To be absolutely furious with my local nhs trust..?

[TheSheepofWallSt]

Had first colposcopy and biopsy for low grade cervical changes in Jan 2017 at st marys in London, at 4 months postpartum. Three lesions but Biopsy says all okay- come back in 12 months for repeat colposcopy and probably biopsy. High risk hpv, consultant says better safe than sorry.

By the summer had separated from partner, and moved up north. Registered with new GP and at first appt explained I’d need referral for colposcopy in Jan. GP very helpful and made immediate referral. Gynae service sent a letter to do a smear at surgery or re-refer in December. Fair enough. Not quite what st Mary’s would have done, but I know that it differs between providers.

In December GP practice have 4 week wait for smears. I go for the test in Jan- but am bleeding too heavily (period) for smear. Told next appt is another 4 weeks. Obviously no good as will be bleeding then too.

Speak to GP who makes decision to refer direct to colposcopy without smear for feb they say. Gynae service don’t have any appts until March ... and guess what? Smack in the middle of my period again. I say I’m happy to come in anyway- Nurse says dr won’t undertake a colposcopy and tells me to book a new apportionment.

She books one for weeks later. So I finally have a colposcopy appointment for April. I go to the appointment and they... decide they’ll just do a smear - despite having a dr, a nurse, the equipment ready and a time slot long enough.

I’ve been chasing my results since April. I was told there was a backlog at the cytology lab. Then it was a backlog with the consultant- letters were taking a while to come out. The letter came today, and I could weep with frustration.

This is what it says :

We have received the results of your most recent cervical sample when you attended clinic recently. This has been reported as low grade. We shall therefore need to see you in the colposcopy clinic for an examination. Your follow up will be dependent on findings.

Your appt is 3rd September

Firstly- hilarious use of “recent”.
Secondly- low grade what? Dyskariosis? Or cancer outright?
Thirdly- why 4 weeks from this letter- 5 MONTHS since the sample that showed the low grade whatever?

I’m honestly horrified. I’m a single mother to a 2 year old. I’m trying not to panic, but I’ve been feeling unwell and bloated lately, and now, of course, I’m imagining I know why.

Aibu? This isn’t acceptable is it?

Sorry that’s long. Stream of consciousness ....

Sounds to me low grade changes. They need to do the colposcopy to determine exactly but given its low grade changes, I doubt you have anything to worry about. If they had any doubt you would be seen urgently.

Thanks @changing ... Of course statistically it’s unlikely to be anything.... I’m just frustrated that I’m going to be having the colposcopy I first requested a year ago, 9 months after it was due...

Frustrating doesn’t do it justice!
Feel like you’re chasing your tail, going round in circles with them sometimes. No not unreasonable at all

It is absolutely unacceptable. Disgraceful. Shameful.

( I was referred to a consultant for further diagnosis in Feb. Appointment is now in September as they managed to discharge me entirely legitimately due to some circumstances at the time. Let’s hope it isn’t serious. )

I feel your pain. Try not to stress, easier said than done I know. GP might be able to interpret the letter for you, or consultant’s secretary to explain what they mean.

Try PALS for intervention and complaint and demand to be heard. Those who shout loudest get heard first.

Sorry this has happened to you, I feel your frustration. I don’t have much advice, but remember they have found changes to the cervix not cancer. Your following treatment if any will be to prevent cancer. Please don’t stress over it. Focus on the next steps.

@warpdrive sorry to hear you’re unwell- hope it’s all okay for you in sept too...

Going to call the secretary in the morning, and highlight the outrageously overshot 2 week target for results .... and I may happen to drop into conversation that I used to work for C4 on Dispatches (years ago, but still!) ...

I don’t know why I’m joking. I’m beside myself with worry.

And it’s silly I know.
I catastrophise about stuff like this since I had DS. I had horrid PPA that went on for a year- a big fear was dying and leaving him alone. Now I’m a LP, stuff like this is a bit triggering- probably hence ott reaction.
Sorry to drip feed- unintentional .

Follow up of low grade changes can be with cytology back at the GP or colposcopy (who can do cytology only as well). Some areas are more keen on GP follow up, others on repeat colposcopy.
The GP shouldn't have referred you last summer as you weren't due for follow up until January.
In terms of the delay to your cytology result, I have two comments.
Firstly, many labs will prioritise clinic cases as colposcopy has an NHS CSP standard to send result letters out within 4 weeks. Can't comment on the policy at the lab that screened your sample. The units I work with chase the cytology results at 2 weeks and we do a 2 week turnaround on the clinic cases. I'm not sure why that didn't happen for you and would advise you to write to the colposcopy unit asking why they didn't chase the result.
The reason for prioritisation of clinic cases is because my lab, along with much of the rest of the country have backlogs of samples waiting to be screened. This is due to the change in the type of test being brought in next year that means there will be fewer labs and staff. Many staff are leaving or left, as a lot are part time and have childcare responsibilities meaning that moving for their job will be impossible. Unfortunately it's not possible to do the same workload in the national target turnaround time with fewer staff.
None of the remaining staff are happy about it but there isn't much we can do but try to keep up with it.
NHS England announced yesterday that labs will be allowed to apply to convert some of their work over to the new test as that will help to cope with the work but no one's sure yet how long that will take.
In terms of your forthcoming colposcopy appointment, I agreed it does sound very frustrating and disappointing. They would have seen you quicker if the cytology had shown high grade dyskaryosis which is still precancerous changes.