As many of you know, our beautiful Welsh dragon, Tassia Haines sadly died in March 2024.
Tass touched thousands of lives across the globe, with her informed, honest, humbling, passionate and determined presence.
She was a force to be reckoned with and has changed the pathway of Metastatic Breast Cancer patients in Wales, with her successful campaign efforts and drive to improve patient care, secure dedicated Secondary Breast Cancer nurses, educate around red flags for metastatic disease and raise awareness of clinical trials, access to drugs and data collection.
Tassia took on the Senedd with her petition ‘Don’t leave MBC patients in Wales behind’ and has left a legacy that will benefit existing and future MBC patients.
A legacy that Tassia’s husband Nick, family and friends can be proud of, a legacy that we at METUPUK are proud of with the work she did for our charity. We will be forever grateful to have had Tass in our corner and in our lives.
Tass laid the groundwork and solid foundations for those that follow on. She had an amazing team of supporters in and around Wales and thankfully that support hasn’t dwindled.
The Welsh government, charity partners, breast surgeons and clinical nurse specialists are all part of the ongoing work in Wales, and we owe it to Tass and Nick to take up the challenge and continue to strive for better MBC care.
With Wales being a devolved nation, the Welsh Government is responsible for the NHS in Wales, and whilst most things follow NHS England in terms of data, NICE drug approvals and treatment lines etc., timescales and processes within individual health boards are very different.
So where are we now?
Secondary Breast Cancer Nurses are currently in post, in all health boards bar two, in Wales, some of which are funded and supported by Macmillan, with work being done in the remaining sites to secure the additional posts needed.
The Metastatic Breast Cancer Pathway in Wales was signed off by the Welsh Cancer Network in November 2023, although it’s frustratingly taking much longer than expected to get the pathway consistently implemented within individual health boards. Thanks to Zoe Barber, oncoplastic breast surgeon from Cwm Taf Morgannwg UHB, Macmillan and clinical supporters, work is underway to address any barriers to implementation. This includes educational workshops for clinical nurse specialists around the all-important red flag infographics from abcd – After Breast Cancer Diagnosis.
We know that data in the UK around Metastatic Breast Cancer is sadly lacking. The NAoMe is an audit of Metastatic Breast Cancer and part of the National Cancer Audit Collaborating Centre (NATCAN), based at the Clinical Effectiveness Unit (CEU) of the Royal College of Surgeons of England (RCS) and commissioned by the Healthcare Quality Improvement Partnership (HQIP).
Following the scoping by HQIP, METUPUK has been involved in the project for the last year alongside other patient groups and stakeholders. The NAoMe project has been looking at data for the last 3 years, with the aim of evaluating patterns of care and outcomes for people with MBC and has recently published its State of The Nation report.
The SOTN report is a disappointing read in general, with data being poorly collected as a whole, and Wales coming out way behind England in most of the relevant areas.
Plans in the pipeline
Talks are underway to bring METUPUK’s Darker Pink Exhibition to the Senedd, and host alongside a celebration of Tass’ life and campaigning achievements.
Work is happening to bring the Red Flag Infographics into GPs and primary care settings within Wales, hopefully through face-to-face short educational seminars and printed copies of Infographics (Welsh and English). Tassia was passionate about red flags and GP awareness and this work will be part of her legacy.
Meetings are planned with the Wales Cancer Alliance, with the aim of having a more inclusive, joined up approach to challenges within the Welsh MBC community, for example the Enhertu emergency.
Tass pulled together a small group of Welsh patients, most of us with MBC, who are continuing the work in Wales, alongside METUPUK – the only metastatic breast cancer patient advocacy charity in the UK.
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Sue Thomas
FB @Sue Thomas
IG @secondarychance
Twitter @suescan1964