Referral recommendations - Guys, UCLH... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Referral recommendations - Guys, UCLH or John Radcliff

gazaeee
gazaeee

Hi All,

After a bunch of symptoms that have had me going back and forth to my local doctors, the GP has agreed to refer me to the hospital of my choosing. He has asked me for the details to do this but I am not sure if I can request a specific consultant or if it would be to the department only?

I'd love to know the personal experiences of anyone that has been referred for treatment through the NHS to any one of the following relatively local hospitals.

UCLH

Guys & St Thomas

John Radcliff

Be great to know how long you had to wait to be seen, how you felt they treated you, and if you'd recommend them?

44 Replies
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KellyInTexas
KellyInTexasAdministrator

I can’t help you here, but someone more knowledgeable will be along soon I’m sure- with more on point direct knowledge.

I will say I’ve heard that if you go to Guys and st Thomas, you may THINK you are going to be seen by a specific lead or senior ( head) specialist consultant, only to be at the last minute put with a junior/ registrar. ( this is especially true in Hematology.)

Now, not being a UK resident, I’ve not experienced this personally in the UK. I am only allowed to book privately.

We also can have this happen within out university teaching hospitals in the USA. Sometimes it works out very well, sometimes not. But we will know who we will be book in with- but it may not be the person our GP wants us booked in with.

So - let’s see what feed back you get.

gazaeee
gazaeee in reply to KellyInTexas

Thanks Kelly.

That would annoy me if after travelling away from home and waiting months to see someone, I don't get a specialist.

MaryF
MaryFAdministrator in reply to gazaeee

Make sure you phone and email if necessary to check, once you are given an appointment. I am under more than one hospital, but I do use St Thomas' Hospital, currently my appointments are on the phone, and I always get my specialist and always have a reply if I email.

MaryF

gazaeee
gazaeee in reply to MaryF

Thanks Mary. When you got referred did you have to specify a consultant by name or was it just Rhumatology at St Thomas'?

What's been your experience of them?

MaryF
MaryFAdministrator in reply to gazaeee

No, I wanted Prof Hunt as she has looked after me through two of my pregnancies and I got her, I was lucky. MaryF

HollyHeski
HollyHeskiAdministrator

I'm presuming John Radcliffe is nearest? If so I would stick to that, as most hospitals are now only doing telephone consultations or having horrendous delays in appointments.

I am under St Thomas's, have been for 15 years, I live over 200 miles away, but prior to covid would go up once a year, rest of time unless there is a problem would be telephone call. Again rarely see my consultant, but have no issue with this as they work as a team. Any queries raised I always get a reply from the consultant. I have heard new patients are not having such a good time with the systems at Guys but I'm sure you will get others advice here?

gazaeee
gazaeee in reply to HollyHeski

If other members of the team refer back to the specialists and follow good guidelines geared to treating APS patients then that's probably good enough....especially if you can also email the consultants as well. Did you request a particular Dr or just the department?

I'm sort of equidistant from John Radcliffe and the London Hospitals.

HollyHeski
HollyHeskiAdministrator in reply to gazaeee

Ì requested Prof Hunt, but this was nearly 20 years ago, via my local haematologist, she had written a report in a magazine, which I had printed, took to my GP which is how I heard about APS, he sent me to local haematologist, after determining I was triple positive, was then sent to St Thomas. This was 7 years after my 1st stroke, so was a long road. Been under Prof Hunt since.

I am not sure but I dont think she takes on new patients now??

gazaeee
gazaeee in reply to HollyHeski

I'm getting the sens that she's more Fertility related?

HollyHeski
HollyHeskiAdministrator in reply to gazaeee

Not in my case, I was in my late 30s when I first saw her, she has overseen all my problems since, preferring me to see other clinicians at St Thomas, like rhemeatogolist for diagnosis of sjogrens, gastro dept for digestion,She has been very much up front internationally with thrombosis and Covid research.

Greenmil3
Greenmil3 in reply to HollyHeski

I have been transferred from Prof D’Cruz to Prof Hunt so she was happy to take me on 3 months ago next appointment Tuesday.

