Hi I’m scheduled for an autologous stem cell transplant for myeloma in around 6 weeks, I received an information pack from UCLH, which talks about Ambulatory Care.
It looks fantastic in the sense of not feeling like you are in a hospital, I have a few questions which I know my team will answer but I’d also like a patient perspective on.
If anyone has used Ambulatory Care and any of the specialist hotels at UCLH and you’d be happy to answer a few questions please let me know!
Thanks xx
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Good to hear that you have received some information.
Ambulatory Care isn’t something I’ve experienced personally.
I do know however that it’s very common in large London hospitals.
You will still be well looked after and won’t be moved there until Clinical Team believe you’re ready.
Definitely ask lots of questions of your Clinical team.
Thanks Duncan - yes I’m sure I’ll be well looked after - it looks great. I’m looking for the inside track trip advisor review 
well not actually that flippant, but they are location specific questions I’m hoping someone on here can answer 
Hello @Spangleystar 
I had a chat with one of our Blood Cancer UK nurses about this as she used to work at UCLH. She wanted to flag the UCLH Ambulatory Care patient information page, which she said is helpful and includes FAQs that might address some of your more location-specific questions.
From her nursing perspective, the service is really well received by patients. She highlighted a few things she thinks make a real difference: the opportunity to connect with other patients in the communal areas, more privacy and protected time with loved ones away from the ward, and generally better sleep and mobility when staying in the hotel.
She also wanted to reassure you that you’re still an inpatient throughout - so you’ll have daily assessments from nurses and the medical team with clear escalation in place if you’re feeling unwell, and guaranteed admission dates, which takes away the uncertainty of waiting for a bed on the ward.
I am also going to tag a couple of community members who may be able to offer some insight too, though I’m not sure how active they are on the Forum: @nobbynerd and @Paul (I hope you both don’t mind).
Wishing you all the best for your transplant,
Ceri - Blood Cancer UK Support Services
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Thanks Ceri appreciate the reply, I have a hard copy of this sent in my information pack. I’ve also watched the videos on the UCLH website so I’m not short on info.
I would welcome actual patient experience, it’s very different to a healthcare professional’s opinion. I’d like to hear from some so that I can see if I think it’s right for me, all I’m getting is a one sided view, and it doesn’t feel like a choice at the moment.
I’m not in the same situation as many. I won’t have visitors, let alone someone to support me in this environment, it’s just not possible. Watching the video really emphasised how much they want you to have someone with you to share in the care.
So I was curious from people’s experience if that was unusual (as this could make me feel more isolated when everyone else has people with them). How did they feel walking from one place to the other, I’ve worked by the hospital years ago, I know the pace of those streets. I’ll have just lost my hair - I have no idea how I maybe feeling, I won’t have support and going out on those streets in a weakened condition makes me feel vulnerable.
Reviews are mixed in terms of hygiene and environment, almost everyone had people staying with them- how did they find it?
Obviously I’ve more questions but it doesn’t seem that there’s anyone who can share their patient experience, so I’ll leave this here. Do appreciate you coming back though.
I will chat to my CNS at UCLH about what options I have.
Thanks
Not at all. Happy to help
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Thanks @Ceri_BloodCancerUK and @Paul.
Did you have experience of Ambulatory and Cotton Rooms you could share please?
Thank you
The Cotton Rooms are quite nice. I was there during Covid so couldn’t use the shared common areas which would have been good to meet other patients. The food isn’t very good but there are loads of places around there. The hospital is only a short walk. The nursing team were very kind and call the room to check on you. I lasted about 10 days and was then admitted. The first few days are quite easy then the chemo takes its toll. It wasn’t as bad as I thought it would be though. I was admitted for about 2 weeks then discharged. The food in the hospital is terrible. You won’t feel much like eating but a friend kindly bought me cake and ice cream etc. You will be in a private room with an en-suite and it’s on the 10th floor, so great views! Every day you feel a bit better. I was amazed how my body recovered. If you want to know anything specific, please do.
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Thank you @Paul did you stay on your own or did you have anyone with you? I guess during Covid it would be different again.
Did you go there from day -1? Or were you in hospital initially?
When you say you lasted 10 days and was then admitted - what do you mean by that?
Is that how many days you were in hospital before hand or how many days you were in AC and then were readmitted to hospital? If so please can I ask how the readmission came about? Because that’s another thing I read that you have to pack up and be out of the hotel. I can’t see how you can do that without help?
Lots of other food places is good but if you are too sick or vulnerable and on your own, how can you get food?
I’ve heard people sleep a lot like 18 hours and with side effects like bodily fluids escaping at every opportunity- how did you find the energy to get up, go down onto the streets of NW1 and walk even a short distance to hospital?
I’m sure this is fantastic for people who can have someone stay with them, so please don’t think I’m being negative, it’s just quite a lot to feel vulnerable and alone.
I was alone. Friends were able to meet me outside the hotel whilst I was well enough and I was allowed 1 visitor twice a week once I was admitted.
I did AC for 10 days then I was admitted. I could get my own food the first few days. Maybe pack a few things to take. I didn’t feel much like eating after day 5 or so. You’re fed in AC and once admitted, I drank mostly protein shakes. The hospital has a dietician who arranged for me to have more nutritious food, so you will be looked after.
I wasn’t so ill I couldn’t move. A nurse from AC helped me pack and wheeled me underground from AC to the hospital. I was able to get up to use the loo and to shower. You will probably sleep a lot but that’s good and will help you recover.
I was really anxious about it all but it really wasn’t so bad.
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Underground? Is there a tunnel or some kind of private walkway between the two - you don’t have to go out on the street?
Thanks Paul.
Yes - it’s a bit like a Bond Film! It goes from the McMillan Centre where the AC is, to the main hospital. The nurses are so kind there. It made a huge difference to my wellbeing and feeling supported, even though I didn’t have anyone with me.
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Bond film or bat cave but definitely a relief - not having to go out onto the street helps me a lot psychologically with this!
Thank you 
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