18 December 2017

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!

20 November 2017

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’ (http://www.re-mind.london). 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.

http://www.re-mind.london/#listen

16 October 2017

On 16^th October Steve Jones (Chair of the trustees- Action for Pulmonary Fibrosis) attended St Georges ILD Support Group and shared his own personal journey with IPF over a period of almost 10 years. Steve then presented a very interesting and informative talk about the charity and its work to support patients affected by Pulmonary Fibrosis.

Steve highlighted the importance support groups are to patients, families and carers. That is why it is one of Action for Pulmonary Fibrosis (APF) top priorities since the charity started in 2013. There are currently 45 support groups which have formed through the support of APF, with the goal of the charity to ensure that all patients affected by pulmonary fibrosis in the UK have access to a support group by 2022. This will need over 100 groups to be able to achieve this. Lorna McLauchlan is the support group co-ordinator at the charity and Lorna and Steve are working hard to engage with health professionals across the country to develop and maintain effective groups so that we can provide this vital support.

Select the image or link below to view the presentation.

APF Presentation October 2017

18 September 2017 – 1st anniversary!

The ninth meeting of the ILD Support Group and 1st of the new 2017-18 season and the groups 1st anniversary took place at St Georges Hospital on Monday 18th September 2017  between 16:30 – 18:00.

The topic this week was “Keeping up with your Hobbies and Interests” and was presented by Occupational Therapist and senior lecturer, Catherine Gray. Catherine has previously spoken to the group back in April and we were delighted to welcome her back for the restart of the group meetings following the summer holidays.

It was also noted that this new season coincided with World IPF Awareness week (16 – 24 September). The session was well attended and we welcomed some new attendees to the session, who has travelled all the way from north London! Catherine opened the discussion by encouraging participants to consider what techniques helps most with the various symptoms and challenges we all experience when living with ILD. This generated a good discussion among the group and a list of strategies were developed and recorded onto a flip chart and reproduced below.

To summarise the ‘Top Tips’ were as follows:

• Pausing – Have plenty of rests as required throughout the day
• Be aware of your limits
• Being adaptable – make the most of ‘good days’
• Planning the day and/or activity
• Planning is particularly important when traveling be it by car/tube/train or flying
• Take control – What do you want to do and when – How will you get there – Who can help you
• Shared experience with one another, this can be very helpful as others in the group will be able to identify similar issues and may have developed some helpful coping strategies.

World IPF Week: 16 – 24 September 2017

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.

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!

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.

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!

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.

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.

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.

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

Guided relaxation to help with your breathing:

The following recording is a guided relaxing exercise to help control your breathing. Before playing the recording be in a relaxed and comfortable place and make sure that you will not be interrupted during the session.

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.

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

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.
This 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.

The 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.

 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.

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!