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Rubbish care in UK

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Hiya,

My husband was diagnosed with CML in 2019 and has been in MMR since 2020. He was initially under a great consultant who was informative, seemed well informed and treated him well. She unfortunately left the hospital end of 2019 and since then he's had a locum who quite frankly is rubbish.

Has anyone had experience of being referred to other hospitals for better care, or sought out private consultant care?

We are only 30 years old and have been navigating this between us with very little care, especially given the pandemic.

Hi. At the top of the page click on Patient Info, and then select the specialist centres option. This will show you where in the UK there are teams who deal with CML as a specialism. If you are not happy with your care, ask your consultant if they are in contact with the appropriate centre.

On diagnosis I saw a consultant in Durham, who was regularly in touch with the team in Newcastle. I now have a consultant in Chester, who trained in CML with the team in Liverpool. Both were very good, and sought input from the specialist centres when they needed it. 

Not sure the word rubbish should ever be used when describing any medically trained locum who might not meet your standards, in the last 3 years I’ve had telephone consultations with the department dealing with my Cml condition, it might not be the same person I spoke to in the previous consultation, but they answer any concerns I might have and the phone conversation might be less than 5 minutes, but there not guessing how your partners condition should be treated. Nothing but total respect for uk treatment of any cancer care given in the Uk by the Nhs.

Peter.

Thank you, that's really helpful.

Hi Peter, sorry to have caused offence. May I just clarify that I am incredibly grateful for the NHS and as an NHS healthcare professional myself I know first hand how valuable the care within the NHS is. It's not the fact that the consultant is a locum, it's the fact that the care is substandard. The previous 2 consultants who have been involved with my husbands care have also been locum, and I cannot fault thier care, nor the care of the nursing team. We are merely seeking a second opinion because for the past two years he is not getting what he needs with his current doctor.

I can relate to this since my original cml expert retired and I’ve now had 3 doctors in 2 years. I do understand the NHS predicament but to be honest I’ve had a bit of a rubbish handling since his leaving. Missing blood forms, wrong appt dates, missing medication (don’t even start me on that one). Having a “doctor” that you know and knows you causes a great deal of calm with the sensitive subject that it is. Having a locum is better than zero but still not good enough in my opinion. And let’s be clear the NHS isn’t free we all pay for it. Yes they are overworked and on their Knees but they don’t live with a life threatening disease and any change from the normal causes a great deal of anxiety. I really get this!

I hope like me you get a decent regular cml expert that we all deserve.

Alex

Yes exactly! I have zero problem with locum doctors especially when they are regular locums, but your experience sounds so similar to my husband's. We've had every single one of those issues you mentioned. We're now hoping to be referred to a different hospital where I believe his original consult is based so fingers crossed we get somewhere. Thank you for sharing your experience.