Where's polycythaemia-vera and the NHS?

[Mark-MC]

Hi, Having been diagnosed about two years ago I’m still no further on with what’s going on! I don’t blame NHS staff, I blame a lack of government funding BUT that does not help!

I’m disabled and suffer from long term chronic pain, getting a doctor’s appointment is like extracting hens teeth and a recent referral (a different medical procedure) has taken over a year, only to find that I’ve been ‘discharged’, following one unhelpful and scary phone call and have to start again via my doctor…currently, I don’t think our surgery even has a doctor!

Is this ‘normal’? What route can be taken for someone that cannot afford to go private?

Thanks in advance.

[DottieB]

Hi @Mark-MC
I have a different diagnosis so have no great words of advice unfortunately
I can empathise with your frustration though and the worries that it brings.
Take good care of yourself and keep persevering. I think there will be people on here who will be far more versed in things than me who will be more helpful
Take care

[clickinhistory]

@Mark-MC Having one health issue is bad enough, dealing with multiple, must be a nightmare. Sounds like a local NHS issue. Apart from being booted out of one hospital, the speed with which the other health area worked has been great, if short on listening and info sometimes.
I suggest you use the talents of the support nurses on this site;
Blood cancer information and support by phone and email | Blood Cancer UK

How to contact us

You can call us for free on [0808 2080 888](tel:0808 2080 888) to speak to a member of our trained blood cancer support team in confidence. Our phone lines are open:

• Monday: 10am – 4pm
• Tuesday: 10am – 7pm
• Wednesdays to Fridays: 10am – 4pm
• Saturdays: Closed
• Sundays: Closed
• Bank holidays: 10am – 1pm

Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.

As they are the best suited to find out more about your situation and avenues to help you.

You don’t say if you are on watch and wait or are going through a regular treatment plan, if you are, that should be your first point of call to ask what is happening.

Good luck

[Nichola75]

Hi @Mark-MC. It’s sounds like it’s been a bumpy road and then to find out you have been discharged must be very frustrating!
Have you thought about raising your concerns with PALs?

[Erica]

Oh @Mark-MC I am so glad that you have found our forum and had the courage to post.
Yes, it is a dilemma and I can say that because I appear to be under several ‘ologists’ at the moment.
No, it is not the brilliant NHS staff, it is the system and not just haematology or oncology.
I have found being pleasantly assertive brings the best results but if I knew the solution I would share it with you and we would be very rich.
Sorry I cannot be more help, really look after and be very kind to yourself, you are now part of our forum family, please do keep posting

[Duncan]

Hello @Mark-MC, welcome to the forum! I’m glad you found us, there’s many of us here with Polycythaemia vera (PV) and other MPNs who likely know what you’re experiencing.

Really sorry to read that you were diagnosed with Polycythaemia vera (PV) nearly 2 years ago, and that you’re no further along with it. I’m also really sorry that you live with long-term chronic pain. It sounds like you’re managing a lot, and not getting the support you may need.

I wonder, have you got a haematologist and care team behind you? It would be helpful for you to know who you can contact to query your treatments, or lack thereof. I wouldn’t like to make assumptions about how much you can do with those chronic conditions you live with, but I hope you have support from loved ones?

After being diagnosed with Polycythaemia vera (PV) last year I soon realised that arranging appointments, checking test results, and generally keeping on top of all the medical stuff was really time-consuming and stressful and tiring. Stress can worsen Polycythaemia vera (PV) symptoms so it’s good to try to minimise worries and anxiety. Easier said than done, I know!

Although we tend to be our own best advocates, it really helps when you have someone to check it all over with, help with lifts to appointments, all that stuff that takes up our time and energy. I hope you have great support from folks you trust. It may be time to call in some favours.

I’d say if you don’t feel clear about your Polycythaemia vera (PV) treatment 2 years after diagnosis then your specialists are not doing good enough. It’s their job to care for all aspects of your blood cancer and to make sure you know your treatment plan and how best to live with Polycythaemia vera (PV). Considering your disability it would be helpful if your haematologist was more supportive. Don’t feel shy about asking for better treatment, that’s what taxes pay for!

If you’ve asked for clarity about treatment and nothing has happened then it’s time to take it to your local NHS PALS (Patient Advice and Liaison Service), like dear @Nichola75 suggested. PALS can advocate on your behalf and get things moving. I’d also raise the issue with PALS about you being discharged despite your referral not occurring.

Unsure if you’ve read around the Blood Cancer UK website but there’s some great thoroughly researched information about various elements of living with blood cancer. Here is their info about PV and other MPNs.

Hope this helps you feel a little more supported, @Mark-MC! Let us know how it goes. Keep up your excellent self-advocacy and hopefully you’ll gain more support soon.

[Lynd]

Hi @Mark-MC,

I am so sorry to hear about the struggles you’ve been facing, to get help and support, following your diagnosis.

I echo the comments of others to use PALs and seek support from the BCUK team. The nurses are so helpful, and you can call to talk or email. There are some great info booklets too. They really help you to understand Polycythaemia vera (PV) and what support you will need.

Your GP should have referred you to a Haematologist, and if you’ve not heard from one, then I recommend you contact your local hospital to check if they have received a referral. I say this because my GP said he’d referred me to a dietician to help with my high iron. I waited a year before contacting the hospital, only to discover, no referral. The hospital then chased this for me and fast tracked it.

I hope you will keep us all posted. Welcome to the forum. The community are so supportive. I am so grateful to them all x

[Mark-MC]

WOW! I’m blown away with the helpful, caring and useful replies, thank you you so much. I will contact the experts listed.

[Lucky]

Hi Mark-MC,
I was very sorry to read of your poor experience. May I ask if you making progress?
With my best wishes,
Lucky

[Duncan]

Hey there @Mark-MC, just checking like @Lucky about how you’re getting on?

I do hope you’ve had some progress with your doctors! If not, don’t forget you can contact the lovely Blood Cancer UK nurses who are truly supportive, maybe bear them in mind should your doctors not be as forthcoming as you’d like. And please feel free to look around the forum and ask fellow survivors about Polycythaemia vera (PV) and MPNs.