ILD Support Group meeting

18 December 2017

Ashley Green Head of Service Development at the BLF
Ashley Green – BLF

The group were delighted to welcome Ashley Green, Head of Service Development at the British Lung Foundation (BLF), who brought the group up to date with the various campaigns and initiatives the BLF have been involved in over the past year. Specifically the ‘Battle for Breath‘ campaign and the recent ‘A map for better care‘ report, which was launched during IPF week in October and presented to Parliament in November. The main take aways from the report were as follows:

  • A call to Government to establish a Respiratory Task Force to address the underfunding and lack of awareness, among HCP and relevant institutions and organisation, of the different types of respiratory conditions, many of which are progressive and have no cure at the present time.
  • To address the inconsistencies in care across the UK
  • To provide quicker diagnosis and improved access to the available treatments
  • To establish more support groups, nationwide, and ensure all patients have access to either breath easy groups and/or Pulmonary Rehabilitation (PR), which are customised to the needs of ILD patients.

As this was the final meeting of 2017 it wouldn’t be right to let the evening go by without getting into a bit of festive spirit! The mulled wine, mince pies and other home made goodies ensured a very happy conclusion to the meeting. Fair to say that the Christmas Jumper competition was jointly won by ……… Iain and Keith. I couldn’t possible describe them, you had to be there!

Until the next meeting, take care and have a lovely festive holiday!

2 thoughts on “ILD Support Group meeting

  1. Hi 🙂

    How are the public able to donate gifts to those who are suffering with PF? I have recently had a loved one pass away from this horrible illness and I feel compelled to give back some joy this festive season.

    Any info would be greatly appreciated- I have time to pop in between 9 and 12.30pm tomorrow.

    Kind Regards,
    Danielle.

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  2. Dear Danielle, thank you for your enquiry and please accept our sincere condolences on the passing of your loved one.

    It is a very kind offer you make to help others who are living with this dreadful lung condition. My suggestion would be to look at donating to one of the various national organisations, who specialise in respiratory diseases such as

    the British Lung Foundation (BLF) – https://www.blf.org.uk/

    Action for Pulmonary Fibrosis (APF) – http://www.actionpulmonaryfibrosis.org/

    Pulmonary Fibrosis Trust – http://www.pulmonaryfibrosistrust.org/

    All of these organisations are actively involved in raising awareness and funding vital research into the fundimental causes of IPF/UIP, PF and other Interstitial Lung Diseases (ILD).

    I should also highlight that this ILD Support Group has been set up and is run by volunteers, who themselves are either patients living with IPF/UIP or other ILD’s or their carers. As you will hopefully have seen from the website the group meets on the 3rd Monday of each month and you are more than welcome to join us for our next meeting in January. Full details can be found on the website home page (ildgroupstgeorges.com).

    I hope the above is helpful and if you need any further help or clarification, then please do get back in touch or pop in to meet the group in January.

    Best wishes.
    John.
    ILD Support Group coordinator.

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