Am I at Risk of Developing Rheumatoid Arthritis?
NRAS has recently added the following resource to their website: Am I at risk of developing RA.
This booklet was developed together with both R2P2 patient research partners as well as with a group of international patient research partners as part of the EuroTEAM project. This resource is specifically developed for relatives of those living with RA. We are very proud that NRAS has chosen to include this resource and we think that this is an excellent example how collaborations between patient research partners, researchers and clinicians can have a very tangible and impactful outcome.
R2P2 Annual Meeting 2019
Friday 27th September 2019; 11.45am-4.00pm
At the Medical School, University of Birmingham
The afternoon will include research updates, new involvement opportunities and discussions.
A lunch and refreshments will be provided. If you are interested in coming along please contact Becky Birch and she will provide you with further details.
R2P2 Student Buddy Scheme
In December 2018 the Rheumatology Research Patient Partnership (R2P2) launched the pilot of an exciting initiative to integrate patient involvement in the training of our research students! Read more about this new scheme here. And while you are reading all about it, please help us think about a name which best covers this initiative!
Happy new year everyone!
2018 was an excellent year for R2P2 with the summer event at Winterbourne certainly one of the highlights. A short video of the event which also gives a nice introduction to R2P2 can be found here.
Other highlights from 2018 include the launch of a pilot ‘buddy’ scheme which links new Rheumatology PhD students with R2P2 patient research partners. Updates on this scheme to follow soon!
Looking forward to even more PPI activities in 2019!
Research Changes Lives
Save the date: Free event at the library of Birmingham on Saturday the 27th of October, 1-4.30pm
Showcasing NIHR Health Research in Birmingham
Lots of interactive stands with activities for all ages, for example:
- Listen to the choir Voices of Hope
- Join in with move it or lose it demonstrations
- What researchers do and how you can join in
- Learn about the advances in treating diseases like Rheumatoid Arthritis, Sjögren’s, Diabetes, Colitis and IBD
- See novel treatments and cutting edge technologies
R2P2 will be there as part of the rheumatology tables (Sjögrens/ RA)!
Dear all, we are very pleased to present you with the R2P2 summer 2018 newsletter.
Have a lovely summer!
Save the date: R2P2 event at Winterbourne on the 19th July 2018
We would like to cordially invite you to an R2P2 afternoon at Winterbourne House (https://www.winterbourne.org.uk/) on Thursday 19th July 2018 from 12noon-3.00pm.
The event will feature some short talks from researchers on projects and grant applications which have involved R2P2 patient research partners, lunch and refreshments, and optional workshops about our approach to patient involvement / guidance relating to commenting on lay summaries and similar documents. A more detailed programme will be sent out closer to the date. Above all, this is an occasion to catch up with everyone and to say thank you to you as patient research partners for your continued involvement and support for the research carried out by the Rheumatology Research Group.
We are looking forward to welcoming many of our R2P2 research partners at Winterbourne in July!
"Caring for the Carer" Conference - Wednesday 13 June
The Trust will be holding conference to highlight the important role our carers have. The conference will be of interest to carers, staff and staff who have carer responsibilities. This conference will take place during Carers Week at Tally Ho! Police Training Centre, Pershore Road, Birmingham from 09:30 – 16:00.The aim of the day is to start mapping a pathway through an acute hospital setting from a carer’s perspective. It is open (and free) to all staff from University Hospitals Birmingham NHS Foundation Trust and carers. Places will be allocated on a first-come, first-served basis, so please reserve your place by email: Email: Carers@heartofengland.nhs.uk
We were honoured to join fellow rheumatology support group members along with researchers and clinical staff from City Hospital and the University of Birmingham at the funeral service for John Rowland at Sutton Coldfield in December 2017. Although at Christmas time, the service was standing room only and emphasised the high regard for John and how many, many people he had touched in his life. His widow Di and family shared with us their memories of John and made us both laugh and cry at his achievements. The opening music was suitably Johnesque with "Eye of the Tiger" by Survivor and the closing song was his favourite band Queen with Radio Ga Ga. Di shared with us John's abiding support for rheumatology, the rheumatology support group and for rheumatology research and stunned us with her generous request that donations, if desired, in memory of John would be collected on behalf of the Rheumatology Research Group. We promise to work hard to ensure John's work continues and ask you all for your continued help to reach journey's end.
