Pulmonary Fibrosis Support
At The Hospice of St Francis, we are passionate about supporting people to live well.
We are aware that pulmonary fibrosis can present challenges for those living with it (and those caring for them) so we have established a pulmonary fibrosis support group at the Hospice. This includes access to a palliative care review by one of our Pulmonary Fibrosis Clinical team.
Our Pulmonary Fibrosis (PF) Support Group
The PF support group was established to offer peer and professional support for those affected by the disease in 2015. It generally meets for 2 hours every two months on a Tuesday.
Those living with pulmonary fibrosis and their carers are welcome to attend.
Prior to attending the group, an initial patient assessment is completed (this is following either a self-referral or referral from a healthcare professional involved in your care)
Cake and tea are very important when the group meets face to face, allowing time and space to chat socially and encourage mutual support.
The group also involves exercise, relaxation, speakers and other activities. At the latter part of the session, carers have a session separate to those living with PF – a safe place to support one another and talk about any challenges they may be facing.
The group also runs some social events, such as canal trips, picnics and Christmas festivities.
During Covid restrictions, the group met on zoom, which kept folk connected but was not as popular as face to face meetings.
For details of forthcoming dates of the group please email hospiceofstfrancis.berkhamsted@nhs.net
Palliative Care Review
This is a review that is offered to those within Hertfordshire or Buckinghamshire who can access the hospice and is completed by one of our team.
Occasionally, in extreme circumstances, we can offer a consultant home visit to those unable to access the hospice and requiring specialist palliative care.
The focus of this review is to do a person-centred assessment and to identify what is most important to the person and those supporting them. It may involve symptom management, discussion about practical support or a safe place to discuss hopes and fears for the future.
Following such a review some individuals join our PF group, whilst others join our breathlessness or wellbeing services (see link) and others are referred onto their local community palliative care service.
Not in Bucks or Herts
But want to access a pulmonary fibrosis support group? Please visit Action for Pulmonary Fibrosis to find details of local support group.
Find out more
The Hospice's Pulmonary Fibrosis #Team
Dr Sharon Chadwick
Consultant in Palliative Medicine
Claire Nicell
Joint Head of Education and Learning
Her palliative care experience has involved working in hospitals, hospices and as a Community Specialist Palliative Care Nurse. More recently her focus and experience has switched to education. Within Hertfordshire she was part of the ABC project delivering palliative and end of life care to care homes throughout the county and then spent 18 months with the palliative care team at Watford General Hospital implementing The Rose Project (to promote dignity and respect at the end of life).
Claire loves working collaboratively with different colleagues across the social and health care sectors and helping individuals apply the principles of palliative care to their setting to promote excellent palliative care for those they care for.
She keeps her hand in clinically by working with her colleagues in the Community Palliative Care team and supporting a support group for patients with Pulmonary Fibrosis to ensure she practices what she teaches!
Manisha Cook
Specialist Physiotherapist and Lecturer Practitioner
Manisha has worked as a specialist physiotherapist at The Hospice of St Francis for 9 years and previously has worked in community and acute healthcare settings in London and Hertfordshire.
Manisha has recently completed her level 4 Certificate in Teaching and Education, and is committed to providing a specialist palliative education programme for Allied Health Professionals and the wider multi-disciplinary team.
Claire Hewitt
Carers Support Lead, Family Support Team
The Hospice of St Francis
Caroline Wheeldon
Head of Community Specialist Palliative Care Team
Ralph's Story
Support and motivation.
He’s living his life, his way and still doing the things he loves despite his illness.
Read more
Caring for Carers
Alongside those living with pulmonary fibrosis, we know that those caring for them can often benefit from the support. This is why carer support is an integral part of our pulmonary fibrosis support group.
We offer family members an individual appointment with the Family Support Team, using the Carer Support Needs Assessment Tool (CSNAT) to enable us to support you appropriately as our needs are all different.
This may include practical support, emotional support, linking you into relevant organisations, support groups or courses etc. This is reviewed regularly and as your needs/support changes.
Currently bereaved carers are invited to continue to attend if this is in their best interest and their experience and input is highly valued by the group.
Patients, carers and professionals
Please find here a few resources that we know can be helpful to those living with pulmonary fibrosis and to those supporting them
Useful Resources
Let’s Talk Pulmonary Fibrosis
(and what palliative care can offer)
On Tuesday 28th September 2021 we were very pleased to host the above webinar as part of Pulmonary Fibrosis Awareness Month.
Living #YourPreciousLife well
Pulmonary Fibrosis & the Hospice
