Tel: 01442 869550

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) and we have established a pulmonary fibrosis support group at the Hospice and 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)

PF picture -garden party (Aug 2022)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 a canal trip, picnic and Christmas festivities.

During covid times, 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

 

 
Accessing our Support: You can refer yourself!

If you would like to access support at The Hospice of St Francis, please click here to make a self-referral

Alternatively, your GP or respiratory nurse can make a referral using our professional referral form. If in doubt about the best way forward, please email hospiceofstfrancis.berkhamsted@nhs.net 

Online Self-Referral

 

 
Making a Referral: For Professionals

At The Hospice of St Francis, we are passionate about supporting anyone living with a life limiting illness.

We know that many patients and their carers benefit from accessing palliative care support earlier rather than later in their life journey and would welcome you to refer patients you think may benefit from our specialist input.

Professionals - How to refer

 

 


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

Sharon Chadwick

Dr Sharon Chadwick

Consultant in Palliative Medicine (with a background in respiratory medicine and a keen interest in supporting those with pulmonary fibrosis)

Claire Nicell

Claire Nicell

Lecturer Practitioner - involved in education and supporting patients in the community and attending the PF support group

Manisha Cook

Manisha Cook

Specialist Physiotherapist and Lecturer Practitioner - started the PF support group and keen to help people manage their symptoms with non-drug approaches

Claire Hewitt

Claire Hewitt

Carers Support Lead, Family Support Team – passionate about supporting carers and leads carer support within PF group

Caroline Wheeldon

Caroline Wheeldon

Head of Community Specialist Palliative Care Team - leads a team of nurses supporting those in the area local to the Hospice

 

"When palliative care/hospice is mentioned people shouldn’t get frightened. They don’t just support end of life. They help people live with their illnesses.  The hospice I attend has helped and encouraged me to be more active. They also helped me when I wanted to speak to my husband about my future. They support all the family."

PF group member


"When the people we care for have a crushingly depressing day we in turn have a crushing depressing day. And you are going through lots of that and there's no one really to step into your corner. Unless you have access to something like this (the hospice), you are very much on your own to be perfectly honest."

Carer from Support Group


"I think of a Hospice as a place where totally unconditional support is offered to patients and families and where all are listened to carefully and are treated with dignity and respect... a place which will challenge views, treatment, discussion as well as provide a comfort blanket."

PF group member


"It's really good to meet up with other carers. They come up with ideas to help you … they know how you feel basically. You sometimes feel so alone with your feelings it's nice to know that other carers are going through exactly the same type of thing. It's the support of the other members as well as the hospice."

Carer from Support Group


 


Living #YourPreciousLife well


Ralph's Story

Ralph and Dr Chadwick

“I’ve been delighted to help Ralph. His story shows what is possible with the right support and motivation. He’s living his life, his way and still doing the things he loves despite his illness. His solo was inspirational and I’m sure anyone who heard it will be deeply moved at what he’s achieved.”
Dr Chadwick

Read more

 

Pulmonary Fibrosis & the Hospice

 

 

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.

 

Resources for 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.

You can watch a recording of the event here.  We covered;

  • 0 mins - Welcome
  • 4:45mins - What Palliative Care can offer those living with Pulmonary Fibrosis with Dr Sharon Chadwick (Consultant in Palliative Care)
  • 43:20 - What is available locally?
  • 44:30 - Community Respiratory Team
  • 54:20 - Action for Pulmonary Fibrosis
  • 1:05:38 - Pulmonary Fibrosis Trust: Personal Perspective from Ron Flewitt (living with pulmonary fibrosis and Trustee of Pulmonary Fibrosis Trust)
  • 1:20:00 - What The Hospice of St Francis can offer: PF Support Group/ Caring for the carers
     
 

 

 


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