NHS Persistent Physical Symptoms website (North and West Cumbria)

[Kati]

(Not a recommendation)


It started with a google alert which led me to this article:
http://www.timesandstar.co.uk/news/...-pain-afbed80d-8434-4770-915f-27781c13f63f-ds

A new website to support people living with chronic pain in north and West Cumbria has gone live.

It aims to help people manage persistent pain caused by conditions such as chronic fatigue, fibromyalgia, irritable bowel syndrome and medically-unexplained symptoms.

The support website has been developed by the Persistent Physical Symptoms Service (PPSS) at Cumbria Partnership NHS Foundation Trust for patients and health care professionals to get hold of advice and support quickly and easily.

Elspeth Desert, clinical director for PPSS, said: “Having this fantastic resource available for our patients and colleagues here in Cumbria will ensure we have the best tools available to improve the quality of life of the hundreds of people in the county currently living with persistent pain, fatigue and other conditions.”

Dr David Rogers, medical director at NHS North Cumbria Clinical Commissioning Group, added: “There has been a lot of work across the system to ensure we provide the right kind of service, offering a range of support for people who experience persistent, and often medically unexplained, pain and other symptoms.

“The service provides comprehensive evidence-based support, using a range of professionals, from physiotherapists to psychologists.”

The website – https://ppss.cumbria.nhs.uk/ includes advice, new research and patient stories.

Those running the service say there is a vast amount of current research available to clinicians and patients, looking at what is now known about the causes of pain and what can aide recovery.

This can help to provide patients with the resources and tools they need to self-manage persistent symptoms and achieve a better quality of life.

Patient stories featured on the website explain how individuals have successfully managed their symptoms, often having lived with them for a number of years.

And this led me to their website...
https://ppss.cumbria.nhs.uk/


and if you look down at the bottom of the first page, you will find this...

Is the PPSS Right for Me? (Persistent Physical Symptoms Service)
If you say “Yes” to many of the questions below, then our service may be able to help you. If you would like to be referred to our service then please discuss this with your GP. They will be able to refer to you us.

• Have you been experiencing Persistent Physical Symptoms for more than six months ?
• Have you been given a diagnosis of Chronic Fatigue Syndrome (ME), Persistent (Chronic) Pain, Fibromyalgia, Functional Neurological Symptoms (including non-epileptic seizures), Medically Unexplained Symptoms or Irritable Bowel Syndrome?
• Have you had medical investigations and treatments which haven’t really helped you to manage your symptoms?
• Do you feel your symptoms are stopping you from living life the way you would like to?
• Are you suffering from low mood as a result of the impact the symptoms are having on your life?
• Are you having to stop taking pain medication, or would like to stop?

 

[Esther12]

How nice of them to provide anecdotes about recovery but no references to any credible evidence that they're able to help people recover.

 

[taniaaust1]

Functional Neurological Symptoms (including non-epileptic seizures)

Id like to know what percentage of ones who have seizures do they manage to fix their seizures without seizure meds? Maybe someone should mail them and ask them this, Id like to see what response they'd give.

How about for IBS? How many of those have their IBS go away?

This place sounds like miracle workers who are able to cure things not usualy at all fixable. I wonder if their miracle cure rate is on par with those who go to church and pray for a cure.

Its irronic how medical places seem to be able to probably make all kinds of false claims about what they can treat and fix but if a non medical person made the same claims he'd be in trouble.

 

[Snowdrop]

I hope the good people of North and West Cumbria learn to avoid this service like the plague that it's likely to be.
Just as an aside, I'm wondering if it would be prudent to start taking account of how many people PPSS covers. Are there really so many people out there with unexplained physical symptoms or is it just we pay attention to this so much?

**There are times when I read this stuff and just want to scream 'make it go away'. Enough already.

 

[taniaaust1]

https://ppss.cumbria.nhs.uk/patient-stories listening to Simons Story of his recovery "now Im between 70 to 90% back to normal" (catches himself probably due to the brain washing) "and its more 80 to 90%"

then he talks about his mountain climbing experience and says "I feel like Im completely recovered".

So is he recovered? I think not. Is he counted then as one of their completely recovered ones? when he has 70-90% er 80-90% recovery?

I wouldnt say he's recovered but he certainly seems better some probably due to they have taught him to stay in his limits (he did say they taught him his limits, other videos talk about pacing and mention the spoon thing, so many spoons per day). I do agree "good pacing" may aid "improvement" so maybe this service could help someone how isnt pacing themselves well.

