Caz was referred to our care in August 2023, and has been supported by our Community and In-Patient Unit (IPU) teams.
“Before I was referred to Phyllis Tuckwell I’d already had cancer for a year, but when my GP found out I wasn’t getting enough support, he got in touch with Phyllis Tuckwell, and I’ve been under their care since then,” she said.
After her referral, our clinical team visited Caz at home, to find out more about her symptoms and how we could support her.
“The first time, two nurses came to see me, and the second time Dr Fiona, one of their doctors, came out with a nurse. They went through all my paperwork with me, ReSPECT forms and everything.”
ReSPECT forms are completed after a discussion between the clinician and the patient, to document how they would want to be cared for in an emergency. ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment, and the forms were developed by the NHS to create personalised recommendations for patients’ healthcare providers to use in an emergency, if patients themselves are unable to make or express their wishes. Our nurses went through the form with Caz, to ensure that her care preferences were recorded and that she understood and was happy with them.
"They stayed quite a while; we had a good chat. They made me feel more reassured about everything. Before that, I don’t think my diagnosis had really hit me. My husband had died and I had so much going on in my head, it wasn’t until this last year that I’ve done more thinking about it and it’s knocked me for six. It’s just about trying to get on with everyday life. Some days it’s a real struggle, other days I manage quite well, but the Phyllis Tuckwell people that have come out to the house, I couldn’t wish for a better crew, they’re marvellous. They’ve made me feel more reassured, comfortable, secure and at ease. They went through everything that will happen at the end, so I’m prepared, and I don’t feel as frightened as I would have been. I’m glad that I know, because a lot of it I was frightened of. Because of it being lung cancer, I was frightened of not being able to breathe, but they’ve reassured me that they can make me comfortable so I don’t have difficulties breathing. I originally wanted to die here at home, but since being on the IPU I’d like to die there, because it’s so safe and secure.”
Although Caz is being cared for primarily by our Community team, who visit her at home, she has also been admitted to our IPU for symptom management.
“I’ve been in twice now. The first time was for a very bad chest infection. There are people there all the time, reassuring you and coming to help you. You go in feeling so ill and a couple of days later you feel as right as rain, that’s how it makes you feel, being in there.”
“The rooms are gorgeous, it’s like being in a hotel! I couldn’t believe it, when the ambulance first drove up, I thought ‘I haven’t come to the right place!’ It was really lovely. And they’re all so caring. If I wanted to go outside for a bit of fresh air they would take me down.”
Our IPU is currently located in a care home in Camberley, while we build a new Hospice in Farnham. Caz has really enjoyed sitting out in the gardens there, which back onto a large woodland area.
“It’s all wildlife, you can hear the little foxes and the deer. I’d say ‘right you can go now, just leave me down here for a couple of hours, I’ll be alright!’ I can’t fault it at all. When my family came to visit I took them all round the grounds, and my best friend Kimmy, who was there every day. They all thought it was lovely.”
Caz was supported by our medical and nursing teams on the IPU, and was also visited by some members of our Pastoral Care team, who talked to Caz about how she was feeling.
“There are people doing pastoral care that come and speak to you and sit with you, and just have a chat about everyday things. They put you at ease. Jill brought me a book that I could go through to choose my end of life poems. She really took the time to go through them with me; it was lovely."
The second time Caz was admitted to the IPU was in March 2024. "We thought it was the cancer, but it turned out to be shingles. I was in so much pain, so they took me in there for a couple of weeks to get me right. That was good, because that was where I wanted to be – I didn’t want to go to hospital.”
While Caz was staying on our IPU, our complementary therapy team offered her massages, reflexology and nail care. “I met a lovely young girl called Abbi. She came and manicured my nails and painted them, and my toenails. Another young lady called Nicky came to do my feet. One minute I was talking and the next minute I was snoring my head off, and she was still at the end of the bed massaging my feet! It was gorgeous, so relaxing. I’d never had reflexology before. She told me how all the different parts in your feet affect your body - you wouldn’t think your big toe could work part of your brain. And she must have worked it quite hard because I was asleep within minutes! And the bits that relate to your lungs and your stomach, it was really interesting, not just to lay there and have it done but to listen to her talk. I thoroughly enjoyed it.”
Now that Caz is back home, our Community team have resumed their care, visiting her to make sure that she has all the support she needs to be able to continue living at home. As well as seeing our doctors and nursing team, she has also been visited by our occupational therapists, who help patients to manage their symptoms and continue living their everyday life as fully and independently as possible. This includes enabling them to participate in meaningful activities, roles and routines which are important to them, such as gardening, cooking, playing with their children or grandchildren, or going for a walk in their local park. Our occupational therapists have provided Caz with equipment to help her remain mobile and independent at home.
“They’ve given me some cushions to sit on, so I don’t get bed sores, and a toilet frame. Because I haven’t got any top strength, I can’t get on and off the toilet properly, so they put a frame around it which helps me. I came out of hospital and that afternoon the occupational therapist came out with the frame. I couldn’t believe how quick it was! I think she was coming back from the IPU in Camberley. and she said ‘I’m just on my way’ and came in with it! And then my little walking frame gets me from the bedroom to the kitchen and where I want to go. I can go like the clappers on it!”
As well as being visited by our Community team, Caz is also cared for by the local district nursing team. We work closely with this team, as well as with patients’ GPs and other local healthcare providers, to ensure that our care is joined up and that everyone involved is aware of what the other teams are doing.
“They all relay to one another what’s going on and how you are, which I think’s nice. They’re all supporting one another as well as supporting me. At first, I didn’t realise they all connect together and talk to each other.”
Knowing that we are on hand whenever Caz needs us has reassured her and given her more confidence in living at home on her own.
“I know that Kimmy knows all the nurses, and my sister Della, and they can phone up anytime they like with any concerns. Phyllis Tuckwell has had permission from me to tell Della and Kim what’s going on and what I should be taking, so I feel more relaxed and comfortable here at home because I know I’ve got this support network. I know any one of us can get in touch with them and we’ll either get a phone call back from the doctor, or the next day we’ll have a nurse and a doctor out, and you can’t get better than that. Phyllis Tuckwell is absolutely brilliant, and that’s hand on heart. They're absolutely wonderful and I couldn't wish to go to a better place.”
