Is anyone in the group under the care of the Haematology Unit at North Tees in Stockton?
If so, what is your experience of the care you receive?
I'm currently under James Cook UH in Middlesbrough, but they seem very under staffed and under resourced - they had run out of blood bags used for venesections yesterday!
I have PV and my veins can be difficult, almost all of the nurses who have the knack of getting blood out of me have moved on. My consultant has changed about four times since the pandemic and I only met my new one as I complained about only getting phone calls from a nurse, who dismissed any symptoms which I reported.
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They don’t have an MPN specialist at James Cook but Dr Mounter at Darlington Memorial Hospital is very good. I never not see him in person and the specialist nurses are always quick and helpful in sending blood bags or prescriptions to the hospital pharmacy for you. Hope this helps.
My new consultant at James Cook (Dr Plews) is not an MPN specialist, but they are her specialist subject apparently. She wasn't in this week anyway, but her stand in basically left my care in my own hands and nobody on reception seemed to know who she was, when I asked they said it was Dr Plews, but she wasn't even on the unit .
hi Transporter, you can raise your concerns with the PALS (Patient Advice and Liaison Service) located in the hospital they are able to ensure that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible. PALS also helps the NHS to improve services by listening to what matters to patients and their loved ones and making changes, when appropriate.
Did you ever get to see an MPN specialist ? I transferred to North Tees from Middlesbrough years ago Have to admit happy there until Covid happened, now feel very alone re: support and treatment but I am aware that the more poorly people need to be priority, but yep personally this dont help me or others with anxiety and needing reassurance, friendly experts to lift us, think some NHS staff feel they need that too tho whuch results in less empathy Covid has affected us all so much I try to stay positive and try to self help but do have the meltdowns at times Hope you okay and doing well Transporter
No, I haven't got round to trying to see an MPN specialist yet. I used to think I was receiving a good standard of care until the pandemic and it all went south after that. What made you change from James Cook to North Tees?
I've got another consultant visit in just over a week and hopefully it will be with Dr Plews again, but I'm not hopeful. I'm still not sure who the consultant was that I saw last time, as reception didn't seem to know either. She left my care entirely in my own hands. Said she wouldn't start treatment yet as my condition is fairly stable, but I could if I wanted to. Said I didn't need a venesection at the moment, but when I said I had one booked in for the following week, said it was ok to have it. I had a phone call later that week from the manager of the unit telling me not to come in for the venesection as I was at my target, but my ferritin level was low, although it hadn't been checked since November.
I am ok thanks, but I feel as though it is more down to me monitoring my condition than the hospital. Hope you are ok too Pippa.
I'm coming to realise that unless our care is under a proper MPN specialist then we have to educate ourselves with regard to how we should be looked after. I've seen three different consultants in my last three visits to JCUH and all three have given me different views on whether or not to start on medication rather than just venesections.
I've discovered that a lot of my symptoms can be down to low iron levels and that this has not been monitored very well over the last five years. My low ferritin levels were only flagged up by the manager of the Haematology Unit, not by any of the consultants. I've had some useful guidance from Hunter as to what should be checked, but I think ultimately I need to make contact with one of the specialists elsewhere in the north of England and see if they will take me on.
How are you getting on with your care from North Tees?
Ive put a new post on Transporter Think I will stay away from James Cook My Consultant has been really good for me at North Tees until recently, but I am aware too that they are short staffed everywhere and they have burn outs and have serious cases on the wards, dont help us though agree you have to keep helping yourself and using gut instincts Shame there is not mpn specialists more local to people, it would free the haemy depts too
How frustrating and worrying this is. I feel that here in the UK, we are less well-informed about what questions we need to ask, unless you are fortunate to access care from a specialist and specialist team. Thank goodness for this forum and our friends worldwide who post such knowledgeable and supportive comments.
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Agree Flora Thank God for this forum, so much help and support some lovely people
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I try to stay positive and try to self help but do have the meltdowns at times Hope you okay and doing well Transporter
I was diagnosed with PV in 2016 and live in North Yorkshire
Sent to Hospital with possible TIA
How long does it take to be referred to Guys hospital?