John Arthur Rowland (6th November 1945-3rd December 2017)
It is with great sadness that we have to bring you the news that John Rowland, one of R2P2’s long standing members, has died on the 3rd of December 2017 after battling cancer for a year. John was there for the start of R2P2 but had been a patient research partner on numerous projects even before we brought all our patient research partner activities under the umbrella of R2P2. Over the years John has had a great impact on the research projects and grant applications he was involved with and inspired many researchers (both novices and old hands!). He has always been a very strong advocate of the work of the Rheumatology Research Group and the role of patient research partners. Even after his diagnosis John still advised on a number of projects as well as spreading the word about R2P2! We will sorely miss this inspirational man and our thoughts are with Diane and the rest of John’s family and friends. If you would like to hear what John had to say himself about being a patient research partner, please see https://www.birmingham.ac.uk/research/activity/mds/projects/ii/R2P2/stories/index.aspx
Marie Falahee, Gwenda Simons and Karim Raza on behalf of R2P2
Wednesday the 23rd of May: The Birmingham Early Arthritis Cohort (BEACON) - a celebration
You are all cordially invited to the upcoming celebration of the BEACON cohort. Some members of R2P2 might be part of the BEACON cohort (through City hospital or the University Hospital Birmingham), for other members it might just be of interest to hear about the research taking place. This event will see talks about the history, impact and future of the cohort; Imaging and biopsy in BEACON; nursing perspective; the role of patient research partners on BEACON related projects and BEACON’s impact on (basic) science
Location: N143 at the Medical School, University of Birmingham from 3pm-5pm on Wednesday 23rd May. Please let the reception at the medical school know that you come for the BEACON celebration and they will point you in the right direction!
The National Rheumatoid Arthritis Society (NRAS) is holding an RA Awareness Week, 19-25 June 2017. Their website contains details that might be of interest to patients and their families and each day will be focussing on different themes.
On Twitter #behindthesmile
Helping us help you be informed.
The Rheumatology Research Patient Partnership (R2P2) was highly commended in the Clinical Research Network West Midlands Awards 2016 in the category ‘Patient & Public Involvement & Engagement’
We are very pleased that R2P2 has received this recognition. We feel that it is thanks to the input of all R2P2 research partners that R2P2 is a success and we would like to extend a massive thank you to everyone involved.
National Rheumatoid Arthritis Society's Healthcare Champions
One of the R2P2 members, Anne Austin, nominated Prof Chris Buckley and Specialist nurse
Alison Deeming (City Hospital) for the NRAS Healthcare Champion awards and her applications were succesful! Here she describes why she nominated them and what the nomination involves!:
Many months ago, I was flicking through the NRAS magazine and read an interesting article that was asking RA patients to nominate a Healthcare Champion, someone who had gone 'the extra mile' or shown 'exceptional support'!
Two names immediately sprang to mind, firstly Professor Chris Buckley!
My journey with RA began suddenly, one night, when I went from an exceptionally fit and healthy 60 year old, to bedridden and suffering agonising pain! My body had completely seized up and I couldn't move or even raise my arms to take my glasses off my head! Paramedics took me to my local hospital where I was diagnosed with sudden onset RA. I was treated at my local hospital but was not impressed with the continuity of care. My husband did some research and read about Prof Buckley at City Hospital and we arranged an appointment to see him.
From that day forward my journey to recovery and coping with my disease began! Prof Buckley organised tests, head to toe examinations and just gave me so much confidence that I was going to get better and live a reasonably active life! After a bit of trial and error I was put on MTX and an Anti TNF therapy and life began to look rosy again!
Prof Buckley has such a pleasant personality and caring manner and gives his time despite leading research programmes and busy clinics but, I know, without his initial support I would still be struggling in my day to day life!
City Hospital RA Department is like a family unit and each and every member of the team is special and it's always a pleasure, and never a chore, to attend for appointments!
My second thought was Alison Deeming, Specialist Nurse! Alison is such a lovely person and without her help and support I would struggle!
Alison has seen me on bad days and good days! On bad days, she has picked me up and dusted me down, given me some TLC and practical support and is always at the end of the phone with advice re medication, steroid injections/tablets and organising my Rituximab infusions!
She gives me confidence and support in a practical and caring manner and she has such a lovely approachable personality and immediately cheers me up with her lovely smile!
For all the above reasons both Chris and Alison (and the entire RA team at City Hospital) are my Healthcare Champions and my applications were successful!
The Awards ceremony, to which I am delighted to have been invited to, will take place on Wednesday, 2nd November, 2016, in the MacMillan Room, Portcullis House, The House of Commons. The Prime Minister is hosting the ceremony and will present the awards.
Anne Austin, R2P2 patient research partner
Newsflash: R2P2 receives two accolades:
The Rheumatology Research Patient Partnership (R2P2) was highly commended in the Clinical Research Network West Midlands Awards 2016 in the category ‘Patient & Public Involvement & Engagement’. We are very pleased that R2P2 has received this recognition. We feel that it is thanks to the input of all R2P2 research partners that R2P2 is a success and we would like to extend a massive thank you to everyone involved.
