Advice: Chase referrals made.

[Nackapan]

I was referred to a neuro opthmologist in December 2019. Referral accepted January 10th 2020 by letter .

Chased last year. Then last week. Over days woukd queue on the phone uo to 4omins then it just cut off. Rang my doctors surgery. Finally got through. Person dealing with hospital appointments not in.

Did get a call ftom her.

She was very helpful and helped phoning at random times when she at work.

Missed call another 22 minutes getting through to the surgery.

Shed managed to get through. Apparently I'd had an appointment sent in January 2021 and I didn't show up. DNA .

Furious. No way to prove I'd not recieved a letter no text either. Gp normally told too.

I did point out a second letter always sent in that scenario. Fortunately the woman at the surgery said this. Also ive no reputation of not showing up for appointments.

I'd been taken off the waiting list. Had to argue tge cases once again. Very stressful.

Letter arrived the following day !! Appointment at the end of July 2021.

So if anyone waiting I would chase it if a long time.

J think with covid snd clinics shutting and opening everything is is in a complete mess.

Very worrying.

So Hope I at least get some explanations for some major symptoms.

[Hidden]

I think hospitals are in a mess at the moment. Partner had suspicious mole removed from arm, received letter with all clear. Same day had telephone call from hospital regarding treatment. He explained he had all clear and hospital said there was a mix up and put the phone down.So he then thought was it a mix up with the results or at the hospital ringing him. So then had to phone surgery to find out .

[Nackapan in reply to Hidden]

J do hope it was all clear

[Hidden in reply to Nackapan]

I think it's ok but keeping an eye on it. Hope you get the help soon. Have to consider ourselves lucky considering our neighborough , he was supposed to go every three months for a check up which was cancelled three times. Massive swelling on his back cancer. Now had operation to remove tumor the size of an orange, his sister also had one too. This covid thing has really affected everybody in one way or another.

Hoping you'll get first class treatment in July.

[Narwhal10]

That is dreadful. You have had to persist at so much. The illness is hard

enough but with a system that’s so chaotic it makes it leaves you exhausted

and fed up.

I do hope they sort out your problems.

Take care

[Nackapan in reply to Narwhal10]

Thanks.

[deniseinmilden]

Well done on your tenacity.

Thank you for posting this as a reminder to encourage others.

You certainly have my sympathy.

In the post-Christmas covid crisis, because covid +ve tests were being sent through the post and therefore the postal system was riddled with covid spores, the postal system was crippled in many areas. I'm not sure if a letter was ever sent but even if it had been there was every chance it wouldn't get through.

Lots of people are complaining that there has been a degree of apathy that has set in to many aspects of life because anyone who can't be bothered to deliver a good service is just blaming the pandemic and getting away with using this excuse!

That, coupled with lots of people both genuinely affected by the situation, and those who "come out in sympathy", has led to a drop in productivity which is challenging life as we knew it, isn't it.

Thank you for your encouragement to keep chasing things up.

[Nackapan in reply to deniseinmilden]

Very true. Just remembered a wedding reminder was never recueved either that I knew was sent. Didn't think about the contamination of post having to be sorted.

Like a separate service needed to avoid this.

Yes alot of NHS staff roles changed and not informed of how to continue. When j rang last year they said they had not been told anything about when clinics woujd reopen. But In the position of manning phones. So only could say still on the list.

I didnt want to 'clog' phonelines' but 18 months!!

Wish I was cured and it not needed now!

Yes there is alot of apathy and disruption in staffing.

The less to do ,the less in done.

I got a text ftom the vets though lol

Hooe you getting along okay.

[deniseinmilden]

😘

[waveylines]

Am so so soory to hear this Nackapan. Absolutely disgusting! Generally they ring to confime an appointment through an automated service which keeps repeating until it gets through.......suspect the letter was never sent out!

