Recently diagnosed and blowing a gasket at the NHS

Diagnosed with breast cancer Recently diagnosed with breast cancer
21

The NHS has it’s fault but without it I may not be here to write this post.

The medics I have encountered on my cancer treatment have been committed and professional, yes some things went wrong and they listened and tried their best to make things right. At the moment there is the ‘quademic’ so that could be affecting staff numbers to be able to make appointments. In many Welsh hospitals they have reinstated masks to prevent the spread of flu.

Many cancers do not grow really fast so a few weeks wait should not be a problem. I was diagnosed with bilateral (both) breasts, so with extra tests I was not treated within the recommended timescales but the team were still confident with the plan. Some of my delays were due to summer holidays with staff and this could be the case for you over the festive period.

As already mentioned I would call and ask to speak to the consultant’s secretary to see what is happening and why, if you haven’t done already. Were you given a breast care nurse number, might be worth call to them. Or the BCN nurses on 0808 800 6000 ( closed 1 Jan), just to chat through what is happening. You may have already got a new appointment.

As far as the NHS app, you should live in Wales, we can only order repeat prescriptions, look at medicines prescribed and GP appointments already made. We don’t see our medical notes, blood tests, can’t book appointments with GP and can’t see any hospital information at all. But that what you get from a devolved system, hopefully it will be improved soon. My local trust send texts for appointments and reminders but the cancer centre send letters by post. Not joined up! Even though things are not perfect, I have still been treated well within the NHS.

Earlier this year I paid to go private to see a menopause specialist, who I’d waited months to see as an urgent cancer referral, and that experience was far from perfect. Clinic over run with no updates, unfriendly receptionists who asked me to wait in the wrong place, poor parking, very high prescription charges and processing fees and a consultation that felt rushed as I was last and they’d run so far behind. I refused to go back and eventually got my NHS appointment 4 months later.

@itbird66 I noticed you are HER2+ and as our treatment lasts longer than chemo starters monthly threads you might like to join this thread of very supportive HER2+ buddies, it’s been running for a year this week.

I’m hoping you have some news nd are feeling a bit better.

:smiling_face_with_three_hearts:

1 Like
22

Interesting. I thought we were having a stimulating and informative debate about a subject of vital importance to so many of us and sharing different viewpoints

23

I never really understood when people referred to cancer treatment as being a postcode lottery until now. Since my own treatment started and from reading what people put on this forum it’s really clear that where you live and which hospital treats you really affect the speed of treatment and what you are offered.
I live in a relatively low population area of the west country now, having moved two years ago from a big town on the south coast. The consultant I saw today once worked in that big town. He said to me that because we have a lower population here in my part of the south west my treating hospital is able to meet all the recommended timescales for each stage of treatment, whereas if I were still to be in the big town I lived in before I would have waited many months for each stage of the same treatments. It’s just a fact that hospitals, whether well managed or not, cannot cope with increasing populations as their staffing capacity, equipment and buildings can’t grow at the same pace. Sadly this has a huge effect on their patients.
I’ve had amazingly kind and compassionate care from my doctors and nurses (even though I feel that overall there is a lack of understanding of mental health issues from cancer treatment) and I cannot fault any of the individual practitioners I have come across. It’s the administration and lack of coordination and communication that is so frustrating at times and the fact that you have to constantly follow things up and make sure you haven’t been forgotten because you feel you can’t trust that they will be done. Just one example - 2 days after my surgery I was making phone calls to try and find out why my phesgo jab that was due at home that day hadn’t happened. Why? Because the person who should have signed off the prescription 2 weeks beforehand hadn’t done it! You shouldn’t have to be your own care coordinator 2 days after a double mastectomy. I made 8 calls that day to sort the problem out.
I now always follow up whatever I am told with an email to my breast cancer nurse and ask her to confirm she’s got it. I’m sure she must dread seeing my name! I do it by email so I have a trail of correspondence I can rely on should I ever need to (legal secretary for years so it’s habit I’m afraid) and I never leave anything to chance now.
I hope you soon get the appointment and answers you need and I wish you all the very best. Xx

2 Likes
24

Good tip Jayesse i will try and get some email addresses for the BCN team so i can follow up similarly.

you know the staff are great mostly although you do feel like a specimen and i am starting to object to the amount of people that are in the various rooms . its like you are getting this terrible news at various stages and there are all these people staring at you , looking for your reaction, no-one actually saying anything just staring at you - should i be crying? fainting, laughing - i dont know but feel i am being expected to provide them with something . from here on in i will be asking who everyone is and the reason for their presence as its all too public for me.

2 Likes
25

Its the same with the NHS app in england - the only people who seem to be uploading stuff is my GP and sometimes the outpatients appt team - the breast cancer team dont seem to be uploading anything at all - i wonder why ?

1 Like
26

Maybe on another day. Too many family here right now.

1 Like
27

Goodness. I’ve only once had lots of clinicians in with me and the consultant introduced them and explained why they were there and asked if I was happy with it. . You absolutely must tell them you are not happy and only want essential people there and expect to be asked re anyone else. X

1 Like
28

Hi @itbird66 sadly I can relate. My whole treatment has been delayed at every stage due to poor NHS communication. On the bright side, once your treatment starts properly, you will hopefully find that things move along more quickly and efficiently. Hope your new appointment comes quickly. Good luck x

1 Like