The Rheumatology department of City hospital (Sandwell and West Birmingham Hospitals NHS Trust) was recently awarded the prestigious BEACON award. The trust has close links with R2P2 and one of our patient research partners, John Rowland, gave a presentation about what it means to be a Patient Research partner, as part of the award procedure! Well done John and everyone else involved!
One of the ongoing projects actively involving patient research partners, both from Birmingham and from further afield, is EuroTEAM (http://www.team-arthritis.eu/). The final EuroTEAM annual meeting took place in Birmingham on Thursday 4th and Friday 5th February 2016. 43 delegates from the EuroTEAM consortium attended the meeting, including 4 patient research partners. Over the course of the 2 days, delegates were presented with keynote speeches covering industry approach to RA, the future of research in RA, diagnosis and treatment of RA and patient involvement; updates of the research conducted within EuroTEAM; and discussions about available future funding for related research project.
One of the patient research partners gave the following account of her experiences of being part of EuroTEAM:
‘The EuroTEAM meetings have all been a great experience. There was a steep learning curve but we've been supported by a glossary and project summary as well as ample opportunities to ask questions. A luxury really to have so many specific professionals to put questions to. And many of them have also developed their lay presentation skills over these four years.
PRP's do most of the hands on work between the annual meetings but what I think has been equally important are the casual conversations and discussions between PRP's and researchers at the meetings. I think it's been fruitful and developing and inspiring for both sides. What lingers with me after the final meeting is an eagerness to continue those discussions and evolve those ideas and thoughts.’
Eva C Johansson, Patient research partner, Stockholm, Sweden
In January 2016, a conference of RACE patient research partners and researchers was held at the Queen Elizabeth Hospital Conference Centre, facilitated by Prof Karim Raza and Dr Marie Falahee from Birmingham; Dr Stefan Siebert from Glasgow;
and Dr Arthur Pratt and Helen Hanson from Newcastle. This meeting was a fantastic opportunity for patient research partners from all three centres to get together and to share their experiences. Some lively discussions took place about how patient research partners can be involved in laboratory based science, patients’ perspectives on research priorities and the most effective ways to share research findings with patients. You can find more information about this meeting at http://www.race-gbn.org/communityengagement/patientsjan16/
Annual R2P2 Meeting
The second annual meeting of the Birmingham Rheumatology Research Partnership (R2P2) took place on Thursday 26th November 2015 at Hornton Grange. Many thanks to those of you who came along. The afternoon saw some excellent talks and lively discussion on a variety of subjects, including synovial biopsies and genetic testing. Several new projects were introduced including Mind the risk and ‘The microbiome in arthritis’. You can find more information about these and other projects in the latest issue of the newsletter and on the R2P2 website. Download the latest R2P2 newsletter
Dr Rebecca Stack has moved on to a new job at Nottingham Trent University and Dr Gwenda Simons and Dr Marie Falahee have taken over as coordinators of the R2P2 steering panel.
Linda Briscoe has also moved on and Becky Birch
now provides admin support for R2P2.
Rebecca and Linda have been instrumental in setting up R2P2 and steering it towards our very successful launch in October 2014. We wish them the best of luck in their new jobs!
Rheumatology Patient Group; City Hospital
Meeting 25 November 2016
Our guest speaker was Dr Guillaume Desanti, a scientist researcher from the Institute of Immunology and Immunotherapy (and Institute of Inflammation and Ageing)
The absorbing presentation was on his research into Platelets and was entitled
" Friends or Foes? Understanding the Dual Role of Platelets during Joint Inflammation"
With a series of illustrated notes Guillaume went through the research journey in a most understandable way which was important for the patients as it is to us a complicated topic.
We now know a little about Platelets/ CLEC-2 / PDPN and how they can positively affect the RA disease resolution.
There is a lot more to do but the group were very reassured that research of this nature was being undertaken with a target of making the lives of those who suffer from RA and other forms of joint inflammation, a lot better
The group thanked Dr Desanti most warmly for his time and excellent presentation.
Rheumatology Patient Group; City Hospital
Meeting Friday 25 September 2015
Dr Gwenda Simons and Dr Marie Falahee were the guest speakers and updated the group on the RAPID research project (Rheumatoid Arthritis; the Public InformeD). Some of the people present have been involved in this project and therefore it had a clear resonance.
The second part of the discussion and talk was on R2P2 and Gwenda and Marie explained the changes and improvements taking place and the revised structure of the steering committee. The website was also being updated with more input from clinicians and patients. There was a drive to recruit more Patient Research Partners who would be matched where possible with appropriate research projects.
