Hi msmolly,
Please let us know how you get on next week with the NHS Bigwigs,there are lots of questions that definately need some answering so id be realy interested to know what they have to say about all these issues.
Would also be interested to know if BCC has any more new information about the future of BC follow up care?.
Thanks
Linda
Message from the BCC Clinical Team
Thank you Petal5 and msmolly for your questions.
Prior to the NICE (National Institute for Health and Clinical Excellence) guidance on diagnosis and treatment of early breast cancer In February 2009, NICE (2002) did recommend follow-up for at least three years. However the updated guidelines no longer recommend a minimum time period for clinical follow-up.
Their recommendations now say that after treatment (chemotherapy and/or radiotherapy) is completed, follow-up care (primary, secondary or shared care) should be discussed and agreed with the patient.
This agreed plan of care should then be written up and recorded by a healthcare professional/s and a copy to be sent to the GP and a copy kept with the patient.
It is to include:
• designated named healthcare professional
• dates for review of any adjuvant therapy
• details of surveillance mammography
• contact details for immediate referral to specialist care and support services (where necessary).
This change in the guidelines is as a result of the evidence.
The evidence doesn’t support ongoing hospital appointments results in earlier detection of recurrence over GP follow-up appointments. However, the evidence does support that for some women they feel more reassured, if followed up by the hospital team, which could be the breast care nurse.
At present in the UK, surveillance with mammography is as stated in the 2009 NICE guidelines, but clinical follow-up is varied. Some women will have scheduled appointments for a specific time period, some will have an exit meeting/appointment by a specialist nurse/doctor with open access back to the team and others will be given a contact number (usually the breast care nurse) after their exit appointment.
In general Breast Cancer Care supports the NICE 2009 guidelines as it recognises individual situations and values the input of the person concerned. However, as a result of Breast Cancer Care’s Secondary Breast Cancer Taskforce, and following the NICE guidance, Breast Cancer Care developed a tool for GPs to raise their levels of awareness of the signs and symptoms of recurrence and to encourage appropriate and timely referrals. This was sent out widely and is now being turned into a handy guide for primary care clinicians that we are planning to launch in October 2011.
If you would like to discuss any of this further, you are welcome to phone our Helpline and speak with one of our experienced nurses or specially trained workers. The freephone number is 0808 800 6000 (for Text Relay prefix 18001), Monday to Friday 9am to 5pm and Saturday 9am to 2pm.
Hi All
My hospital have never offered any more than 3 yrs of follow up regardless of stage as the Consultant have never felt it necessary, this has always been the case regardless of government or NHS funding cuts. To be frank it is no great loss, a maximum of five minute appt with a disinterested nurse feeling what’s left of your boobs/boob then telling you to get dressed. Even annual mammos are only offered for year 1, but only if the original cancer showed up on mammo. After year 1 women seem to have to fight for them. People who have had double mx do not even get 3 yr checks, just chop and go. I never bothered to go for checks anyway after the first pointless appt. The idea of the nurse asking you how you are - sure she’s too busy for that as ours is a busy unit with a ever running conveyor belt of women getting surgery. But I do feel bad for people who find the medics ad checkups beneficial or reassuring and I think some women must feel very abandoned and afraid without follow up. There is a so called national strategy dated 2008 which claims to be about enhancing post cancer life experience and wellness. If follow up helps people live more satisfying lives then surely it should be available? Or could it all just be talk for the sake of it?
Love
Jane x
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Hello MsMolly
this is a really worrying development - I’ve never heard of such low level of follow up and I find it appalling. We might have a short appointment as the time goes on, and most of us are very happy for that to be the case, knowing that the time should be given to people who need it more, but that quick appointment, as you have said, gives us an ongoing relationship and from that, access to the range of services we might need as we move further from diagnosis. The thing with BC is its unpredictability and the fact that it can and does recur years after initial diagnosis and treatment. My GP always has questions about bc for me, never mind vice versa
Just over a year ago we were debating what would happen to the NHS after the election, well we’re getting to know now, aren’t we?
monica