Finally got first hematology appointment

[ItsJustMee]

Hello everyone, I hope you are all well.

Well it finally came through for 10th June, so still quite a wait to go. Would you say the fact that its so far away suggests they're not too worried about any urgency?

How was everyone else's first hematology appointment wait/timescale?

My wife is still feeling dizzy and such but I've been making sure she's drinking plenty of good quality water (aiming for 3L) and eating a good diet of mostly paleo including a daily smoothie of strawberries, blueberries, banana and avocado, so I am hoping this will help a little in the meanwhile. Any other suggestions would be welcomed.

Thank you again to all you amazing and kind people for helping us both feel a bit of relief from the stress of this situation.

Ben (and Barbara) .

[Wyebird]

If you live in the uk you can ask your doctor to send you anywhere in the country. I did. It might mean your wife will get seen quicker. Once you are in the system you can then get transferred back closer to home.

[ItsJustMee in reply to Wyebird]

Thanks for the tip wyebird, if she seems to get any worse I will deffo look into this.

[shiftzz in reply to Wyebird]

Only in England.

[ItsJustMee in reply to shiftzz]

Yes, we're in England. (Barnsley)

[shiftzz in reply to ItsJustMee]

I realise, the referral to any consultant only applies if you live in England, the same option does not apply to Wales..

[Wyebird in reply to shiftzz]

Gosh that’s something I wasn’t aware of.

[shiftzz in reply to Wyebird]

An English hospital has said it will no longer take in patients from Wales except emergencies and maternity cases.

The Countess of Chester NHS Foundation Trust decision will impact on thousands of people in Flintshire who currently use it, with immediate effect.

The decision follows a row over payments to the hospital for caring for patients from Wales.

A Welsh Government spokesman said limiting access to Wales' patients on financial grounds was "not acceptable".

GPs in Wales will no longer be able to refer patients for treatment over the border at the hospital.

Wrexham Maelor Hospital and Ysbyty Glan Clwyd are the next closest hospitals for patients in the area.

Chief executive of Countess of Chester Hospital, Susan Gilby, said it was "a difficult decision" down to "unresolved funding issues".

"Unfortunately, the trust is currently unable to accept any new elective work relating to patients living in Wales.

"We will of course honour any existing appointments so there will be no disruption for patients already waiting.

"This is a difficult decision that has been taken with great reluctance."

[Wyebird in reply to shiftzz]

All news to me . I’m welsh living in England. I’m afraid I’m going to have to reluctantly support that decision. Wales does not charge for prescriptions and apparently the Welsh nhs is in financial trouble. Maybe it sounds harsh but if finance is a factor then paying prescription charges could be the answer.

[shiftzz in reply to Wyebird]

Yep, free prescriptions and parking and a massive waiting list and some hospitals in special measures for years.. My family still live there and I have told my better half, if I become ill, take me back over the border...

[Wyebird in reply to shiftzz]

What back to Wales for treatment?

[shiftzz in reply to Wyebird]

No, Leicestershire

[Wyebird in reply to ItsJustMee]

Gosh my first appointment was Barnsley. I travelled from Doncaster. Purely because that was the first appointment I could get. I wouldn’t wait.

[ItsJustMee in reply to Wyebird]

How did you find Barnsley? Did they know about the condition and such? I'm not even sure how to go about getting her a sooner appointment elsewhere and what if we went elsewhere to find they're not as good as if we waited? Would you say 10th June is too long to wait?

[Wyebird in reply to ItsJustMee]

I was told by my surgery to contact them if no appointment had been allocated within two weeks. After about 3 weeks my breathlessness was getting worse. My friends told me to get on the phone there and then and sort out an appointment. I was in London on a Friday day out at the time.

I phoned the surgery and queried the wait. I said I know I’m very ill. I will go anywhere in the country. I had an expensive holiday approaching. The secretary searched and came up with Sheffield in 2 weeks time. I accepted. On the Monday morning I was tidying up and saw a letter which I thought was confirming the appointment. I opened it only to discover that by the time the secretary went to book. the slot had gone but an appointment at Barnsley for that afternoon had been booked for me.

I had enough time to sort myself out and get to the train station.

I saw a Dr Ng. After various tests I was recalled for another blood test. I took a picture of the form. I was being tested for an MPN.

