Welcome back to our blog series on National Member News! We are so very excited about getting our National Member news out to the world, so more people can find out a lot more about what it is happening in each country and each organisation!
We caught up with Paul Howard, Chief Executive Officer of Lupus UK, who talked to us about the incredible work that Lupus UK is doing, the needs of lupus patients in the UK, COVID19, Brexit and so much more!
Photo of Lupus UK Trustees from February 2021
How do you keep in touch with or have contact with your members?
Primarily we have stayed in touch with our members through our membership magazine “News and Views”. This magazine was first published in 1979, so its format has changed through the years, but it is a flagship publication for LUPUS UK – it is sent to all members three times a year.
Through the magazine, our members can access the latest LUPUS UK news, whether they have internet access or not; it is important to remember that some of our members may be elderly, may not be computer literate or they may live in areas without good internet service.
We have recently launched an e-mail newsletter as well – we send this out four times a year, in between the printed magazines, to ensure we stay in regular contact with members.
The e-mail newsletter goes to all members we have e-mail addresses for. It is also available to people who aren’t paying members but have indicated they would like to receive it through the LUPUS UK website.
Our organisation is very active on social media platforms (i.e. Twitter, Facebook, Instagram) and we ensure daily updates and news are posted across all platforms. We also have a dedicated LUPUS UK online community forum on healthunlocked.com. We are aware that the social media platforms and online forum go beyond the membership of LUPUS UK. They are there for anyone affected by lupus, not just our members. Through social media and online forums we have been able to reach a wider range of people than before the social media age.
Did you have any special meetings or webinars during the past year (World Lupus Day, Rare Disease Day, Annual General Meeting etc)?
For World Lupus Day 2020 – virtual events weren’t something we had really done as an organisation before, and we dipped our for World Lupus Day. It was a bit of a steep learning curve!
When the pandemic arrived in the UK and restrictions were placed in March 2020, we started doing our Trustee meetings virtually. For World Lupus Day we had our first ventures into virtual events; we had a virtual Pilates session run by a volunteer for the charity. We then had a virtual quiz session in the evening – for fundraising. We found that people engaged really well with those virtual events; it was very positive and it encouraged us to continue developing our virtual events.
Our flagship events this past year have been a series of virtual education seminars. LUPUS UK applied to GSK for a patient education grant. This grant allowed us to work with a company so we could provide a series of high-quality virtual patient education seminars. The series was launched in October 2020 for six months; there is one seminar each month and the topic for each seminar is chosen by our patient community (via polls et cetera). We have expert lupus clinicians as guest presenters; giving a talk on each topic for the beginning of the seminar followed by a live Q&A session.
We have a dedicated website for these virtual education seminars and 2000 people have registered on that website. An average of 200 people joined live for each seminar. Live recordings of seminars are added to the website and they are available to watch on demand.
We have had really positive feedback from people about this series of virtual education seminars, especially people who have been diagnosed with lupus over the last 12 months and have not been able to have much face to face interaction and communication with their specialist teams because of the pandemic. The seminars are a great opportunity to get more information on topics, get questions answeredand feel empowered.
We are very much hoping to get funding for a second series of virtual education seminars, to run from May to October 2021. We are hoping to keep the virtual education seminars running while social distancing is continuing to take place.
Has it been difficult to keep connected with your members during the Covid19 pandemic?
There have been additional challenges, especially for members who do not use the internet. Some of our regional support group volunteers have done community outreach work with local members, for example by doing telephone calls. That was a really positive action and peoples’ feedback about that has been really positive too.
The LUPUS UK helpline has been busier during the pandemic. That is a very good sign, it means people who don’t have internet access are coming to us about information and guidance they may need. We’ve sent out a lot of information by post on lockdown regulations and covid19 vaccinations to people who have contacted us through our helpline.
We have also noticed increased engagement in some areas. Our digital presence, already strong before the pandemic, has increased. We have found that some people have benefited from this increased digital presence and we believe there is scope to keep a strong virtual presence beyond the pandemic. We represent a community of people who may experience issues with mobility or fatigue, so travelling to venues for events can be a barrier for people. With online events, assuming people do have digital capability, we have broken down a barrier for some people and we’re able to have more interaction with them than was previously possible.
Have there been any circumstances during the pandemic that changed the way of living with lupus?
Remote working has been a big change and a positive one for many people with lupus. There has been a lot more flexibility with regards to remote working.
During the pandemic we have seen increased use of virtual, digital technology as a way to stay in touch with friends and family. We very much hope this will continue for people who need it.
There have been some benefits for people with lupus. Especially at the beginning of the pandemic, there was more awareness of people with chronic conditions from the public and better understanding of people who are home-based because of ill-health.
