A recent review of Hospice in the Weald’s Living Well programme has not only demonstrated the positive impact of the service but the team is also using the findings to shape plans for the future.
Following the physical closure of Living Well at the Hospice during lockdown (a smaller virtual programme was offered instead), a redesigned service opened in March 2022. Here Steph Hall, who joined the Hospice as Head of Living Well in January 2022, explains how she and her colleagues have evaluated the impact of their work.
“It’s been really exciting for us to evolve the Living Well service here at Hospice in the Weald.
We focus on supporting people to feel empowered to make choices based on the things that matter most to them. People can self-refer or can be referred by a health or social care professional.
They come along to an introductory session where we have a detailed chat about what is important to them and gather information on how they are feeling, their illness and symptom management as well as their hopes, aspirations and goals.
We then work with them to develop a 12-week personalised programme of activities based on the things they value most. This goal-setting approach enables us to support people to do what matters to them in the best way they can, while they can.
“I joined the choir and musical expression group. It’s an opportunity to have fun, make friends and reach new goals. Just the interaction with others helps me feel better.” Stuart
There are now around 180 people on our active caseload, and it continues to grow. We see between 12-20 people attending Living Well on most days of the week (Monday-Friday).
We are delighted to be able to offer a varied weekly timetable of over 40 sessions. This features popular exercise classes, complementary therapy (qualified therapists volunteer their services), music therapy sessions (1-2-1 therapy sessions along with music groups), and creative arts and crafts including memory-making with hand casts, fingerprint jewellery and life story recordings.
There is something for everyone, from create and chat, fabric group to gardening, complementary therapies, seated exercise, qi gong and yoga – it’s wonderful to see the benefits that taking part in these activities can bring.
“I feel like I fit in. When I’m there and talking to other people, I forget being poorly. I really, really love it. It’s given me a confidence that I didn’t have before.” Louisa
Challenges of demonstrating impact
One challenge with demonstrating impact data for services for people with life-limiting conditions is recognising that a considerable proportion of people, whilst having a stable phase of illness at the point of referral, deteriorate over the course of their Living Well programme.
With this in mind, we decided to use self-reported IPOS data (Integrated Palliative Care Outcomes Scale – a validated tool, used to measure the palliative care needs of patients and their families) at the start and end of an episode of care within each 12-week programme to help us evaluate changes, improvements and overall impact.
As Living Well is a non-clinical service, we focused on reviewing the reported changes within the seven non-clinical domains of the IPOS tool:
- Drowsiness
- Poor Mobility
- Patient worried/anxious
- Family/friends worried
- Feeling depressed
- Feeling at peace
- Sharing feelings
The graph below shows the number of people recorded as self-reporting an improvement in IPOS score from the first to most recent assessment across these domains. This is based on data from 73 service users and shows:
- Green – those reporting an overall improvement
- Orange – those reporting an improvement of 2 points
- Blue – those reporting an improvement of 3 points
Analysing this data as part of a review of the first 18 months since the Living Well service re-opened, has helped to demonstrate some significant improvements in IPOS scoring over the course of a person’s engagement with their Living Well programme. This includes feeling at peace, feeling anxious/worried and being able to share feelings.
Looking at this alongside the qualitative feedback from patients and loved ones, it certainly helps support the argument for ongoing, holistic, person-centred care through the Hospice’s Living Well service.
“The Living Well sessions have become the highlight of my week. I enjoy the relaxation and the painting and all the chat in between. To come to the Hospice each week truly is a blessing – being there is like a breath of fresh air.” Clare
Key learnings
We have learned many things during this period. As part of continuing to evolve the service, we are looking at how we can improve equity and accessibility, for example, we are piloting volunteer hospice transport and community collaboration.
Setting up ‘End of Life Matters’, a service user engagement group, has helped us to better understand patient and carer views and take a more collaborative approach to service design, improvement and implementation.
We are also identifying local community groups and services to work with to raise awareness of our offer, increase our reach, and identify opportunities for collaboration and sharing good practice.
It is so helpful for us to be able to demonstrate the impact of the activities and support that we offer as it also enables us to better explain the benefits of the service. This, in turn, helps us sustain and grow through fundraising and support. We are proud of what we have achieved so far and are looking forward to further developing the service to help even more people live well and enjoy what matters to them.”
https://www.hospiceintheweald.org.uk
Steph Hall,
Head of Living Well
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