Here is the News!
It is with a great deal of enthusiasm and excitement that Action on Pain is able to announce that it will again be heavily involved in the popular "Can you feel my pain? roadshows that will be visiting various locations across the U.K. Building on the success of 2009 the roadshows present a real opportunity for the charity to meet so many people affected by chronic pain. What is particularly rewarding is that we are able to make contact with the relatives/carers/friends and families of people with chronic pain. Ian Semmons, Chairman of Action on Pain said" We are able to reach out to people who may have never heard of a pain clinic and be blissfully unaware of what may be available to them. The informality of the roadshow is the key to the success of the project as people can talk to us in a confidential environment that enables them to get the best possible advice and support. An added benefit is that it raises the profile of pain in general which can only have a positive long-term impact"
Watch this space for the details of where the roadshow will be visiting
And there is more!
New survey shows patients resigning themselves to a life of pain
A new survey, sponsored by Mundipharma International Limited, entitled PainStory( Pain Study Tracking Ongoing Responses for a Year) has revealed that although 95% of chronic pain patients are suffering pain after a year of treatment (1), 64% believe they are taking the most appropriate medication and over half believe that everything possible is being done to help them. These results demonstrate that a high proportion of patients are accepting chronic pain as a permanent part of their lives that cannot be challenged, despite the suffering it causes.
PainSTORY is the first study of its kind to track the impact of ongoing chronic pain on patients' lives over the course of a year, and involved 294 patients from 13 European countries, including 25 patients from the UK who completed the 1 year follow-up.
Of the patients surveyed, the research reveals that one year on, chronic pain still controls the life of six in ten of them, with more than half the patients' pain levels failing to improve. For 17% of the patients surveyed, their pain got worse over the year. Patients' everyday life is affected most, with eight in ten of respondents reporting that their pain had an impact on their quality of life. Patients highlight ongoing challenges associated with childcare, with 53% reporting difficulties in looking after their children at the end of the research compared to 47% at the beginning. The research also reveals that pain has a significant impact on patients' ability to work: 65% worry that their pain will mean that they will have to stop work completely.
As many people with pain know, the emotional impact of pain is just as detrimental as its physical impact. Across the year, 44% of the patients surveyed report feeling alone in tackling their pain and two-thirds of patients feel anxious or depressed as a result of their pain. For 28% of patients, their pain is so bad that they sometimes want to die. Patients report feeling trapped by a pain which may vary in intensity, but continuously affects every aspect of their life.
Chairman of Action on Pain, Ian Semmons was asked to comment on the findings of the survey and said " This research presents an interesting insight into patients' year-long journey through pain. We have been aware for some time that treatment for chronic pain was underresourced, but this research reveals the full shocking extent of the problem, that after 12 months patients are still trapped in an ongoing cycle of pain and that a large proportion seem to be losing hope and simply accepting the severe impact their pain has on their lives"
PainSTORY survey results provide compelling evidence to support the earlier report by Chief Medical Officer, Sir Liam Donaldson, which highlighted that of the 5 million people in the UK who develop chronic pain each year, only two-thirds recover, and called for " a major initiative to widen access to high-quality pain services (2). More than 7.8 million people in the UK live with chronic pain, with back pain alone estimated to cost the UK economy £12.3 billion per year(3)
The survey findings point to a number of reasons for patients' ongoing suffering. Many patients may not be receiving the appropriate medication to control their pain-despite 95% of patients suffering from moderate to severe chronic pain receiving treatment, only 14% had been prescribed strong opioid medication at the end of the year-long research, with 30% resorting to over the counter (OTC) medication to try to manage their pain either alone or in combination with other therapies.
Patients' contact with physicians may also be less frequent than is needed. Despite the high proportion of patients continuing to suffer pain, the number of patients visiting a doctor declined over the course of the year from 83% at the beginning of the year to 70% at the end. Of the 68% of patients who consistently consulted a healthcare professional across they year only 2% had consulted a pain specialist consistently throughout the year.
About the survey
The PainSTORY survey was conducted by an independent research company, Ipsos MORI, in collaboration with the following independent third parties:
* European Federation of IASP Chapters
* World Institute of Pain
* OPEN Minds
The survey was sponsored by a restricted educational grant from, and prepared in association with, Mundipharma International Limited.
References
1) Treatment includes prescription medication, over the counter medication and alternative medication
2) 150 years of the Annual Report of the Chief Medical Officer: On the state of public health 2008. Department of Health. Published 16 March 2009
3) Maniadakis N, and Gray A. The Economic Burden of back pain in the UK. Pain 2000; 84 (1).
