Emma comes to our Living Well sessions with her mum Sandra, who is her carer. Here they both take part in a variety of activities offered through our Creative programme, which Emma really enjoys, and which give Sandra an opportunity to focus on something other than her caring role.
“Emma was poorly in 2019, and was put under palliative care,” said Sandra. "We were referred to Phyllis Tuckwell and a couple of people came out to see us - Luke came a few times, and Sophie came out too. It was helpful to have them visit us at home.”
Luke and Sophie are two of our clinical nurse specialists (CNSs), who are often the first of our team to meet patients and families who have been referred to our care. They complete an initial assessment and refer them on to the most appropriate specialty within our organisation. This could be to our Hospice at Home team for support with clinical care, equipment and advice to help them manage their symptoms and remain independent at home for longer; to our In-Patient Unit for symptom management and end of life care; or to our Living Well service for support managing everyday life with their illness. Our CNS team visited Emma and Sandra until Emma was feeling better, when she was discharged from our care. Our patients can often have a period of stability and can be discharged, and then re-referred in the future if they need our support again.
“Last December, we got a letter just before Christmas to say there wasn't anything further the doctors could do for Emma, and we got put back in touch with Phyllis Tuckwell. Louise came out to see us and told us about the Living Well groups.”
Emma was re-referred to our care by her GP, and was visited by our specialist heart failure CNS, Louise, who explained to Emma and Sandra how our Living Well service could support them. It helps patients to continue living life as fully and independently as possible, and includes two eight-week programmes which are held at the Beacon Centre in Guildford. Each weekly session lasts for two hours, and includes time for tea and biscuits, during which patients can talk with our nurses and therapists, and get to know the other patients there. The Living Well with Illness sessions cover topics such as Food and Nutrition, Remaining Active, and Improving your Sleep, while the Creative sessions focus on activities which offer patients the opportunity to learn new skills, and share past experiences and knowledge with others, which boosts their confidence and self-esteem. Activities include Cooking with Confidence, Therapy through Nature, and Mindfulness with Clay. Patients who would like to, can also attend our Artscape group, which is led by Kara, who is a student art therapist. Artscape offers 10 weekly sessions where patients can use creative activities to explore complex feelings around their illness, that might be hard to put into words.
When a new patient is referred to our care, we try to find out about them as an individual person, so that we can ensure the care we provide is tailored to their unique needs and preferences. When Rachel, our Living Well sister, found out that Emma liked art and craft, she recommended that she try Artscape first, and then move on to our Creative programme.
“The groups have been good,” said Sandra. “Emma did a canvas and gave it to Ruby, my granddaughter. That was lovely. She really enjoyed the sessions. In the Creative programme, you do a different activity each week. Last week we did the art one, and the week before we did gardening. That was good. We each made a pot of flowers. Emma did one and gave it to my sister when she came to visit, and mine's on the bench in the garden. It’s really growing!”
“The sessions are really nice. Originally, the idea was for me to take Emma there and leave her to take part without me, but she's not very keen on that. It's not worth her getting anxious over or not wanting to go anymore, so I just stay with her and do the activities alongside her. For me, I'm doing something; it takes my mind off thinking about other things. And Emma likes doing all these sort of things, like making the planter pots. Last week we did the bottle, which we put her favourite photo on.”
“Yes,” said Emma, “of me and Mark, my boyfriend.”
At our Positive Moments in Bottle session, patients are given a piece of paper with an outline of a bottle on it, which they can stick photos of happy or important memories on, to remind themselves of. Capturing and remembering these positive moments from their lives can help boost feelings of self-worth and happiness.
“My favourite one was making things in the art session, and painting a birdhouse,” said Emma.
“That was a lovely session,” said Sandra. “We’ve put the birdhouse down the garden. Emma also painted lots of little stones, which she's given to our family and friends. Ruby often comes round and does some baking with Emma, which Emma enjoys, so we’re looking forward to the cooking session.”
While they are at our Living Well sessions, patients and carers can also choose to have a complementary therapy treatment. Emma has had her feet massaged, and Sandra was also offered a massage, too.
“Emma likes someone to be with her during the sessions, so Ruby came with us one week and sat with her while I had a massage. It was lovely. It's good because it's not very often that I have time to focus on myself. Usually, I’m more conscious of looking after Emma, so it's nice to go to these sessions and have a massage, and have people ask how I am, or if there’s anything that I need.”
Sandra has also benefitted from the social aspect that the groups provide.
"You get to know people; we’ve sat and chatted and got to know quite a few nice people. I felt a bit anxious the first time we went, but everybody was really friendly and made us feel at ease. We've met quite a few people at the different sessions, and then when we've been to the next session we've met up with them again. It's been nice. There’s a nice atmosphere there. The nurses are all amazing; everybody's so lovely. We feel quite comfortable there. It’s also nice to know that the nurses there are seeing Emma every week, and they can see what's happening and what support we might need. I know that if we did have a problem, there's somebody there that we could talk to.”
