Looking for more information?
Click on the topics below to explore guidance and helpful resources.
Information & Support
Lung Health Charities
Website: www.actionpf.org
SupportLine: 01223 785 725
Information & Services:
- Recently Diagnosed Information pack
- Travel advice
- Webinars and Events
- Online Support Groups
- Befriending service
- Grief Chat
- Involvement Network
- Research News & Research Study Finder
- Volunteering opportunities
- In Memory Pages
- Fundraising
Website: www.pulmonaryfibrosistrust.org/
SupportLine: 01543 442 191
Information & Services:
- Information
- Equipment funding and support
- Caravan Holiday rental – Great Yarmouth
- Volunteering
- Fundraising
Website: www.asthmaandlung.org.uk/
SupportLine:0300 222 5800
Information & Services:
- Information & Resource booklets
- Volunteering
- Involvement Panels
- Campaigning
- Fundraising
Services
Speak to your healthcare team for more information about access to services that might be of interest and benefit to you.
Breathlessness intervention service (BIS)
www.cuh.nhs.uk/our-services/breathlessness-intervention-service/
- Printable resources
- Video and audio
Mental Health and Wellbeing
Self-referal routes and online resources available. Speak to your GP for more information and options.
Cambridgeshire and Peterborough
www.cpft.nhs.uk/talkingtherapies/
Hertfordshire and Mid Essex
www.hpft-talkingtherapies.nhs.uk/
Suffolk
www.wellbeingnands.co.uk/suffolk/get-support/treatment-and-talking-therapies/
Norfolk
www.wellbeingnands.co.uk/norfolk/get-support/treatment-and-talking-therapies/
Pulmonary Rehabilitation
https://royalpapworth.nhs.uk/our-services/physiotherapy/patient-information
Printable resource:
Pulmonary Rehabilitation: A patient’s guide
Speak to your healthcare team about community programmes.
PR at Home:
www.asthmaandlung.org.uk/living-with/keeping-active/keep-active-programme
Music and your lungs:
Support Services
Paliative care, also called supportive care, if available to people and families affected by life-limiting condition from diagnosis. It is more than just end-of-life care. Supportive care can help you find way to manage your symptoms and wellbeing, and to access other care based on your needs.
Speak to your healthcare team or GP about a referal.
Royal Papworth Hospital Paliative and Supportive Care Team
https://royalpapworth.nhs.uk/our-services/support-services/supportive-and-palliative-care
Arthur Rank Hospice. Cambridge
Outpatient courses, social groups, and complimentaty therapies.
Find local supportive care:
What is PF? How could a support group help me? What is it like to live with PF?
Explore this collection of publicly available videos.
Living with IPF and other ILDs - what is it really like?
Listen to past and present members of the Papworth Hospital Support Group describe what life with PF is really like and how connecting with others has helped them.
Living with IPF and other ILDs - what is it really like?
Listen to an ILD specialist describing this collection of diseases, it’s impact, and how it can be managed.
Living with IPF and other ILDs - what is it really like?
Insights and advice for carergivers
of a person with IPF.
Explore a series of recorded talks delivered during the COVID-19 lockdown to our members on a variety ot topics.
10th July 2020
Jenni Barradell, Senior Occupational Therapist at Royal Papworth Hospital, discussed the importance of energy conservation and strategies for managing breathlessness and fatigue.
14th August 2020
Clinical Lead, Dr Thillai, for the Interstitial Lung Disease clinic at the Royal Papworth Hospital spoke to the Support Group about COVID-19 and changes to clinical management.
11th September 2020
Rona Hardy, Senior Clinician for Long Term Conditions at the Cambridgeshire and Peterborough Psychological Wellbeing Service (PWS) talks of services, signs and symptoms of anxiety and depression, coping with chronic illness, and strategies for managing anxiety.