"Long delays and lack of compassion in access to breast care"

In March 2021 I developed a rash on my nipple and areola, as well as changes in the shape and texture of these areas which caused me some discomfort. Recognising the pressure on the NHS, I used moisturisers at home before contacting my GP a month later.

In June 2021, after three unsuccessful topical treatments over the course of 6 weeks, and about 10 weeks after I developed symptoms, my GP referred me to the Breast Clinic at CAH as a 'red flag'.

I was told by my GP that I 'might be downgraded based on my age' which felt a little unfair, given 'low risk' does not mean 'no risk'. By August I hadn't received an appointment letter so I contacted the appointments line who very bluntly told me it had been downgraded and the waiting list was five months, without explanation - they seemed to really want to get me off the phone and made me feel like a burden.

They gave me no safety netting or worsening symptoms advice - I don't even think they said 'goodbye'! I accepted this disposition out of respect for the pressures on the health services and tried to rationalise the five month waitlist in my head, but was relieved to have received a letter from the Trust in October. Except it wasn't an appointment letter, but it was a letter threatening that I may have to pay for any treatments if I did not send personal documentation. I flagged this as erroneous and tried to contact the access team using two different telephones and the number given to me had not been recognised.

I contacted the email address on the letter and I was told to contact my GP who confirmed I was registered and told me to give the access team my HCN. The access team still proceeded to tell me I wasn't registered and were quite rude in their correspondence, ignoring my request for the complaints procedure, before giving me a link to a broken complaints website. I had to then contact the Patient and Client Council to seek advice as my concerns were not addressed.

The Access Team were unable to give me any information as to why I was selected for this routine screening and the person who signed the letter saying this told me eventually that they 'only send the forms'. I would imagine the letter and email correspondence would frighten second language English speakers as they threatened me with having to pay for hospital appointments which added to my patient burden, or could be ignored as a scam letter by British passport holders such as myself.

When I rectified that problem by filling out forms (which I still think were unnecessary), I contacted the appointments line again about my appointment who told me that the breast clinic are only seeing red flag patients, and that the wait list for routine is about two years... but "it isn't really two years because they aren't really seeing routine patients".

I reminded the person on the appointments line that I was originally a 'red flag' patient and asked for a justification for the downgrading since the consultant hadn't seen me and my GP red flagged me and my symptoms have now persisted for six months. I spent a morning having to phone the breast clinic, the appointments line and my own GP back and forward and I found the whole experience really distressing and fear I'm not being taken seriously because I'm under 30.

The breast clinic had no record of my care despite the breast clinic consultant allegedly being the person that downgraded me. It almost seems as if no one has looked at my referral, or at least not seriously as the problems I have are most definitely not 'routine'. Between phoning my GP, the appointments line, the breast clinic, the access team and the unnecessary form filling, I estimate I have lost approximately 10 hours of working time since my referral was started.

I found a real lack of compassion from the appointment line and the access team, who act as though they have forgotten they are dealing with patients who may have life threatening conditions. Additionally, there is a real problem that once in the system as routine, patients must start the referral process again by going to their GP. This seems inefficient, negligent and must create burden on GPs unnecessarily.

My biggest fear is that the system and the poor safety culture is failing younger women, that younger people are being downgraded to get around the obligation to see 'suspected breast cancer' patients (not all patients, like in England) in two weeks. I am especially concerned, since research suggests GPs are better at detecting low risk cancer patients (e.g. Donnelly et al., 2018) and the statistics for NI suggest these targets for the screening are not being met anyway, for those that do get 'through the gate'.

I fear that younger women are going to slip through the cracks as the system plays a risk game based on only written information, especially if they cannot afford private treatment which seems to be the only viable option for younger people, and despite a growing call from breast cancer charities encouraging younger women to check their breasts. I would like a revision of this system so the whole process must not start again, to remove patient burden and pressure on GPs.

In the end, I had to pay to go privately and I can't help thinking that I am lucky to be able to afford that cost, but fear so many other women will not be able to (nor should they have to).