A woman diagnosed with incurable breast cancer has written a heartfelt and powerful letter as she bravely fights for changes to be implemented to help others in her position. Last April, we told the story of Tassia Haines, who was given her diagnosis in 2020, at just 28 years old. You can read more about that by clicking here.
She is currently receiving treatment from two Welsh health boards, but feels driven to make a difference in the time she has left. Miss Haines, now 30, a member of MetUpUK, the only patient advocacy group in the UK aiming to push and promote issues with secondary/ metastatic breast cancer (MBC), has launched a campaign highlighting the concerns of patients who feel they are being failed by the Welsh Government.
The petition reads: "People living with metastatic breast cancer in Wales are being badly let down by the system. Currently, Wales has just one dedicated secondary breast cancer clinical nurse specialist, a situation that leaves potentially hundreds of people without adequate support. We need to know how many people are living with MBC to improve services. And we want to improve quality of life outcomes by raising awareness of MBC red flag symptoms." You can get more health news and other story updates straight to your inbox by subscribing to our newsletters here.
Read more: The reason behind Matt Lucas's incredible weight loss
Aiming to gather 10,000 signatures, the petition is calling for the following things to be implemented:
- Better data collection of people living in Wales with incurable cancer. Currently there is no database in the UK that counts MBC patients. This campaign is asking for a central Welsh system that will collect the details of all MBC patients in the country.
- Better awareness of the red flag symptoms of MBC. There is a lack of understanding in primary breast cancer patients in how to tell that a cancer has spread beyond the breast, and this campaign wants primary patients and GPs to be given more details on how to spot these red flag symptoms.
- Better patient care. The campaign wants all Welsh patients to have access to a specially trained metastatic cancer nurse, whose workload is focus only on MBC patients.
Miss Haines, from Port Talbot, has written an open letter to the minister of health and social services as part of her campaign which reads as follows: "Unfortunately, I have been living with metastatic breast cancer (MBC) for over two years even though I am just thirty years old. I am receiving treatment from two health boards and have met people undergoing treatment from all over Wales, and regretfully I must inform you, Wales is failing when it comes to meeting the needs of MBC patients, according to us - the people dying from the disease and the close people supporting those with MBC.
"The failures surrounding MBC stem from the insufficient implementation of previous cancer delivery plans and the more recent cancer quality statement which not only preserves Wales as the only UK nation to not have a cancer strategy but neglects to exhibit accountability and therefore improvement when it comes to a jarring decline in best practice and patient care.
"Namely, combined efforts of the Welsh Government and the Welsh Breast Cancer Group have been ineffective in protecting patients from the inconsistent care received between health boards. Furthermore, there is still no data to show us how many people are living with MBC in Wales, despite the importance of this being raised and promises to rectify this in 2019. As a consequence, progression of care in this field has moved backwards, as we cannot measure the impact of interventions as people living with MBC remain an unrecognised/unknown group in terms of data.
"Imagine having the knowledge that you are not only slowly dying but are also having elements of your identity and life robbed by this invisible, vastly misunderstood disease? Can you comprehend what it is like to navigate your final months/years between disability, pain and death? And in my case be too sick to pursue a career and have a family, but not sick enough to die, just yet? Now consider the feeling of impending dread as you realise the system you supported your whole life withheld the knowledge from you that could have potentially prevented this from happening and is also making you face your end alone?
"Respectfully, you as health minister and our government have indirectly become the architects of this dystopian nightmare as the creators of this fractured framework. By not recognising the importance of access to an MBC clinical nurse specialist (CNS) to every patient with MBC you have denied them a consistent partner who will be with them through their terrifying decline from a healthy, pain free life.
"An MBC CNS is more than a role; they are our familiar face between all the differing doctors, they are our voice when we are overwhelmed, they are our guides, our translators, the guardians of our dignity and most of all, they are our friends who will hold our hands through our end-of-life care. There must be some element of consistency and accountability centrally to allow health boards to do the best they can."
As part of the campaign, Miss Haines, who has been working with and is supported by a small team including Marguerite Holloway, who specialises in improving MBC care in Wales through Macmillan, and Ann Baker BEM, now retired MBC oncology clinical nurse specialist, has created a large piece of street art in Port Talbot, ‘The Gammon Dragon’. You can read more stories about Port Talbot here.
She said: “The dragon is named after my friend, and MBC campaigner, Carolyn Gammon, who died in September, 2020, from her metastatic breast cancer. The pink neon dragon aims to ‘yank’ people from their usual walk into town. It glows as a bright sign to signal action, and has been created to draw attention to the way that the usual pink breast cancer campaigns fail the 31 people who die from metastatic breast cancer every day, which remains the biggest killer of women under 50 in the UK."
A Welsh Government spokesman said: “We are committed to improving cancer services and outcomes in Wales, including for people with metastatic cancer. Our new cancer information system will enable better service planning for people with metastatic cancer and we are also introducing a national clinical audit that will benchmark the quality of services provided to people with metastatic breast cancer. We will work with the NHS in Wales to reinforce the need for patients to be given information on signs that their cancer has returned and will give further consideration to the role of nurses specialising in metastatic cancer.”
You can sign the petition by clicking here.
READ NEXT:
- Woman looked nine-months pregnant after she mistook cyst for a baby
- Mum found serious cause of her back pain when she watched Embarrassing Bodies
- Breast cancer discovered to spread at night
- Millions of women missing vital cancer checks
- Woman diagnosed with cancer during pandemic hit so hard she was left with PTSD
