Impact Report – Breathlessness and Lung Health

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.

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

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
 

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

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.