ILD Support Group Meeting

17 September 2018

It was great to welcome back our previous members (after the summer holidays) to the first of our meetings for 2018-2019 and to also welcome a number of new members to the group. This is the start of our 3rd year and we hope to continue in the same vain by offering information, support and an opportunity to have a friendly chat with others living with a variety of Interstitial Lung Diseases (ILD’s)…. and have a nice cup of tea, coffee and some nibbles, of course!


This week is also the start of IPF Awareness Week. Somehow this year seems different as there has been more coverage of IPF in the media. Channel 4 covered a piece on early diagnosis and the restrictive access to anti-fibrotic medication and can be viewed here.

BBC Radio Wales also did an interview with John Mason, who has lived with IPF for over 7 years and you can listen to it below.

Over the next few months the Taskforce for Lung Health will be working on finalising the 5 year strategy report, which will be published before the end of the year and this period will coincide with increased media coverage across all formats (print, online and national broadcasts).

Our next meeting will be on 22 October 2018 and we look forward to seeing you all then.


ILD Support Group Meeting

16 April 2018

The topic this week was ‘Pot Luck’ as we did not have a formal presenter, however we did have the pleasure of being joined by Lead Physiotherapist, Rowan Mitcham, who told the group about the Pulmonary Rehabilitation groups he and his team have set up and run across the region.

The team have 3 sites across Wandsworth, based at St George’s Hospital, Wandle Recreation Centre and Latchmere Leisure Centre (+ Queen Mary’s Roehamption). Rowan explained that the courses consist of an eight-week exercise and education programme that takes place twice a week, in line with NICE and BTS guidelines.

Rowan welcomes enquiries and referrals from the Respiratory team, general practitioners, therapists and PCT practice nurses. If you are interested in enrolling on a course, please be aware that St Georges PR is over subscribed, with a waiting list for assessment of 4 weeks, with course enrolment commencing 6 weeks following assessment.

Select the following link to download a copy of the PR referral form.

Pulmonary Rehabilitation Referral Form (Word)

The group also received an update from John Conway, patient representative, on the ‘Taskforce For Lung Health‘. The main take away point from the update, and requiring further action for the group, was to submit our own experiences and those of carers to the Taskforce’s ‘Call for Evidence‘, which can be submitted online at the following link.

NOTE: The closing date is 27th April 2018, so do get your submissions in on time to help influence the 5-year strategy for improving the nation’s lung health.

Looking forward to seeing you all at next months meeting, we may even have some cake to celebrate the end of winter…. at last!

ILD Support Group Meeting

19 March and 21 May 2018

Stephen Wybourn
Stephen Wybourn

  ‘Writing for wellbeing – Pt1 & Pt2’

Stephen Wybourn is a Senior lecturer in Mental Health Nursing at Kingston and St George’s University London. The group welcomed Stephen with a lovely cup of tea and in return Stephen introduced the group to the many health and wellbeing benefits of writing by giving us a really interesting and practical workshop; exploring how to use writing as a support mechanism;  to facilitate emotional expression;  to make sense of things that have happened and as a flexible and varied tool that can support us all through life’s up and downs.

Stephen went to great lengths to tell us that it wasn’t necessary to be a ‘good or skilled’ writer as the focus of the session was using writing to express yourself and to support wellbeing. Grammar, spelling, style etc. was not important. The overall plan was to provide us with some take away exercises that can be done at our leisure, over the next few weeks and then return for a follow up session in a couple of months (21st May to be precise!) to discuss how we are getting on and to write some more.

So why not give it a go!

And see you all next month on 16 April for some ‘Pot Luck!

ILD Support Group Meeting

19 February 2018

Dr. Raminder Aul – Respiratory Consultant
Dr. Raminder Aul – Respiratory Consultant

This month it was a real pleasure to welcome our very own Dr. Raminder Aul, Respiratory Consultant from St Georges hospital, to talk to us about ‘How to understand your scans‘. Dr Aul mainly discussed CT or High Resolution CT scans (HRCT), as these are the primary scans used to help diagnose Interstitial Lung Diseases (ILD). It was a very informative talk,with plenty of helpful examples throughout, followed by plenty of questions from the group. It was also interesting to note that the CT scan was discovered in 1971 by Dr Hounsfield working at the Atkinson Morley hospital, now St Georges hospital. The talk gave us all a much better appreciation of just how highly skilled a radiographer needs to be to interpret these images.

The slides from the presentation can be viewed below. Use the ‘space bar‘ to pause/play the presentation.

The group also had a brief update on the recent ‘Call for Evidence’ by the Taskforce for Lung Health. The taskforce is a group of organisations and individuals, including patient representatives, with an interest in respiratory, working together to develop a 5-year plan for improving the nation’s lung health.

Full details on the Taskforce, and how patients, clinicians, researchers, policy professionals and members of the public can contribute to the call for evidence, can be found at the following link.

Looking forward to seeing you all again at our next meeting on 19th March.


ILD Support Group meeting

22 January 2018

Gill Main Speech and Language specialist
Gill Main
Speech specialist

Our first meeting of 2018 had a good attendance, considering the time of year and how cold it is at the moment, not to mention the various reports of cold and flu about!

Support group members were delighted to welcome Gill Main, Speech and Language specialist, to the group to talk about cough technique and what strategies can be used to alleviate many of the difficulties experienced by patients with Interstitial Lung Disease (ILD).

In her talk Gill explained exactly what chronic cough was and when it is appropriate to control the urge to cough. Gill emphasised here that in most cases it is necessary to cough as this provides an important function in helping to keep the lungs clear of possible infection. However, sometimes patients experience prolonged and exhausting bouts of coughing which can create a coughing loop. These coughing loops can be very exhausting for the patient and difficult to stop. In these instances there are techniques which can be used to regain control and interrupt the coughing loop.

The key points were:

  • Identify the trigger sensation
  • Carry water
  • Keep a record
  • Seek support
  • Monitor

Gill also discussed ‘reflux’ as this can be a major contributor to coughing, which can occur during the day or at nighttime while asleep. Reflux can vary from very mild to quite severe (heartburn) and can relate to the foods we eat and when we eat them, such as last thing at night. Here Gill introduced the group to the ‘3 Hour rule‘, which states that we should finish eating at least 3 hours before going to sleep. Another guide to food is to eat a little and often (up to 6 times per day).

I hope to see you at our next meeting on 19th February. Until then take care and breath easy!

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!

ILD Support Group Meeting

20 November 2017

Lydia Cotton RE-MIND
Lydia Cotton RE-MIND

The title of the topic this month was “Re-mind: Mindfulness for Longterm Conditions“. The group was pleased to welcomed Lydia Cotton from ‘RE-MIND’ ( Lydia provided a brief overview of  the Re-Mind organisation and provided insight into the type of training the organisation provided.

RE-MIND is a training organisation, dedicated to enhancing wellbeing through mindfulness. Their training programs help people, with a wide variety of needs, to take control of their psychological and physical wellbeing. Similarly, they help people diagnosed with stress overload, anxiety, and long term health challenges to learn how to mindfully manage their conditions. RE-MIND teach and demonstrate achievable, practical and lasting key life skills that promote mindfulness, self-awareness, stress reduction, mental and physical health, and increased self-reliance.

The following link will provide a number of audio samples for you to listen to and use as part of your own mindfulness practice.

RE-MIND logo