I hope you are all keeping sane and safe at this time. My question is di you have someone at your hospital that you can speak to or emulate etc inbetween appointments for any advice or questions that you may have?
I am at hospital this afternoon and it is something I want to bring up. I was give the email address of a McMillan nurse quite a few years ago as a contact but to be really honest she has very little empathy and understanding of the emotional impact of MPN's and frankly is awful at returning emails.
I contacted her over a week ago re my appointment today, I think I am meant to be starting interferon today and just wanted to know as it's a big thing and with current restrictions I cant take anyone with me which I normally do.
The Dr told me we should start when I ladt saw her which was Christmas eve but said she wouldn't start it that day because its not nice and would spoil my christmas, I was meant to start in march but appointment cancelled because of covid and I only know that I'm in clinic today because I spotted an appointment letter on patient knows best website, I haven't had any communication from the hospital. I guess I just feel let down and would like to know how this compares to what is in place for you guys in different settings. Thanks for reading. Andrea x
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. I live in Norwich U.K. , and hospital has great support nurses . Thank goodness . As sometimes I feel like letting off steam after seeing useless not empathetic consultants .
Here at Epsom and St. Helier Surrey, England we have specialist support nurses in Haematology who we can phone or email . They are my first point of contact especially now . They have sorted out prescriptions when they have run out in advance of an appointment, blood tests now appointments are on the phone , checked medication interactions when I put on medication for a separate condition. Also sent me information to pass to GP when I wasnt put on the shielding list initially. I assumed this was the norm as the same applies for my husband with multiple heart conditions.
What you are describing is an unacceptable level of care from any provider, so do not accept it. Insist on getting a response and persist until you get one. Of course, be polite and engaging, but never - ever surrender your right to the quality of care you deserve. Assertive patients receive higher quality care. Passive patterns do not.
Hope you get the the answers and care you deserve ASAP.
I got given a number for a woman to call who is a Macmillan nurse but i rang once before I had my BMB and was still in diagnosis phase and it took her a few days to get back to me and when she did it felt really rushed. I have recently started hydroxy and have my next appointment with haematologist tomorrow and since starting the treatment in March I feel like I really need support but I know it'll just be rushed if call this woman for help :/ I feel your pain
Hi Andrea I had a similar problem recently when I needed vital advice on some medication I'd been prescribed and was unable to make any contact. In the end I asked to speak to my consultant's secretary. She was extremely helpful and passed a message on to my Consultant who gave me a call back.
Andrea I’m in Ireland so can’t offer any practical advice re:Macmillan. What I can say for sure is that poor communication due to either staff who are jaded and dispassionate in their job or inadequate systems that leave patients to fall through the cracks happens in every country - and the only way to combat that is to use your voice and INSIST on better treatment.
From experience I can guarantee you that the loudest & most persistent patients are the ones who get the most attention.
What that looks like in practical terms is making a phone call to your consultant’s secretary, tell them that you need 15-20 minutes of their time and attention to resolve a problem that is seriously impacting your wellbeing and are willing to phone back at a more convenient time when you can have their full attention if needs be. Be brutally honest, say your care is inadequate, insist on a different McMillan nurse, if you have urgent questions insist on a call back from your haematologist.
I know that can feel uncomfortable and difficult- you have to remember that you are the only person in the world who can truly advocate for your needs, you can’t let yourself down! That nurse gets paid regardless of the standard of care she offers, you’re not a burden, you’re a customer of the service being funded by your tax money.
At the end of the day doctors, nurses & secretaries (no matter how kind or brilliant) finish their shift and go home - you’re the one who has to live with your condition and associated stress & worry 24/7. You absolutely don’t have to live with unanswered questions. Who cares if you get a reputation for being a pain in the backside 🤷🏼♀️ Fight for the treatment you deserve, it’ll be worth it xx
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