Urgent request for assistance

[IlonkaBenjecky]

Hello, I developed severe arthritis and have to visit a Rheumatologist soon. I have been given a referral letter but wasn't recommended a particular Rheumatologist. I'd love any suggestions or opinions on whom I can visit? I was told that Prof. Kidd is good . Any suggestions please. I need to decide very soon. Thank you in advance for your recommendation.

[Deeb1764]

Can you say where you live and are you going private or NHS as this might narrow the field down from any responses. Many thanks

[IlonkaBenjecky in reply to Deeb1764]

I am happy to go anywhere in London but only NHS I mentioned above

[Deeb1764 in reply to IlonkaBenjecky]

Hopefully you will get a response out of my area as mine been good - good luck

[AgedCrone]

Ask your GP practice...they will know where you are likely to get the earliest appointment.

[Hidden]

I don’t live in London. Your right to try and find a good one . GPs just send you to their designated hospital. Try researching on google while your waiting for responses on here . Good luck x

[LoneEra]

I’d recommend Dr Richard Rees. He does his NHS hours mainly at Hammersmith Hospital, I believe: nhs.uk/profiles/consultant/...

He’s very knowledgable and does what needs to be done. (I saw him privately a couple of times in 2019 - but he does have NHS patients).

[IlonkaBenjecky in reply to LoneEra]

Dear Lone is he good and knowledgeable, does he care about you and did he help you?

[LoneEra in reply to IlonkaBenjecky]

Yes, he’s very knowledgeable. And well respected among medical professionals. I only saw him privately a couple of times for a second opinion on something - but he was helpful and pleasant.

[helixhelix]

If the referral letter “to whom it may concern”, ie your GP has not suggested a specific hospital and consultant? Odd.

Anyway, NHS waiting lists vary between a month or two and 18 months! You may want to phone round various hospitals to see what their waiting lists are like. There’s a balance to find between holding out for a recommended consultant and getting seen sooner.

Do also remember that people look for different things in a consultant. I loved my first one, but chatting to people in the waiting room some hated her. She was very brisk, talked extremely fast, and was matter of fact rather than oozing sympathy. Suited me, and I found her no nonsense approach excellent, but might not suit you.

[Neonkittie17 in reply to helixhelix]

My rheumys have always been very straight talking .. Your RA is abysmal and your thyroid is crap! Made me laugh though years ago when a former rheumy said this but she knew she wouldn’t upset me as she was trying to say .. get on a biologic now and your thyroid will behave once your RA does. It did. It was funny though her saying that.

[medway-lady]

I live in South East and to be frank the best one, is the one you get as waiting lists are long or very long so it could be down to who you can see first. I was offered a new consultant recently appointed but preferred to stay with the registrar I've now known for a few years. I'm not eve sure he's still a register anymore but he's nice. As helix has said what suits one may not suit another and usually its the specialist nurses who really make the difference as its once a year with doctor then other appointments with nurse. Good luck in finding one you like though.

[Neonkittie17]

Hope you find a consultant you like the sound of very soon. Lovely photo of you. 💗

[IlonkaBenjecky in reply to Neonkittie17]

Thank you, Are you happy with you doctor?

[Neonkittie17 in reply to IlonkaBenjecky]

GP or rheumatologist? Both are very good and my biologics nurse is excellent. I can’t help you, sorry, on a suitable person as I’m a long way from London. Good luck.

[Lolabridge]

Good luck in your hunt. I'm sorry I'm not in London area so don't know anyone I could recommend.Because waiting times can be many weeks to get an initial appointment in the NHS you may want to choose a consultant who has both private and NHS patients and pay to see him/her privately for the initial appointment. Then you can ask to be transferred to their NHS list.

[HanaleiBa]

Thanks for asking this - I’m still trying to find a good one in the NHS near London, too. I go private as my main rheumie - Dr. Stephanie Barrett. She’s FABULOUS. Totally worth the money if only to monitor you between NHS visits. She now has a partner, Dr. Eleni Nikiphorou. Eleni is with King’s College at the NHS. But, I see her privately with Dr. Barrett sometimes as she’s a medication genius. I haven’t gotten in with her yet at the NHS, not that I’m sure it would go as I want - for the following reasons. The thing that frustrates me (I’m from the US originally and you get to have one rheumie there) is the big hospitals give you a “team.” So, even when having a mini flare, I never saw my actual consultant (Dr. Andrew Cope - a genius, but sadly I’ve only met him once in 2 years for an appt that was 10 min.) The other staff are good, but frankly with a chronic disease (and now I have two - AS and RA) it’s disconcerting to not see the one person and develop a rapport and trust. Also just help me feel safe. Example: it was the private rheumie who discovered through routine scans I have a history of AS. That matters in checking for symptoms or assessing future meds, etc. And she gives me peace of mind and keeps me monitored to STAY in remission, as I had in the US with my one rheumie who got me into remission. If someone on the forum as an NHS place (near London but I’d drive an hour + outside London for it) they go where you can be assigned one person and see one person, I’d love to know. Thanks!

