Psoriatic Arthritis- I need better Rheumatology Team

[Sweetvoice]

Have psoriatic arthritis, diagnosed in 2022 after 10 years of symptoms. Sister also diagnosed. Currently on leflunomide after methotrexate caused severe nausea & GI probs. Current rheumatology team in North London very problematic. Want to transfer to UCLH. Anyone else have experience of team there? Would welcome views on how easy/difficult to contact specialist nurses and to obtain reliable advice in between consultant appointments.

[AgedCrone]

UCLH has a large Rheumatology Dept…..a friend got an appointment there after about a 6 month wait…but things maybe better now

Have you asked your GP for a referral? If you want to be seen on the NHS, that would be the best way.

[Sweetvoice in reply to AgedCrone]

Thanks for your reply. I was referred by GP in Islington via a system which allocated me to the Whittington. I waited 5 months for a first appointment and began treatment. The consultant is fine but it is virtually impossible to contact the advice line to deal with issues as they crop up. My dealings with the rheumatology nurses leave me thinking I have little confidence in them.I have asked GP for a transfer.

[AgedCrone in reply to Sweetvoice]

Unfortunately that is very common everywhere these days…overworked rheumy nurses do their best, but I work on the fact if your rheumy is good…..don’t jump out if the frying pan until you have spoken with someone who is treated at one of the. UCLH clinics.

[Sweetvoice in reply to AgedCrone]

Thanks. Trying to gather as much info as possible before I decide whether to jump.

[Beata0102]

Hi Sweetvoice. I also have psoriatic arthritis and live in north London. I started having joint problems in December 2023 and my GP sent an urgent referral to North Middlesex Hospital and the Rheumatologist saw me after 10 days. I am very satisfied with this hospital, when I call the nurse and leave a message, she always calls me back the next day and they are very helpful with advice. Maybe ask for a referral to NMH.

[Sweetvoice in reply to Beata0102]

Thanks. Will think about everyone's helpful suggestions before I discuss with GP. Great to have contacted with others in same situation.

[Becrosep]

Hiya, I have psoriatic arthritis and I am under the care of Kings Hospital. I find their Nurse helpline to be good, I have used it twice and they’ve called me back the same day both times. You do need to call promptly when the helpline opens at 9:30am though otherwise you get stuck in a long phone queue. There’s also an email feature but they can be slow to reply.

[Sweetvoice in reply to Becrosep]

Thanks for the info. Seems like the service is good.

[Lolabridge]

Do you have an email address for the Patient Helpline? I find I get a speedier response when I ask questions in writing and sometimes a quick phone call from my consultant if I’ve asked a more complex question that a nurse feels less able to answer. Worth giving it a try perhaps 🤔 As you may find you get better help. 🤞🏻

[Sweetvoice in reply to Lolabridge]

Yes, I have tried emailing too but response time is poor or doesn't happen.

[medway-lady]

Bear in mind RA consultants are getting hard to find and even one you perceive to be problematic is better than none. So its not just about others experience but whether they will let you transfer if you're already under a team.

[KittyJ in reply to medway-lady]

I think you’re right m-l, I’ve recently spoken to someone who has seen my consultant and had a totally different experience to that which I have had for all the years I’ve seen her. It’s a difficult decision to transfer because you can’t guarantee you will get a better experience sadly.