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Autumn 2020 Newsletter – Out Now

 

For the Autumn 2020 newsletter, please click here

 

 

 

 

A Jump to the Frontline

Article by Louise Beitverda, Lead Respiratory Nurse

Prior to the COVID-19 pandemic, my role as the Lead Respiratory Nurse at UCLH involved leading a team of clinical and research nurses. The research work included inputting information into the national registry for Idiopathic Pulmonary Fibrosis (IPF), participating in audits and assisting those involved in individual research.

In March, as the numbers of hospital admissions for COVID-19 started increasing, it became clear that most non-COVID-19 research would temporarily stop, and our clinical responsibilities would change. Around this time, due to our experience with non-invasive ventilation, some of the nursing team became involved in helping to deliver an education programme for Continuous Positive Airway Pressure (CPAP). This is a type of ventilation used to support patients in respiratory failure and it was used for COVID-19 patients. We helped to train over 100 clinicians on many different devices in just a few weeks. One of the devices was the life-saving Ventura CPAP designed by UCL very early on in the pandemic and sent to 30 different countries worldwide.

Once training was completed, we worked on the Respiratory High Dependency Unit (RHDU). This unit was set up to support COVID-19 patients requiring CPAP. Other team members were able to cover clinical posts remotely, which enabled patients to be able to continue to have vital telephone support during this time. One of our research nurses was able to help support the emerging COVID trials. Our administration team were asked to work remotely, but continued to provide support by ensuring that the nurses’ emails were attended to, and urgent messages relayed. Everybody played a vital role.

Working on the wards again was an interesting experience. There were certainly some challenging aspects. Long shifts and night duties (after 16 years) took some getting used to. I re-discovered the energising effects of ‘red bull’ at 3am, although it didn’t quite give me wings! Working in full PPE had its challenges, although it was reassuring and we felt protected wearing it. It took some time to ‘don’ on and ‘doff’ off, but fortunately there were staff to support us with this dressing task. PPE was incredibly hot, and the masks could cause considerable discomfort when worn for long periods. PPE made it difficult to identify people and to be able to communicate effectively, especially to people working outside of the COVID area. However, the challenges were overcome. We quickly started writing names on our gowns, and some even attached photographs of themselves. Barrier cream was supplied for our sore noses, and regular refreshment breaks were provided to allow staff to rehydrate; 2 hours was really the maximum time it was comfortable to spend in full PPE.

Communication issues were addressed via technology with varying degrees of success. It took some skill to master the walkie talkies which connected us to outside areas and sometimes it was just easier to write a note on pen and paper and hold it up against the glass entrance door when a message was needed to be conveyed to the outside world. Technology was of course very useful in terms of keeping patients connected with their families and friends at a time when visitors were not routinely allowed on the wards. Although there were some very difficult situations, it is easy to imagine how much harder this would have been had the pandemic occurred a decade or two earlier.

As a team, we will all have our individual memories of our time in the RHDU. Some of these memories will be about the intensity of the situation, and the experience of caring for patients with severe breathlessness on CPAP. However, many of these memories will be of positive events. It was always a lovely moment when patients were discharged and we were able to clap and say farewell to them, especially to those who had been on the unit for a long and difficult time.  For me, a special moment was seeing a patient being interviewed on the BBC, discussing his recovery with the physiotherapy team. I had been on duty the night he had arrived from Intensive Care, with a tracheostomy. It was incredible to think of the journey he had been on, and so pleasing to see his progress. It’s rare that ward nurses find out what happens to patients after they have been discharged, so this was very uplifting.

Despite the difficult situation, there was a great sense of teamwork throughout our time on the RHDU. It was a privilege to work with so many other members of the multidisciplinary team, many of whom were also redeployed and were undertaking roles so different to their own. The psychology team were available to support staff and I know that they were valued. We were well looked after on the ward, with constant deliveries of donated hot meals, and refreshments. Things like this really were appreciated and gratefully received, taking the little stresses out of the day. Other things that made life easier were incentives such as free taxis and parking, to be able to drive to work and not have to consider getting the underground for a few weeks really made travel easier and safer.

