Since diagnosis, various medical departments keep asking if I have been allocated a clinical nurse yet? I have Polycythaemia vera (PV) and waiting to see the specialist again in December and just wondered if there was a time schedule or regional variation as to when you get one?
I have a specialist who is a bit old school, friendly but what he says and what the letter to the docs say tend to differ somewhat…“he is well” er just been told by reading the letter you sent to the doc I have a cancer, rather than you. This is after him saying I was lucky to be alive given my blood readings 
After a recent issue(possible clot) rang the hospital Monday morning, “he is in clinic and will get him to ring you back when he is done” Now Wednesday and no call back.
So if you have one as a contact point, do they make a difference or should I just carry on and hope he reads his messages or I get past his gatekeepers one day?
PS Hello @Erica if you are first to the punch 
Hi @clickinhistory, hope you’re doing okay! Sorry to hear you haven’t received a call back from your specialist yet. Don’t be afraid to be persistent and try calling/emailing them again as it’s important they’re aware of this.
You may find our webpage here useful. It explains that if you’ve been diagnosed with blood cancer:
- You should be given a named key worker – Someone in your medical team should act as your main point of contact for everything to do with your medical care and wellbeing. This is usually a clinical nurse specialist (CNS). If you haven’t been given a named key worker, don’t be afraid to ask for one.
We know that this can vary between hospitals, and that sometimes people aren’t told who their key worker is. We’d really encourage you to give the haematology department a call and see if you have been allocated a key worker or CNS. These are really good contacts to have, for example if ever you have any concerns or questions between appointments.
If you want to chat this through with us, don’t hesitate to get in touch on 0808 2080 888 or support@bloodcancer.org.uk
Hi @clickinhistory oh, 2nd to the punch here!!
Mind you @Alice_BloodCancerUK has given you a far better response than I could have!!
Isn’t it frustrating when you do not get a call back, I know I wait in peering at the phone and not daring to go to the loo.
Yes, the reality of an appointment and the fantasy of the letter to my GP is flabergasting sometimes.
Look after yourself @clickinhistory
@Alice_BloodCancerUK
Thanks for the response, I will ring the unit again today to ask if I have a named case worker and ask if I will be getting one.
Reading others stories and from experiences elsewhere, I have feeling that, with a certain logic to it, your place in treatment and care is based upon urgency. I know I have the possibility of a “marathon cancer” rather than the “sprint cancers” and I get it. Just be nice if someone in these departments remembered we are all human and have worries about it.
@Erica tut tut, your response time is slipping You might be called in by the forum to evaluate your performance 
It is frustrating as I have legal stuff regarding the divorce, the car crash, the business and yet my mind is on symbiotic creature living inside me and looking back over many years and seeing signs it was there hiding in plain sight but as I have said before, dressed up in another’s clothes.
Taking care of myself is being introduced to Weleda creams by my brother from his experiences with blood issues and his ex partners cancer journey… 
my hands are no longer looking 100 years old lol
Take care of you too
Hello @clickinhistory
I’m sorry to be even later to ‘the party’ than Erica, but I thought I’d just confirm all that Alice and Erica have said in terms of getting a keyworker/CNS or cancer support worker.
Each Hospital is different and has different pathways depending on the size of the Hospital and the amount of staff they have.
Alice is right by saying that all cancer patients, across all cancer types ‘should’ be given a named nurse or keyworker. Some hospitals don’t have specialist nurses within their departments, and instead have a cancer support worker, sometimes they have no medical or nurse training but do have some training around signposting to other services, and of course they can pass on information to the medical teams.
Other hospitals have specific specialist nurses for blood cancer disease types, and they may well run their own clinics and meet with every newly diagnosed patient.
Previously I was a CNS and didn’t specialise in Myeloproliferative neoplasms (MPN) but ran a clinic with my nurse colleagues for stable patients, so we would speak to them regularly. One of us would also meet most newly diagnosed patients to introduce our team and offer support.
For some other blood cancers, the Haematology Doctors would give out a contact card with our phone number on and suggest the patient calls us if they needed support or had questions.
Every department is different, but that doesn’t mean you can’t ask for a CNS or support worker, if you haven’t been introduced or given their contact details. You are right, it would be great if nurses could ring and check up on you, to make sure you were okay. I would always be relieved and pleased if patient called in to let me know how they were and what they needed help/support with, as they were in my thoughts, but I just didn’t have the time to call everyone.
I hope you manage to get a name and a number soon, and make contact with them.
Don’t forget you can always call our support line, I appreciate it’s not the same as getting to know someone within your health team, but we always try to help if we can.
Best wishes, Heidi.
@Heidi_BloodCancerUK
thanks for the good wishes, re the telephone call, it is about returning the call, even if it is to say, I have passed the message on.
As of yet, I have not had a reply and the line is busy every time I ring. I get the pressure and time constraints of the units, especially as they try to catch up post covid.
Well that was interesting, as I was typing a reply to you, finally got through to the ward reception and despite the line dropping a couple of times(Their issues apparently) finally got put through to the team of nurses.
After a chat, she asked if when I was first diagnosed, was I given any information about my type of cancer or any care information? My silence I think gave her what she needed. Seems the nurse was away on holiday and someone had not picked up the slack as it were.
Long discussion about skin care, moisturising and even in winter, using sunscreen, making sure any cuts are cleaned quickly and thoroughly and attended to, ( I am a bloke, outdoors with the camera or working, sunscreen? Cuts? when I notice them perhaps ) Tips on learning to bathe and not to overdo wet wipes ( did point out out was using the natural sensitive ones, bonus points), and shock horror, red wine, real ale and whisky are not part of the couple or so litres fluid I have to drink a day, they are extra ( bonus level round result).
Also discussed the nature of it being a rare and complex cancer Polycythaemia vera (PV) is and it’s habit of hiding when you are getting the various symptoms checked out at various stages and how they as a team have to regularly explain to other nurses that blood cancer patients struggle with looking 90-95% normal. We don’t have lumps and bumps as she put it.
She is now looking to get me back in before mid December to check levels given the car crash injuries and recent symptoms.
Just sat there afterwards and suddenly realised just how tightly I had been holding the stress, though she was impressed I had found your website and Myeloproliferative neoplasms (MPN) by my lonesome.
Think it might be time for a bonus round top up
Wow, what a discussion, it was really worth persisting with the phone call.
I think it is time for a celebration with a big glass of …water!!
I am going to follow my own advice too.
Cheers - Enjoy.!!
Hi @Alice_BloodCancerUK . All of the above that you wrote is in the perfect world. In reality it is very different. It is a postcode lottery.
@Chris1 hi, just as a matter of interest and it might make a new thread informative, where are you based in the UK?
Be interesting to have a map of areas that have and have not got access to these nurses.
Just remembered this thread, especially as I realised on my last visit, I was in the waiting area with about 4 nurses either standing there doing the xmas quiz or looking like birds of prey guarding their territory, but not one asked how I was, did I need anything, apart from the weigh in, yet they knew a group of us were waiting for the blood doc.
Just wondering if anyone else’s clinical nurses are a bit more er interested?