Impact Report – Breathlessness and Lung Health
An overview of the impact of grants awarded by St. James' Place Charitable Foundation to hospices in 2019, under the theme of 'Breathlessness and Lung Health'.
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2019 - Breathlessness and Lung Health
St. James’s Place Charitable Foundation has supported Hospice UK since 2002, by funding a grants programme for hospices. The overarching aim of these grants is to invest in emerging innovations in hospice care, which have the potential to transform how we support people at the end of life.
The grants programme focuses on a different area of care each year. In 2019, the theme was Breathlessness and Lung Health.
Each of the projects we funded were different, but we there are some common themes across the grant programme as a whole. In this report we will explore those themes to give an overview of the impact of the funding. We will also look at how the projects will be sustained and developed in the future, and how learning will be shared.
How the grants were allocated
A total of 41 applications were received from hospices across the UK. Collectively, the requests were worth more than £1.2m in terms of the total amount being requested.
At a meeting of the Grants Committee, which included St. James’s Place Charitable Foundation staff and trustees, a total 19 grants were awarded amounting to a total of £482,821. A breakdown of hospices awarded a grant, whose applications demonstrated the greatest need and proposed the most appropriate plans to meet those needs, is given below.
St. James’ Place Charitable Foundation Grants 2019
Organisation | Location | Project Title | Amount Awarded |
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Dorothy House Hospice | Bradford-on-Avon | Palliative Progressive Lung Disease Clinic | 29,257 |
Dove House Hospice | Hull | Sing to Breathe | 17,513 |
Great Oaks, Dean Forest Hospice | Coleford | "Fatigue and Breathlessness Group" | 7,787 |
Halton Haven Hospice | Runcorn | Extend and enhance our current breathlessness management Programme | 28,500 |
Katharine House Hospice | Banbury | Breathe Easy: increasing patient and carer confidence in managing breathlessness | 16,516 |
Kirkwood Hospice | Huddersfield | Breathe Better | 19,000 |
Lindsey Lodge Hospice | Scunthorpe | B.E.E.P - The 'Breathe Easy Enablement Programme' for patients and their families | 39,520 |
LOROS | Leicester | Help with Breathlessness at Home | 14,000 |
Mary Stevens Hospice | Stourbridge | Fatigue, Anxiety and Breathlessness Groups | 14,853 |
Nottinghamshire Hospice | Nottingham | Breathe Easy with Nottinghamshire Hospice | 20,307 |
Rowcroft Hospice | Torquay | Development of a breathlessness, fatigue and anxiety self-management 4-week programme | 21,795 |
Saint Michael's Hospice | Harrogate | Breathlessness Crisis Response Service | 39,870 |
St Gemma's Hospice | Leeds | St Gemma’s Breathlessness Support Package | 39,823 |
St Helena Hospice | Colchester | Improving outcomes for patients with respiratory disease | 28,595 |
St John's Hospice | Lancaster | Managing Breathlessness in Prisons | 9,773 |
St Oswald's Hospice | Newcastle upon Tyne | Equity of choice for patients with a need for Long Term Ventilation (LTV) | 32,391 |
St Wilfrid's Hospice | Chichester | St Wilfrid's Hospice: Breathe Well Live Well | 35,700 |
Strathcarron Hospice | Denny, Scotland | Living Well with an Advanced Lung Condition | 36,797 |
The Rowans Hospice | Waterlooville | ‘A breath of fresh air’: transforming the management of breathlessness in Portsmouth and South East Hampshire | 30,824 |
Grand Total - 19 projects | £482,821 |
Key themes
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The Breathlessness and Lung Health grant enabled hospices to better meet the needs of their local communities. In some areas there was no existing service and in others the provision needed to be extended and improved:
“Whilst our current support for people living with breathlessness due to an advanced lung condition was long-standing, it was not multidisciplinary, interventional or fully evidence based”.
- Strathcarron hospice
The NHS Long term plan in 2019 highlighted the importance of treatment and support for people with respiratory disease, to improve people’s quality of life and relieve the pressure on NHS services in winter. By providing a breathlessness and lung health service, hospices were able to support the NHS and some noted a reduction in hospital admissions.
