AIBU to wonder if NHS referrals now need constant chasing?

[SMLSML]

NHS Advice

My husband went to the doctor about 8 weeks ago to have a mole checked on his back, doctor confirmed they wanted it investigated and referred him to dermatology at the hospital. He went to the hospital and they said they wanted to remove it to have it checked and he would hear within 2 weeks.

2 weeks went by and my husband isn't the type to chase 🙃 the hospital had said they'd definitely be in touch with him as it was the 2 week cancer pathway. Eventually called them yesterday and got told he was on the list to request for an appointment but still needed to be put through to the booking team to process. Guess I'm asking, is this delay down to the sheer volume of people using the service now? Or would it have sat there until he called? He asked and the booking person didn't know.

I've had a few things like this now (autoimmune conditions) where unless I'm constantly chasing i wouldn't be called for my appointments. Is this the norm across the country or just where I am? This isn't a bash the NHS post, got lots of friends which work in the NHS before anyone jumps on, I know how stretched they are, guess what I'm asking is if people have experienced similar?

Yes - same here, no contact, when I called it will be around a year. Went private - could be seen in two weeks. Probably the same person.

No not normal. My husband and I have been on the 2 week cancer wait list for dermatology a few times between us and always been seen in that time.We’re in an area where the NHS is one of the most seriously financially challenged too. Ditto for gynae when there was a cancer suspicion. I also had a scare re something else ( not cancer)and I couldn’t believe the swiftness lead by my GP( which normally isn’t great as regards getting appointments).

Similar - urgent referral, appointment in 12 months time with a different (wrong) team.

Try again, urgent referral to a specialist clinic two hours away (so a big deal), failed to attach scans, so referral rejected. I only found this out when I rang them after an odd message on my NHS app.

And now I find out that the only person who can deal with it is on annual leave. Not impressed in the slightest!

I've found it's some kind of Comms issue. It's not that they're busy because if you chase I usually get told that the letter was missed and they slot me in fine. I have to chase everything. If you don't, you never hear from them again.

And this is a cancer referral, six weeks on (have progressed from "possibly" to "probably" to *almost certainly", but can't quite get to the clinic who can say "you, but here's what we're going to do about it") symptoms getting worse daily. I've dumped it all on PALS to see if they can sort the appalling admin now

DP went from doctor to mole removed in under a week. I was in (a different) hospital at the time so not sure of the details. Someone did lose my son's audiology referral letter and despite myself and the GP having copies that took forever to sort out. No offers of sending it to them or asking why I would lie about it helped.

My dd had an incredibly painful issue while we were away in wales on 22nd August. She got home on the 24th and went the gp. The gp sent her for a scan, she’s got gall stones and a massive spleen. Her pre op is Friday and they want the gall bladder out within 2- 3 weeks as they believe it could be infected. So hopefully, hers will be done and dealt with with 4 weeks of the issue arising…..BUT I also know people with Gall stones who have been waiting for 12-18 months as they are not classed as emergency despite having regular attacks. I myself waited 13 months and only had mine removed as I was having stomach surgery and the surgeon said he would apply for funding to do a 2 for 1 dealio.

tbh all of my regular rheumatoid arthritis apps roll around like clockwork. So I must be very lucky.

Yes, they do.

In my experience the NHS is usually pretty hot in situations where cancer is suspected or a possibility but the urgency falls off a cliff if its not.

I was being investigated recently for symptoms which could have pointed to cancer and they were pretty fast until cancer was (thankfully) ruled out.

At which point I was discharged from haematology and the local hospital with a giant figurative gallic shrug.

The GP’s approach when I followed up was more or less “its not cancer so we can’t do any more for you”. I’ve had to go in three times since to get them to even consider referring me to other specialists. I’m obviously grateful that they rapidly investigated what could have been cancer but it felt like having been cleared they didn’t consider it their job to get to the bottom of the other possible causes.

You need to stay on them like glue. Different parts of the NHS don’t communicate with one another properly and they never go above and beyond meeting their targets. I really feel for people with serious chronic illnesses, it must be a full time job.

Yes - my friend has cancer and constantly has to cause various aspects of treatment and referrals

Not unreasonable. I was referred under the two week pathway for suspected skin cancer. I had the appointment at a clinic to photograph it. I then was waiting weeks for an update. I called the hospital and was told the wait was 13 months!!! (Despite it being suspected BCC and deemed as “urgent”). I complained to PALS and they magically found me an appointment in four weeks’ time. When I saw the consultant, she said it was a mole. I insisted on having it removed. I got an appointment for around four weeks after that. Turns out it was BCC…. 🙄
I think the NHS are shockingly bad in all areas.

Yes. Have a DS with SEN who had issues with a tooth to the extent he had an abscess twice and needed two lots of antibiotics in a month. He’d been referred 4 times to a specialist because he will not let our dentist look in his mouth and never has. They kept rejecting the referrals until the final one when I asked the dentist to be crystal clear about his SEN and lay it on thick. I still didn’t hear anything for ages so once the abscesses started had to keep chasing it. Had a receptionist try to tell me an abscess “wasn’t a medical emergency”… I kept calling till eventually they just said oh come in x day, presumably to get me off their backs. He had the tooth removed under general within 3 weeks.

We have private health insurance through DH’s work but I have no idea what the point of it is since nothing is covered. Dental, MH services, maternity, emergencies are all still NHS or pay separately to the plan.

I think it depends on the service you need and whether the area you are in has a hospital with that speciality.
eg in Lincolnshire they have a heart specialist available but they only fit pacemakers, so for anything else you need to go to Leicester.

Where I am the appointments seem like the time between visits are stretched out longer than the consultant has requested. I have Max fax appointments that are 6 monthly and I usually go around the one year mark.
ENT want annual visit and I have an appointment for 18 months later.
Dermie wanted a biopsy 6 months ago, problem ongoing, no contact from them at all.
Ive never had so many departments seeing me in my life, if they would just sort me out instead of kicking the can down the road with these short visits that do nothing and just make sure I still have the same symptoms/problems, I might be able to get off the books and be discharged.

I work in a clinical team. We have a waiting list of 9 months. Doesn't matter if you chase us or not, you'll be seen when you are at the top of the list. When we register you on the waiting list, we send out a letter to say that your referral has been accepted and the waiting list is x weeks. However, what we have noticed recently, is that a lot of letters we send to patient's address go walkies and they only find out about their appointment on the day when the automatic system sends them a reminder text. This is especially problematic with services who do "opt in" letters as you don't know that they are waiting for you to contact them to book.
My own experience with cancer clinics where you are seen approximately within two weeks has been positive in several counties over the years. But routine specialist appointments can take months and years. And that is if the referral was 1. sent by the GP (not always the case) 2. Accepted by the specialist (not always the case). If the referral was rejected, I believe the standard practice is to inform the GP. Whether they then bothered to pass the info on... it's hit and miss.
A lot of these issues could have been solved with a unified IT system where every person in the chain, including the patient, is aware of what's going on. But often, I can't even see it in the NHS app that I have a referral even when I already have an appointment boked.