Beware the Paper Clinic

[Foggyme]

Hi all...don't know what happens in your health authority but I've just become aware of something called 'the paper clinic'!

Following recent endoscopy and colonoscopy examinations I noticed that the colonoscopy report (which was handed to me at the time) concluded with the phrase 'refer to paper clinic'.

When I returned to the clinic (because of abnormalities found during the endoscopy), I asked what this meant.

I was told that when test results are found to be normal, no follow-up appointment is given and the patient simply receives a letter informing them of the results (the paper clinic!).

This, I was told, is becoming normal practice in all out-patient clinics.

This means that any follow up questions you have can never be addressed. It also means that if you still have symptoms for which no cause has been found, further investigations will not be undertaken. It also means that you will be unable to a) ask for a second opinion or b) ask for an onwards referral to another consultant (or a letter to your GP asking for this) or c) discuss any ongoing concerns or explore other reasons for your symptoms.

Missing this step is especially important if you want an 'out of area' referral since local Clinic Commissioning Groups will often refuse to do out of area referrals unless this is requested by another hospital consultant, due to funding issues! (This is certainly the case at my GP surgery).

This is so bad on so many levels! I never ceased to be amazed at the ingenious ways that the health service finds to make 'efficiency' savings. Usually at some cost to the patient (we all know about that!).

So, in future, I shall be asking all my follow up questions, before the follow up! I will also be asking about what further actions will be taken if all the tests are 'normal'. I will also specifically request that a follow up appointment is offered, Oh, I will be so popular 😀.

I really hope that this is not being repeated in your health area!

It seems that 'test result driven treatment' has reached a new level!

[Withattitude]

Hi Foggyme, that is truly shocking! So you get one shot at getting your health sorted and if that doesn't work, you're left to suffer - that's outrageous. I despair.

How are you?

[Foggyme Administrator in reply to Withattitude]

Hi Withattitude. Outrageous Indeed. I'm pleased you said that 'cause I was beginning to wonder if it was me having unrealistic expectations!!!

We read such terrible thing here that after a while we just expect this kind of result - 'cause it's all we ever seem to get!

Bad, bad, bad!!!

I'm doing a bit better now the horrible side effects from the ranitidine have worn off. Had three (!) hospital appointments this week so absolutely exhausted now (so much sleeping being done). But I expect To be less tired by Monday. If you can remember Willy Wongbat - that's me!

And thanks for all the brilliant stuff you emailed - will reply to that when I done enough sleeping!

Take care Withattitude the Brave 😀😀 xx

[Lisahelen]

Id like to know how you get on asking questions. i suspect you wont get any answers. it will be the standard reply of: lets see if this test shows anything first!

[Foggyme Administrator in reply to Lisahelen]

Now then Lisahelen, were you by any chance a fly on the wall at my neurology appointment on Friday?

Yes, I asked lots of questions...and guess what he said...'see if this test shows anything first'.

And when I was leaving and asked about a follow up appointment, he said 'I'll write to you'...so if all 'normal', looks like the paper clinic for me 🤔🤔 . Again.

You couldn't make it up!!

[Hidden]

Foggyme I've recently obtain bloods going back to 2013, on reading them I've found out that ! it was recommended for me to have vitamin D during autumn and winter months. Also more alarming kidney results down as stage 1 CKD, now stage 2, no action if no symptoms. GPS have never discussed any of this, have until recently been on lithium for approx 14. Years and had toxicity three times, now being referred to kidney specialist. This is just couple of cock ups I've found out about relating to my health. Lesson learnt always get full report of bloods and copies of any letters

Now moving to new practice and hoping their a lot better

[Foggyme Administrator in reply to Hidden]

Hi Nagged. Really sorry that you've had such bad 'care' from your GP. I really don't know how they can get it so wrong. It beggars belief.

And I know exactly what you mean. I've been caught like that too.

When I applied for my medical records from GP's surgery, I found a string of result that were reported as normal - they weren't! Some detailed follow up tests that should be done, which weren't.

Like you, I now get copies of everything.

Hope your new GP is more on the ball and gives you the care and attention that you should be getting.

Take care 😀.