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All the funded projects highlighted the importance of providing personalised care, looking holistically at a person’s needs and involving them in decisions. Breathlessness and lung conditions regularly occur in combination with other symptoms, so in many cases combined treatment was the most effective approach.
In these projects, holistic care included complementary therapy, accessing community support, referrals to other services and conversations about advance care planning.
Staff had to be flexible in adjusting to individual needs. Some hospices produced self-management resources such as podcasts, videos and resource packs which many patients found helpful (especially during lockdown). However some patients still needed a more personal approach:
“I think one of the biggest things is the breathing thing you know, and having somebody actually out here to go through it with me. That’s really helped because a couple of times I've done something or walked in and then, oh God, I can't get me air! So I think what she told me, and having her out here to show me is one of the biggest thing what’s really helped.”
- Patient from Dorothy House hospice
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The funding gave hospices more capacity to improve multi-disciplinary working, within the hospice, between hospices and with other partners. A key part of this involved raising awareness of hospice services externally and training partners in the principles of palliative and end of life care.
Several hospices were able to improve communication and referral pathways, helping to ensure that patients got the care they needed as early as possible.
“We hope, in time, that closer working between our teams…will enable us to support a successful transition from children to adult hospice services.”
- St Oswald’s hospice
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These projects have had a positive impact on the lives of patients and their families:
“Patients and their families are more able to manage symptoms in the long term and have a greater understanding of their illness and symptoms, and how hospice services can support them both now and as their illness progresses.”
- Mary Stevens hospice
However some hospices highlighted that the full extent of the impact may not be visible immediately. Being able to manage breathlessness symptoms will continue to be helpful to patients as their conditions progress:
“If we have made a difference to these patients it will hopefully be in years to come when we see them potentially at the end stage of their disease.”
- Kirkwood hospice
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COVID-19 had an impact on all the projects we funded. Breathlessness and Lung Health services supported those who were particularly vulnerable in the pandemic, many of whom were shielding and unable to attend face-to-face sessions. It was also difficult to carry out home visits during lockdown.
Strathcarron hospice assessed risk to ensure that home visits could continue if needed. All the hospices adapted to provide online services, and some found they were able to reach more people virtually. In fact online resources were often being used by a much wider range of people who needed support during the pandemic:
“Starting out as a toolkit to assist those living with long-term lung conditions, ‘Breathe Well, Live Well’ has become a multifaceted tool, to include helping those living with physical and mental health challenges rising out of the pandemic.”
- St Wilfrid’s hospice
It was also difficult to mobilise the community support aspects of some projects. This was possibly because of the restrictions and possibly because families were spending more time at home and were more able to provide care for relatives.
Sharing learning
All the hospices are keen to share the learning from these projects, internally, locally and nationally. This might be through training, producing resources, speaking at conferences and learning events or publishing journal articles.
The project lead from St Oswald’s hospice has provided support and advice to other respiratory leads and sat as Secretary for the National Paediatric Long-term ventilation (LTV) Hospice Forum.
“By demonstrating that it is possible to care, well, for LTV patients in a Hospice setting, we hope that St Oswald’s and the other beneficiaries of this funding have encouraged other Hospices to revisit their policies and staff training in this area.”
- St Oswald’s hospice
Future development
All of the hospices plan to build on the learning from the Breathlessness and Lung Health projects. Some have sought funding to continue the project, and others decided to extend it to a wider geographical area or improve existing hospice provision based on what worked well.
“The methods of development, format, and feedback systems used for this project are being used to develop further group support programmes for other areas of our care, and to support specific symptoms, and illnesses.”
- Mary Stevens hospice
“A business plan is currently being worked on to take to the executive team to create and staff a flexible multidisciplinary team that can move from GP surgery to GP surgery to deliver self-management programmes within our geographical area.”
- Kirkwood hospice
Find out more about the projects we funded.
Explore some of the projects funded by this St. James's Place Charitable Foundation grants programme.