Lets not have the word "recovered" being used for people who are not actually recovered. (its bad for our politics to do so). We should protest every time its being implied someone recovered when they clearly have only improved

 

[taniaaust1]

Looking more at the videos it their therapy doesnt sound too bad, they are actually teaching by the sounds of it people to find their baseline and learn their limits and the importance of proper rest.. so I can see how some are "improving". I do think that some esp ones who still are pushing themselves a lot are worst then they would otherwise be due to not having proper rest periods in their day and not pacing well and trying to do too much.

They are calling it pacing and its coming across as GET some but by the sounds of it it but may be more actually working out what your limits are for that point of time and pacing right. By the videos of people gone throu it, it sounds like they are teaching to accept ones limits (that's not a bad thing)

I'll all for having people reduce pain killers as I think in some of us that reducing the pain by drugs can actually be harmful as it then allows us to do more then we should be actually doing ME wise, ignoring or blocking out ME symptoms often isnt a good thing. (its like those of us who take stimulants to get throu the day, this too can lead to us doing more then we should).

Does that website actually talk anywhere about "curing"? (or does it only mention support and improvement?

 

[Esther12]

Does that website actually talk anywhere about "curing"? (or does it only mention support and improvement?

They introduce their 'patient stories' with "Every patient is unique, with their own symptoms and ways of dealing with them. However, some of our previous patients wanted to share their experience of the service and their stories of recovery with you. We hope this will reassure you about how the service can help with your symptoms, too."

Of Simon they say: "This is his story of recovery."

For Julie's story they have: "This is her story of recovery and the tools she found most helpful."

Then there is the "Why Emotional Support is Vital to Recovery" section.

Unless they have good evidence that they can help people recover, their presentation of those anecdotes looks pretty dodgy to me.

 

[A.B.]

For anyone that doesn't yet know, persistent physical symptoms is a harmless sounding way to say somatization.

 

[NelliePledge]

For anyone that doesn't yet know, persistent physical symptoms is a harmless sounding way to say somatization.

yep PPS is what the Medically Unexplained Symptoms people are changing it to now it has dawned on them that MUS as a term is something that could be used against them showing their insensitivity and lack of awareness of research findings

all I can think of when I read PPS is FFS

 

[Snow Leopard]

The website looks quite persuasive, I can see why people might be tempted to "Have a go" if they aren't the type of person to ask for scientific evidence.

 

[Snowdrop]

Sigh. You'd think by now people would know persuasion is a sales technique it's meaningless blather.
Time for a well placed article deconstructing the PPS market.

 

[lilpink]

Somebody I know has just summed up a major problem with PPS/MUS/BPS model quite amusingly with the acronym SSP –


PPS risks/promotes SSP. Let me explain.


A major problem with PPS is that it risks/promotes SSP of patients by their doctors. SSP stands for ‘Sudden-onset Swivel-chair Psychoanalysis’ …...I expect most people on PR have experience of SSP. The doctor has a lightbulb moment – ‘I haven't the foggiest what’s going on here....... [sudden lightbulb moment].....oh, my patient’s most likely one of those MUS/PPS psych cases….. I need to investigate this FAST’…..swivel….. ‘and face-to-face’ …..concerned look….... probing psych questions.


Patient thinks…..’this is a bit of a weird tangent….I thought we were supposed to be talking about my pain/fatigue/odd symptoms……but they DO seem very concerned about me.’



From the Cumbria PPSS video clips it seems that a fair proportion of the doctors featured may be predisposed to SSP (or pre-programmed even). Likely they’ve had little good (emphasis on good) psych training, but are fully charged with BPS propaganda from the ubiquitous MUS training sessions/conferences/workshops.

 

[A.B.]

@lilpink A little joke: conversion disorder is when the doctor converts diagnostic uncertainty into certainty by convincing themselves that the patient must be communicating emotional distress through physical symptoms.

 

[lilpink]

A little joke: conversion disorder is when the doctor converts diagnostic uncertainty into certainty by convincing themselves that the patient must be communicating emotional distress through physical symptoms.

Yes ... but it's not much of a joke

 

[Cheryl M]

So one of the GPs at my clinic (one of the unpleasant ones) referred me to the Persistent Symptoms Clinic in Keswick. A friend who also has ME got a referral to the Carlisle one and was seen very quickly; she was astonished when I told her I'd been on a waiting list for a year. (I was not astonished, as the Keswick hospital has form in this area.)

