my sons pain

[sandra]

Hello Everyone, i really need some advice on this, so if anyone can help then please mail me.
my now 16 year old son, has been in and out of hospital for the last two years. he had a benign tumour on his spine which he had removed, it grew back and he had it removed again with a special scan during the op so they got it all so to speak. he had titanium rods put in his back. he was on paracetomol, codeine, diclofenic at this time after his op. he wore a special brace for 3 months. he went back to consultant and something was wrong so he went back in and had another op, different rods put in, all in all he had four ops. he now has permanent nerve damage due to all the ops and is on a drug called pregabalin. he gets like electric shocks down his back and leg and cant bear anyone to touch his scar which is a BIG scar, quite nasty to look at so i wont attach a pic. he started to take less painkillers and only had them when he needed them. his gp will not give him any more pain killers because he reckons hes addicted to codeine. he is not addicted to anything including codeine, he has now gone for 5 days without it and is not suffering any withdrawel symptoms whatsoever. he is in pain. surely if he was addicted to it he would feel poorly in himself. he has only ever taken 2 at a time, and i know because i give him his medication cause basically being a "lad" he cant be bothered to get his pills from the cabinet!!!!! have contacted pals but they say they dont know what to do! great help. does anyone here know what i can do, as i am getting to the end of my tether. i know my son, the gps dont, they even get his name wrong, they called him jason the last time he went, his name is matthew and we have been with this gp for 10 years. yes i know what you are going to say, change your gp, but the new gp will have matthews notes and you know that they all stick together.
thanks

[craigwalsh]

Hi, Sandra ---

Welcome to this new forum. Your son's (and your own) experience with the NHS are dreadful.

From my own experience, you are entitled (with some restrictions, none of which seemed unreasonable) to look at your own medical notes. I requested a copy of my own chart from the local hospital. The process was fairly simple: I was asked to fill out a form, to provide a photocopy of my picture ID, and to make a small payment (under £10). A photocopy of my complete chart arrived about ten days later.

As your son is 16, I'm not sure what the regulations say about your requesting copies of his medical records. You might wish to look at the website (http://www.ico.gov.uk/Home/for_the_public/topic_specific_guides/health.aspx) of the Information Commissioner. I found their helpline to be quite useful: 01625-545-745

In the case of my notes at the GP's practice, I asked to see the notes. The practice manager was helpful, and let me sit and read them.

With such open disclosure of medical records mandated by law, I think the bad ol' days of nasty, punitive comments in medical charts are (hopefully) over. And if you should find something like that, there are procedures in place to have the information corrected or deleted.

I would think that your son's GP would welcome a second opinion. While I haven't always been impressed with the mechanics of seeing a GP, and the fact that most visits are quite cursory, I haven't found the GP's I've seen to be the least bit reluctant to help me get a second opinion. Have you asked?

There are also an increasing number of Pain Management Units in the UK. I just received my appointment letter for an assessment visit at the Royal National Hospital for Rheumatic Diseases (http://www.bath.ac.uk/pain-management/) in Bath. I will know more about this programme in the next couple of weeks. Perhaps your GP will refer your son to a Pain Management Unit?

I am surprised that the PALS team didn't know what to do, and didn't offer to be more proactive. The NHS has a web page (http://www.nhs.uk/england/aboutTheNHS/complainCompliment.cmsx) with information on how to compliment and complain. In particular, you may be interested in the Independent Complaints Advocacy Service (ICAS) as they can assist you, at no charge, in preparing your complaint. See the ICAS page (http://www.dh.gov.uk/PolicyAndGuidance/OrganisationPolicy/ComplaintsPolicy/NHSComplaintsProcedure/NHSComplaintsProcedureArticle/fs/en?CONTENT_ID=4087428&chk=WoVmTf) on the Department of Health website.

I'm in the middle of a couple of formal complaints --- both with my local PCT and local hospital. I haven't been overly impressed with the handling of my complaints to date, but hopefully the NHS will pleasantly surprise me. At this stage I can't say that filing a complaint is going to solve your problems. I found the NHS was quick to falsely blame me for everything. I was the culprit, and not the patient.

As Dr. Crippen said on his excellent blog (http://nhsblogdoc.blogspot.com/2006/11/more-dead-babies.html):

Sometime last year a light bulb went on in the Department of Health Bunker. Some bright spark jokingly told Patricia that hospitals would be lot cheaper to run if only they did not have so many patients to look after. Patricia is not one for humour either and took the remark seriously.

With my PCT complaint, I am waiting to hear from ICAS and my intention is to appeal to the Healthcare Commission.

Of course, filing complaints does absolutely nothing to help your son medically. Up until recently I believed that my GP was the person who the "system" said would be responsible for my overall medical care. I have come to the realisation that my GP (when I see the same one twice, which is rare) is just too over-burdened to worry about me. I have concluded that the person responsible for my overall medical care is me.

I am tired of being growled at by inefficient and uncaring folks within the NHS. (Don't get me wrong --- there are lots of efficient and caring folks there as well. But they don't somehow "neutralise" the others.) I simply would like to be treated with a bit of courtesy and a bit of compassion: they way they'd like to be treated if the roles were reversed.

I hope these links are of some assistance, Sandra. Please keep us posted on your son's progress. I hope things work out for him.

[foxydebs]

Im a nurse and suffer from chronic migraines and my consultant has fastracked a referrall to the pain management team and im still waiting to hear, so dread to think what a non urgent wait would be. I had a patient the other day who was in agony, she was dying and had an alfentanyl syringe driver up but the dr on call refused to increase the dose or the prn dose as he said it would kill, so instead its ok for her to be writhing across the bed in agony, so we ended up going over his head to a senior colleague.

