Advice please

[Imkerin]

I find myself unsure how to proceed and any tips/experience gratefully received. I was reviewed by telephone this week by a consultant in the MPN service where I have been a patient since 2022. As has become the accepted practice, it’s a different medic/clinician every time. I found this consultation frustrating and have little confidence in the adjusted treatment plan; I had a stroke last month so I guess I am also ‘hyper alert’. How would others move forward in this situation?

[hunter5582]

Sorry to hear about the problem at your current hematology practice. Having to see a different provider each time should never be an accepted practice. It prevents forming a provider-patient relationship where trust can be built. This team approach inevitably diminishes the quality of care and violates the patient's right to choose their provider. It seems unlikely that all of the providers in this hematology practice would qualify as MPN Specialists.

If I found myself in this situation, I would move my care to another practice (change hospitals). If that was not possible, I would engage a shared care arrangement where all treatment decisions were made with the MPN Specialist provider of my choice and the ongoing care (labs/tests) was provided locally.

Given that you recently experienced a stroke, you need to ensure that you are consulting with a MPN expert doctor who has the skills and knowledge that you need. It is absolutely essential that you form a relationship with a specific provider who you trust and who knows your case.

Assertive patients receive higher quality care. Passive patients do not. This is time to be very assertive.

Here is a list of patient-recommended MPN expert doctors. mpnforum.com/tsr-the-list/

[Amethist]

I see you are in UK. There is an organisation called PALS that may be able to help you:

nhs.uk/nhs-services/hospita...

You can phone and have a chat with them regarding your experience and how to resolve this in a manner that will suit your situation better.

Just as seeing/talking to different medical staff members doesn’t help you, it also doesn’t help the Drs professionally either. They learn little as they will never see the consequences of the treatment actions, good or bad. This is very bad for the NHS as in effect it is dumbing down our health service. It’s all about following guidelines rather than developing critical thinking in the medical profession. Breaking the trusted patient / Dr bond is not acceptable.

I would also write to the health minister and your mp to express your concerns and disappointment with the current system.

[Scaredy_cat]

do you know if you are likely to have this doctor again? If so, perhaps have a friend listen to the call as well to help clarify or try to have a face to face appt

[AndyT]

Many UK haematology clinics have a clinical nurse specialist allocated to specific conditions such as MPNs - probably worth you finding if there is one at yours.

Mine is very helpful and I’ve spoken to her a few times with queries between or after consultant appointments - she has either been able to answer my queries herself or has escalated them to the consultant where necessary and then fed their answers back to me.

Definitely worth you asking for more information/discussion if you’re unsure or unhappy with what’s been proposed for your treatment going forward.

[RoundTheWorld]

Don’t forget that you can ask for the appt. to be face to face (if that suits you better) and Scaredy_Cat’s advice re a trusted advocate is wise whether by phone or in person. There can be scheduling considerations but if you’re talking to different doctors anyway that’s less likely.

I do sympathise - I’ve been there too and it’s not easy - NHS Haematology departments are stretched and sometimes maybe they’re just too busy to have taken in that you’re at a particularly stressful point yourself and really need more continuity and clarity.

Otherwise, as Andy suggests above, is there a specialist nurse you can talk to (or if you’re also under the care of a stroke clinic can they help) ?