E-petion on pain: we're looking for your views on the "Pain: Ask about it and measure it" petition

Jean Gaffin, the Pain UK’s Pain Champion for 2013, has started an online petition calling for the UK health authorities to improve the way they treat people in pain.

“People often suffer in silence – even when they see a healthcare professional. If asking about pain was as routine as taking a temperature or blood pressure, people living with chronic pain could be helped routinely and regularly to manage their pain and have it treated effectively,” explained Jean.

You can sign the e-petition by following this link: epetitions.direct.gov.uk/pe...

The petition needs 100,000 signatures to be eligible for a debate in the House of Commons and 10,000 signatures before it will prompt a response from the Government. So far, 2,097 people signed it, however Jean is aiming for as many as possible. The petition closes in December.

To help reach our target, we are looking to hear about experiences of people who have had GPs, nurses or other healthcare professionals ask about their pain and had pain measured regularly. We’d like to know what benefit this brought to your pain management programme? Did you feel better assured that your pain was taken care of and managed more effectively? Do you believe that this petition calls for an important change in legislation that will benefit thousands of people living with chronic pain?

Likewise, we would like to hear from people who do not have this sort of experience: we’d like to know if you think this is something healthcare professionals should be asking on a regular basis? How would you feel if your pain was asked about, measured, recorded and managed at every opportunity? What difference would it make to the way your pain is managed?

We are hoping to incorporate the views in our media campaign to help publicise the e-petition. To date the petition has been signed by 2,097 people. We are aiming for 10,000 signatures to get the government’s response, and 100,000 signatures to have it debated in the parliament.

Please leave your comments in the comment box below. Alternatively email us on [e-mail] with subject line E-Petition.

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[teadrinker]

I've had chronic pain for 9 years. It tends to get asked about at appointments where it is relevant, such as at the pain clinic and at appointments where the problem might be related to the pain, but that's only if the doctor has read my (very thick) file of medical notes and spotted the pain clinic section.

But at other times it is just not important for the pain to be mentioned, and I think it would be annoying for it to be brought up.

My other issue with being asked about chronic pain is the type of questions that might be asked and the attitudes towards and understanding of chronic pain of the person asking the question. It is usual to be asked to rate pain on a scale of 1-10, but in my experience, if you look OK on the outside but give your pain a high score you are less likely to be believed. I think some more careful questioning about whether or not the person feels the pain is manageable at the moment, or how it impacts on daily living or mood would be more useful.

Also, I don't think it's necessary to ask about it at "every opportunity". Maybe useful for people who don't go to the doctor much, but not for those of us who are too acquainted with our GP's waiting room as it is.

I think maybe it would be more useful to get a general campaign to increase awareness of chronic pain for health workers. And perhaps for every person with chronic pain to be offered a review on a regular basis with their GP or practice nurse to check that they are doing OK, and to refer them on if not. It is very easy to suffer in silence, and I certainly think that regular reviews of medication are important.

Finally, from the point of view as a health worker, we are often expected to ask patients about a huge range of health issues which are not always related to the job that we do. This leads to a large amount of paperwork and less time to get on with dealing with the problem we have gone to deal with in the first place, and sometimes patients with a lot of health problems will be repeating the same things to several different professionals. So whilst it would be absolutely fine to ask about pain perhaps at a first appointment with a patient, to then have to ask about it every time over a long period when it's not relevant could be difficult. And for most of us, there is absolutely nothing we can do other than tell the person to see their GP. (Just for the record, I do my best to deal with any pain-related issues as they arise).

[Calceolaria]

Pain seems to be the last thing addressed by medics. I think a routine question is an excellent idea and prevents pain being swept under the carpet by medics. Some training for them too, please!

[BeccaWhite]

I have been dealing with chronic, disabling pain for 21 years.

I find the pain scale a nonsense and, quite insulting. Pain is relative as is how we all cope with it and show our faces to the world.

I have had some dreadful experiences and some dreadful medical staff that I have dealt with, over the years.

I think it is less necessary that they ask us about our pain levels constantly than learn more about the conditions causing the pain to arise in the first instance !

I have a great GP, for that I am eternally grateful, but I have been left to deal with, and manage, my own pain and conditions for most of this time. And that includes without being filled full of pain relief, I do have RSD/CRPS as one of my conditions, the worlds most painful disorder so I know a thing or two about being in pain !

