GP surgery and haematology both refusing monitoring of MGUS in East Sussex - Anyone else had this problem and what happened?

Hello! I’m desperately trying to find other people who are having the monitoring of Monoclonal gammopathy of unknown significance (MGUS) via blood tests refused by the primary and secondary care sector in East Sussex.

Background: I was newly diagnosed with Monoclonal gammopathy of unknown significance (MGUS) in May 2024, and discharged back to primary care by my hematology consultant. I was told Monoclonal gammopathy of unknown significance (MGUS) would now be monitored via 6 monthly blood tests by the GP surgery. The first blood tests would have been due in November 2024.

When I contacted my surgery to arrange this they told me they don’t monitor Monoclonal gammopathy of unknown significance (MGUS), as advised by “Local Medical Committee (LMC), which supports GP practices across Sussex in outlining their roles and responsibilities.”

They told me to go back to the hematologist, as according to the GP surgery it’s the hematologist’s responsibility to monitor Monoclonal gammopathy of unknown significance (MGUS).

This went backwards and forwards a number of times, with both services categorically refusing to do this over and over. In the end they both recommended I raise a complaint with the Integrated Care Board, which I did in December.

I have now had an update from the complaint and have been told that it is a commissioning problem and that is is correct that there is currently no provision for monitoring in the community.

This goes beyond me as an individual patient, and the whole process of setting up a service which can take over the monitoring of Monoclonal gammopathy of unknown significance (MGUS) might take up to 1-2 years.

In the meanwhile a Medical Director is trying to organise the blood test. I was also told that I am the first patient raising that issue, but that I can’t be the only one experiencing this problem.

So I am wondering - did this happen to you? What did you do? Any advise would be gratefully received, as this is causing me a lot of anxiety and makes me feel very much like I don’t matter and no-one cares.

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Hi @Mrs-Tupelo I am so glad that you have found us and you seem stuck in the middle of this situation.
I hope others may be able to share their experiences for you.
I have Chronic lymphocytic leukaemia (CLL) and have been referred from the hospitals haematologist back to my GP surgery and they just do my 6 mthly blood tests and I was told if there was a problem I would be fast tracked back to my hospital’s haematology unit.
I am sure this is causing you anxiety and please do let us know what the Medical Director comes back with.
Really look after yourself

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