Response from Consultant regarding upcoming check up

[jillydabrat]

I wrote a post last week regarding my concerns about my upcoming haematology appointment. I couldn't get past the secretary so I decided to write and private and confidential marked letter to the consultant herself.

I argued that, as an immunosupressed patient I felt that I was going to be put in unnecessary risk having to wait in a hot, overcrowded waiting room just for blood results. The secretary said that the consultant did not do telephone consultations, I then asked the secretary if the consultant had had to deal with a pandemic before?

Anyway, I received a telephone call first thing to say that I can go to my GP practice to have my blood taken (I can stand outside the practice and see my name come up on the screen), then a couple of days later I can phone haematology to get the results.

I am much happier now that I do not have to sit in that waiting room. I don't care if people think I am panicking, I am going to do whatever I can to keep me and my family safe.

[Applesnpears]

This is not panicking, just a sensible precaution. Well done for shaking up the system.

We might find that sensible changes made in the light of Covid-19 become the new norm.

[Inca]

Well done Jilly,things need shaking up ,esp medical secretary's!!! Sally

[piggie50]

Well done Jilly, I’ve been on telephone consultations with my Heam since June last year. It works very well and if I have a question in between times I call my CNS and either she or the heam call me back. I’m on monthly consults at the moment due to taking methotrexate in addition to Hydroxy and I certainly wouldn’t want to hang around the hospital for 2 hours every month,

Judy x

[jillydabrat in reply to piggie50]

Hi Judy, sometimes trying to speak to your consultant is like trying to climb over barbed wire. Hope you are looking after yourself my lovely xx

[piggie50 in reply to jillydabrat]

I’m doing ok thanks Jilly. x

[hunter5582]

Sounds like a very sensible plan. My mantra is that assertive patients receive higher quality care - passive patients do not. Good for you for advocating for what is in your best interests.

[jillydabrat in reply to hunter5582]

Thanks Hunter, I was trying to remember who it was who said that so I could pass it on to Fran. Hope all is well my friend

[hunter5582 in reply to jillydabrat]

All is pretty good here. Going to see tj3 docs later this week about the b9ne tumor.

[jillydabrat in reply to hunter5582]

I had no idea you had a bone tumor m8. Wishing you well and hope you get some good news. Let us know how you get on won't you.

[hunter5582 in reply to jillydabrat]

Will do. Need to take care of this, though it is probably benign. Likely an ossifying periosteal neurofibroma. Related to another medical condition, Neurofibromatosis type 1. Would just monitor it but it is affecting my teeth. I like my teeth to stay where they belong! Will let you know how it goes.

[hunter5582 in reply to hunter5582]

Gizmo acting up 😖. Will see the docs this week about the bone tumor on my jaw. Having to battle the system re. Approval for another CT, but so it goes. Will tilt any windmills as needed.

[azaelea]

Well done Jill! I've just been on the point of writing to my Haematologist to ask if I can arrange something similar. I've had my blood taken at my GP's for the last few Haemo appointments and have mine booked at GP's for next Wed 18th.,appointment next morning at J.C's (hopefully by phone!) I didn't bother ringing reception after what you came up against. I don't think you're panicking, we just have to take all the precautions we can to avoid being infected! Take care. ATB Fran

[jillydabrat in reply to azaelea]

Thanks Fran, packed waiting rooms are a no no as far as I am concerned. I think if more people ask for telephone results because of their concerns then maybe more people will listen. Take care my lovely xx

[mhos61]

Perfect!

[Swede]

Don't worry what other people are saying. They don't know how you feel! It is your right to be worried and take care of yourself. Keep on doing so!

[Stevesmum42]

Totally understand Jilly. I would have thought it’s the safest thing at the moment to have a phone consultation . You do what you feel is right for you and of course others around you,

Keep well.

Kind regards Sandy x

[Wyebird]

Really really glad you are happy with the result.

[JojoWonder]

Good for you. Perfectly sensible and I’m glad you found a solution to what will be an issue for many.

Stay well x

[katiewalsh]

Good for you to be assertive. Some people refuse to think outside the box. And what an excellent way to get through to your consultant. Katie

[Sanga]

Hi.

I’ve had PV for 4 years and am on aspirin only.

I’m glad you got what you needed and sad it had to be a battle for you COVID19 or not.

I’m interested how different haematologist work. I’ve been on alternate telephone consultants and f2f visits for 18months and can call in between to talk to specialist nurse or email my consultant separately. We have worked this out together.

As for blood tests : I ask for extra blood tests when I need them ie before I fly. I also can have my bloods taken at my GP surgery or phlebotomy unit locally before my visit.

If I require a venesection then I Call up the nurse she speaks to the consultant and she and I arrange what and when.

