Patient & Public Engagement

Patient & Public Engagement


BIRD is committed to encouraging greater public awareness of bone and joint diseases and helping patients, their friends, family and colleagues to understand their condition. Our Patient & Public Engagement (PPE) initiative focuses on setting up opportunities to connect, learn and share. People tell us what great value there is in talking to others who understand what they are going through.

Our popular disease-specific information days feature talks from a variety experts in the field. They will give you an overview of the condition and medications, research news and tips for self-management. We are also committed to getting patients involved in research by sharing opportunities and offering support. We have also started work on providing podcasts and webinars for those who cannot attend our information days too!

Please join us and share ideas from your perspective, whether you are a patient a family member or friend – we invite and encourage everyone to get involved – you can find us on Twitter and Facebook or to register for an events email Admin@birdbath.org.uk.

We also have a friendly group of volunteers who help us out at Information Days, focus groups, by testing questionnaires, planning events, fundraising, giving out leaflets and coming up with new ideas. They mainly help to meet and greet people as they arrive, and tell us they enjoy being part of the day. If you’re interested in joining please get in touch with Mel at PPE@birdbath.org.uk.

...
...

Join our mailing list

To keep up to date with information, events and research opportunities, please join our mailing list.

Type in the following to your web browser: http://eepurl.com/drcjn5 or click on the link button below.

Join our mailing list

To keep up to date with information, events and research opportunities, please join our mailing list.

Type in the following to your web browser: http://eepurl.com/drcjn5 or click on the link button below.

Free Information Sessions

Our popular disease-specific information days feature talks from a variety experts in the field. They will give you an overview of the condition and medications, research news and tips for self-management. There is usually a complimentary refreshments and you are welcome to bring a partner, carer or friend.

We now also offer online versions of our events. Please see links for those below too! We have started with ‘Podcasts’ which are a way of listening to information via your computer, mobile phone or tablet. We have created a public profile for BIRD with a small ‘trailer’ – it’s our new online venue that you can visit and listen to PPE podcasts! You can try it out here: https://anchor.fm/bird-ppepodcasts. We would love to hear what you think as this is a very new area for us and one we hope to build on going forward. Please email Mel ppe@birdbath.org.uk with comments and suggestions.

To sign up for an event, please email Admin@birdbath.org.uk.

3 April 2020

Podcast - ONLINE

30 March 2020

Podcast - ONLINE

4 July 2020

BRLSI, Queen Square, Bath

16 September 2020

BRLSI, Queen Square, Bath

Get involved in research

We get lots of requests for help to get patients engaged with research from research active consultants and clinicians and from University researchers.

So far we have helped design short surveys for use at information days, found a patient partner for a Rheumatoid Arthritis study, run workshops in Fibromyalgia and Axial Spondylitis and found patients for a Microbiome Study.

Here are a few of the current and upcoming opportunities you can get involved in.

If any of the opportunities are of interest to you please email PPE@birdbath.org.uk.

We are pleased to announce we have test run our very first PPE ‘virtual workshop’ – our thanks to the people who came forward to volunteer as a result of last week’s call out and those who participated. The theme was ‘Coping with a rheumatic condition during the Coronavirus lockdown’ and involved through a set of 5 main questions around feeling safe, feeling well, keeping active, mental wellbeing and access to treatment – all designed to initiate discussion and capture the experiences and thoughts of the participants.

Many participants told us they had started to self-isolate before the government issued instructions for everyone and they were all aware of the additional risk factors they might face due to their various rheumatic conditions and medications. They said they currently felt safe at home and they were all in different situations. One person had a partner who still works but goes through a process of ‘decontamination’ as he arrives home. This involves changing out of work clothes and shoes which stay in a different room in addition to handwashing/antibac usage.  Shopping wasn’t a problem and most were having deliveries and felt safe with those. No-one was particularly washing the shopping or leaving it for a day; one person  had tried it, but felt that the effort had flared symptoms and decided not to whereas another participant had at times been quite anxious and occasionally felt panicky with regards to knowing whether to clean or not clean items coming into the house. Having a child going between households could be a slight concern (but the entertainment and distraction of having them outweighed it). Most people went for daily walks and those in smaller areas such as villages or near countryside felt safer going outside. Some people said they felt safer shopping in smaller, local shops rather than big supermarkets.  Dog walking was particularly beneficial to those with a dog and they felt safe doing that.

All participants were missing their usual classes, examples of which are were Zumba, Pilates, Adult Ballet, Aquafit, Hydrotherapy. However, they had managed to replace these with online alternatives,  in-house equipment or just going out and keeping active. They felt that sitting for too long was detrimental – making them stiffer and less able to move about when they wanted to and that exercise helps wellbeing. In general, most felt well and were managing. One participant had been unable to have a steroid joint injection which they would have had usually.  In terms of sleep, all participants noted that their sleep was normally disrupted anyway, so it hadn’t changed much during lockdown.. One participant had felt that they were comfort eating too start with but stopped and overall many thought their diet had improved – planning their meals more and seeing it as more of an event.

Everyone recognised the need to be patient with the current situation. Those who were retired hadn’t felt there had been an enormous change as they were used to having to keep occupied – although not being able to travel was missed. One person mentioned being able to do some online teaching for grandchildren, which was very much enjoyed by both. In addition to their daily exercise, the participants were gardening, connecting with friends online, sewing, cleaning, sorting, experimenting with cooking and enjoying hobbies such as family history research. Some people felt that planning the day out was a positive thing to do.

All the workshop participants felt they would be able to get advice over the phone if they needed it and one commented that using the nurse advice line had helped to re-arranged their tests. They were missing the check-ups and hydrotherapy and although there could be some anxiety around GP appointments felt it was better than worry about something.

Workshop Top tips:

  • Find alternative activities if regular exercise classes have stopped, do them online or something of your own. Just don’t stop.
  • Ask for help, people are there for you. Online or in the community. Don’t struggle!
  • It’s ok to do nothing sometimes, just rest if you need to.
  • Have a variety of things to do, small things, not all big tasks. Things you can pick up and put down easily depending on how you feel.
  • Stay in touch with people by whatever means are available to you.
  • Don’t watch the news too much. Perhaps check in, but in the middle of the day, so you don’t start and end the day on a negative.

Everyone enjoyed the workshop and felt it worked really well as a first try so the PPE team will now be evaluating how to progress this as a remote engagement option going forward

We currently have no live research opportunities!

Please get in touch if you need patients for research engagement – please email PPE@birdbath.org.uk

...

Help support BIRD by making a contribution

Our work is built on the kind donations and bequests of previous generations. If you like what we do and would like to help, please consider giving us a donation, or a gift in memory of someone dear to you, inscribed on our benefactors’ board, or even a legacy. £100 would provide refreshments all year for a monthly patient support group meeting. £1000 would cover the print and postage costs for a patient information day and newsletter. £2000 would pay for a Summer Studentship for a scientific researcher. £10,000 would fund a small-scale pilot research project.

Support Us

Our work is built on the kind donations and bequests of previous generations. If you like what we do and would like to help, please consider giving us a donation, or a gift in memory of someone dear to you, inscribed on our benefactors’ board, or even a legacy. £100 would provide refreshments all year for a monthly patient support group meeting. £1000 would cover the print and postage costs for a patient information day and newsletter. £2000 would pay for a Summer Studentship for a scientific researcher. £10,000 would fund a small-scale pilot research project.