, and socialising, independently.
“I’ve been taking full advantage of the complimentary therapies, too! The volunteers are so lovely. I've had a hand massage, which was lovely and relaxing. I went to sleep afterwards and slept for two hours! I've also had a foot massage which was really nice, and I even tried some Reiki, which I was interested in and had never tried before. That was good, very relaxing. It was something very new and different for me, but very peaceful and spiritual. And that's the other thing that's been really helpful, the team has put me in touch with one of their pastoral care team, Jill. Gosh, she's amazing. She's so lovely and she's given me so much support on a spiritual level, and that's been unexpectedly beautiful. I'm not religious; I didn't grow up religious, but meeting Jill showed me that you don't need to have a specific faith in order to be spiritual. We've talked so much about different aspects of spirituality, and that's really helped me to prepare mentally. I think when you come to a Hospice, you're expecting to die, but you want to die peacefully. In my role as a doctor I've seen so many deaths, and obviously what you want most for yourself is to have a really peaceful death, and I think my talks with Jill are moving me to a place where I feel that I could have a peaceful death.”
Our holistic care supports patients physically, emotionally, socially and spiritually, and our Pastoral Care team, led by Jill and Gerard, have training and experience in supporting patients’ spiritual care needs. Spiritual care recognises and responds to the needs of the human spirit, in whatever situation a person finds themselves. It can include supporting people as they explore their sense of meaning and purpose in life, evaluate their self-worth, or explore how to express themselves. It can also simply mean being a sensitive listener.
While patients are staying on our IPU, their family and friends can visit them at any time of day or night, and can stay for as long as they wish, including overnight. Pets are part of the family as well and are welcome to visit too.
“My husband, Oliver, stays every night, and our dog, Gatsby, stays with us as well. We had all my family in here, and one day our friends from up north came down to visit. We had them in here sharing charcuterie, having wine, it was really nice. Oliver’s got a cold at the moment, so we’ve sent him home to recover and I had some family stay last night instead, and a friend’s staying tonight. But for the most part, Ollie doesn't really leave my side. In eight years, he's been through everything with me. He's just a wonderful person. We met in a bar in Shanghai, 10 years ago, and we've had a beautiful life together. We've had Gatsby for five and a half years. We actually got him right before the Covid pandemic. It ended up being a crazy time, because we didn't know that Covid was coming, and so all of a sudden we were home with this puppy and we had all this free time to just train him. So he's super well trained! He can do hundreds of tricks, and he's just such a little joy. He's a sproodle; he’s all fur and floppy. The reason we got a sproodle is because I met a sproodle therapy dog in the hospital once, who came to say hi to the patients, and I thought that’s just the nicest dog. I knew that dogs could visit patients on the IPU, but I was surprised when they said he could stay overnight. It was wonderful. He's such a smart dog. He knows what's going on and he sits quietly with me in my bed. Normally he's a bit boisterous and runs around, but he's so calm when he's here. He knows. It brings me a huge sense of comfort to have him here. We like to give him breaks, let him go home and run wild for a couple of days and then come back again. But I like him to be with me because I feel like he's protecting me. We’ve got a good bond, me and this dog.”
All of our IPU rooms are individual rooms with an en-suite bathroom. The beds have controls which patients can use to adjust their position, and special mattresses with sections which inflate and deflate independently, to reduce the risk of pressure ulcers. They also all have a quilt on them, which has been handmade by one of our talented supporters. Above each bed is a ‘Story of Me’ board with information about that patient, such as their preferred name, things they like and dislike, and their hobbies or interests. This allows all of the staff who visit that patient to learn about them as an individual, and provide more personalised care. Each room also has a memory board which relatives can write messages on for their loved one. We can stick cards and photos onto the boards, for patients to see and read, and each board is on wheels, so it can be moved closer to patients who are bedbound.
“I love the quilts they put on the beds; they're so special. I know the volunteers make them and I think that's stunning. The memory board is lovely too; I've been slowly adding to that. Everything is set up for you to feel really comfortable. I’ve got nothing but positive things to say. It's lovely.”
Our care extends to patients’ families and friends too, and we offer them emotional, practical and pastoral care both during their loved one’s illness and in bereavement. We have a team of counsellors who offer individual and group bereavement support, and run informal sessions where those who are bereaved can meet others in a similar situation and share their stories, memories and feelings.
“Everyone has been supported, I think Oliver the most. He’s been checked in on every day. He's basically living here with me, and he’s always brought a cup of tea, reassured. The nurses all know his name; they know who he is just as much as they know who I am. He’s going to do bereavement counselling afterwards. We've already put that in motion, which is pretty incredible. I feel better knowing that's set up. It's not going to happen for months after I die, but I know that he's got it set up and that gives me comfort.”