I’ve had great treatment at the complex coagulation unit at UCLH, led by Prof Hannah Cohen. No symptoms that have needed rheumatologist input, but she has pulled in gyne because of my age/menopause management.

Part of the London/Oxford equation is probably transport. I don’t drive, so London works best (and have found traveling fine during COVID given very low loading on tube/trains).

gazaeee
gazaeee in reply to GillyA

I've had a couple of thumbs up for Hannah Cohen but is she not more geared towards fertility related APS

KellyInTexas
KellyInTexasAdministrator in reply to gazaeee

No, not necessarily. She’s my hematologist and I’m well past those days!

Guys and St Thom's are discharging non London patients as they are in crisis mode at the moment, so maybe best to ask for another location? I was referred there, then instead of having my face to face appointment last month, had a phone consult, then was discharged back to my GP.

gazaeee
gazaeee in reply to chrissybell

A couple of said this so maybe its best I don't request this place :/

GillyA
GillyA in reply to gazaeee

Hi, hadn’t heard this myself, and definitely not my issue. She has led some of the major studies into anticoagulants.

My situation is pretty complicated as I work in Africa a lot of the time. I found she gave me close to an hour of her time to work through the diagnosis and it’s implications for my career, and how to manage the warfarin remotely. She also gave the Anticoag clinic specific instructions on managing my care, not just a target.

I can’t comment on how she’d manage rheumatological symptoms, but she worked closely with the neurological team who referred me.

GillyA
GillyA in reply to GillyA

Not sure why this ended up here, it’s in reference to the comment about Prof Cohen poss specialising in fertility

I requested Prof. Hunt at st Thomas's and waited about 6 weeks to be seen, always found her to be great and very helpful, never had any problems speaking to her either in person or on the phone.

gazaeee
gazaeee in reply to Tucson

When was the last time you spoke or saw her? Are you actually from London?

Tucson
Tucson in reply to gazaeee

I'm in Essex and saw her in September. She's very invested in my case and has bent over backwards to help me. I have my next appointment in January and have had telephone chats between the two.

Greenmil3
Greenmil3 in reply to Tucson

Could I ask what your particular case is as she is interested in my Cerebral APS. And seeing her Tuesday

Tucson
Tucson in reply to Greenmil3

Hi I too have what they refer to as cerebral Aps as I've had 3 strokes, one when I had an Inr of 4 on warfarin. Also developed a massive internal bleed while on warfarin with an Inr of 4 and nearly died. Since then I've elected to stay on Clexane and have had no issues at all. I do have disintegrating joints though which have put me in a wheelchair supposedly severe arthritis which quite bizarrely happened overnight. I went from being very fit to pretty much unable to move. So waiting for two knee replacements which have been postponed due to my bleed and covid etc. I also have a useless right arm again due to severe arthritis in fingers, wrist, elbow and shoulder. My left arm is starting to go the same way. Recently had an Mri on my left hip because I'm quite concerned that needs replacing now too. Prof Hunt has gone out of her way to refer me to top specialists for my knees etc. and chases them up to check on progress etc. Sadly thanks to covid there has been very little progress. Some of which is my reluctance to be in hospital in the current climate. My last visit to Guys orthopaedic clinic did nothing to reassure me quite honestly.

gazaeee
gazaeee in reply to Tucson

At what age where you diagnosed and when did symptoms first start to kick off indicating APS?

Tucson
Tucson in reply to gazaeee

I was diagnosed about a year after my first stroke which came out of the blue, until then I had no symptoms at all. In fact I was a fitness freak, eating healthily and exercising a lot. Had the first stroke and was given the old change your lifestyle nonsense. Nothing I could have changed to improve anything. A young Hepatologist run auto immune tests much to his bosses disgust and came up with Aps. Thankfully or it would have dragged on for years. Was referred to local Rheumatologist who was worse than useless kept saying I had slight wear to my knee and ignored everything else, dismissed the Aps as of no importance. Spoke to my GP and asked for referral to prof. Hunt. Was seen within 6 weeks and taken seriously even though my only symptoms at that time was my stroke and slight knee trouble. I was 58 I think. I've never suffered with headaches, migraines etc or any symptoms most on here seem to have. Mine is silently trying to bump me off.

gazaeee
gazaeee in reply to Tucson

Attitude from medics not familiar with APS often seems very dismissive! I wonder if they'd treat their loved ones the same way.