[Hidden]

Foggyme looks like there's lots of us not getting right health care, have just posted some of blood results to PAS admin to see what they make of them.

Fingers crossed new practice will know what there doing

[Foggyme Administrator in reply to Hidden]

Nagged, there are so many of us...its heartbreaking...the NHS is so broken...and when one good medic pops up it gives us all such a lift 😀. And a bit of hope.

Keeping everything crossed for your new practice (and the blood results)... Please let us know if how it goes 😀 Xx

[Hidden in reply to Foggyme]

Foggyme thanks will keep you posted

[humanbean]

Thanks for the information about the paper clinic. It's new to me, and I like to know these things!

[Frodo]

Thanks for the very helpful information - it explains the gaps in my treatment and unanswered questions that were puzzling me. For example, a usually good GP kept fobbing me off when I asked for a referral (2nd opinion) to a different specialist out of my area, but didn't explain why - just kept saying they were 'too busy' to look into it (over five months and several appointments!). Unfortunately I'd previously seen the classic disinterested neurologist who'd then given me one of these letters you mention (without any tests), so it sounds from what you say as if this blocked future treatment. I did manage to get my referral from the other GP but had to pay. The specialist recommended a scan the GP didn't want me to have. They then told me they weren't allowed to refer me for this, but I found out from the specialist that they were, and had the scan. I do have follow up questions after that as well but can't see anyone who can answer them.

It's really a big problem that we're left with unresolved medical issues and questions in these situations and no follow up.

I watched the recent programme on TV about over diagnosis and over prescribing. It was interesting, but the way the doctor/presenter dealt with it was to spend a lot of time with each person and looked at their issues and changing their whole lifestyle which could never happen in the current system of 10 minute GP appointments. I disagree that the root of the problem is over diagnosis and over prescribing: the primary problem is an initial incorrect or non diagnosis ("stress, depression, overwork"), THEN prescribing medications which lead to the original condition or conditions being masked, while they are worsening, and then the medications themselves causing new problems, which then need more medications in their turn. May have strayed off topic there, sorry!

[Withattitude in reply to Frodo]

I think you're spot on! What we all want/need is the kind of one on one care that the patients in that program received and what generally happens is that we get treated by individuals who are pressured, not knowledgable enough and focussed on targets.

I've done my best to stay healthy so that I don't need the NHS, but now I do and it isn't working for me. So sad and very frustrating.

[Foggyme Administrator in reply to Withattitude]

Well put Withattitude. Most here will echo those sentiments. Unfortunately.

It's so good to have each other...it would be even better if we could also have some decent healthcare! It's not a lot to ask!

Keep well 😀

[Foggyme Administrator in reply to Frodo]

Hello Frodo. I don't think you strayed off topic. It all goes to the overall 'theme' of people with chronic health issues being unable to access appropriate health care and get decent medical treatment.

What you say about your experiences exactly mirrors mine and I'm exceedingly cross on your behalf!

The whole system is broken. No diagnostic skills, a narrow regime of 'standard tests, the 'blasé' approach to patients health (and wellbeing), ill informed medic's, the arrogance and hostility shown to people who educated themselves in their own conditions...and yes, inappropriate prescribing...I could go on and on...

Not only does this result in negligent 'care' but it also heaps inappropriate costs on to the NHS (the constant re-referrals to different consultants 'cause none can bothered to get to the root cause of problems).

If I was put into one hospital and given carte blank to reorganise, I bet I could shave missions from costs...and deliver clinical benefits to patients😀.

And I know exactly what you mean about classic disinterest...been there, felt that...it's so humiliating and demoralising.

Like you, I've been trying to get help now for over eighteen months but I'm still no further forward, and getting slightly worse, day by day! I've also tried the private route - little joy there so more money wasted (but that's okay 'cause health care is free at the point of contact! Ha!

And I dread to think how much cost is incurred as Local Commisinging Groups argue with the NHS over who will pay, and in the meantime leave patients to drown in a sea of ill health.

And you're dead right - nobody looks at patients as a whole being anymore. We're treated as a collection of different bodily systems that function in isolation to the whole: and nothing could be further from the truth of how the body works!