Read all about it-our new booklet has arrived!
It is great to be able to announce that our new booklet aimed at carers/relatives and friend of people affected by chronic pain is now available. This booklet helps to bridge the wide gap in the support available for people affected by chronic pain. Written in our usual "easy to understand" and friendly format " Waving the flag" gives a host of hints and tips which could make all the diifference to your day to day life. Copies are available from the AOP office on 0845 6031593.
Website Advertising
AOP has been carrying advertising on its website for the past few months in order to gauge the response from our visitors. The overall response has been positive along with a couple of observations realting to the type of advertiser which we have addressed. Based on this feedback we shall be continuing with advertising for the next year when we shall again review it.
Exciting new website
Think of Sheffield you think of steel or United or Wednesday. Well now is your chance to think "pain" Why you may ask? As part of the Sheffield Roadshow held at the Meadowhall Shopping Centre a fabulous new Sheffield based website for back pain was launched. Like Action on Pain it promotes the positive side of chronic pain by giving good practical advice on what you can do to help yourself and your back pain. Special features include:
* Patient information sheets downloadable in ten different languages
* Video and written resources to help self-management of back pain
* Specific areas for patients,professionals and employers
* Written and supported by local healthcare professionals.
So the problem is that you do not live in Sheffield! The good news is that this site is open to everybody so why not give it a visit?
You can find it at : http://www.sheffieldbackpain.com/
Action on Pain is pleased to be associated with this site by giving advice in the development stage.
Meet the team
AOP has been "out on the road" again with both the Mobile Information Unit and the display stand when we exhibited at the British Pain Society Annual Scientific Conference in Manchester Attended by around 600 delegates our stand attracted considerable interest with a healthy number of our booklets being taken away. New contacts were made and the Mobile Information Unit making a return visit to Manchester well received featuring in several photographs. Our relationship with healthcare professionals working in pain services continues to develop as a result of attending such events
The Healthcare Commission recently published a worrying report in respect of pain relief for children whilst in hospital. A staggering two in three hospitals do not give them proper pain relief and doctors and nurses without paediatric training often treated youngsters as "mini adults" One of the difficulties is that many children cannot describe their pain which surely means that NHS staff must learn to treat them differently. Once incredible fact contained in the report highlighted that almost two-thirds of NHS Trusts do not have enough trained nurses to give pain relief to children who came in as day cases. In addition more than a quarter of hospitals were 'consistently low performing' on pain relief whilst a further 14% were deteriorating. It would appear from the report that some surgeons and aneasthetists appear to be performing procedures on children without meeting the levels of work to maintain their skills.
One really has to ask the question " why has this situation been allowed to develop?" Surely it should be a basic instinct in any person to ensure that a child does not suffer from unnecessary pain especially when going into hospital. Yet we have clear evidence that this is not being achieved in some of our hospitals. Here at Action on Pain we have a member whose child recently had a dreadful experience undergoing an operation as a day case patient in hospital . The whole process was inept with basic breakdown in communication plus an obvious lack of training and insight into the needs of children from some of the medical staff. The complaints process was tedious but most concerning was the fact that some of the medical staff involved did not see what was going wrong so ploughed on leaving the child and parent in considerable distress.
There is a clear responsibilty on every NHS Trust to ensure that they have a credible policy in place that ensures that each and every child has access to effective pain relief delivered by trained staff who clearly understand the distinct needs of children.
If your child has had a similar experience whilst in hospital we would like to know. Please call AOP on 0845 6031593 in strictest confidence.
Forging strong links
AOP has been very active during late 2009/2010 building links with similar organisations and healthcare professionals across Europe as well as further across the world. A number of European based conferences and meetings are helping to develop an initiative across Europe which has the potential to help greatly assist people affected by chronic pain. With a lot of work being done behind the scenes and through networking the projects are moving at an encouraging pace with some positive outcomes being planned for the latter part of 2010. The benefits of sharing our joint expertise can not be understated as we are able to integrate ideas into our day to day operations.
