Performance Indicators in the NHS - Just one example

I had a letter this morning informing me that I'm now on the waiting list for a gastro-entrology clinic appointment, it was only requested about 18 months ago!

There is also the issue of NHS using private companies. Some of them do things like send out leaflets rather than seeing someone and charge for it.

Just an update on this …

I was speaking to a retired gp I know and they confirmed that this use of triage by clinics to reduce patient load and to make their performance look better is correct. 

I didn’t mean to make you cry; I hoped it helped though and I’m glad you said.
If anything needs to change to help you, I hope that can happen too.

On another thread I mentioned something further about my allergies.   After being triaged and rejected by the allergy clinic in Liverpool I had a helpful consultation with my gp. She has changed several of my meds including swapping out the regular ppi (for acid refux) for an older reflux medication which is additionally an H2 antagonist which is one of the histamine receptors. H1 is the one which all the regularly prescribed and otc anti histamines target. Im using this H2 antagonist in combination with the H1 antagonist I was already prescribed but without the standard ppi. So far there is a very observable improvement in the presentation of allergy symptoms and without a return of the reflux. 

I have avoided using medication names in order to try to stay within the rule about not giving medical advice. 

Re the ami - I have a friend who was totally wiped out by it much as you described and had to stop taking it, fortunately it works for me as both a pain reliever for fibromyalgia with possibly a contribution to my improving mental health  

Best wishes 

Alice 

You are very kind (I cried a little when I read this, probably as I'd had a bit of a wretched day this week).

Cinnabar_wing said:

Anytime I've been to the doctors, they just make you feel you shouldn't have come, and I wouldn't trust talking to them about mental health issues. (I almost called them this week for something but didn't, I'm terrible at self care, much easier to look after everyone else!)

I know what you mean about feeling you shouldn’t have gone to the doctor. Sometimes the “bedside manner” leaves a lot to be desired. The doctors in my GP surgery are generally good, but there is one who isn’t so I avoid them. I bet you are one of the least demanding patients a doctor could have. You are definitely very caring towards lots of people here but you deserve also to be caring toward yourself. I think they way the NHS is at the moment, patients need to be persistent when it comes to making their doctor realise what they are experiencing. 

What the NHS says it offers and what happens in practice are two different things. 

My understanding of the acupuncture Ive received, both by gp and a paid for physiotherapist is that works in two ways:

1. on my trapezius muscle in left shoulder which often contracts painfully so the acupuncture un locks the tension in it (sorry about vague none medical words) 

2. The acupuncture causes the release of pain relieving hormones. 

It's incredible that they just kept trying to 'cure' something you weren't diagnosed with (OCD), and shows how blind professionals can be to not consider if it could have been something else (autism). Also if the standard approach wasn't working, it should have been on them to try a different approach, rather than just claim you weren't engaging (which sounds like someone not turning up or refusing to speak). I'd be upset about that too so you are fully justified! It's like if a drug doesn't work, the doctor would try prescribe something else instead, not say your body isn't engaging so they won't help you.

It just doesn't make a lot of sense to me really the way they handle mental health, it's like treatment is all lumped in as one 'mental health' banner. Imagine they did that with the body, 'oh we treated you for a broken foot before, now you say you've broken arm, I'm afraid you've already used up all your time with radiology so you can't get it x-rayed. 

I will confess I've never dealt with nhs mental health services myself so sorry for Sam inaccuracies, I tend to avoid going to the doctors like the plague for any reason. Anytime I've been to the doctors, they just make you feel you shouldn't have come, and I wouldn't trust talking to them about mental health issues. (I almost called them this week for something but didn't, I'm terrible at self care, much easier to look after everyone else!)

I think though if you do feel you need something from the doctor and they don't listen, you have to keep going until they believe you. I can't follow my own advice, but I know others with things like abdominal pain had to do that as they kept getting written off as 'female pain'. It took a long time for them to get surgery to help.

Even 16 sessions isn't enough time to deal with complex issues and my memories of NHS counselling were that you had a 45 minute session, which isn't long enough either. I've had counselling clients that are just begining to trust after 6 or 8 sessions, people who've suffered serious trauma don't give thier trust lightly or easily, I'd actually hesitate to start counselling at all if the sessions were so limited, it could very easily stir up a lot of stuff that you then have nowhere to go with, leaving in as bad a place or even worse than before.

Are they still offering CBT as the cure-all?

Cinnabar_wing said:

They don't do that with physical medicine. Imagine how absurd that would be 'oh that rash came back, sorry we treated you for it already.'

I have a copy letter from my GP, from years before the incident I described in my OP, which states that all psychological intervention and medication has been futile. Perhaps my poor mental health is being treated as equivalent to a long term physical disability with no cure. I agree it feels absurd, especially when there are things out there that could help, but the government isn’t interested in improving mental health services. 

Perhaps if the NHS psychologist hadn’t given me 40 weeks psychotherapy for OCD (7 years ago), I might be in a different situation (The psychiatrist had referred me to them for depression and anxiety). My GP later said that I was never diagnosed with OCD and I understand now that my ‘strange rituals’, to quote my GP, are actually repetitive behaviours which I enjoy or use if I’m stressed, and they do not cause me distress in the way OCD behaviours might.

So the NHS psychologist took it upon themselves to incorrectly tell me I was OCD when they didn’t have the authority to diagnose me, and that detail was left off my hospital records. Five years later I hear “I didn’t engage with the service” (not true). No wonder there is a mental health crisis with the nation!

The accupucture done by the NHS isn't traditonal accupuncture, but the one developed after the cultural revolution to be more like Western Mediciine, it treats symptoms not causes mostly.