As always the discussion was lively, informative and most interesting and Gwenda and Marie were thanked sincerely for coming along
John Rowland (Group Coordinator)
For further information about the Rheumatology Patient Group at City Hospital please contact John Rowland on firstname.lastname@example.org
Rheumatology Patient Group (City Hospital)
Talk by Dr Helen McGettrick Friday 24 July 2015
This excellent and very well presented talk related to Helen's research project on white blood cells and their pathway through the blood vessels in our bodies. The passing of these cells through the blood vessel walls occurs to protect against tissue injuries, such as infections or cuts. Failure to correctly control this pathway is associated with chronic inflammation as found in patients with RA.
The objective of the research was to establish why this happens and then to establish any procedure or drug or mechanism that would prevent this.
Helen demonstrated what happens using two pieces of guttering which was quite brilliant and very understandable! However these pieces will need to be put back in place on her roof before the next heavy rain.
Her project has two years to run and significant advances have been made to date. Funding of course is always an issue and the group can provide letters of support for research related to RA and other related conditions.
Helen fielded a number of questions and comments like a true professional and the Group was very grateful for her time.
For the Rheumatology Patient Group
Rheumatology Patient Group (City Hospital)
The June meeting (26th) welcomed Dr Guillaume Desanti as our guest speaker.
His research relates to the study of platelets to gain insights into potential new approaches to the treatment of Rheumatoid Arthritis.
His use of analogies helped us mere mortals and he gave us all his lay summary and then went on to work through his diagrams. Platelets it has recently been shown have, as well as the ability to provide fuel for inflammatory joints, the ability to provide foam to help put out those fires. Fire extinguisher stuff but not quite as large !!
This was leading edge and had not the clock intervened (and the fact that the staff in the clinic where we meet wanted to close up!) we could have delved deep into the quite fascinating detail and implications.
Very many thanks to Guillaume for giving up his time. It was most appreciated.
Karim Raza delivered his Professorial Inaugural lecture “Rheumatoid arthritis: predicting the diagnosis and preventing damage” on Wednesday 6th June.
Karim provided an overview of rheumatoid arthritis, highlighting how common it is and its cost – for the individual, the NHS and society. Karim discussed the research he has been involved with over the last 15 years at the University of Birmingham focusing on:
- Approaches to identifying those patients with a new onset of joint inflammation who will develop rheumatoid arthritis, as opposed to an arthritis that will get better by itself. Karim explained that accurate prediction would allow treatment to be targeted to those who really needed it.
- Approaches to getting patients with a new onset of rheumatoid arthritis to seek help quickly from their GP and for their GP to then refer then quickly to a Rheumatologist– allowing patients to start treatment in timely fashion
About Karim Raza
Professor Karim Raza, BA, BMBCh, PhD, FRCP
Professor of Clinical Rheumatology and Honorary Consultant
School of Immunity and Infection
Karim Raza qualified with a BMBCh from the University of Oxford in 1993 having completed a BA in Physiological Sciences in 1990. He moved to the West Midlands in 1997 for his postgraduate training in Rheumatology. In 2004 he completed his Rheumatology training and was awarded a PhD from the University of Birmingham for research on disease mechanisms and predictors of outcome in early arthritis. In the same year he was appointed as Senior Lecturer at the University of Birmingham and an Honorary Consultant at Sandwell and West Birmingham Hospitals NHS Trust. In 2009 he was elected a Fellow of the Royal College of Physicians and was awarded the Michael Mason Prize by the British Society for Rheumatology. His research focuses on rheumatoid arthritis, addressing pathogenic mechanisms, biomarker development and strategies to enhance clinical outcomes for patients with a new onset of disease.
The Rheumatology Research Patient Partnership Group had its official launch on Friday 24th October 2014.
The day included an overview of activities of the Rheumatology Research Group and what it means to be a Patient Research Partner with talks from both Researchers and Patient Research Partners. A networking lunch allowed Researchers and Patient Research Partner to meet informally, discuss their research and share their experiences of living with a rheumatic disease.
Interactive training workshops in the afternoon included discussion on approaches to reviewing projects (in the fields of behavioural medicine and rheumatoid arthritis pathology) and to providing feedback.
The day was well received by all who attended:
- The presenters made every effort to supply and explain as much information as possible; explained the benefits of research and how the patient partners can help.
- Excellent ratio of clinicians to patient partners
- Has increased my enthusiasm for the role of Patient Partner
Can you prevent rheumatoid arthritis? Free event at the University of Birmingham (part of the British Science Festival)
University of Birmingham's Rheumatology Research Group present their findings on what causes Rheumatoid Arthritis, predictive testing and preventive treatment. Audience members will have the opportunity to ask the panel questions and to engage in debate and discussion.
For more information, please go to http://www.britishscienceassociation.org/british-science-festival/can-you-prevent-rheumatoid-arthritis
When: Thursday 11 September 2014
Time: 10.00 - 11.00
Place: Lecture Theatre WG5, Aston Webb Building, University of Birmingham
Category: Our health