Annual Report
2008 saw a year of steady growth across the range of services we provide which supports the view of the Trustees of Action on Pain that the charity is continuing to meet its objective of reaching out to as many people affected by chronic pain as possible. Our Mobile Information Unit saw service in Wales and Scotland as well as across East Anglia largely due to securing funding for the outright purchase of the unit which created greater operational freedom. Our publications again proved popular and PainLine saw a large increase in calls towards the end of the year. The website saw an unprecendented increase in unique hits confirming its growing popularity across the world. AOP also exhibited at several key conferences and also sits on a growing number of national and international committees that influence the delivery of pain services/support. AOP also gained national exposure through its part in a high profile campaign linked to TENS machines which featured on televison/national magazines and our logo being heavily promoted acrosss the network of outlets supporting the campaign. That we achieve our objectives of bringing benefit to the public through our activities falls broadly in line with our charitable responsibilities.
As the charity evolves we need to respond to the changing needs of people affected by pain by ensuring our services reach as many people as possible within our financial capability. Over the years our branch meetings have generally been poorly attended with one or two notable exceptions hence our decision to not continue to develop this activity. We shall keep the Leeds branch and only consider opening others where there is evidence of sufficient need. With the current financial situation it is essential we use our resources both carefully and effectively.
We had a good year through lobbying with the jewel in the crown being the key role Action on Pain played in the campaign to persuade NICE to recommend the use of Spinal Cord Stimulators for people affected by chronic pain. The partial success is quite a milestone giving potential to achieve more in future representations.
In conclusion the charity is in a good overall position achieving its objectives of bringing benefit to the public whilst maintaining a solid financial base from which to work from. We shall be looking at ways of continuing to improve how Action on Pain operates in order to maintain and indeed respond to the changes that we shall need to make to reflect thos ein healthcare delivery within the UK..
.
Ian Semmons
Chairman
Action on Pain
On the road
2008 saw AOP "on the road" more than in any other previous years exhibiting at major pain related conferences in Liverpool and Glasgow. Our stand was well populated especially at the World Congress for IASP which attracted over 6000 delegates to Glasgow. We forged several links with similar minded organisations from across the world as well as ensuring AOP literature now resided in far-flung corners of the globe. We also took part in a planning meeting in Brussels which will form a platfrorm for the launch of an important European initiaitive that has the potential to help many people affected by pain. The Mobile Information Unit has been very busy in Wales,Scotland and East Anglia.
Strategic Review
Our strategic review enabled the charity to take an objective look at how it worked and how it could improve what it does. We are pleased to say that 96% of our objectives have been achieved which leaves the charity in a very good shape. In 2009 we shall be building on those strengths in order to exploit the opportunities that are coming our way.
You could be a volunteer
Action on Pain could really do with your help! As we grow so the demands on our services grow which is where our volunteers come in. Have you a few hours that you can spare us? It does not have to be regular-we can work around your needs. It is a wonderful opportunity to help those affected by chronic pain with the possibility to help yourself. Why not give AOP a call -your skills could help us in so many ways. The number to call is 01362 820750 or send an e-mail to
During 2008 AOP took part in a campaign to persuade the National Institute for Clinical Effectiveness(NICE) to recommend the use of spinal cord stimulators in the treatment of chronic pain. We prepared an extensive dossier which included interviews with a number of people who had received a stimulator. This was a very frank document which clearly illustrated the benefits and potential pitfalls of these stimulators . The overall picture was that they did provide a benefit however people had to go through what looked like a minefield before being able to have one fitted. At first NICE rejected the proposal but after further lobbying agreed that they could be used for people in chronic pain caused by certain conditions. This is an excellent starting point as not only does it offer a lifeline to people it also enable organisations such as AOP to approach NICE in the not too distant future with a view to extending their range of usage. What was also clearly demonstrated is the benefit of a co-ordinated well structured campaign from a number of sources that came together to achieve this success.
Legal matters
Since AOP was formed back in 1998 we have often been approached for legal advice in relation to matters associated with a medical condition where chronic pain is a component. As we are not legally allowed to give such advice it made sense to research possible sources of such advice. Often people feel they may have grounds for a claim because of their medical treatment or indeed lack of it. Drawing on the experiences of other charities we have developed a legal page on the website which has a link which you may wish to follow. AOP provides this service as a resource without being able to endorse it. If you do decide to make contact then the onus is on you as to what course of action you take.
Office contact
We have a new telephone number : 01362 820750 (available between 1000-1600 hrs Mon-Fri(answerphone available)
We have a new e-mail address: . The old one attracted considerable spam some pretty undesirable!
PainLIne: 0845 6031593 Mon-Fri between 1000hrs-1600hrs Mon-Fri. You may get an answerphone as we are run by volunteers but please leave a message). Out of hours PainLine is monitored with urgent calls being responded to.