Hiya, I live in Warwickshire and was referred to Guys hospital. (Haematology) now, when I had to have more consultants on board I tell my dr who I’d prefer to see and have had an appointment through for the said consultant. At the first appointment I have always seen the main man/woman, then at follow up appointments it’s a member of their team, but the registrar often leaves the room to discuss with consultant what to do next. Hope this makes sense. At present, as many have said, they are telephone consultations, which saves the travelling to London. So I’d say do your research and see which consultant you would like to see and get gp to write for appointment.

KellyInTexas
KellyInTexasAdministrator in reply to Ageingfemale

Perfect! ( hope you are well.)

Hiya. At the beginning of the year I was being tested for intistitial lung disease. I had various tests at St Mary’s hospital in London and had an appointment for results in April. Of course this was cancelled, so was appointment in August and November. I finally had a telephone consultation on this Monday. I have got a disease, caused by an autoimmune disease. Hmmm. So treatment is to be arranged. They are going to liaise with my local hospital and GP. Seems it will be steroids, immunosuppressants and oxygen. The consultant said it’s really the worst time to start this treatment. I said we are shielding anyway (hubby is practically bed bound with MS) So the fun and games are carrying on🥴 I don’t know how long this will all take. Oh by the way I was told in July I am now type 2 diabetic. Hey but otherwise I’m plodding along. 👍we are lucky really, we don’t have to get up early and go out to work in the colder weather. We have Carers in 4 times a day so see people every day and if we feel down they soon have us laughing and joking!! 🤣

gazaeee
gazaeee in reply to Ageingfemale

I'm a little confused now as to what department I should be referred. Some seem to be saying hematology others rheumatology.

Reason for my wanting to see someone that is a specialist is for them to take a more holistic approach when I raise symptoms that more than likely are related to APS. Currently my general doctor treats every complaint like someone that doesn't have APS. Example, foot joint very painful. She asked me to try more supportive shoes and do some stretches for a month...then sent me for an X-ray to check if I have any bone fractures...which wasted another month...then an Ultra Sound..1 more monh and now I'm waiting for an MRI on it. This is their approach to dealing with e for every single symptom.

My hope is that a specialist will just understand better if its APS and offer me better treatment right away.

At my local hospital I am due to see a Hematologist in 6 weeks time to review the latest bloods taken but he isn't a specialist and he doesn't oversee my care.

Not sure what to do given the wild and weird symptoms I get

HollyHeski
HollyHeskiAdministrator in reply to gazaeee

Your last comment regarding your foot sent a trigger to my brain - I'm glad they are investigating, if it rules things out then that's good, yes you need to see a specialist that looks at the whole you.

ncbi.nlm.nih.gov/pmc/articl...

GillyA
GillyA in reply to gazaeee

I think the issue is that APS is both an autoimmune disease (normally treated by a rheumatologist) and a blood disorder (normally treated by a haematologist). So expert consultants can come from either background, although both Prof Hunt and Prof Cohen are haematologists, there are also rheumatologists who can lead. I ended up with Prof Cohen because the initial presentation was a clot. I’m very happy with the support she has given me both in anticoag and in wider support.

gazaeee
gazaeee in reply to GillyA

That's as clear as an explanation as I think I'm ever going to get.

So in light of me wanting to see someone that is likely to want to connect dots to actually help me with a bunch of symptoms that I am sure are related to APS, is it fair to say it won't matter what the experts background?

I have just been dropped by Guys because they are not coping with local patients and no longer taking patients from outside the region !

Which of the three hospitals are you nearest to ?

