referral✅

[Janbu]

Thanks to all who responded to my post about getting a referral to Guys Hospital. The appointment came today for early November . I’m thrilled and surprised that it turned out to be easy. The haematologist wrote the referral , sending me a copy , within a few days of my request. I don’t feel quite so brazen now but feel relieved that I may have more control over future events. Thank you.

[hunter5582]

Good news! You are demonstrating that advocating for yourself works.

[Mishie14]

Go Girl!!!!! Big step in the right direction. So very glad you pursued this opportunity for MPN expert care.

[Spanelmad]

Great news, be prepared they will redo all the previous testing so they have a complete record.Plus my local Team are a little frosty but it has bucked their ideas up

[lizzziep in reply to Spanelmad]

Same here, being in contact with Guys has kept my local team on their toes! I felt as though I shouldn’t ask for other opinions but this group made me realise we HAVE to keep asking questions.

[Plavers]

Brilliant! Lots of tests to come - if I may suggest make a list of everything you want to ask so that you have it in writing. The great thing Guys do is to keep you informed off all your blood results and what has been reported back to your Haematologist and your GP. Enjoy

[Lyndjs]

Great news 🙂 please keep us updated xx

[nellietheelephamt]

So, do pleased for you. I am just starting this journey over again and know I will also need to be pushy.

[RubyTea]

Great news. I’m seeing Guys very soon after asking my GP to refer me. I’m so glad I did. My last blood results from hospital haematologist were supposed to be face to face. I even checked whilst having my blood taken that I would see someone the following week as I wanted to discuss signs and they have not spoken to me for nearly a year as they kept using wrong contact number or ringing outside appointed times. Two days after bloods taken haematologist rang me to say he had results, he said there had been a mistake he doesn’t do face to face he then proceeded to tell me my results on the phone despite me saying I was on a train . I wanted to explain signs I have been noticing he said only wanted me to be in touch if I had a clot. I asked how I might identify if I was clotting. He responded in haste I just need to be in touch if clotting and that they would take bloods again in 6 months. He did not ask if I was feeling ok. Then I told him I have referral to Guys. He wanted to know immediately why and how I had done that, so I told him that I wanted to talk to someone about signs I am noticing and that I was actively following MPN voice and reading. Three weeks letter he copies me into a letter he has sent to my gp which is completely different to the phone call we had. Sigh. So glad I have opportunity now to see someone from the Guys team. I wish you all the very best with your appointment. I think it is fabulous that Guys take referrals. Kindest to you

[Sivasi]

Congratulations on your referral! Your hospital group can't be the same as mine though. I asked my haemo consultant for a referral to Claire Harrison at Guys for a second opinion, but I received a referral to someone in- house that I'd never heard of. That was nearly 4 months ago and I still haven't heard from him. When challenged, she then told me that they can't refer patients out of the group and it was up to me to get a referral to Guys. So I asked my GP to refer me, and I've now got an appointment. But it seems that your consultant was quite prepared to refer you and I wonder if my haematologist is just being unreasonable?

[Mostew in reply to Sivasi]

My GP did the referral

[Pogm]

Always speak up! Best of luck and continue to realize that your voice is never small when it comes to your health.

[Mostew]

Good news . I am so impressed with how quick I was seen toThe Nurses are available and lovely if you have any concerns after appointment. (Or before)