Guiding the team through this uncharted territory could have been a very difficult experience, as it was an ever changing landscape and it was not clear how long the situation would continue. However, each and every one of the nursing team showed an enormous amount of flexibility, patience and resilience, and they should be very proud.

Whilst we cannot be sure what lies ahead, we will continue to contribute to the research agenda, as this is such a pivotal part of healthcare. Never has there been a time when research was more important.  Research can and will save us from this fatal virus – there are now better treatments for COVID-19 and there are new vaccines on the horizon, and very soon we will feel safe once more.

 

Bronchiectasis Fundraising Update

Update, by Jane Walker

Usually at this time, I am well under way with preparations for our main bronchiectasis fundraising event of the year, our annual Christmas Concert.  None of us imagined at our joyful concert last year that, little than three months later, our lives would be transformed by a pandemic.  Normally, by October, I would have run 5 or 6 stalls in the UCLH atrium which runs alongside Professor Brown’s Friday morning clinic. I miss all the preparation sourcing goodies to sell and making my cards and I miss seeing everyone at UCLH – some of our supporters come to every stall.  I will be restarting the stalls as soon as I am able to in 2021 and will keep you updated via the Breathing Matters website.  Fortunately, I was able to do my usual annual St Valentine’s Day stall, which was extra special this year as the actual date of the stall was Friday 14th February!

Whilst my fundraising activities at UCLH are on hold, I have been coming up with imaginative ideas so my fundraising can continue during the COVID pandemic.  During the lockdown in early May, I set myself a challenge to walk 3 miles each day over 7 days. With my lung condition, I manage shorter distances each day, but I was determined to do a much longer walk every day as a fundraiser.  I set up a JustGiving page and contacted friends, family and our concert supporters and on the JustGiving page, I posted notes and photos from my walks to share with everyone.  Through JustGiving and other donations, my walks raised a superb sum of £1000.  I was very touched by everyone’s kindness and generosity.

Our Christmas concert last year raised over £4000 for research by Professor Brown and his team of scientists at UCL.  We are very sad we can’t be all together for our annual concert this year – our friends in the Holst Singers are planning to put a small special treat together for us and I will be in touch with further details closer to Christmas.

A very big thank you to our bronchiectasis family of friends and supporters!

 

Are you a Christmas Charity Elf?

Christmas is a time to remember our loved ones that are sadly not able to join us at this family festive season. Christmas is also a time for joy and charity.

Many of you each year want to raise money and support a charity around this time of year, often in tribute to a loved one to keep their memory alive or to help make a difference.

It’s very difficult to plan this year for obvious reasons and many events will be virtual rather than real-time, but there are definite types of charity elves out there.

There are the ‘doers’, who organise charity events, such as mulled wine and stilton evenings, Christmas present-making arts and crafts afternoons, Santa runs, Christmas carol singing, and the good old-fashioned Christmas bazaars/stalls.

Then there are the ‘goers’, who attend all charity events, those with a voice for carol singing, those with a taste for mulled wine, those who love making things. The go-ers are as important as the do-ers as, without them, the charity events would flounder.

And then there are the ‘givers’, who readily donate bric-a-brac to the stalls, who bring food/wine to the evenings, who buy charity Christmas cards and those who give money to charity rather than buying too many presents.

Which type of Christmas charity elf are you? Do you like to get stuck in and organise Christmas charity events? Do you love the social whirl of going to all the Christmas dos, even if they are virtual this year? Do you love giving? Perhaps you are a combination of all the above. If so, we applaud you all!

Whatever your type, Christmas wouldn’t be the same without you!!!

Clean Air Day Campaign

We are honoured to have worked with Health Awareness on the 2020 Respiratory Health Clean Air Day Campaign.

A printed publication is enclosed within every copy of the Guardian newspaper published on 8th October 2020 and the content is available online at www.healthawareness.co.uk/respiratory.

The campaign features exclusive content from key thought leaders and industry voices about respiratory conditions and external risk factors such as air pollution and COVID-19.

