Philanthropy – Motor Neurone Disease Breathing Support Project

1 Apr, 2023 | General

The fabulous team from the Motor Neurone Disease Breathing Support Project* shared an overview of the impact of our fundraising at our March 2023 meeting. Thank you again to all our members for their support and help in raising an incredible £67,000+ over the last three years.

Here are a few facts from their presentation for those who weren’t able to attend (spoiler alert! We’ve embedded a new service in the NHS!).

Our fundraising has helped:

  • 112 patients (anticipated 60) / >1300 patient support interactions
  • 79 additional initial assessments (anticipated 20)
  • Closer links with the palliative care & wider healthcare teams: symptom control; advance care planning; and end of life care in the patient’s preferred place of care
  • Expert input:
    My Name’5 Doddie’5 Foundation
    NICE/MNDA guidelines
    Specialist respiratory advice prior to tube-feeding
    Admission prevention; Discharge facilitation

How has our money been spent?

  • Extra 11.5 hours per week of Specialist Physiotherapist’s time plus mileage
  • Other on costs: pulse oximeters; peak flow meters; consumables
  • CAWC will have donated circa £67k over 3 years covering nearly all the cost of the project

What do the patients and their families say about the support we have funded?

‘Thanks again for all the magic that you do. It is priceless, effective, meaningful and oh so appreciated’

‘Heartfelt thanks for the care, support and guidance that you gave M, and his family – we could not have managed without your help, you have constantly been referred to as “our angel”. Your kind and calm presence has been a rock’

‘You have been very involved with her care; and have offered a great deal of support and hope, in a torrid time for her’

What does the future look like?

  • The value of the work has been recognised and is going to be funded fully by the NHS Part of the role is going to be delivered as a Virtual Ward (the newest initiative in the NHS)
  • The role will be developed and made more resilient in the future, with other physiotherapists and Allied Healthcare Professionals being trained to expand the service
  • The community palliative care nursing teams are stepping up to take on and support more patients with MND, as this project has shown that these patients also have a number of symptomatic and holistic needs.

The outcomes of the Breathing Support Project:

  • The benefit to patients is immeasurable
  • The impact on the project team as healthcare professionals who have been enabled to improve the quality of care for patients, and to embed a new service, is beyond words.

* The Motor Neurone Disease Breathing Support Project is being delivered by members of the Palliative Care Service based at Florence Nightingale Hospice, part of Buckinghamshire NHS Trust. It has the full backing of the Chiltern Branch of the Motor Neurone Disease Association. The MND Association ( is a charity registered in England, charity no. 294354.