[IlonkaBenjecky in reply to HanaleiBa]

Dear Hanalei I am also frustrated with the NHS service here and that you cannot see the same consultant. I always have to argue and insist to see the same consultant. Every time you have to make an appointment at NHS is a nightmare, especially now at corona virus they just cancel appointment, don't reschedule, don't call you, discharge you and that the GP don't want to refer you again. I am fed up and this causes me so much stress. I come from a place where the NHS is very good, you can specialist quickly, they do proper test, you can have the consultant you want, they don't push you around, you have a proper physiotherapy etc. I started having terrible pain on my both hands and wrists in November, complained to GP, she didn't do anything. I asked for injections in December I was refused. I suffered for nearly 4 months until I managed to arranged by myself injections through some of my existing doctors. I cannot go privately as I don't work now, have a few other health issues and don't know if I will start working soon. Therefore, I have to suffer with the NHS service.

[IlonkaBenjecky in reply to HanaleiBa]

Hello HanaleiBa, As I have not had any test yet and the system here is very slow and I am in a very big pain, the injection helped a bit but not much and I cannot travel abroad as Baby is very ill can you advice me please;

1. what tests are required apart from blood test to find out what is wrong with you

2. how they find out what medication to give as they are very bad for your health

3. how often they check you as the pain is horrible

4. can you stop the development of the arthritis

if you don't mind I will be happy to speak

[Hidden]

I didn’t even know you could get a choice TBH. I’m in London and was sent to my closest hospital.

[IlonkaBenjecky in reply to Hidden]

Who is your treating doctor and are you happy?

[Hidden]

All our hospitals in the immediate area are linked and I started at one close to where I lived at the time. Then when I moved (only a couple miles away) I was asked if I wanted to go elsewhere that was closest to the new house but seen by the same person. I assume that’s what you mean by choice. I can’t imagine I’d be able to pick a random hospital anywhere is south east London

[IlonkaBenjecky in reply to Hidden]

Who is your doctor and are you happy?

[Pitbull2017]

Depo-Medrone has always been my savour over the years when my arthritis has been bad, an injection in the backside has eased things for me the relief can last up to 8 weeks, the significance of the relief can be less damage to the joints, its not a cure but can stop flare ups and the pain that comes with it, there's a limit to how many times you can have this medication but my consultant made it possible for me to go to my GP surgery when I was struggling for the injection which was very reassuring , always best to speak to the experts I'm just telling you what worked for me, I hope things get better for you. Mike.

[KittyJ in reply to Pitbull2017]

Mike I think you’ve replied on the wrong post 😊

[Pitbull2017 in reply to KittyJ]

Kitty Depo-Medrone is a steroid injection, I've always found its given me pain relief quickly when I'm in pain from arthritis, it's a one off injection and the effects can lasts week's, I've mentioned this to other suffers and it's helped them but my experience is they then start to over do things, but its not a cure to get the best from it is to still be cautious, don't lift heavy objects and get plenty of rest, my consultant has arranged for me to be able to phone my GP's surgery when I need it, but for 2 years I've been in remission so I've not required it.Mike

[KittyJ in reply to Pitbull2017]

Yes I know that Mike but Ilonka was asking for recommendations for a consultant rheumatologist 😊

[Pitbull2017 in reply to KittyJ]

I think you'll find IIonka was asking me about Depo-Medrone, unfortunately I replied to you so I now refer IIonka to the that reply 😀

[KittyJ in reply to Pitbull2017]

Yes you did reply to me 😊 not a problem

[IlonkaBenjecky in reply to Pitbull2017]

Dear Mike what is Depo-Medrone, I still didn't have any tests apart from MRI and not very clear yet?

[Hidden]

You should be referred to an ‘Early Arthritis Clinic’ (NHS). You may have a choice, but it will be usually be your nearest (cities can have several Rheumatology clinics). Lots of Rheumatology Outpatients are closed due to Covid.. but yours should be treated as an Emergency, so you will see someone.

They ‘treat to target’ and try and get things under control as quickly as possible.. but it can take a while, as they start on low doses of things and then escalate.

When you first start you may well have to see a few people... don’t worry about that now, see it as a chance to see what different people are like...

Take care. I would also try and sort out some counselling, as this is forever now..