Unfortunately, there have, of course, been negatives too. Access to healthcare services for people with lupus has been a big problem. The overwhelming feeling from people has been one of abandonment. Many people with lupus have been left with cancelled appointments, without monitoring tests and without being able to speak to their specialists when they felt they needed to.
There has also been a lot of media emphasis about people who were experiencing poor health from covid; they have been portrayed as elderly or as people with underlying health conditions. This created a lot of anxiety from people with underlying health conditions that they are at risk. When lockdown restrictions eased, peoples’ anxiety increased. People who were shielding felt forgotten about. Some people continued shielding even after the guidance was officially paused.
The anti-lockdown views of “we’re just doing this to protect people with underlying conditions, lockdown only protects them” created a sense of people with lupus as something other. That was a significant problem, it was dehumanising that people with underlying health conditions were seen as something other than people who are loved and contribute to our community.
Have there been any effects on lupus care or healthcare in general in the UK due to Brexit in areas not regulated by the withdrawal agreement?
It’s very hard to really say because of the unique combination of the pandemic and Brexit. If we were in isolation without the pandemic, it might be easier to say what might be due to Brexit and not covid19.
Until now, all in all, we have not been made aware of a significant shortage in lupus care due to Brexit. There was a short-term shortage (a few weeks) of a specific brand of hydroxychloroquine, but it was not clear whether this was to do with Brexit, covid19 or manufacturing issues.
It might be too early to answer this question because of the pandemic. People with lupus are not getting the care they would normally get due to covid19 anyway, so only time will tell.
How do you keep in touch with organisations in the EU post-Brexit? Has the relationship with EU organisations changed due to Brexit?
I don’t think our relationship with EU organisations has changed due to Brexit.
LUPUS Europe has a lot of things in place already to network with organisations and people from around the EU, for example the Patient Advisory Network (PAN). LUPUS EUROPE does a wonderful job at that and we have people from the UK taking part in the PAN. Hopefully with the recent transfer to Brussels everything will continue to run smoothly for Lupus Europe!
We do have contact with pharmaceutical companies that are based in the EU; there has been no change in our relationship with them since Brexit. Again it might be very early to tell with regards to any possible changes.
One of the areas that might be impacted by Brexit is research. A lot of research is still on hold because of the pandemic. When research resumes we will have to see if there are any effects due to Brexit on research coordination.
Has Digital Health improved or changed in your country?
A lot more remote consultations are taking place because of the pandemic. They are overwhelmingly telephone consultations; video consultations are sparse. Telephone appointments for some lupus patients do have a place, for example perhaps when discussing blood test results or for a routine follow-up. Many lupus patients travel a long way to get to their specialists and this is linked not just with a covid19 infection risk, but also a risk of catching flu during flu season. Having to take time off work for hospital appointments can also be a disadvantage for people. So the option of remote consultations may be good in some cases for some people, but we would like to see this being down to patient choice. We would like to see people with lupus being able to choose whether they would like a telephone, video or face to face appointment; most of the time patients know best what they need. Empowering people to make that choice would be very good.
Telephone appointments do have some positives, but they don’t go far enough; they are not a replacement for face to face appointments.
Video appointments can work better in some cases. But there is a problem with potential digital exclusion. A lot of people don’t feel confident enough to use a digital device for their medical appointments, some people don’t have internet or don’t have high speed internet, some people may have a shared device in a household and it may not be private for them to have a health consult like that.
A separate, but very important, issue is keeping medical records linked to one to another. Different NHS trusts in the UK use different IT systems and those systems don’t communicate with each other. A lot of reform is needed to make the system uniform to make the different systems be able to communicate effectively with one another, so that at any point of contact a healthcare provider can have accurate health records for patients.
Digital exclusion comes to mind as another potential issue here. Because there are different systems people have to use to book appointments with a range of specialists across various hospitals and trusts, and lupus patients can have a lot of specialists, that can easily become overwhelming for people. We don’t want to see people getting lost in the system or falling through the cracks. No one should be left behind.
What would you most need as support in your country for lupus?
One of the big things we need is additional service provision for rheumatology. Rheumatology is under resourced as a specialty; putting additional resources towards it would mean that mean people with lupus would be able to be seen quicker, access services and treatment quicker and achieve a better quality of life quicker.
It might be possible to have dedicated flare clinics for lupus patients where people could be seen within 48 hours if they are having a flare; that would ensure people are seen quickly and any tests or treatments that are needed could be done quickly in those circumstances.
Another very important issue is that there are currently no quality standards for the treatment of lupus in the UK. There is nothing to say that a patient suspected of having lupus must be seen by rheumatology in x number of weeks for example.
