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Help and Support

Being diagnosed or supporting someone with a long-term condition can be challenging. There are wide range of resources available to provide more information, help and support to you, your family or carer(s). We have included some useful information and links below on this page. 

Cardiff Pulmonary fibrosis / ILD support group
This local support group is open to all patients with pulmonary fibrosis and their families. The aim is to give you the opportunity to meet other people living with ILD or pulmonary fibrosis. The group provides support, useful information and tips that only someone who has been there can truly understand or know.

2024 Dates 
2pm-3.45pm Day Hospital Llandough Hospital
26th January 2024
22nd March 2024
31st May 2024
26th July 2024
27th September 2024
29th November2024

If you can, leave a message to tell us you plan to attend, or just show up- either way you will be welcomed.
Julie Hocking & Doria Barbonchielli Respiratory Nurse Specialists ILD, 
Telephone number: 029 21826419

 

Local support
Cardiff and Vale - ILD Nurse Specialists
For clinical queries for example regarding your ILD medication, you can contact the nurse specialist. For further information about when to contact the nurse specialist vs GP, please see our frequently asked questions section (FAQ) or by clicking here. 
ILD Specialist Nurse : 02921826419
Please leave a message with your name, date of birth and if possible hospital number and brief description of your query. The nurse specialist will ring you back at the earliest opportunity . Please note this number is not checked on weekends or bank holidays.

Supportive Care Team 
The supportive care team are a team who work very closely alongside the ILD team in Cardiff. The supportive care team are a specialised multidisciplinary team who work with patients to help manage symptoms. The ILD team may suggest referring you to see a the supportive care team if they feel this may be beneficial for you.

Other Support lines / groups

  • Action for pulmonary fibrosis support - telephone, email and befriender service
    Action for pulmonary fibrosis is a charity which runs an email and telephone support line offering information and advice about living with pulmonary fibrosis. You can also talk to a volunteer befriender. This is an opportunity to regularly speak on the phone with someone affected by pulmonary fibrosis. Your trained volunteer befriender can help you to manage the changes and challenges that life with pulmonary fibrosis can bring. You'll have the opportunity to share your story and talk about your experiences. They can also signpost you to useful information and resources.
    Click here to find out more
     
  • Asthma and Lung UK helpline.
    Asthma and Lung UK is a charity who strive to improve lung health in the UK. They offer support via a telephone helpline or email.
    Click here to find out more
     
  • Asbestos awareness & Support Cymru AASC
    AASC is an independent charity striving to raise awareness and provide support to victims of asbestos related illnesses and their families across Wales. 

    "We are here to guide those diagnosed with an asbestos related illness and their families to the help they need from health, social care and legal professionals in the statutory, voluntary and private sectors to ensure that they are aware of the best assistance available within Wales. Join our family of support
     
  • Lung transplant patients support group
    - NHS organ transplantation website - for further information and support groups
    - Pulmonary fibrosis - lung transplant patient support group

Carer Support

Self Management
"How can I help myself?" This was one of the most commonly asked questions when we performed a recent patient survey in Cardiff. Following this we have developed a self-management section to give some tips of how you can help manage your condition and slow progression of ILD. This also includes some links to more information about mindfullness and other groups such as singing for lung health. 

Smoking Cessation Support
Our team will be happy to talk to you about stopping smoking and we can refer you to a local smoking cessation counsellor who can offer you support. In Wales, patients are entitled to free medication to help you quit. 

Financial Support - benefits and PIP
- Benefit claims for pulmonary fibrosis- action for pulmonary fibrosis
- Citizens Advice - what benefits can I get?
For further information on financial support, please see our FAQ section of the website by clicking here.

Blue Badge
- Cardiff council - apply for a blue badge

Palliative Care 
Palliative Care is available to patients whose disease or illness is no longer responsive to curative treatment.  For further information about palliative care services in Cardiff, please see our palliative care team page. 
- Caring for someone with a long-term lung condition at the end of life - Marie Curie
- Managing breathlessness  booklet - Marie Curie

ILD Charities and organisations offering support
- Action for pulmonary fibrosis
- Asthma + Lung UK  (British lung foundation)
- Asbestos awarness and support Cymru
- Pulmonary Fibrosis Trust
- Pulmonary Fibrosis Federation
- Sarcoidosis UK
- Support for living with rheumatoid arthritis
- Taskforce for lung health
- Versus arthritis

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