Appt at Guys and St Thomas

[RubyTea]

Hello, I had my first appt at Guys yesterday and it was incredible from the minute we walked into the clinic. Everyone working there was so very kind, nothing too much trouble. Patient care at its absolute best. I had bloods taken and a full 45 minute consultation face to face with a specialist for the first time since diagnoses. Everything so carefully explained and someone who was genuinely interested in my full story. By the time I left I had an appointment for a bone marrow biopsy booked in and a further consultation booked in, plus confirmed continued care with Guys. A huge weight lifted. NHS at its absolute best. I am blessed in that my train line takes me to London Bridge and it was so easy to find.

I would really recommend people who are feeling so desperate with their care to seek a referral to a an MPN specialist. I did it by booking an appointment with my gp and asking them to refer. They didn’t think they could do it but I asked them to try, they did and I had the appointment direct from Guys. So incredible the difference and I’m so grateful. Plus hugely grateful to MPN Voice and this forum for the encouragement to try to change the default care.

wishing you all peaceful days.

[Janbu]

I was so pleased to read about your experience. My appointment is at beginning of November and I can’t wait! It must be such a relief to get the reassurance that you are being well looked after and listened to. Than you.

Jan

[RubyTea in reply to Janbu]

I hope your appointment goes very well too. I was seen by a wonderful consultant. All the follow up calls related to further appointments so quick and everyone so very kind. You will be listened too. It felt like a centre of excellence.

[ainslie]

congratulations and well done in being persistent with getting referred, nothing can replace persistence

[hunter5582]

Your self-advocacy produced the desired results. Glad to hear that you had such a positive outcome. You demonstrate that assertive patients receive higher quality care.

[RubyTea in reply to hunter5582]

Thank you. So worth it, even though it can feel uncomfortable to push, push one must.

[Spanelmad]

Totally agree the treatment you receive at Guys is very good.Looking forward to hearing more of your journey

[RubyTea in reply to Spanelmad]

Thank you. Honestly, I had a little cry, the care and attention, the kindness. I’ve even just had my full blood test results on the My Chart link they invite you to sign up to.

[Spanelmad in reply to RubyTea]

I had my first appointment with them during the hacking, and I still had everything on mychart!There system should be copied throughout the nhs.

[Mostew]

I can imagine how relieved you are to be treated well. So worth the traveling down to London.

The nurses are great to. If you have any small or big concerns before next appointment give them a ring or email.

Last time the nurse rang me back and it was me saying I need to go ,she was so helpful...

[RubyTea in reply to Mostew]

thank you that’s really good to know.

[Nerjalover]

so pleased for you. I am thinking of asking my consultant to refer me to Guys just for a 2nd opinion. I’ve heard such good things about the hospital and its care- but I do get excellent care at Clatterbridge Cancer Centre in Liverpool too- we are lucky!

[Oscarsboy]

So good to know. From the minute you walk in you feel reassured. I too am on the line that stops at london bridge! I have good cover with my local hospital, and they have always been very helpful. I have been offered reviews with Guys and St Thomas's which I have always accepted so have that reassurance and have My Chart with them also. I am so pleased to know that you have at last got all the help etc that you needed. All the best moving forward.

[william-Indo]

Great news.

Just as I learned from this forum, you should prepare your self a note of all of your simptom and the questions to ask for

Request a copy of every lab test report and make your own record.

Wishing you have a pleasent journey.

Cheers

[Buddhability]

Can I just echo your experience Ruby Tea. I feel supremely fortunate to be seen at Guy’s. I have nothing but admiration and appreciation to all at my haematology team there and for the wider NHS staff in its entirety. Wishing you every win, every success on your health journey. 🙏

[Fivecatsandcounting]

I can echo everything you say about Guys and the team there. I have my care there with them now and they are all fantastic. I have complete trust in my consultant (Natalia) and the nurses are amazing. All my results letters and next appointments appear almost immediately after the consultation. Any treatments I need are done there and then and I feel safe. Thank you so much for sharing your experience and I hope that you do really well x

[RubyTea]

It’s just astonishing the difference. I just feel completely different and already so well looked after. Absolutely incredible. Feel very blessed.

[Exeter21]

Brilliant yes I did same 2 years ago & great treatment & interest to sort us out properly 👌Julia

[Plavers]

Hi RubyTea, So pleased you got to Guys, it's amazing the difference in treatment isn't it? I also love the app that keeps all the results and letters in a central place. As you say thanks to this Forum for suggesting getting the proper MPN attention. Best of luck in the future.

[RubyTea in reply to Plavers]

In addition, Guys have coordinated three separate appts for me to have done locally in addition to the BMB and follow up consultation. Quite incredible. I would never have been able to get appts through my gp so for guys to trigger these helpful additions is just fantastic. I’m so grateful.

[Gipsy123]

Hi. I was originally seen at Guys 7 yrs ago in the bad old days when getting hold of blood test results was a nightmare. Sounds as tho MyChart works well at Guys now, ( it didn’t at the RMH Sutton, but thats another story ….). I’m about to move back to Surrey after living in Scotland - so its good to hear recent experiences. I’m also handy for line to London Bridge, from which I gather makes it easier to get to Guys. I’m now a widow so that matters more. Not sure of logistics of becoming a Guys patient again- likely to be moving back from Edinburgh in October. Soon now. I’ll make sure I have enough Rux and Eprex to last me. Wish me luck.

[RubyTea in reply to Gipsy123]

Wishing you lots of luck. Guys is so easy to get to from London Bridge and the clinic very well sign posted from main hospital entrance. It’s off the scale brilliant patient care from my one experience so far. I now have absolute peace of mind that I’m in the very best hands. I had a little cry afterwards because it was such a relief. Going from being a nothing and a tick box where no question could be asked to being listened to quite a revelation. I was also listening to other people being spoken to whilst in the waiting room, everyone was being cared for in the same caring way from every member of staff on that day. You will be in great hands.