St Gemma’s Hospice identified that breathlessness, fatigue and anxiety regularly occurred in combination for many patients. The evidence base about these symptoms also indicates they are strongly interdependent. The hospice was able to secure funding from St James’ Place Charitable Foundation through Hospice UK, to develop a combined programme which would be more clinically effective for managing these symptoms.
Outcomes
St Gemma’s has implemented a range of support, so that patients can choose how they engage to suit their individual needs.
The hospice’s two existing services for breathlessness and fatigue have been merged to create one streamlined support group for breathlessness, fatigue and anxiety symptoms.
The team also developed a multi-disciplinary Breathlessness clinic, where patients can access personalised one-to-one support from specialist nurses and therapists. This might include advice about medication and advance care planning conversations.
As well as in-person support, there are now evidence-based breathlessness resources on the hospice’s website, so that patients can get easily accessible help at home.
Facilitators, challenges and advice
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Key facilitators
St Gemma’s nursing, physiotherapy, occupational therapy and complementary therapy teams worked together to develop the service. This has improved cross-team communication within the hospice and raised awareness of the skills each team offers.
Similarly, the hospice collaborated with Sue Ryder Wheatfields Hospice and Leeds Teaching Hospital NHS Trust Respiratory Team to develop the website resources. This enabled them to build positive working relationships and develop a more cohesive, cross-city approach to patients with breathlessness, fatigue and anxiety in Leeds. The resources are being shared widely across the city.
Challenges
The COVID-19 pandemic made it difficult to meet with patients face-to-face through the support group and clinic. The support group was adapted for online delivery, which was popular with patients and families. They reported being able to watch the recorded sessions at a time that suits them, and re-watch them whenever they needed to. If patients did not have access to online technology, staff visited them at home and loaned them equipment.
However the opening of the clinic had to be delayed until restrictions had been lifted. Even when the clinic did open, many patients were still reluctant to attend (as the nature of their condition made them particularly vulnerable to coronavirus). However numbers have gradually increased.
Tips and advice
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Sometimes you need to be brave to move outside the conventional. St Gemma’s asked patients for input on what the service should look like at the start of the project, but their responses were based around what they had already experienced (onsite delivery). The hospice might not have tried online delivery without the limitations of COVID, but the evaluation of the new model has shown that it is very successful.
Communicate regularly with funders, giving clear reasoning for any changes that need to be made to the original plan. The team had to be very flexible given the restrictions of Covid, but went back to Hospice UK regularly with updates.
Future development
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St Gemma’s plans to investigate the most effective time for patients to be referred to the programme, so that it can have maximum impact on their wellbeing.
The hospice will continue using an online format for support services where appropriate, as it has been shown to be both cost-effective and clinically effective.
The clinic will continue to be developed as patients feel more confident to return to the hospice for outpatient sessions.