The introduction of quality standards for rheumatoid arthritis brought a big change. The NHS measured and audited clinics and those that were found to not be meeting the quality standards were able to get the resources they needed to help them meet their targets. As a result people were seen quicker, started on treatment quicker and returned to a better quality of life quicker. We want to have similar standards for lupus patients. We then want to see the NHS do measures and audits, so we can see exactly where people with lupus are being let down and advocate for change.
At the moment, we are discussing quality standards for lupus with the Rare Autoimmune Rheumatic Diseases Alliance (RAIRDA). We are working with RAIRDA on this as a joint project as we would like quality standards to be introduced for all rare rheumatic autoimmune diseases. Lupus can have organ involvement, so quality standards may need to be tailored to reflect this, but as there are no standards at all at the moment we would settle for standards at least equivalent to existing rheumatoid arthritis standards as a starting point.
Is there anything you think Lupus Europe could help your organisation with?
One of the important things Lupus Europe might be able to work with us on is on recognising the needs of different groups and communities within our society. Our society is multicultural and there are groups that will have different needs to others. We would benefit from understanding cultural differences better; some cultural differences may present barriers to accessing equivalent quality of care for some people.
We have a strong desire to determine what health inequities there are for people with lupus in the UK and how to best address them. By identifying existing inequities we can intervene, perhaps by doing additional community outreach or by providing additional training to healthcare professionals about the needs of different groups of patients or having additional cultural sensitivity training to better meet peoples’ needs.
Another area we would like to talk to Lupus Europe about is how to meet the needs of people living in the UK for whom English is not their first language; some people may prefer to have information in languages other than English.
Also because we have a lot of resources and networks already, other members of Lupus Europe may be able to make use of existing work and resources for some things. We don’t want people to start from scratch where there are existing resources, we would like to share our work and resources with Lupus Europe members.
Is there any topic/theme/area that you think Lupus Europe should focus on, on something where European collaboration would make sense?
Probably the discussion around diversity, equality and inclusion. Wherever you look there’s been insufficient representation from ethnic minority groups within charities as a whole. We know that lupus is a disease that disproportionately affects women and people from certain minority ethnic groups such as black, Hispanic, South Asian et cetera.
We need to have unified efforts to address the issue of inclusion. We need to have efforts to include people from minority backgrounds at every level in organisations.
We need to have more community outreach available, so we can provide better services and help to more people. Certain ethnic groups may experience additional barriers, such as language or educational barriers, and these may contribute to poorer health outcomes. More effort is needed to help combat those issues and break down barriers.
Lupus UK recently launched a video in Hindi, “Yeh Hai Lupus” (this is lupus). This video came about as a result of research looking at how employment is affected in people with lupus from a South Asian background.
Having that representation and ensuring people are seen and heard also encourages others to get involved. We want to keep going with that. When covid19 restrictions are lifted we want to keep doing outreach work, such as going to temples, making people aware of the work we are doing or going to rheumatology clinics in areas with high numbers of patients from South Asian backgrounds, involving consultants and volunteers who have a South Asian background; we need to be able to discuss culturally relevant issues with people. We don’t have all the answers; what we want is to involve people from specific communities so all voices are heard and we want to make sure people have peer support.
Are you aware of the Lupus Europe Member Capacity Building Program?
No. However, I suspect this may be because LUPUS UK is larger than other European members and therefore it may be more beneficial for them.
Could you tell us a bit about a dream you have as an organisation?
Our vision is that every person affected by lupus is able to live a full life and able to access the support they need to do that. One of our aims is to see increased provision for services that help empower people. Things like specialist lupus nurses are definitely a priority for us as a charity.
In fact we recently changed our strategy to prioritise specialist lupus nurses even more. In the past we funded specialist lupus nurses for a term of 5 years; we would fund 2 new specialist lupus nurses every 3 years. Our aim now is to fund a new specialist lupus nurse every year.
Our ambition is that a Trust that a specialist lupus nurse worked in would see the value of the role they have and that they would continue to fund them after the end of the five-year term. We’ve seen that happen in a number of trusts. We’ve seen it in Addenbrookes hospital in Cambridge. Lupus UK funded a specialist lupus nurse for a term of 5 years there, the trust has taken over funding for that specialist nurse, the rheumatology department has expanded and the services they provide have expanded too. They provide things like fatigue management workshops or disease orientation workshops that people can have access to over a period of 5-6 weeks when they are first diagnosed; that is a real positive, having that continued support post-diagnosis is very valuable and would not be possible without a dedicated specialist lupus nurse.
LUPUS UK has funded 13 specialist lupus nurses so far; our aim is to have one in every major hospital around the UK. Hopefully with time we will be able to do research to accurately measure the impact and value that these specialist nurses have. We hope that in time trusts around the UK will see that having specialist lupus nurses are worthwhile and that they might even self-fund the positions to start with.