At the assessment last year the team made vague promises that I could have counselling (which would be pretty useful) though they said that family therapy (ditto but even more so) would be difficult to obtain. Well, they have finally written to me offering an appointment with a Cognitive Behavioural Therapy practitioner.

Is there any point at all in my going to this? I mean, theoretically I am aware that CBT can be used to deal with e.g. chronic pain, or the terror that comes when you have tachycardia and it feels as if your heart is about to stop working. However, I suspect the thought techniques would come with a hefty dollop of "your disease is in your head and you can defeat it by thinking positively".

I wrote to the team in March to ask about the delay and to inform them that my dementia (which has been progressing steadily over the last five years) had worsened. They replied with (I paraphrase) "You are in a queue and also STFU, ME does not cause dementia". I suspect (despite this!) I know more about ME than they will ever learn. Just thinking about the issue makes my blood boil, which is seriously bad news as it makes the aforementioned tachycardia even worse.

PS I went to their website to check out their inspirational patient stories. To my amusement, these were virtually all in video form and therefore inaccessible to me - has anyone told them they have ME patients?

 

[TakMak]

I've been offered a referral to Carlisle's PPSS several times now. I've declined on both occasions being less impressed by the psycho-social model they appeared to follow. However, they have improved their webpages over the last year or two, so it does look perhaps more suitable. I'm not convinced though. Even so, I have been tempted just to try it out. But I don't know if I can be bothered. I'm getting a little peeved about the lack of proper interest shown by local practitioners of late.

I did take up an offer of CBT a few years ago. That was through the First Step program offered by North Cumbria NHS. That was actually quite useful. It wasn't about rethinking false illness beliefs - we just talked about coping strategies and generally had a nice chat for eight sessions. I didn't actually learn anything new really but it did reinforce that I was doing OK considering what I had to deal with. There was certainly no 'ME is in your head' business from the lady I spoke to. But this was talking therapies delivered via First Step and not via PPSS. I don't think I'd trust PPSS to deliver CBT in the same way.

You can do self referral to First Step:

https://www.cumbriapartnership.nhs....-health/our-mental-health-services/first-step

I met my practitioner at Penrith Hospital but she travelled all over the north of the county so you can simply choose the most suitable place for you.

Just remember if they start to tell you your ME is in your head, tell them to stick it.

 

[Cheryl M]

Thanks for your advice, TakMak. I'm afraid the First Step ship sailed several years ago! Mental health services discharged me 18 months ago because they were fed up of me - they expect people to get better with time, not worse, and my condition is deteriorating all the time so...

I tried to get counselling from Mind but to no avail. (Possibly I am too prissy - if I went to the Workington centre I expect I would get to see someone sooner or later, but I thought, "Who wants to hang around in a mental health facility in Workington??" Not my idea of a spa day.)

One extra problem is that the appointment they have offered me is right before my Grade 7 piano exam and I don't think I can deal with the stress. If someone hit me with the "ME is a false illness belief" spiel I would explode with rage and be on edge all through the exam (which is going to be difficult enough anyway since my co-ordination is suffering and my arm muscles get tired). I suppose I could compromise by asking for them to reschedule the appointment for later.

 

[Countrygirl]

https://www.cumbriapartnership.nhs....-health/our-mental-health-services/first-step

Just remember if they start to tell you your ME is in your head, tell them to stick it.

They are instructed not to do this.

In the training modules I have watched, they are instructed to take care not to let the patient realise that they do not accept that the physical symptoms are routed in genuine pathology. They are encouraged to inform the patient that they know it is not 'in the patient's head', but real to them. ie. don't alienate the patient by making them aware that you regard them as a fruitloop. They are advised not to get into an argument about it,

In other words, they are instructed to mislead the patient.

I would ask them to provide evidence of their claimed research that supports their approach. No doubt they could only produce dodgy papers written by the BPS school which can be dismissed as not relevant to ME based on all the research papers we can produce to counteract their claims.

 

[TakMak]

They are instructed not to do this.

Yep I don't doubt that for a minute. The problem is that for the ones with whom I have had dealings, is that they just can't hide their real thoughts very well. I regard them much in the same way as I regard double glazing or timeshare people. I don't trust them. I think they probably mean well though - it's just that they think they are right and we're clearly wrong.

 

[Cheryl M]

The psychology department has certainly said weird things to me in the past, like, "I can see you're determined to find a physical cause for your illness" - as if wanting to fix the problem was somehow irresponsible...