I'm having another accupuncture session today, so I'll let you know later how I get on.

I can't have amitryptaline, the lable on the packet said don't operate machinery or drive if you feel woozy, I couldn't operate a dustpan and brush, I sat in front of the stove for about 20 mins wondering why I was there and what I was supposed to be doing. Why are so many treatments as bad of worse than the condition you're taking them for and were expected to take them for years?

Cinnabar_wing said:

I don't really understand why they say, you can have a 6-8 weeks, then that's it, you don't get more sessions even if you need it, or if what you are dealing with takes longer to address.

The NHS says:

"If you get counselling on the NHS, you’ll usually have between 8 and 16 sessions."

NHS - Counselling

Based on (their assessment of) my needs, my own course of post-diagnostic NHS counselling was extended several times - eventually going beyond 16 sessions.

I'm glad you've had that at least and the outcome was good for getting diagnosed, but definitely, you don't just fix deep traumas in a few weeks.

I don't really understand why they say, you can have a 6-8 weeks, then that's it, you don't get more sessions even if you need it, or if what you are dealing with takes longer to address.

They don't do that with physical medicine. Imagine how absurd that would be 'oh that rash came back, sorry we treated you for it already.'

I contacted the clinic that my GP had referred me to but they said they didn’t know of anything about my referral or the letter.I suppose that could be, but somebody sent that letter.

I received around 6 or 8 weeks counselling at the GP surgery.  The counsellor picked up that I could be ASD which ultimately lead to the GP’s referral and diagnosis, so that was a good result. I could really do with something further.

It sounds like by not putting down any contact details they pretty much guaranteed they could say you hadn't engaged with them, as they didn't give you any means to. Anywhere method of keeping the books clear, it wouldn't surprise me if the manager gets a bonus for that.

I hope you have managed to find something since, support seems to be so thin on the ground.

If waiting times are being manipulated in order to create a different impression from reality, I agree it’s deceitful and potentially harmful for patients.

My GP referred me to mental health services over two years ago. I received a standardised response on partially headed paper and three leaflets. The letter heading showed the name of the Health Trust to which my GP had referred me, but no address or contact details and the letter wasn’t signed. The text was very blurry (a photocopy of a photocopy X multiple).

The text said that I should contact one of the agencies named in the enclosed leaflets. These were voluntary agencies and charities. I contacted all three agencies. Two had closed several years earlier, but a very nice man at the third agency telephoned me and said they weren’t set up to deal with me as they dealt only with victims of certain types of trauma. He was furious with the Trust and he said that I and others in the past had been referred to him because the Trust couldn’t do its job and it couldn’t be bothered to deal politely and properly with people. The man hadn’t even received a courtesy call from the Trust.

Some time later, my GP received a letter saying that I hadn’t engaged with the Health Trust service and that I had been discharged. That was untrue. I did my best to follow this up but everybody I spoke to passed the buck and told me different stories. It’s really shocking because it feels like an assault on my character, it’s lies and I’m powerless.

I sooooo relate to you. I am diagnosed with fibromyalgia and Im fairly sure because of the mis firing nervous system my allergies are made worse. We had a pain team in our town but they discharged me after three token sessions with a young nurse. No disrespect to the young, or nurses, but she couldn’t have appreciated what I was going through, and had no answers when I asked her for more in depth explanations. I had been diagnosed by the rheumatologist at a clinic my gp referred me to, fortunately on a bus route from me. 

 I can take painkillers, have been on tramadol with paracetamol for a couple of years, but Im reducing the tram gradually as the amitryptalene (an older anti depressant (spelling ?)) and duloxetine (SNRI) are improving things. The pain is less frequent, less widespread and less debilitating.  I do though get hit with a wall of exhaustion most days early to mid afternoon. 

My spatial awareness is very poor and coupled with suicidal ideation which can coincide with meltdowns Ive lost my driving licence  

Like you I don’t think people believe me a lot of the time, I just cant find words that can objectively describe such a subjective bundle of sensations and feelings and pain. However my current gp does and we get on well. 

oh yes, 100% agree about physio.  But I know acupuncture works for (scientifically based not woo woo), so why can I be offered physio which doesn’t work, but not acupuncture which does! Thats a sort of rhetorical question as I know the answer having worked at on time public sector accounting, its just ridiculous  

Hope your day is going well, its very cold and windy here in the north west  

best wishes 

AnA

I know what you mean, I had a similar thing when I was having some GI problems the GP did her part of requesting a bowel cancer test and a referal to hospital. I did the test and it came back negative, case closed, no problem. I had a similar experience with the Pain Clinic, I spoke to a nasty nurse who asked "what I expected of them this time", they weren't interest that I was going to them for a different problem to the one they couldn't help me with before. The sum of thier advice was take painkillers, which I'm alergic too, have phsyio which was crap and exercise. I was told they don't deal with fibromyalgia and I'd have to go to a seperate group for that, the one she recomended had closed and I'd have to go to Llandudno, 40 odd miles away and not easily accessable.

I've never had proper allergy screening for all the things I'm allergic too or react badly to or are intolerant of, I've had to work it all out myself, I asked my GP if he could refer me to a specialist and there are so few allergy specialists he said he wouldn't know where to refer me too. When you've multiple allergies people get fed up with you and start disbelieving you and treating you like you're attention seeking and a pain in the bum, it never occurs to them what a massive pain in the bum it is for me, the things they stop me doing, the amount of money they cost me, does it not occur to them that I don't want to be the person spending mega bucks on laundry products and toothpaste and that I'd rather buy the cheap stuff from aldi like everybody else?