I think education about why many of us are in pain might be a good start, there is a great deal of ignorance regarding conditions, in the medical profession.

[katieoxo60]

For many years I have had ongoing chronic pain with severe flare up at times, but it has never been addressed by the medical profession. I agree it is a more important issue than whether I smoke or drink. This is the first year my doctor has suggested that the pain limits my ability. Hope the petition changes the medical approach to pain in future.

[Poppy_Ann]

Hi PainConcern321 I signed it but it may be good if you put it up on the 38 Deg web site as they have a large email list to who they send out requests for people to sign petitions, this is their site:-

you.38degrees.org.uk/

I know they have had quit a few petitions accepted by the government with several hundred thousand signatures.

I know how it is about long term pain and that doctors just say "yes i know you have a lot of pain but that is long term and nothing i can do about it" and then ignore anything you say, I damaged my back whilst in the army and have had pain on and off for close to 34 years but for the last 12 i have been unable to work and this last two i am not far from housebound but if i mention it to my doctor he ignores it he just wants you out of the surgery as fast as you can move i think they get paid by how many people they see and don't try to give them two problems at the same time or its "sorry you will have to make another appointment for a second problem. I have been out of the country for several years and only went to see my doctor once a year when i visited so i was not one of the ones who are always at the doctors i went in a few years ago and as soon as i said i have two problems the doctor just said sorry i am behind due to having to teach one of the new doctors and can only give you a couple of minutes in the end i went to the practice manager and made a complaint and then they gave me a second appointment for the next week, it is time something was done about the way we are treated i know doctors have a lot of patients but that is their own fault if they did not sign on so many people then they would have more time but it all comes down to the money and as they get paid for how many patients are on the books it will always stay the same.

I wish you luck on your petition.

regards Poppy Ann.

[johnsmith]

I looked at the pain petition. It has no relation to how I handle pain. It could create a lot of pain experts who dictate they know better to patients because they have studied a subject called pain.

As a student of the Alexander technique and various other physical therapies I can describe how pain is increased or decreased by the way muscles are used. This is outside the knowledge of most of the pain experts I have met. If muscles usage cause pain the latest pain killer is not going to deal with the cause.

The essence of dealing with pain is having the tools to investigate yourself. To investigate how sleep effects pain. How emotional upsets effect pain and what to do about the emotional upset which causes you pain.

The development of management skills to handle a health disability requires education to enable the management skills to be developed by the patient.

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I manage my pain myself as the NHS was only interested in dishing out ineffectual painkillers. Although in 14 years I have had 2 x 8 weeks of some foul painkillers to knock me out in a crisis.

I would like gps to accept that alternative therapies work on the feel good factor. Feeling good when you have chronic pain is important. The argument so far is that alternative therapies cannot cure, well gps are failing on the cure front too. They also argue that there is no evidence that it helps/works. I suggest they spend a day with an alternative therapist and meet all the people who go there who have been failed by the nhs. Anything that encourages mind and body relaxation will help anyone in pain and is much better for you than a chemical pill.

I would like to see sports physios (now my first port of call in a crisis) available on the nhs. They are the only medical staff I have come accross (other than vets) who understand the pain process and how to treat it. So much better than the physios in the back pain walk in service who work to a spec sheet with little variation to meet the patient needs.

I don't think I personally need to talk about my pain or have questions asked about it. I'm rarely at the gp. I am capable of discussing it if I need to. But for others who are faithful to the nhs, and are on medication, maybe a 6 monthly or annual review would be helpful, just to go over medication, ability/difficulties, etc as I do think some people with badly managed pain need more support.

I also think one member of staff in a gp surgery nurse or dr should be trained in chronic pain, to the same level a sports physio or vet is. Sad state of affairs when your vet can advise you and your gp has no idea what he's talking about. Was trigger points if you are wondering. Fairly common in everyone let alone those with chronic pain.

I would also suggest that the nhs provides training sessions for employers on how to employ someone with chronic pain. So many people are having un necessary stress at work because of ignorant employers. I'm sure a working group could be set up including the nhs, pain clinic,local council, local employers, occy health to provide the training and support.

I'm waiting til my children get through uni then I'm moving to Germany for a year. They have spa centres that treat aches and pains with a variety of alternative therapies on their nhs. What bliss to be prescribed a massage 3 times a week, hydrotherapy once a week and a mud bath once a month, along with other things. So advanced in pain management than the uk. Would be worth looking into it and adopting some of their ideas.