February's Guest Blog - Nicola Daly (Lupus Specialist Nurse)

[Paul_Howard]

This month's article has been written by Nicola Daly who is the Rheumatology Clinical Nurse Specialist at University College London Hospital. She's taken a moment out of her schedule to let you know a bit about her role, projects she is involved in and lupus research. Here's what she had to say;

"My job title is 'Rheumatology Clinical Nurse Specialist' however my role is quite unique and involves working with young people and adults with lupus. I am responsible for the transition of adolescents from the paediatric setting to the adolescent setting and then onto the adult setting. I am in a very fortunate position that I run nurse led clinics in all three areas, therefore offering a smooth path for transition and good continuity, which is very important when working with young people. Adolescence is a particularly difficult stage of life. Young people are trying to find themselves, they are making life changing decisions and discovering their place in the world. Having a long term condition on top of that, as you can imagine, can cause huge amounts of anxiety, stress and uncertainty. I believe providing good care, familiarity and continuity instils trust and reassurance in a turbulent stage of life. With funding from LUPUS UK I have been given the opportunity to work in this role for nearly 3 years now and they continue to believe in our work and without that help and support we would be unable to continue to work with and support people with lupus.

Through LUPUS UK I have also managed to set up a support group for young people between the ages of 16-25. It has been a great success and people from all over the UK are able to meet or be in touch with other young people in their situation. We meet every 2-3 months and it is member led: The topics, discussion, meeting dates and times are all decided by the young people. We are planning our first day trip this summer and the group have lots of ideas about fundraising and increasing the public's awareness of lupus.

I also coordinate the JSLE cohort study which looks at the pathway of lupus from initial diagnosis right into their adult years. This study is instrumental in helping us understand more about lupus. Research is so important for the lupus patients of the future. It enables us to provide more effective treatments and deliver the highest standard of care possible. There is still so much we don’t know and these studies are the key to all our unanswered questions. Here at UCLH I am extremely lucky to work with an amazing, experienced and dedicated team. Our links with UCL and the newly founded Adolescent Research Unit (the only one if its kind in the world) ensure we are up to date and part of a big network of people all working together to achieve the same goal - improving the lives of people with rheumatological conditions such as lupus."

For resources about lupus in young people (including details of the meetings mentioned above), please head over to lupusuk.org.uk/young-people

[mstr]

Hi, this sounds absolutely fabulous....it's great to hear that people are being supported by Nicola and to hear about the funding that Lupus UK provides. As an almost 50 year old (on Saturday) I find it difficult to come to terms with having lupus, so goodness knows how younger people do it when it is a time they would ordinarily have so much energy. It's fab that they can get together regularly throughout the year. It's so nice to hear about support that is in place for people with lupus. I hope Nicola and the gang have some fab days out too

[Purpletop in reply to mstr]

Happy birthday, are you doing anything nice?

[mstr in reply to Purpletop]

Hi....thank you. We are going to a local pub/restaurant with all the family and a few friends for a meal so it should be lovely. I guess I won't be able to drink much as I don't think you are meant to on methotrexate but I might just have a glass or two of Rose. I don't know if I should be celebrating reaching a half a century as it sounds soooooooooo old but we will have fun I know. I hope you have a good day too x

[Silvermyst]

This is fantastic! For me the very worst thing about Lupus is the isolation it causes, and I think it is fabulous that these young people, who are learning to live with the illness at a very difficult stage in their lives, have support and are not going through it on their own. Fantastic work Nicola and all of your team, you are doing a wonderful job

[megs_tom]

Lovely to read about the fab work you do for these young people. Being 23 (24 next month), and still awaiting diagnosis, I know how hard it is for me. So I can't imagine how hard it is any younger and going through this xxx

[Purpletop]

I second the previous posts, this is a great job, Nicola and team, I know I would find it difficult to see these young kids suffering on a daily basis and yet bring positivity to such an illness that hit them at this formative stage in life. Well done and keep going!