Here is the News!

We need your help!!

Would you be willing to share your experiences of Breakthrough Cancer Pain? This could be as somebody who has actually experienced it or a family member/relative/carer of somebody who has experienced it.

Why are we asking for your support?

The Breakthrough Cancer Pain Coalition, comprising the pharmaceutical companies Archimedes Pharma, Cephalon,Nycomed and ProStrakan, would like to invite you to share your experiences of breakthrough cancer pain, which would support an upcoming awareness campaign which will be launched this autumn. This campaign will enable people to recognise that they are experiencing breakthrough cancer pain which in turn will enable them to communicate more effectively with the healthcare professionals treating them. This can only increase the chances of it being managed effectively.

If you experience a short flare up of intense pain that breaks through your underlying treated cancer pain this may well be breakthrough cancer pain.

We would really appreciate if you would be willing to share your story with the Breakthrough Cancer Pain Coalition with a view to telling people about your experiences. This could be on the campaign website or even speaking to the media in order to help other people understand the condition which could lead to them receiving more effective treatment. Your contribution could make a real diffference!

How do I go about it?

Please contact Liz Adams or Emily Blakemore at Red Door Communications for further information.

e-mail: or call 0208 392 8040 adding +44 if calling from outside the U.K.  

Pain Services in the UK

As the number of people living in the UK who are affected by chronic pain increases so the pressure on existing services continues to grow. The challenges this presents are immense which highlight the need for some rational thinking to adjust to this demand. The majority of healthcare professionals working in pain management will tell you that it is a matter of having more resources and more money to deal with the workload. This against a background of economic difficulties both in the UK and the wider Eurozone which make such investment highly unlikely. Action on Pain challenges very strongly the demand for more resources and more money-why you may ask. The basis of our challenge is to ask each and every pain team in the NHS to look at how they work-do they make best use of their existing resources? Do they have an effective cost control process in place? Is their existing system effective and efficient for patients and staff alike? We suspect that the outcome of asking these questions would come as a bit of a shock especially if they were asked by somebody from outside the department. Here at Action on Pain we get first-hand experience of the wide variations that exist in pain clinics across the U.K. Yet chronic pain knows no boundaries so there should be no logical reason for such variances to exist but exist they do. Of added concern is information coming our way where posts in pain services are actually being cut which does not bode well for the future.

Later this year a "Pain Summit" will be held which aims to plan the way forward yet with a planning committee dominated by physicians and other healthcare professionals has managed to produce an agenda that poses the same questions that have been posed time and time again over the last ten years. No doubt the same answers will be generated with many fine words but very little action. One must question the extravagant expense of staging this event at a time of tough economic pressures and posts being lost in NHS pain services. Those of us with long memories will remember the ill-fated CSAG report which promised much but delivered nothing. Action on Pain having consulted the opinion of our members and volunteers has decided that they cannot support this "Summit"   

It is surely time for a reality check throughout the whole of the UK pain arena. Tough questions need to be asked such as how many potential pain clinic patient appointments are lost through healthcare professionals attending meetings either within the hospital or further afield? Is that meeting really necessary-the AOP position is that the majority are not!    

In conclusion we would like to report that during the thirteen years of Action on Pain pain management services in the NHS have improved. We simply cannot as our opinion is that they have "slipped back" to the detriment of patients and staff alike. Tough words we know however here at Action on Pain we do not shy away from facing the reality and telling it as it is.

And there is more!

Major European Initiative for people affected by chronic pain

As part of our continued drive to provide more assistance and support for people affected by chronic pain Action on Pain is proud to be one of the key players in a European initiative. At a recent meeting in Brussels within the EC Parliament building several groups including Action on Pain came together from countries across Europe with the aim of establishing if there was a need for a pan-european pain patient organisation. Very much a "toe in the water" exercise it soon became clear that there was wide support for such a group so the meeting moved on to understand the logistics, the aims and objectives plus how the group should be structured. With several ideas being floated delegates agreed to a further meeting in July to move things forward.

Running alongside this meeting was the 2nd Societal Impact of Pain Symposium which brought together over 200 delegates- a mix of health care professionals,academics and patient groups. Action on Pain Chairman, Ian Semmons, who co-chaired the closing session said" It is by working together that we can improve the lives of so many people affected by chronic pain. By sharing our expertise and experiences we can go a long way to breaking down the barriers that face people living with chronic pain. For clinicians and patients alike the need for chronic pain to be recognised as a condition in its own right is essential"

It has been suggested that a national pain alliance should be formed in the U.K yet  in contrast to the european initiative Action on Pain does not support such a move believing that the already established Chronic Pain Policy Coalition already carries out this role. With limited resources both financial and personnel the need to use both effectively is paramount within Action on Pain so committing to yet more meetings where the same issues will be discussed by largely the same people is not for us. We much prefer to commit our resources to key projects that give the best return for people affected by chronic pain- actions speak better than words!

 

 

 

                                             Recent survey shows patients resigning themselves to a live 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).

Website Advertising

AOP has been carrying advertising on its website for the past year in order to gauge the response from our visitors. The overall response continues to be positve with a number of people telling us just how helpful it had been.ed. Based on this feedback we shall be continuing with advertising for the forseeable feature. As always we welcome your comments both positive and negative along with any ideas that you may have for additional advertisers.  

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 will be "out on the road" again with both the Mobile Information Unit and the display stand including exhibiting at the Chartered Society of Physiotherapists conference at Liverpool in October. This will be a new venue for Action on Pain as we seek to build new contacts with physiotherapists who have a growing role in providing pain management services. Our relationship with healthcare professionals working in pain services continues to develop as a result of attending such events. This can only have a positive impact for people affected by chronic pain as well as giving healthcare professionals a better understanding of the impact chronic pain can have.

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 was very active during 2010 as we continued  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 several initiatives 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 achieved in the latter part of 2010 which have moved further ahead in 2011 The benefits of sharing our joint expertise can not be understated as we are able to integrate ideas into our day to day operations.

 

  

On the road

2010 saw AOP "on the road" more than in any other previous years exhibiting at a major pain related conference in Manchester. Our stand proved "ever popular" enabling us to meet many healthcare professionals working in pain management. Our Mobile Information Unit visited various parts of the U.K some for the first time again attracting lots of attention both at the venue and "on route". It provided logistical support to some of the Pain Roadshows and survived a gale force battering at the Aylsham Show! In addition we continue to carry out our popular store collections . 

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 are developing a legal page on the website which will have a link which you may wish to follow. AOP will provide 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

Our telephone number : 01362 820750 (available between 1000-1600hrs Mon-Fri-answerphone available)

Our e-mail address: . The old one attracted considerable spam some pretty undesirable!

PainLine: 0845 6031593 Mon-Fri between 1000-1600hrs. You may get an answerphone as Action on Pain is run entirely by volunteers(but please leave a message). Out of hours PainLine is monitored with urgent calls being responded to.