Well Frodo...thank you for prompting my rant...sometimes I just think I've got it all wrong but your words help to give me the courage to keep battling this awful system of none care.

I guess all we can do is keep fighting for what we deserve and are entitled too...it's just such a long and hard road, isn't it.

Thank goodness for this space and the people in it. Think I'd just sink without it.

I really hope that you eventually get the answers you need to help make you well.

Take very good care and please let us know how it goes 😀.

[Frodo in reply to Foggyme]

Agreed, this is an excellent group. Hope you get somewhere with your treatment.

I've said on another post that I think chronic, long term complicated conditions need to be seen in a different way, in a dedicated clinic with longer appointments. It really doesn't work to try and "compete" for attention in a busy GP surgery which is really set up to spot red flags and emergencies, eg when my son had appendicitis he was fitted in, diagnosed, sent off to hospital straight away (at the hospital everything slowed right down to a crawl, but that's another story).

I've been made to feel guilty because my condition is not as serious as someone else's, so why should I get my treatment funded?

I shouldn't have to compare myself, my illness or disability, my level of pain, to someone with a congenital disorder or cancer and decide not to ask for treatment because of that. Especially when the funding issues faced by the health service are beyond my control.

[Foggyme Administrator in reply to Frodo]

Thanks Frodo. And you're dead right again.

In any other sphere, the way we (and most patients with chronic disorders) are dealt with (I avoid the term treated) has a one word definition: Discrimination.

Good luck with the ongoing fight and take very good care x

[Coastwalker]

Good for you Foggyme, thanks for pointing that out to others.

[Foggyme Administrator in reply to Coastwalker]

👍

[MariLiz]

Thank you for bringing this to our attention! It explains why everything is such a struggle. One of my friends is currently being "bounced" from one consultant to another like a "hot potato". Not one of them seems prepared to operate on her as she has so much scar tissue from previous ops. So she's high risk, and none of them want the problem. Meanwhile she gets worse. I'm disgusted at the way she's being treated.

[Foggyme Administrator in reply to MariLiz]

I'm so sorry that your friend is being treated like this MariLiz. And yes, it is disgusting...and there are lots of other nasty words I could add!

The only suggestion I can make is that she finds out the name of the hospital's clinical director for the services she has accessed (NHS trust in question will have a website) and writes a strongly worded letter of complaint, giving details of each consultant appointment and the outcome. She should also outline (if possible) the treatment she expects to receive (with evidence, if possible).

If she does this it would be a good idea to give a a date by which time she expects a reply (the reply should include proposed remedies). Often, the claim that escalation to NHS England and / or MP's will occur following said date, focuses their minds' a little!

The hospital concerned should also have a complaints procedure (again, should be online) - might be worth looking at that.

Most hospitals also have a Patient Information Liaison Service, which also deals with patient complaints - again, worth a look.

The problem with today's health service is that no one wants to deal with patients termed 'high-risk' because of the impact on 'stats' (and what a multitude of sins that covers), budgets, and possibly the consultants own professional indemnity insurance arrangements (high risk patients may cost more!).

Again, I'm so sorry your friend is in this awful position and hope that she manages to find someone who is prepared to offer her the treatment that it is her right to expect.

Good luck to you both x

[MariLiz in reply to Foggyme]

Many thanks for your helpful advice. I will make sure I pass this on to my friend. I hope she has kept records of all the consultations and the cancelled appointments too. This has gone on for far too long. MariLiz x

[Foggyme Administrator]

Hi MariLiz...if she hasn't got that information, she can always apply for a copy of her hospital medical records. It's her right to have these but the hospital may make a small charge.

In any case, it would probably be very useful to get a copy as this will help her to understand why she is being 'shuffled around'...she'll also be able to make a better informed complaint!

The very best of luck X

[JGBH]

Indeed this is what is called a "get rid of patients quickly and prevent them from returning " policy put in place by unknowledgable and useless managers. In fact the U.K. Health service is quasi non existent! If you are interested read The Times of yesterday, page 4: The NHS putting savings ahead of saving patients'lives .... making cuts while fobbing off patients that "restructure " will be much better for patients' health!!! Who do they take people for? Very scary and frustrating.