All You Want for Christmas is a Santa Dash

The Virtual Santa Dash is a 5K fun run to be done with friends and family/pets or competitively on your own. Take this 5K challenge anytime in November or December 2020. Do it in your running gear alone or dressed as Christmas elves with the family! Earn the offical Santa Dash Medal and goodie bag. Simply register for the event and you will be given access to the Virtual Marathon Series runners portal where you can submit your evidence before or on your run day.

The Virtual Santa Dash has a special challenge attached and requires you to dress up in Christmas fancy dress to complete it. The Virtual Marathon Series are also offering two prizes:

  1. The first one is for the fastest time in Christmas fancy dress, become the Christmas world record holder.
  2. Secondly, to the person who raises the most money for their chosen charity by Christmas Day.

They will donate £250 to the charities chosen by the 2 winners who will receive a goodies pack from their partner Run Through in the post.

All you need to do now is register – here’s how:

  1. Register here – you will receive a confirmation email to log in to the Secure Charity Portal where you can pay your registration fee [£25 covers the cost of the place and medal only and does not go to the charity].
  2. Breathing Matters will get notification that you have signed up for your challenge and will contact you – or you can contact us directly at breathingmatters@ucl.ac.uk
  3. Set up a Breathing Matters personal fundraising page.  It is up to you how much you want to raise for Breathing Matters; there is no minimum sponsorship limit.
  4. Sort out your Santa outfit and start training!!!

Run for Halloween … Virtually !!

Trick or treat for the kids this year might get the red flag, but why not do your own healthy version with a medal and goodie bag instead!  This 5K spooky run is great for everyone everywhere and is lots of fun. Take the challenge on or before Halloween – at a venue of your choice. Do it in your running gear or a spooky character from your favourite movie scene!

Simply register for the event and you will get access to the Virtual Marathon Series runners portal where you can submit your evidence before or on the big day.

The Virtual Halloween Run has a special challenge attached and asks that you dress up in fancy dress on Halloween to complete it. Quite simply, to earn the special challenge virtual medal, you will need to upload a picture of you at the end of your run in fancy dress as well as proof of your completed 5K.

The Virtual Marathon Series is offering two prizes:

  1. The first one is for the fastest time in fancy dress, become the Halloween world record holder.
  2. Secondly, to the person who raises the most money for their chosen charity by Halloween.

They will donate £250 to the 2 winners’ chosen charity who will each receive a goodies pack from their partner RunThrough in the post.

To apply for the fastest runner, you will need to enter your time through the Virtual Marathon Series portal and complete the 5K in fancy dress on Halloween.

To apply for the highest fundraiser, you will need to send an email to virtual@runforcharity.com with a link to your fundraising page no later than 1st November 2020.

All you need to do now is register – here’s how:

  1. Register here – you will receive a confirmation email to log in to the Secure Charity Portal where you can pay your registration fee [£25 covers the cost of the place and medal only and does not go to the charity].
  2. Breathing Matters will get notification that you have signed up for your challenge and will contact you – or you can contact us directly at breathingmatters@ucl.ac.uk
  3. Set up a Breathing Matters personal fundraising page.  It is up to you how much you want to raise for Breathing Matters; there is no minimum sponsorship limit.
  4. Sort out your Halloween outfit and start training!!!

Free Will-Writing this September

You can help Breathing Matters at no cost to you during September’s Make a Will Campaign.

Throughout September, selected solicitors across London and the home counties have agreed to write your will for FREE. Instead, you are asked to make a donation to UCLH Charity [for Breathing Matters, please specify Fund 1138].

The solicitors will also advise on how to leave a gift to the charity, although there is no obligation to do so and it is not a condition of taking part.

As well as a face-to-face or remote session with one of the participating solicitors, you can also access the same services completely digitally if you prefer through the Guardian Angel will writing service. Click on this link to start the process and enter code UCLH-FREE-20 to get it for free.

To find out how to take part and for a list of participating solicitors, click here.

Or, for our online service, click here.