I too was put on a waiting list for an op. July 2020 after investigations (colonoscopy) and consultant said I needed an op. The consultants letter said the opposite! So I queried it and was told by the hospital they had put me on the list. I didnt hear anything but was exepcting a long wait, GP said I was on list. Then this month got a phone call to say EP had referred me to them. He hadnt but was chasing them for the op to be prioritised as he wants me back on blood thinners but then they told me I wasnt on the list. Complete muddle &bedlam!! . So same consultant asked to see me again -didnt remember me or what he had done. Did the briefest of examination and said I dont need an op. I dont know what to think anymore!! May get checked privately!! Had enough. Think cinsultant is just covering his back but cam off blood thinners due to profuse bleeding which the consultant found the cause of with colonscopy. NHS isnt coping.....and frankly dont want him operating on me!!

[Hidden in reply to waveylines]

Frightening for you when specialists cant make up there minds. Not only confusing but all plays on your confidence in these specialists. Like all things confidence in life is a great stepping stone to a better life.

[Nackapan in reply to Hidden]

Yes I agree. 3 neurologists all had different theories on me

Will see.

[waveylines in reply to Hidden]

Thanks Sallyanni.......so true especially when its a surgeon!

[Nackapan in reply to waveylines]

No. Doesn't give confidence. The administration needs more input. Even The Nationsl where My daughter gers excellent care is lacking in basic admin.

Requested bloods csn take months yo get as letter ftom consultant to gp needs chasing almost worth waiting to take it home with you. .

Acute stuff seems to ve happening well thsnk goodness.

Hope you get your situation sorted

Tc

[Showgem]

I was sent a copy of a letter sent to my GP from the neurologist last month saying that as I had not responded after they contacted me about a MRI appointment that they have now cancelled the appointment and closed the referral. I had received nothing from the hospital at all, I have been waiting since the end of January for this appointment. I phoned and of course it was blamed on the postal service during the pandemic and my message would be passed on. I checked with them and they had my correct address, mobile and home phone numbers and email. I believe although it may be true that some post could have got astray the postal service is being made a convenient scapegoat for all errors. A friend had a phone call from the same hospital to say she would have to book another appointment for her mammogram as she didn’t turn up for her appointment. She had been waiting for a new appointment after having had her previous appointment cancelled at the start of the pandemic and definitely knew she hadn’t received a letter. She was told it must have been lost in the post and another appointment was booked. Unfortunately she is now receiving treatment for breast cancer.

So I would agree with you we need to check and check again to chase any appointments up.

[Nackapan in reply to Showgem]

Or text of email

[Hidden in reply to Showgem]

I live in a small village and last year I received a letter from the NHS for someone I had never heard of. I went from House to House trying to locate this person as there have been a lot of people buying houses here. Nobody recognised the name so I had to return this letter not known at this address. So cant blame the Royal Mail for that one. !

There seems to be an excuse for everything today.

[waveylines in reply to Showgem]

Thats awful Showgem. The truth is the NHS is not coping. They were at breaking point before the pandemic........ Unless we invest proper money long term this will continue. Given the long term change in the world with viruses you would have thought it would be a top priority. A sick nation will mever be profitable (I know we shouldnt have to think of it like that but hey ho) All that has happened is private medical services have creamed of money at higher rates from the nhs to deliver the straightforward parts of the nhs, whilst leaving the nhs to deal with the complex/lomg term which cost the most..... I waited three months for a cardiology letter with advice for new meds....because the typing pool for cardiology alone had a back stack of over a 1000 letters. My GP couldnt act until recieved.....she rang them in the end thankfully.

[Hidden in reply to waveylines]

Years ago we fought tooth and nail to keep our cottage hospital open, it was there for mainly the elderly recuperating from operations etc. No they closed it. A local hospital was rebuilt on a new site with less capacity, now having to have an extension.With the population increasing, houses been built here there and everywhere and the NHS did the opposite. Is it any wonder in hindsight that things have gone wrong.

