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.
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.