A week in my life at NRAS

It’s Thursday 18th March and I say to my colleague Clare, “it’s my turn to write the NRAS blog, what shall I write about?”. “Why don’t you write about a day in your life or a week in your life, people probably don’t know a lot about what you do”, she replied. Hmmm, I thought, OK, that’s what I’ll do!

It’s Friday 19th and the coming week is going to be particularly challenging as we are in the run up to our major rheumatology conference (the BSR, British Society for Rheumatology AGM and Conference) at which we have an exhibition stand and many of the staff attending, and this year I have 3 presentations to prepare for and two presentations due before the BSR and 4 still need to be done! ‘Don’t panic Mr. Mainwairing, I hear myself say on more than one occasion’. I’m up at the unearthly hour of 5.30 this morning thinking ‘there must be easier ways to earn a living’, but the reality is that in spite of the hours, I love doing what I do and wouldn’t be prising my eyelids open at this time if I didn’t! A car arrives at 6.30 to take me to Manchester for a multi-disciplinary team all day meeting about metrics in RA. That is what are the important things we need to measure in RA to establish and prove that a good service is being delivered and something which will become increasingly important. For example, what percentage of patients are being seen within 4-6 weeks of referral by the GP in a rheumatology unit? Or, what percentage of patients are being given an annual review in line with NICE RA Guidelines? I’m back by 7 pm and then switch my computer on to deal with the emails that have come in during the day.

It’s Sunday 21st and a lovely sunny day which certainly does lift the spirits. I spend a lot of the day working on two submissions for NICE, one in regard to sequence of biologic therapy after failure of a first TNF and the second one in regard to use of Tocilizumab (RoActemra), a new biologic which has had an ‘interim’ no from NICE. Deadlines for both submissions are in the coming week so it’s a job that has to be done. We wrote to all our members to ask them to go to the NICE website and make their views felt about all these negative decisions we keep getting from NICE and thanks to all of you who responded!

Monday is my ‘Carillion’ day. I do one day a week for my husband’s business which is a video conferencing and audio visual services business based in Maidenhead. I oversee the marketing activity and also run the maintenance contracts. Home by 7.30 to peek at my NRAS emails – emails seem to rule our lives don’t they? It would be nice to have an email free day every now and then!

Tuesday 23rd and I’m in the office by 8.30 to start preparing for a presentation to the Department of Health later that morning in London. I’m Joint Chair with consultant nurse Sue Oliver, of something called Rheumatology Futures Project and we are hoping that the Department of Health will fund a public awareness campaign we have been working on to alert people to the early signs and symptoms of inflammatory arthritis and seek early help from their GP. By 2.30 I’m back in the office and nose in computer working on deadline for our annual survey (impact of RA on work in Scotland) which has to be with our designers by Wed. afternoon as we are launching this and our new guide to biologics, which I am also working on, at the BSR. ‘Eeeek, that’s only 3 weeks away’!! “Don’t panic Mr. Mainwairing”!

Wed 24th and I’m in the office by 8.30 again finalizing the NICE submissions which need to be sent today. Later that morning Clare, Tracey and I have a meeting with another charity who want to find out more about how we started our volunteer network which goes well. Lynn and I catch up on important things in between meetings and teleconferences and the afternoon is spent working on the publications which have deadlines this week and talking to Kate who is editing both of them.

Thursday morning and I’m up at 6 to go to Manchester again (!) – have to say that it’s unusual that I am in Manchester twice in one week! Lynn and Lorraine come with me. My meeting is a Steering Group meeting for the Juvenile Biologics Register which is being transferred from Birmingham Children’s Hospital to the Arthritis Research Epidemiology Unit at Manchester University. Whilst I am in my meeting Lynn and Lorraine go and look at a couple of hotels to choose a suitable location for our Workwise Workshop in Manchester (for more details see the website). They are back at the Epidemiology Unit by 1 where we have a quick sandwich and then the staff who run the BSR Biologics Register give us a tour of the unit so we can find out more about the important work they do collecting data on people who are on biologic therapies. I get back in time to go to choir practice. I sing in a local choir as I just love singing, always have. It uses a different part of your brain and is something completely different to what I do during the day and I always feel uplifted by it.

Thank God it’s Friday! Deadline today for our biologics booklet which takes up most of the morning. I have a review at lunch time with the Helpline Team and during the afternoon I find myself looking forward to seeing our daughter tonight. We’re meeting her and some of her friends for a belated birthday dinner. Normally I would be looking forward to a quiet evening with a glass of wine, relaxing in front of the TV, but excited at seeing Anna and hearing all her news. She leads a busy life too and there’s always lots to catch up on!

Best wishes
Ailsa