Lymphoedema Service Specification

In 2012 my wife and I were invited to attend a meeting at the Newmarket offices of Anglia Cancer Research, as stakeholders and representatives of people living with lymphoedema for a report with the title: Lymphoedema Service Specification.

I have been trying to find out what happened to the report. It was supposed to be used to raise awareness of lymphoedema and MLD among the medial profession, where ignorance was widespread.

Sadly, everybody who was present at that meeting moved on to other things and I fear that the document may be sitting gathering dust on an NHS shelf somewhere.

One of the issues that the report addressed was the lack of MLD therapists across the Anglia region.

I've tried Anglia Cancer Network, the CCG in Cambridge and the Exceptional Cases Team also in Cambridge, MLD (UK), HealthUnlocked and the British Lymphology Society and drawn a blank every time.

Does anybody out there know what happened to that report? It must have cost tens of thousands of pounds and took months to put together.

Hope you can throw some light on the matter.

4 Replies

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  • Yes, I too would to know what happened, but fear it has landed into yet another NHS black hole, It probably pointed out the failings in our care, so has been buried. When you ask where/what/why NHS treats you as it treats whistleblowers. Good luck!

  • Hi

    I might have found it for you. If you email me at Karen.friett@lymphoedema.freeserve.co.uk I would be glad to email it to you directly.

  • hi karen i would love to see the report as well. i will email my address to you.

    many thanks

    john garrett

  • I am in Wiltshire and Lymphoedema i this area is now run from the local cancer hospis .

    You may have something like in your area.

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