ILD Support Group meeting

19 June 2017

The eight meeting of the ILD Support Group took place at St Georges Hospital on Monday 19th June 2017. This was the last meeting before the summer break (July & August) with the meetings starting again in September.

Anne-Marie Russell
Anne-Marie Russell

The topic for June was “Monitoring your Lung Function at home” and was presented by Anne-Marie Russell (NIHR Clinical Research Fellow).

However Anne-Marie, covered so much more in this session, which generated much discussion so it was no surprise that the session ran over the allotted time by some way!

 

Anne-Marie Russell presentation
Anne-Marie Russell discussing current ILD research with the group.

In addition to reporting on recent development into home spirometry used in combination with smartphone applications, Anne-Marie provided a brief summary of the current research being carried out into ILD both nationally and internationally. This also included further early stage trials being conducted. It is an exciting time in the development of new treatments and new therapies by researchers and by pharmaceuticals and there is good reason to be optimistic. For further details on these and other trials and new developments you can explore the Useful links area of this website.

 

Key areas covered in the presentation included:

  • The Care Information Exchange – Telemedicine initiative
  • ILD clinical year in review
    • Development and Progression of Interstitial Lung Abnormalities in the Framingham Heart Study
    • Multicentre evaluation of multidisciplinary team meeting agreement on diagnosis in diffuse parenchymal lung disease: a case-cohort study
    • Antacid therapy and disease outcomes in idiopathic pulmonary fibrosis: a pooled analysis
    • Acute Exacerbation of Idiopathic Pulmonary Fibrosis. An International Working Group Report
  • The use of home spirometry in combination with smartphone applications.

 

You can view the slides from the presentation below. Use the ‘space bar‘ to pause/play the presentation.

 

Shortbread biscuits
Yummy shortbread!

A special thanks to Sophia on behalf of the group for the lovely home made shortbread biscuits, they were fantastic and very more-ish, thanks and hope to see you all after the summer break!

Keep up to date with all new developments by visiting the website regularly as it will be updated over the summer months and in readiness for our return in September!

ILD Support Group Meeting

22 May 2017

The seventh meeting of the ILD Support Group took place at St Georges Hospital on Monday 22nd May 2017  between 16:30 – 18:00.

Dr. Dimitra Nikoletou, Associated Professor at St Georges University of London
Dr. Dimitra Nikoletou

The topic discussed this week was “Understanding your Lung Function Test” and was presented by Dr. Dimitra Nikoletou, Associated Professor at St Georges University of London.

As respiratory patients we are very familiar with the regular round of lung function tests (LFT), however getting to grips with the various numbers and abbreviations which comprise the results can be a challenge and very confusing for patients.

The aims of this session was to help shed light on the meaning behind the numbers and abbreviations. Dr. Dimitra Nikoletou presented a practical session using a ‘real’ patients LFT results to explain their meaning in greater depth.

The session explained the meaning of the following terms and abbreviations as they appear on a standard LFT results form:

  • Force Vital Capacity – FVC
  • Forced Expiratory Volume in 1 second – FEV1
  • The ratio of FEV1%/FVC% and its significance
  • Diffusing capacity of the lungs for carbon monoxide – DLCO
  • Vital capacity – VC
  • Residual volume – RV
  • Total lung capacity – TLC (VC +RV)

In addition to the above Dimitra also explained the fundamental difference between ‘restrictive’ and ‘obstructive’ lung conditions and how the above reading will vary depending on which lung condition is presented.

 

ILD Support Group Meeting

24 April 2017

The sixth meeting of the ILD Support Group took place at St Georges Hospital on Monday 24th April 2017  between 16:30 – 18:00.

Katherine Gray, Occupational Therapist
Catherine Gray (OT)

The topic this week was “Pacing for Improved Energy” and was presented by Occupational Therapist, Catherine Gray.

The session was well attended and we welcomed some new attendees to the session. Catherine introduced the group to some strategies to improve and promote energy conversation, which she referred to as The four P’s.

 

THE FOUR P’s

  • PLAN how you will carry out the task.
  • PREPARE all the items you will need.
  • PACE yourself and slow down during the task.
  • PAUSE and rest whenever needed.

 

You can view the slides from the presentation below. Use the ‘space bar‘ to pause/play the presentation.

 

Throughout the presentation there were plenty of opportunities for questions and general discussion and sharing of personal experiences, which always makes these sessions so worthwhile. Participants shared their experiences of breathlessness and how some relatively straight forward tasks can lead to breathlessness quite quickly. It also seemed that through experience many of the group had developed their own individual ways of coping with breathlessness, such as pacing themselves when climbing the stairs, or giving themselves plenty of time to plan the day ahead so they do not have to rush.

Following the presentation and discussion, Katherine then got the group to try some gentle breathing and meditation techniques using an application called ‘Headspace‘. The application can be used on mobile phones, tablets or downloaded onto your desktop or laptop, whichever is more convenient. The application can be accessed through the following link:

https://www.headspace.com

 

ILD Support Group Meeting

20 March 2017

The fifth meeting of the ILD Support Group took place at St Georges Hospital on Monday 20th March 2017  between 16:30 – 18:00.

Jennifer Brimley - Respiratory Specialist Nurse
Jennifer Brimley – Respiratory Specialist Nurse

Today we were delighted to welcome Jennifer Brimley, Respiratory Specialist Nurse, who gave a talk entitled ‘ILD Symptom Management‘. As you can imagine with such a title it covered a very wide and varied treatment of this heterogeneous group of respiratory conditions. The full presentation can be viewed at the end of this post.

