Rosa Burden Centre

[BeeYou22]

Hello everyone! My neuro consultant has recently referred me to the Rosa Burden Centre in Bristol and I wondered if anyone has any experience of going there and/or admission? I'm anxious about it as I have a fear of the unknown and also suffer with numerous other health conditions x

[lorettapalmer]

hiya, I went there years ago. They are all very nice and you shouldn’t worry as they look at the bigger picture of your health and not just fnd. Sadly after months of treatment, in outpatients they couldn’t work there magic on me, but they were wonderful and try not to worry xx

[BeeYou22 in reply to lorettapalmer]

Hi Loretta! Thank you for replying, I really appreciate it 🙂 it gives me hope that I have been referred to the best place to help with my myriad of health conditions x

[nurseny in reply to lorettapalmer]

did or do they take american insurance

[Bonzie]

Hi, I was diagnosed with FND in 2020. I was referred by the neurologist at Glos Royal to Rosa Burden as an in-patient for 3 weeks in 2021 and I cannot praise them highly enough. Like you I was nervous but they teach you lots of ways to cope with everyday struggles including mindfulness, pacing yourself to help with fatigue, physio therapy, talking therapies music therapy and CBT. The OTs also help with movement and how to cope with non-epileptic seizures etc.

The best thing was talking to like minded people like yourself. You realise that you are not the only one and you begin to understand why you are like you are! The staff at Rosa Burden were kind and listened to you with empathy and you have a group meeting once a week with the healthcare professionals to discuss any concerns.

Although my FND symptoms have not gone away I can manage my symptoms easier by practicing the things that I was taught at Rosa Burden.

Good Luck Bee and I hope staying at Rosa Burden really helps you.

Best wishes,

Samantha 😃

[BeeYou22 in reply to Bonzie]

Hi Samantha... Thank you so much, you have put my mind at ease and I'll try not to worry although that's easier said than done! I have continuously been described as a 'very complex case' by the neuro doctors and mental health professionals so I hope they're ready for a challenge at the Rosa Burden Centre x

[Bonzie]

Hi Bee,

They are always up for a challenge at Rosa Burden! They had some people staying there with complex needs and by the end of the 3 weeks they had all improved.

You will make friends for life and I am still in touch with some of the group. There were only 6 of us staying at RB at the time and we shared our feelings and symptoms which really helped. Try not to worry and enjoy the help and time away from the stresses of home and everyday life to get the most out of your time at RB.

Please let me know how you get on.

Best wishes,

Samantha x

[210272]

Hi BeeYou22,

When I had a bad case of insomnia connected to the rare condition I have (Mal de Debarquement Syndrome) I had two disastrous consultations there when I thought I was in 'the sleep clinic', safe in the hands of scientists. The consultant lied to me and lied about me (on several counts, in both cases) and her clinical notes were largely inaccurate which caused me a lot of problems back in primary care. She told me I was getting a 'copy' of her clinical notes but it turned out that she'd sent a whole paragraph to my (then) GP which was missing from the 'copy' I got. Apparently this is common practice, which doesn't sit well with me, especially since they gave me two different reasons for why this happens, neither of which made any sense at all.

As a result of these consultations I developed medically induced CPTSD (aka 'a sane response to an insane situation') and was lucky to find a psychotherapist who was willing to treat me for free.

Having said that, I know services there have improved a lot recently and that some people with FND have benefitted from treatment there so if I was in your shoes, I would definitely go. They will have seen many people who have the same concerns that you do (which are entirely normal and natural) and who have multiple conditions. Because they are a multi disciplinary team they will take a wide approach to your situation and help you figure out what works for you, as an individual. If you can, I'd ask a family member or friend to attend with you, at least initially, and if you find their approach doesn't help you, you can always discharge yourself from their care. As far as I know, the consultant I saw no longer works there, so I am more confident that you'll get good service

Stepping out of our comfort zones isn't always easy when we're dealing with multiple conditions but if you go, you will prove to yourself that you can overcome some of the fear. And if you decide against it, that's also an act of bravery.

[BeeYou22 in reply to 210272]

Thank you so much for replying and it fills me with faith when I hear all these first hand great reports about the team at Rosa Burden (except for the one you were unlucky enough to encounter) and even after that you still have good words to say about them. Your last paragraph means so much to me, especially the last line about bravery... I am a warrior, so I have been told 🙂 x

[210272 in reply to BeeYou22]

You're very welcome, BeeYou22 For me, when seeking treatment for a complex condition (or a combination of conditions) trusting our gut instincts is crucial. If you encounter clinicians who don't trust you to know your body/mind best then your body will tell you and it's well worth listening so that you don't waste your time with them. IE 'my body, my choice' does not only apply to reproductive health.

I unsubscribed from the 'warrior mentality' years ago but if it serves you, that's great

It's great that you are going in with an open mind and not seeking a 'fix' since fixes for neurological conditions are few and far between. I wish you every success and many thanks for reaching out - another act of bravery

[BeeYou22 in reply to 210272]

Yes, I'm a big believer in listening to gut instincts and not listening to them is what got me into trouble in the past. The neurologist who I first saw left me in tears and a sweating heap of anxiety but the neuro rehab consultant (Dr Hai) who has referred me to Rosa Burden is an absolute superstar! Other people see me as a warrior woman as I put on that suit of armour and paint on the 'battle wode' but I am actually quite the opposite and have given up 'fighting' and am in acceptance of what's going on... I exist in the 'now' as there's no other place to be. You speak wise words and ones I resonate with so thank you once again for your understanding x

[210272 in reply to BeeYou22]

Ugh, neurologists who leave us in tears are not happy people and I can't understand why they would do that, given that 'I will leave my clients tearful and anxious' isn't in the Hippocratic oath. As for wise words - I couldn't say them to you if you were not ready to hear them and yes, living in the now is where I'm at too

Bottom line; I live in Bristol and would be happy to meet up and then rock up with you when you go to the RB centre if I'm in town at the time and if that would empower you. If you think it would, we'd need to arrange this via the chat feature.

[Rainbowali]

Hi, I go there twice a year for my FND and sleep disorder. They are brilliant and it's a relief when you finally talk to someone who is fully trained in our condition it's like a weight being lifted off your shoulders. Don't worry about anything they are are very assuring and your lucky to get in as I was so think on it as a positive. Good luck xxx

[BeeYou22 in reply to Rainbowali]

Wow! Thank you so much for your message. I also have diagnosed sleep disorders so perhaps they can kill half a dozen birds with one or two stones! 😂 I'm not seeking a 'fix', just an explanation and an understanding x

[Lady4]

Hi there

I haven't any experience think I noticed others have (check other posts). We are waiting neuro appt, can I ask, are you many miles from Bristol?

[BeeYou22 in reply to Lady4]

No worries! It's difficult to get an appointment with a neurologist in the first place but Headway helped me with that which started the ball rolling... now it feels like Raiders of the Lost Ark as it's turned into a boulder! I live in Somerset, so about an hour from Bristol. I hope you get the help you need and please reach out to Headway and your GP and tell them what you need. You know your body best x

[Lady4 in reply to BeeYou22]

GP just chase specialists and nothing happens. Had to get event camera to monitor sleeping and then as disturbing sleep and driving me saft as intermittent turned it off, only for another suspected fall this morning. Going to download sleep app and make them wear watch I bought as it I should get alert if fallen but it really shouldn't be this difficult 😔

[Lady4]

Silly me, all the responses were below.