Referral outside area

[Madmusiclover]

Hello warriors. I won’t bore you with why I am looking at being referred outside area but nothing current on here and I am struggling to search for suitable recommendations/reviews on the web. As my own department have just agreed with me that their service is appalling I wondered if any of you would recommend your area. Prepared to travel. South Warwickshire rheumy website (a website; imagine!) looks promising. Anyway. It can’t be any worse than it is. Drug change overs have been particularly drawn out. Waited 7 months for one change over to an ineffective drug, now 6 months into another changeover.

[Thingybob]

I am with South Warwicks . Stayed with them when we moved out of area in 2020. I can only speak as I find ... I cant fault them , helpline is good, i have found nurses and consultants listen and advise. All the best

[helenlw7]

I live in South Birmingham, and my rheumatologist at the Queen Elizabeth Hospital is brilliant. She sees me every 3 months, more frequently if I feel I need to be seen. It’s also fairly easy to contact a specialist rheumatology nurse.

[Deeb1764]

just moved to Scunthorpe/ Grimsby team and so far super efficient once I got seen! Even booked me for my 3 month review yesterday by phone as started new medication and they were all over it.

[Madmusiclover in reply to Deeb1764]

Left a message this morning. They’ve already called me back!

[Deeb1764 in reply to Madmusiclover]

Very efficient team I find fingers x

[Madmusiclover]

You guys are making me smile. Not sure why I have waited so long before seeing the light!

[Deeb1764 in reply to Madmusiclover]

The old saying a change is as good as a rest comes to mind 🥰

[ruth_p]

I live in Essex and my rheumatologist is in Oxford.

[Madmusiclover in reply to ruth_p]

Is Oxford rheumatology good? Had a bad experience at JR for something else’s but can travel there if good.

[ruth_p]

It used to be but I haven’t seen anyone face to face since COVID and my last “appointment” involved me filling in an online form and they used it as the basis for my clinic letter to the GP. But Colchester is even worse so I persevere. I have been in remission for 9 years so I guess they are prioritising new patients and those that are not in remission.

[Kags1068]

I live in Warwickshire, and my rheumatology dept is at Coventry (UHCW). I've been under their care since I was 14, so 42 years now. I've only ever had 3 rheumatologist in that time, and all lovely. I believe they have a website, and that the various consultants are listed - some with details about their particular special interests. I know from my current consultant that they work quite collaboratively and have meetings most weeks to discuss and get consensus on difficult cases. The day unit staff have always been very nice too.

Hope you find somewhere that suits you.😊

[Madmusiclover in reply to Kags1068]

Ah that’s great. They are my next nearest area really. Do you get appts, regular checks? Have you ever had to change over drug? Thank you for your time.

[Kags1068 in reply to Madmusiclover]

Hi againYes, I was with my previous consultant there for 20 years until he retired in June 20. He was lovely. I used to see him about every 2-4 months (sooner if necessary). If I was having a real problem and rang his secretary, he would always phone me himself within a day or so.

I requested a switch to my current consultant when my previous one retired. He initially phoned me in August 20, so 2 months after I was switched to him. I then had a f2f a few weeks later. I'm told my disease is severe and complicated, so I do get regular contact and always have - thankfully. In January 2021, I fell and broke my thigh bone (in between a hip and knee replacement). I phoned his secretary from hospital to just pass on the info, but consultant rang me that evening in hospital. I was most impressed. I've had ongoing complications from this fracture, so I've had very regular contact. I would say that since Jan 21 I've had more than 60 appts with him (sounds ridiculous, I know). Mostly phone or video (I was housebound), but f2f too. I feel he has very much gone above and beyond in many ways, and I'm incredibly grateful.

I have changed drugs as well. From humira to RTX in Jan 23 which he pushed through promptly. I'm not allowed to have any more RTX for time being due to another bizarre complication, but he switched me to Filogitinib. The decision took ages, but that was due to surgeon's not making a decision. Once decided, he got it through as quick as he could. He also agreed to let me skip the "medication counselling" appt you're meant to have with a nurse as I was really struggling, and didn't want to waste time waiting for something I felt was pointless. With this drug, I get 3 month's worth at a time. I've heard good reports about other consultants too. Hope this is helpful.😊

[Madmusiclover in reply to Kags1068]

Very!! What is your current consultant called? I might do what Callmesunny suggests and arrange to see him/her privately.

[Kags1068 in reply to Madmusiclover]

Hope you don't mind, I've sent you a quick PM

[CallMeSunny]

I also am with South Warwickshire Hospital and concur with Thingybob’s comments. I was originally diagnosed in 2019, was living in Warks at that time and remained with my Consultant and Rheumy team when I moved to Glos as I felt they were too good to risk losing. Regarding your questions, I do get regular appointments and checks both face to face and in person. I’m usually seen in Stratford upon Avon as it’s closer to me than Warwick. I have had to change drugs a few times: there’s always a discussion between myself and the team, so I feel involved in my care. If I leave a message for the Team it’s usually answered on the same day or if they’re busy, the next; there's an email address we can contact too if necessary. Whichever hospital/area you decide upon, do make sure you won’t be put on the waiting list to see a Consultant as they are usually several months long! Best of luck, Sue.

[Madmusiclover in reply to CallMeSunny]

Yup I’m going to go with them. The occasional day trip to Stratford or Warwick will be most welcome. Thank you so much for your time and encouragement. Frankly it couldn’t be any worse.

[CallMeSunny]

I’m so sorry you’re having such a dreadful experience. Let us know how you get on with your new Rheumy Team!

[Madmusiclover in reply to CallMeSunny]

Thank you. No quick route though. GP appt to organise is end of November. Unless my knee replacement op comes through in which case I’ll ask for it before.

[CallMeSunny]

Many people seem to book a private appointment first with their preferred consultant (checking first that said Consultant also sees NHS patients) in order to “introduce themselves”, so to speak!

[Madmusiclover in reply to CallMeSunny]

Ooh. Good idea! I’ll do that. When you tell me name of yours! 😂

[CallMeSunny]

Dr. Bhavista Vasta

[Madmusiclover in reply to CallMeSunny]

Thank you.

[CallMeSunny in reply to Madmusiclover]

👌😘

[Thingybob]

Just as a follow on . I rang the south warwicks helpline at 10.30 am and they got back to me at 4 pm the same day . The nurses are always lovely . Hope this is helpful 🙂

[Madmusiclover in reply to Thingybob]

Thank you. I phoned to ask if I would be funded for my drug. Responsive phone pick ups and call back next day (she had to check). I’m not even a patient!

[Thingybob in reply to Madmusiclover]

Do you have a specific consultant in mind ?