I will always be grateful to him and the team. He always said as I was leaving his room .

‘I’ll see you in2 weeks if there is no room then tell them to over book.’

He asked why I travelled to him and I explained the above. He said that I could transfer anytime I wanted now I was in the system I wouldn’t wait. He also told me that Barnsley liaise with other hospitals to discuss cases. So my treatment would be the same.

[ItsJustMee in reply to Wyebird]

He sounds like a very nice doctor, perhaps that's who we will end up seeing?

I will speak to my wife and see what she thinks about calling about other earlier appointments elsewhere.

Thanks for all the good info.

[Wyebird in reply to ItsJustMee]

Now that you know you can travel out of your area. I would consider going back to the doctor and say you will travel anywhere.

Why wait and prolong the anguish if you can avoid it. I was getting really bad and with a holiday fast approaching I wanted to know if I wS going to make it. ( which through et I couldn’t go on)

Good luck. Let me know how you get on.

[ItsJustMee in reply to Wyebird]

I will let you know, but I doubt anything can be done now till Tues due to easter weekend. (our gp closes)

[Helen1952]

Hello Ben

I have looked at your previous post and can see how loving and caring and yes scared you are about your wife.

As to answer your question I would say yes it's good the appointment is a couple of months away although I appreciate the waiting is hard.

I got mine very quickly but my bloods were all over the place.

It's great that your wife is eating healthily and drinking water but I hope she can enjoy a little bit of chocolate over Easter if she likes it.

My husband is very supportive too we are very lucky wives.

Take care of you both

HELEN XX

[ItsJustMee in reply to Helen1952]

Thank you Helen that's very nice of you to say. I wouldn't say her bloods are all over the place, just basically the red count and volume.

I'm hoping it will be worth the wait and we end up with a really good haem, because I'm not really sure what to expect with it only been a local hospital and not a big university hospital, although they do have 3 haems there.

[ItsJustMee in reply to Helen1952]

And yes, she really likes that high % coco solids dark chocolate

[Helen1952 in reply to ItsJustMee]

Good we have to have a bit of joy.

I go to my local and the big one and I can't fault either.

My local is excellent so hope yours is too.

I know the waiting is hard but definitely step away from Dr Google hopefully you will be able to get a good rapport with the heam xx

[hunter5582]

The long wait to see a specialist is really aggravating. Happens here in the States too. As others suggested, it is worth travelling if you need to. just finding a hematologist is not enough. You need one who is experienced treating MPNs. Many are not and do not have the knowledge needed re. MPNs. Please do not be afraid to ask your doctor how many patients with MPNs he/she has treated. Check out the docs knowledge specific to these disorders. I did not find a hematologist close to me who truly is an MPN expert. What I did is travel to a well recognized hospital MPN Clinic and saw a hematologist there. This MPN-expert is now a "consultant" on my case. As needed, he advises me and my local treating hematologist regarding the PV treatment. I actually had to recently change my local hematologist as the old one removed himself from my case because he recognized he did not have the expertise to treat me. The new hematologist is fine working with a consultant, which is why I chose him. I found the MPN-expert doc on this list of patient-recommended physicians mpnforum.com/list-hem/ . All the best to you both.

[ItsJustMee in reply to hunter5582]

I'm hopeful this haem has some knowledge about mpn purely based on the fact they mentioned the condition as the suspected cause when our gp wrote to them, but that's all we've really got to go on at this point.

Once we finally get to June and see them we will know much more I hope.

My thoughts are we might end up having to go to the city University hospital, but you never know I suppose until they're given the benefit of doubt.

[jointpain in reply to ItsJustMee]

Hi hope you are both keeping your peckers up! If as you say an mpn is suspected, which is a cancer, you really should be seen within two weeks by a haematologist, maybe go back to your GP and ask for a referral within that time. I hope it isn't an mpn.

All the best Steve.

[Strumin210]

I am here in the Southern part of Alabama and I believe it just takes time to see a specialist unless you go to a Emergency room and they get you into the Doctor's office that day. Some Doctors will do that. My platelets hit over one million during a blood test at one of our hospitals. My Oncology doctor saw me that day and started me on hydroxurea. Enough rambling. I hope all goes well with you. Blessings from Alabama.