These sessions are quite informal and as such encourage participants to ask questions and share their own experiences, which are always very interesting and enlightening – this session was no different! A lively discussion followed the presentation and we just had sufficient tea, coffee and biscuits to see us through to 6pm.

Jennifer also discussed the purpose of ambulatory oxygen, which can be a great benefit for some ILD patients. Rather than a treatment to reduce breathlessness its primary purpose is to increase the levels of oxygen in the blood as not all breathlessness episodes relates to low oxygen. Some other common causes of breathlessness are:

  • Anxiety
  • Infections
  • Low fitness levels, which causes the body to use more oxygen than it would normally require.

You can view the slides from the presentation below. Use the ‘space bar‘ to pause/play the presentation.

Useful links from the above presentation:

IPF Care Patient Support Program

Improving Access to Psychology Therapies (IAPT): www.Wandsworthiapt.nhs.uk

Telephone only consultation : 020 3513 6264

ILD Support Group meeting

27 February 2017

The fourth meeting of the ILD Support Group took place at St Georges Hospital on Monday 27th January 2017  between 16:30 – 18:00.
20170227_171953This month we have been very pleased to invite Sheila Williams, a cardiac nurse by profession, to give a presentation on a very topical and important issue concerning the air quality in London. The presentation particularly focused on how patients can kept well informed and up to date on the quality of the air by subscribing to the free ‘airTEXT‘ service. This service was developed by a consortium of London boroughs, including Wandsworth, and further information can be found by visiting the following link: www.airtext.info.

 

airtextmobile_image2The web based application, which can be viewed on you PC, Apple Mac desktops and laptops, is also available as a download for Apple and Android mobile devices. There are other similar applications available, however a very useful feature in this application is the additional information provided concerning the UV Index. This may not seem so important in the winter months, however, as Spring is beginning to exert its influence the UV Index becomes more relevant as some medication (Pirfenidone) can cause the skin to react in moderate levels of UV, which can cause painful rashes on the exposed areas, so it is important for those patients to use factor 50 sunblock before going outside. To have an application which can provide advanced warning is a very useful tool to help keep you healthy and also to help you plan your activities for the coming days.

 

You can view the slides from the presentation below. Use the ‘space bar‘ to pause/play the presentation.

airtextimage1
 airTEXT is a free service for the public providing air quality alerts by SMS text message, email and voicemail and 3-day forecasts of air quality, pollen, UV and temperature across Greater London. airTEXT is an independent service, operated by Cambridge Environmental Research Consultants (CERC) Ltd in partnership with a Consortium made up of representatives from all the member local authorities, the GLA, Public Health England and the Environment Agency. The airTEXT Consortium is chaired by Paul Clift, Environmental Health Manager at Islington Borough Council.

ILD Support Group meeting

30 January 2017

The third meeting of the ILD Support Group took place at St Georges Hospital on Monday 30th January 2017  between 16:30 – 18:00.

The meeting was opened by Dr Dimitra Nikoletou with the announcement that the group will meet every month from January with a 2 month break in July and August for the summary holidays. A complete list of dates and topics will be published in due course, however in the meantime do take note of the forthcoming dates for your calendar listed below.


Dates for your Calendar:

27th February 2017

20th March 2017

24th April 2017

22nd May 2017

19th June 2017


Dimitra presented this months topic on ‘Self-Management of Chronic Conditions‘. The presentation covered a range of chronic, long term conditions (LTC) such as stroke, MS, mental illness and other chronic conditions and it was clear that there is much commonality across all LTCs and there is much we, as patients, can do to manage our own specific condition(s) by setting achievable goals specific to us and to take back control and improve our quality of life.

You can view the slides from the presentation below. Use the ‘space bar‘ to pause/play the presentation.

Following the presentation there was a discussion among the group over a nice cup of tea and some very nice biscuits and cakes from Singapore! We were then joined by Ms Jennifer Brimley, the relatively newly appointed ILD specialist nurse. Following a brief introduction Jennifer informed the group about the various research and trials currently being explored locally and across a number of partner institutions such as The Brompton, St Mary’s, Charring Cross and Queen Mary’s. It was very interesting and encouraging to hear of the increased research underway into Interstitial Lung Disease (ILD).

The meeting was brought to a close at 18:10. We look forward to welcoming you at our next meeting on Monday 27 February. Until then keep as healthy and active as you can!


 

ILD Support Group meeting

21 November 2016

The second meeting of the ILD Support Group took place at St Georges Hospital on Monday 21st November between 16:30 – 18:00.

The group welcomed two guest speakers Luke Morton-Holtham,physiologist and researcher at Kingston University, and Helene Bellas Henry, Specialist Physiotherapist at UCLH. Helene also runs a pulmonary rehabilitation courses for auto-immune Interstitial Lung Diseases.

 

lukeedit
Luke discusses his current research with the group

Luke discussed his current research into ILD patients and specifically those diagnosed with primary sarcoidosis.

For further information on Sarcoidosis please visit the British Lung Foundation’s website

 

 

 

20161121_170650
Helene demonstrates the Buteyko technique

Helene then took the group through a practical session using the Buteyko breathing technique which comprised a series of breathing exercises and can be used for a wide range of respiratory conditions.

This was all very new for the group participants and took some getting used to. Select the following link for a detailed explanation of the Buteyko breathing technique.

The sessions were followed by Q&A’s and some lively discussion and some well deserved refreshments!