[craigwalsh]

The pain management unit at the NHS hospital in Bath scheduled my private visit within three weeks of the referral letter. I don't know how quickly they would have seen me if my visit were funded by the NHS, rather than by BUPA. I'd like to think the waiting period would have been the same.

[gp2]

"I'd like to think the waiting period would have been the same."-
in your dreams perhaps.
some PCTs are running out of money and requesting hospitals to delay appointments .

[craigwalsh]

I'd like to think the waiting period would have been the same.

Hi, GP2 ---

Welcome to the NHS Sucks forum. Thanks for taking the time to register and thank you for your posts. I look forward to reading more in the months ahead.

I didn't say that I really thought the waiting period would be the same. I just said I'd like to think it was the same. But I'd also like to think that there were cute little green Irish people at the bottom of my garden, tending to their little pot of gold.

Having suffered from chronic pain, it really ruins your life. And the fast-and-quick GP solution is to just write a prescription in the hope that an opioid or something will dull the pain. Trouble is, it also dulls the senses --- and, in time, the pain returns.

But the prescription process is easy. It takes a second to print off one of those green prescriptions and send me trotting off to Boots.

How dare the NHS not help people who suffer from chronic pain?

Perhaps a bit off-topic, but I remember watching one of those fly-on-the-wall documentaries several years ago about intensive care in the States. It was readily apparent to the viewer that the five or six people followed during the programme (and it was a long programme) were just not going to get better. This was the end for them. Yet their families insisted that every effort be made to keep them alive.

At the end of the programme they rolled credits that indicated that something like 1/3 of all medical expenditures in the States are on folks in the final week of their life.

I wonder if the same is true here?

[gp2]

"But the prescription process is easy. It takes a second to print off one of those green prescriptions and send me trotting off to Boots."
would you prefer to wait months for access to pain clinic, physio,CBT, or scan?

[craigwalsh]

prefer to wait months for access to pain clinic, physio, CBT, or scan?

Absolutely, positively not.

If people are in chronic pain, they shouldn't have to wait months (even "on the NHS") to see a pain clinic. To some extent, I imagine that a large part pain clinic programme could be run a bit like an Open University course. No, I'm sure this is not the best way of doing it. But doesn't it beat the alternative?

In my particular case, my GP knew that I had BUPA insurance coverage. My wife found the pain management unit in Bath, and they were ready to see me privately more or less straight away. My GP (at the time) initially refused to refer me, preferring instead to write me a prescription for Durogestic DTrans 50 mcg/hr transdermal patches (fentanyl), an addictive Class A narcotic. I was not told it was addicitive, and I was not given any advice on how to cope with the inevitable constipation.

I know I'm biased in this, having gone through it all myself, but I can't see --- in my particular case --- that fentanyl was preferable to the pain management clinic.

You know how the companies that make alcholic drinks pay to run "drink responsibly" advertisements? And how banks help to fund the consumer credit counselling services? Why don't we put pressure on folks like Janssen-Cilag (http://www.janssen-cilag.co.uk/home.jhtml?product=none&_requestid=199947) in High Wycome (who made my fentanyl patches) and NAPP Pharmaceuticals (http://www.napp.co.uk) in Cambridge (who made my buprenorphine patches) to help fund pain management clinics? If the NHS can't do it, why not something like that?

The Janssen-Cilag slogan, according to their website, is "Putting patients at the heart of everything we do." Their website (http://www.janssen-cilag.co.uk/bgdisplay.jhtml?itemname=credo) also indicates:

We are responsible to the communities in which we live and work and to the world community as well. We must be good citizens - support good works and charities and bear our fair share of taxes. We must encourage civil improvements and better health and education.


NAPP describes itself on its website as "A leader in pain management." Their core values are:

Napp is built on the principles that “people matter” and that “caring counts”. Our business culture is underpinned by our four core values.

These have been developed with input from many individuals within the company and are as follows:

• Honesty

• Respect

• Innovation

• Passion

I'm sure they're great people and would love to help with the funding of Pain Management Clinics as part of their "support [of] good works and charities" and in the spirit of "innovation."

[Sisterpayne]

I work as a sister for a pain management service (NHS) and I have a few comments on the above.

To the lady whose son is being denied painkillers - unfortunately it is a common misconception amongst lay people and many health professionals that people who require longterm medication for chronic pain are addicted. If the painkiller is being taken as prescribed, for pain, then addiction is extremely rare.
(Addiction and tolerance are different issues - I don't want to write an essay here!)

I don't know why your GP is taking this stance but the fact is that you need medical input to solve the problem of your son's pain. Who prescribed the pregabalin? It is one of the newer drugs for the nerve pain you describe and indicates a good understanding of pain management. So you need to go back and put the problem to your GP. If s/he is unwilling to continue the codeine, ask what the alternative is, ask for a second opinion, ask for a referral to a pain consultant. Don't accept that you have to go away with your problem unsolved.

To craigwalsh, I wouldn't dismiss opioid prescription as the reflex action of a lazy gp. As you're inevitably aware, there are no "quick fixes" for chronic pain, no either/or guarantees that any strategy will work. Opioid prescription alone, or in conjunction with a pain management programme is a perfectly logical option.

With reference to drug companies sponsoring pain clinics, I have the same response whatever they are sponsoring. I would not work in a situation where I felt that my clinical judgement was compromised by corporate influence.

And finally, our service is constantly under review and threat of staff reduction/redundancy. Pain management isn't an income generator, it is a quality issue. To a certain extent, patients in hospital expect pain and don't complain if it is poorly managed. Hospital and community services have a massive financial deficit and beyond the humanitarian principles of committed doctors and nurses (which managers don't share), there is no incentive to invest in a service that merely improves the patient experience.

That is why it is so important for patients to make the effort to highlight good experiences as well as bad.