Reading is on my doorstep but they have no specialists and they offer a pretty poor standard of care to folk like us. I hear John radcliffe Oxford is better facilitated but I don't know I'm in the dark on whether they're any better at dealing with APS etc

APS is an autoimmun illness and also a blooddisorder and as Gilly says autoimmun illnesses are usually treated by a Rheumatologist and blooddisorders treated by a Hematologist.

As APS also is a Neurologic illness (said by prof Hughes himself) there are often Neurologists treating us but they do not always get that APS is a blooddisorder first of all and that we need Anticoagulation. There are also people with different symptoms of APS as it may attack every part of the body.

Then the problem is that not all Rheumatologists know autoimmun illnesses like APS and the same with the Hematologists. Very few know APS. We need those few Doctors who do and that is often a fight to get to them. Especially these days it may be very difficult. But keep trying.

I also have problems with my feet. Numbness etc. Neurologic. Not much to do but to get special shoes etc. I have got referrals from both my Rheumatolog and Hematolog.

gazaeee
gazaeee in reply to Lure2

Thanks Lure. I never knew it is also considered a Neurologic illness. Any ideas why?

Lure2
Lure2 in reply to gazaeee

Because of all the neurological symptoms. The brain is the main target usually, TIA, Stroke, Amaurosis Fugax, memory issues, migraine, double vision, dizziness etc etc.

Most of those symptoms disapear with anticoagulation as APS means too thick blood.

gazaeee
gazaeee in reply to Lure2

Since it really comes down to the consultant having the right specialism, you really need to see that consultant. It seems when we ask to get referred, it is to a department rather than the consultant. So if you don't get to see that consultant it is all for nothing? Unless I understood wrong.

Lure2
Lure2 in reply to gazaeee

I tried to explain above how I see the problem. I am from Stockholm and I am not a Doctor but I have read a lot of APS sufferers histories at this site during the years and also read several of prof Hughes books and been very interested in this illness.

We are unique with different symptoms from different parts of our body and perhaps some interested GPs who have learnt from patients and read about APS can be able to help.

It is impossible to say, but I suggest you look for a Specialist of autoimmun illnesses who works with people like you and me every day.

Lure2
Lure2 in reply to Lure2

Of course I do not know the English hospitals and departments.

I also was unceremoniously dumped by Guys!

My experience:

1. Turned up for annual appointment last February only to be told had been cancelled, I had travelled from Somerset! Next available appointment 2/10/20

2. Due to Covid called Guys on 7/9/20 to see what procedure in place for appointment, told it had been cancelled & would receive txt with new appointment. Asked them to ring or write as we live in country & have no signal.

3. Called again on 29/9/20 told I'd had telephone appointment on 23/9/20 I was here all day, no calls! I then received copy of letter to my GP from a doctor I've never seen or spoken to saying I'd missed my appointment & that they didn't think my sero-negative Sjogrens was causing my Pulmonary Fibrosis & as they couldn't offer anymore treatment they were discharging me!

4. Wrote to Prof. D'Cruz & copied in Chief Executive. I pointed out that as I hadn't been seen for 20 months I failed to see how they would know what medication I am on. I also mentioned how sad it is that the once ground breaking centre which became benchmark for others around the world has slid down the slippery slope & now patients are merely numbers to be tossed in the air & randomly discarded. Neither has had the courtesy to reply!

I am very fortunate that I have some fabulous consultants locally. My Respiratory Specialist was not amused at my treatment by Guy's but at least I won't have stress of ever going to London when I can hardly breathe most of the time.

Rant or what? Maybe not bother with Guy's if you can go somewhere else is my advice.

Take care all xx

gazaeee
gazaeee in reply to SueLovett

That is pretty lame of them really. Really should have done more for you. I hear that university hospitals tend to be better because they are big on research. There are no specialists at my local hospital but UCLH and JR Oxford are around 1.5hrs and 1hrs drive respectively.

Hi I was under the care of Prof D’Cruz back in 2007. Lovely person but I imagine you’d have a very long waiting time to see him now. I had to spend 5 days in St. Thomas’ having various tests as I also have multiple sclerosis.

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