I’m sharing this by way of sharing that flexibility and making this process easier is important for us all.

I’m not immunosuppressant so I can only imagine other people’s worries.

We need to take care of ourselves in a way that makes living with MPNs as easy as possible as we have to live many years with it and maintaining positivity is imperative.

Sanga

[heathermc]

I'm at JC on Thursday..need some medication as well.. I'm.not too worried will get my bloods taken then not sit around too long . I'm taking plastic gloves and will be careful better this week. My Drs is a nightmare.. waiting room is always full.. don't blame you.

No cases yet in the area but will keep ahead just in case.

[Sweetlucy]

I had to travel to central London yesterday to get my blood test at University college hospital. It involved travelling by tube. Today, I'm not feeling good so self isolating. I can't understand why it couldn't be done at my GP surgery.

[jillydabrat in reply to Sweetlucy]

I strongly urge you to do what I did and that is write to your consultant with your concerns. Put PRIVATE AND CONFIDENTIAL on the envelope so that it bypasses the secretary. There is no reason why people should be put at risk when it is so much safer at the moment to have it done at your GP practice. I say that because I went today to have my bloods done and there was only 2 people in the whole practice. Some people's GP practices are just as bad as the hospital but, like yourself, having the added worry of using the tube is something to factor in to your decision.

[Sweetlucy]

Thank you. I've bought a thermometer online from Boots. I haven't used it yet. I was completely wiped out by the journey. Now have the sniffles and woke at 4am with a headache which has gone now. I wondering if panic is causing people to think any ailment is this virus. I know I'm panicking with the news continually rolling out updates. Now I'm concerned that I didn't disinfect the parcel as my postman doesn't use a gel.

[jillydabrat in reply to Sweetlucy]

Keep yourself warm and away from others. Keeping fingers crossed that you keep safe and well. Let us know how you are won’t you xx

[Sweetlucy in reply to jillydabrat]

Just been lying on the sofa all day watching crap TV. I had a shower and made my bed. Took some paracetamol as well. Dam news is now on saying its going to get worse. Luckily there is a online neighbourhood group offering to shop for those afflicted. I've got plenty of frozen and tinned food.

I also have telephone consultation with a specialist nurse on Thursday so now have the worry about yesterday's blood test.

I'll go nuts if I am imprisoned alone for months on end.

[jillydabrat in reply to Sweetlucy]

I am teaching myself to paint and the neonatal unit at James Cook have put out an appeal for crocheted or knitted baby blankets so I am not going to let myself get bored. I am also planning on driving around beautiful North Yorkshire with my camera to get some cracking photographs I hope.

Please keep in touch with how your keeping xxxx

[Sweetlucy in reply to jillydabrat]

After a restless night feeling better today but still not going out

[jillydabrat in reply to Sweetlucy]

Good your feeling better. Would be a scary time to get a regular cold right now. Hope you have a better night tonight x

[Sweetlucy in reply to jillydabrat]

How the hell do people distinguish between a cold or the virus because the virus symptoms can be mild but people will be spreaders.

[jillydabrat in reply to Sweetlucy]

Have you phoned 111 for advice? Maybe it's time to tell someone about your symptoms. I don't think you will have any peace until you ask someone.

[Sweetlucy in reply to jillydabrat]

From what I've been told, unless you have been to Italy and have breathing difficulties you are just told to self isolate which I'm doing.

[Aquinas in reply to Sweetlucy]

I absolutely understand your concerns. The news can hype up our worries, so we are cutting down on watching it at home.

[jillydabrat in reply to Aquinas]

We just found out there are 2 cases in Teesside now where we live. Knew we couldn't avoid it to much longer. Just hoping the 2 are not elderly or have health issues.

[JP1952]

I totally agree. I too, have elected for telephone consultations.

[Aquinas]

You have raised an excellent point which I suspect may be an issue for many, jillydabrat. Thank you for this.

[Sweetlucy in reply to Aquinas]

I had a telephone consultation this morning

Upset because my haematocrit had risen and hydroxy increased. I'm getting low on tablets.

I rang my hospital and asked if I could collect a prescription from my local chemist as I didn't want to travel into central London. I was told this is under discussion. Also I could have blood tests at my GP surgery. This won't work. I got a text to say that the surgery is only doing telephone consultations.

[Aquinas in reply to Sweetlucy]

I honestly think that much of the thinking at present is very slow moving ( reminds me of a hippo). It seems that the health service , though well meaning, don't seem to be able to respond to a fast changing situation. I will pray that all works out well for you soon. My wife is diabetic so we are both worried, God bless. George.

[Sweetlucy]

How do people get to the testing pods without a car? Bus? Tube?