The St. George’s ILD Support Group has been set up to support all ILD diagnosed patients, their relatives and friends. The group will meet monthly and will have invited speakers who will discuss topics on a variety of ILD related subjects and therapies including yoga, breathing exercises and mindfulness among others.
Following the cancellation of the February meeting we were determined to find a way to ensure that the group could continue to meet safely. To this end we held our first virtual webinar on the 18th March, which was well attended, with attendees logging in with a variety of devices, including laptops, iPads, iPhones and Android. We were also delighted to welcome Faye Tobbey who took the group through a series of Pulmonary Rehabilitation exercises, which the group were able to take part in from the comfort of their own homes.
The group also discussed how they were being affected by the developing Covid-19 emergency and what changes they were instigating to reduce any risks of infection. It was also apparent that there was a greater need for the group to keep in closer contact and to share information, hint and tips on safeguarding ourselves, our families and friends. It was decided to meet once a fortnight rather than once a month during this special emergency period.
Useful related links for the extremely vulnerable:
I know that it’s July and the support group would usually be on holidays for July and August, however at the Ham House event, the group decided to have our first ever July meeting since the group was founded in September 2016.
It was great to see so may attend our July meeting, including some new members. We were also delighted to be joined by Katie Rose founder and leader of the ‘Singing for Lung Health‘ group, which was set up at St Georges Hospital in 2015.
Katie took the group through the theory underlying how singing can have both physical and psychological benefits for people living with a long term respiratory condition. Once the theory was done it was time to put it into practice. We started off with some simple scales, but before long we were singing 2 part harmonies, which we all thoroughly enjoyed. It was a wonder experience and provided a pleasant surprise just how well we all sang together.
The group will have a break for August, but we will be back again on Monday 16th Spetember. Have a lovely summer holiday, see you all at our next meeting, until then keep well!
On 28 June our Support Group had our first summer outing since the group was formed in September 2016. We were very grateful to Heritage2Health and in particular Theresa Nash, Director of Heritage2health, for their wonderful organisation on the day and for looking after us and the other groups so well throughout the day and not to mention the various activities arranged throughout the day.
Some of the activities included:
Sensory activity and Garden Tour
Singing for Health
First Aid Skills
Arts and Crafts
Guided Ham House Tour
We were greeted by a lovely sunny day and at 09:30 our minibus arrived outside the Atkinson Morley building at St Georges Hospital where 8 of our group were waiting to be collected. We drove through a relatively quiet Richmond Park and it was lovely to see the Deer in their natural habitat.
On arrival we made our way to the registration area inside the grounds of Ham House and there we met up with Keith, Jean, Ray, Mick and Sue from our support group and who travelled under their own steam (probably didn’t trust my driving of the minibus, and I don’t blame them!)
We were soon introduced to our student volunteers, 3rd year student nurses from Kingston University. We were looked after so well, with our every need catered for. There was plenty of refreshments and we all had our own seating, which seemed to follow us as we moved around the grounds and gardens! It was important that those needing any additional specialist support, such as ambulatory oxygen, were catered for so the support group was able to provide an additional oxygen concentrator.
It was great to hear from the Ham House staff and garden experts, such as Lyn Feldschreiber, who provided us with a deeper understanding of the various plants grown in the gardens, most of which were edible – a useful piece of information if ever you wish to forage!
Select any photo below to view the photo gallery
For some of the members of the group they came prepared for a more ‘active’ day. Ray gave the Yoga a try and observed “not as easy as it looks” I think Ray may now be considering joining a local yoga class sometime soon!
We were all entertained and enthralled by Master Story Teller, Eli Anderson from StoryAid. It also turns out that he is also an accomplished Jenga Drummer! All activities were scheduled at specific times throughout the day. Participants could pick and choose which activities they wished to take part in or if they just wished to sit and enjoy the fine weather while having a nice cup of tea with biscuits or some cake! The day was un-rushed and very relaxing, which was the main idea of the day!
But as they say “All good things come to an end” and although no one wanted to leave we had to pack up and retrace our route back through Richmond Park and home.
We would all like to express our gratitude to every one envolved in making our first summer event so memorable and we are so looking forward to next year.
Thank you Theresa and to the entire team!
From everyone at the St Georges ILD Support Group.
It was great to meet up with the group as spring seems to be getting its act together at last! It also seemed a most appropriate time to think of all things out doors and to this end we were joined by Theresa Nash, Director of Heritage2health. Theresa introduced the group to the purpose of Heritage2Health (H2h) and explained that it was a system developed by nurses through Kingston University and St George’s University of London, School of Nursing, Faculty of Health, Social Care and Education, set up to encourage collaborations between the healthcare and heritage sectors, with the aim of facilitating experiences for patient groups and those who may feel socially isolated.
Ham House Event – 28 June 2019
Theresa then invited group members to participate in the main summer event at Ham House on Friday 28 June. This is a free event and was very well received. The committee has since agreed to fund the hire of a minibus for those in the group interested in taking part. Entertainment, refreshments and personal assistance will also be available at no cost, so really there is no reason not to be there on the 28th! We’re hopeful that the weather will stay dry and sunny – fingers crossed!
A BIG Thank You!
The support group were very grateful to Anne Whiting, Secretary to the Trustees of The Friends of St Georges, for the very generous donation of £1500 to the group. This will be a huge help with the groups running costs in holding the monthly meetings and providing the other various activities we arrange for members and ensuring the continued support to our existing and new members, their families, friends and carers.
The group had another great meeting on Monday and we were delighted to have Dr. Dimitra Nikoletou update the group on her recent trip to the 8th International Meeting on Pulmonary Rare Diseases and Orphan Drugs which took place in Milan, Italy. Dimitra highlighted the key findings from her research paper, which she presented and entitled…
“Differences in symptoms and cardiopulmonary responses to Treadmill v’s Cycle cardiopulmonary exercise testing and comparison with the 6MWT in Interstitial Lung Disease (ILD)”.
The presentation was very interesting and particularly to the group as a number of attendees had taken part in the original study, so it was very satisfying to see the final results nearly 3 years from the start of the study… the general feeling from the group was that It was worth the wait!
As ever there was lively discussion following the presentation, with many questions for Dimitra to answer as well as our usual general discussion and chat over some lovely and obligatory carrot cake and coffee!
With the Easter holidays fast approaching the next meeting of the ILD Support Group will take place on…
Monday 29 April at 16:30, Please note the different date for April and put it in your calendar.
“A picture paints a 1000 words” and that is no truer then from these photos taken during the groups end of year meeting, where there was ample supplies of mulled wine, minced pies and other goodies to mark our last meeting of 2018
A poignant start to the meeting as we all remembered Les Gresswell, our cofounder, and who passed away suddenly in October this year.
Among our regular members it was lovely to welcome Les’s widow, Kiyoko, to the meeting and as a special surprise, Kiyoko made a very generous donation to the group in honour of Les’s memory. It was a very moving tribute and the group expressed their sincere gratitude to Kiyoko for this generosity and at such a difficult time for her and her family. The committee will ensure that the funds will be put to good use to continue to reach out to all who are living with ILD and their families and carers, often one and the same.
John also provided a brief presentation on the newly published 5 year plan, launched by the ‘Taskforce for Lung Health’ on 5 December at the British Thoracic Society Winter Conference, held at the Queen Elizabeth II Conference Centre at Westminster. Before the launch there was a Parliamentary Briefing held on 4 December arranged through the BLF, who were the secretariat for the taskforce and who were instrumental in the forming of the Taskforce in December 2017. The full report can be downloaded HERE.
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!
IPF AWARENESS WEEK
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.
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.
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.
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!‘
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.