If you have already taken part and would like to make a donation towards our charity, you can do so by clicking this link

September = #Breathtember

September is #Breathtember – Global Pulmonary Fibrosis Awareness Month

 Get out of Breath for #Breathtember

Tweet Tweet!

https://www.breathingmatters.co.uk/wp-content/uploads/2013/06/twitter.png

To help raise awareness, we ask that supporters tweet different challenges during September including the term ‘#Breathtember and ask their followers to retweet and share this information as widely as possible.

Think outside the box for your challenges – getting out of breath for you could mean:

  • Cycling around your local park
  • Doing a virtual 5K/10K run or walk
  • Singing until you are out of breath
  • Walking over the wondrous London bridges
  • Blowing bubbles … or windmills!
  • Or just simply walking up the stairs!

The important thing is that you tweet your challenge including the hashtag ‘#Breathtember’ to raise awareness of pulmonary fibrosis.  Add a photo if you like.  This September, we want as many people as possible to get to know what Pulmonary Fibrosis really means.

Follow us on Twitter @Breathingmatter 

Virtual My Prudential RideLondon – Your Prudential Your Way

We hope you and your family have been keeping well during these challenging times.

In a parallel world, Prudential RideLondon would be fast approaching. The event – the world’s greatest festival of cycling – was due to take place on the weekend of 15 and 16 August 2020 but, as I am sure you understand, has not been able to go ahead in its traditional form this year.

This has been very disappointing for Breathing Matters as this is one of the annual events that helps us raise crucial funds for our research.

In April 2020, on what would have been the day of the 2020 London Marathon, you may remember the 2.6 Challenge was launched nationally to raise money for UK charities. Breathing Matters was blown away by the response from our supporters who raised thousands for our important research.

Now we want you to do the same again – but this time on wheels, with My Prudential RideLondon.

About My Prudential RideLondon

We’re celebrating the original August event weekend with My Prudential RideLondon: a free fundraising challenge that gives people the opportunity to get on their bikes – or scooters, skateboards, trikes, tandems, wheelchairs, penny farthings, unicycles – and raise money for your favourite charity – Breathing Matters of course!

Participants will be able to take on four challenges based on the traditional Prudential RideLondon weekend event distances:

  • My Prudential RideLondon-Surrey 100 – 100 mile cycle
  • My Prudential RideLondon-Surrey 46 – 46 mile cycle
  • My Prudential RideLondon-Surrey 19 – 19 mile cycle
  • My Prudential RideLondon FreeCycle – you choose your distance, anything from 1 mile!

How do I sign up and fundraise?

  1. Register at myridelondon.co.uk  – From here you’ll be able to pick your distance: 100, 46 or 19 miles, or set your own challenge.
  2. Join Team BM’s fundraising page at https://www.justgiving.com/fundraising/prudentiamyridelondon-teambreathingmatters
  3. On either Saturday 15 August 2020 or Sunday 16 August 2020, complete your challenge and encourage your family and friends to take part too!

You get an app, you get certificates, you get selfies – you get the lot! 

The My Prudential RideLondon app will be available to you to download in the week before the event. The app will allow you to virtually compare your My Prudential RideLondon route to the world-famous Prudential RideLondon routes.  So, if you choose to ride the 100 miles, you may be taking part in Southampton, Birmingham or Newcastle, but the app will show your ride as if it was on the Prudential RideLondon route. Imagine the final 100m back to your home turned into the final 100m down the iconic finish stretch of The Mall! Once you have completed your ride, you will be able to download a personalised certificate, selfie frames so you can create your own finisher photos and crucially, you will have raised vital funds for Breathing Matters.

Tempted? Let us know and help get the message out there!

If you want to join in with My Prudential RideLondon, please let us know and share your challenge on our social media as your participation will hopefully encourage others to take part and raise money too.  As entry is free, why not get a team together? The more the merrier!!!

Thank you for helping

We would really love you to be part of a unique Prudential MyRideLondon experience, to raise much needed funds for Breathing Matters and to be part of the national campaign to save the UK’s charities.

Please help us get back on our feet and restart our important research.