[Hidden in reply to Hidden]

Just a little story to brighten the day. About 30 years ago mum had to go to the cottage hospital which closed, the only problem was there were only beds available on the mens ward, she was fine with that. On arrival she met several people she knew, so they were all talking about the old days, and what they got upto. (Mum was very good looking and had a few admirers). The following morning I went to see how she was doing, and mum said this is so and so. The gentleman in the next bed suddenly said I been waiting over fifty years to sleep with your mum. The whole ward was laughing... and still brings a smile to my face today.

[Showgem in reply to waveylines]

This is very true. The private medical services highlight their good results which are to be expected seeing they don’t take on the more complex cases as they leave these for the NHS to cope with.

[Nackapan in reply to Showgem]

Hope your friend recovers well from her needed treatment.

[GalDriver]

Well done 👍

[Cherylclaire Forum Support]

Well done Nackapan , both for pushing hard to get what you need despite illness, and for feeding back here. No-one wants to overload a burdened service, but you can't work out complex answers for yourself. So glad you got an appointment eventually. Let's hope you get something useful from it. Answers, yes - and then real help with symptom management. Will be crossing fingers for you.

[Nackapan in reply to Cherylclaire]

Thank you

[Bonjourtristesse]

So frustrating for you. Well done for sorting it out.

I spent weeks trying to cancel a specialist appointment. They kept sending letters confirming the appointment that I tried to cancel by phone several times. The letters all said ‘missed appointments cost us xyz per year, please cancel if you don’t need it’. I remember then thinking the whole system was very difficult to navigate.

[Hidden in reply to Bonjourtristesse]

Maybe due to nhs administration people working from home.!

[Bonjourtristesse in reply to Hidden]

This was pre pandemic. I think the whole organisation is so big it’s very difficult to manage.

[Hidden in reply to Bonjourtristesse]

I believe there was a memo on 15.6.21 saying all nhs staff to return where possible and in accordance with covid regulations.

[Nackapan in reply to Hidden]

Computer systems often dont talky with each other often. . J was in the NHS for 36yrs .when the computer systems were supposed to make us paperless. It's ended up double the record keeping at times.

Otherwise a whole clinic session I'd planned woujd be cancelled if it crashed.

The IT very fragmented and different systems. Nothing like knowing someone in a department to check and communicate and colate records.

GPS had the option to opt out .

I coukd go on.

Get copies of everything .

I've never had so much paper lol

[Hidden in reply to Nackapan]

Too much reliance on computers today, always need back ups. Whether that is paper trails and even cash.

Today if the computer system fails everything seems to stop. Just my opinion.

[Nackapan in reply to Hidden]

I agree memory. Recognising people. Continuity. I doubled my wotk as paper as well.

Mobile computer systems even more problematic. Happened once only. Screened 26 children and lost the lot

!!

Its about balance agsin.

When working brilliant.

We still needs to uses our brains though.

I was useless at mental arithmetic until I worked in a bakery snd a pub.

If you don't use it you lose it.

Especially without enough b12 !!

Or with !!

I personally keep all my heath records now

The NSH neurologist j saw didn't even have access to the recent mr brain scan??

Pre covid.

They can only do their jobs with the right information!

Test results.

It dud amuses ne when tge Gp put symptoms on the computer yo chooses a drug!

Good though for drug compatability.

J wish we coujd all just be confident when we finally manage to see anyone.

I wkukd actually like to be taken in hand with a proper treatment plan.

DIY unsettling at times

Sadly the one neurologist j paid to see was by chance b12 deficient abnd took a special interest.

He also could not manage on 2- 3 monthly b12 injections.

Was amazed at so little known. Medical papers to read ect.

He died this year

Not expected

Not covid.

Quite a shock.

Wonder what happens to thises records. More chasing.

Have copies of letters .

He condoned hghy frequency of b12 injections .

[Hidden in reply to Nackapan]

I worked in accountancy so maths not a problem,Auditing computer records always backed up by a paper trail.

Some one asked why did I do gardening when I always complained of a bad back.

The answer "if you dont use it you lose it "