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Meetings
SAFER SURGERY – ARE RISKS BEING MINIMISED FOR PATIENT SAFETY?
ALL- PARTY PARLIAMENTARY GROUP ON PATIENT SAFETY
A meeting on this subject was held at the House of Commons in June 2008.
Speakers:
Clare Lemer, Clinical Adviser to the Chief Medical Officer, Department of Health
Judy Birch, the Pelvic Pain Support Network and Patient Advocate Powerpoint presentation
Christopher Chilton, Council Lead for Patient Safety, the Royal College of Surgeons
Safer Surgery:
‘Safer Surgery, Saves Lives’, part of the WHO World Alliance for Patient Safety Initiative, launched in June 2008, aims to improve the safety of surgical care around the world
Innovative developments in the world of surgery have brought huge advances to modern surgical techniques. Some procedures such as eye and key-hole surgery, are now much less invasive. Surgery does however still pose significant risks to patients, from the possibility of infection and damage to other organs, through to wrong-sided procedures. This meeting aims to discuss what advances are being made to ensure that the risks of surgery are being minimised for patients. Post surgical adhesions have a significant impact on patients (increased morbidity and occasionally mortality risk) and also the NHS in terms of cost. Adhesions are an inevitable consequence of surgery that many surgeons vastly under estimate.
Background to the APPG on Patient Safety:
The APPG on Patient Safety was the first parliamentary group set up to focus on the importance of this issue specifically.
The APPG aims to:
“... examine issues concerning patient safety, raise awareness of those issues among parliamentarians, provide a forum for discussion and debate on those issues, and generate recommendations for the Government to improve patient safety”
The quarterly APPG meetings are chaired by Dr Howard Stoate MP. A wide range of high profile speakers from the world of health have spoken to the Group since its inception. These include Nigel Hawkes, Health Editor, The Times, Sir Liam Donaldson, Chief Medical Officer, the DoH, Sir Ian Kennedy, Chairman, The Healthcare Commission and all Government Ministers for Patient Safety. The summary of each meeting is included on the website
http://www.patient-safety.org.uk/home.htm
Belgian Pain Society- June 2008
The Belgian Pain Society held their Annual Scientific Meeting in June2008 on the subject of Pain in Women. Topics included in the programme were: Gender differences in pain, Pelvic Pain: a gynaecological approach, Vulvodynia, Fibromyalgia: only women ?, Gender and other pathophysiological differences in visceral pain, Diagnosis of neuropathic pain, Looking into the brain: sex differences in pain, and can psychosocial mechanisms help explain sex differences in pain ?
World Congress on Endometriosis, Congress Centre Melbourne, Australia
11-14th March 2008
This congress was attended by around 1,000 participants from over 50 countries.The large number of young participants at the congress was noted as encouraging. The theme of the congress was the "Art and Science" of endometriosis. Over 200 posters were presented (of which ours was one, entitled Endometriosis and Pelvic Pain - Are we making any progress ? ) and over 100 oral presentations. There were clinical sessions on diagnosis including a presentation on the time elapsed between the onset of symptoms and the diagnosis of deeply infiltrating endometriosis (Brazil ) , imaging - ultrasound and MRI (Brazil ) early intervention in the adolescent, treatment of advanced disease (France ) , treatment of endometriosis before IVF, practical training issues, panels of experts discussing cases, live surgery performed by surgeons from Australia, Brazil and France was transmitted to the congress participants in the auditorium. Scientific sessions included endometriosis and inflammation, endometrial dysfunction, endometriosis and angiogenesis, the etiology of endometriosis, endometriosis and embryo implantation.
The next World Congress on Endometriosis is in Montpellier, France in 2011 with the theme "Towards Excellence "
International Alliance of Patient Organizations 3rd Global Patient's Congress, Budapest, Hungary
20-22 February 2008
The theme of the congress was "Patient-Centred Healthcare - aligning healthcare systems with patient's needs around the world". Topics included patient information, patient safety, patient involvement in the design and development of clinical trials, access to healthcare. Speakers at the congress included Sir Liam Donaldson, chair of the WHO World alliance for patients safety and Chief Medical Officer (UK), Andrzej Rys, Director, Public Health and Risk Assessment, European Commission, DG SANCO, Ton Hoek, World Health Professions Alliance, Katalin Rapi, Secretary of State for Health Policy, Ministry of Health, Hungary. Interestingly the Hungarian government have made pain management a priority for 2008. We were invited to speak at the congress on the subjects "Access to Healthcare" and to present our framework for working with industry as well as assisting with facilitating the final plenary of the congress. As a result of the congress we shall maintain and develop our contacts with many other patient organizations around the world. There will be a full report of the congress in due course.
Our NHS Our future International Clinical Summit ( Lord Darzi review of NHS)
21-22nd November 2007 Excel, London
Speakers from many countries around the world spoke to around 1,000 clinicians and administrators (and a few patient representatives ) from the UK about how their health services are organized and delivered.
Discussions took place in clinical pathway groups : Maternity and New Born, Staying Healthy, Children, Acute Care, Planned Care, Long Term Conditions, Mental Health and End of Life Care. Each clinical pathway was divided into regions. Each region will submit their conclusions for each pathway to the review for publication in June 2008.
Further information and video clips of the event: http://www.ournhs.nhs.uk/
International Pelvic Pain Society
The International Pelvic Pain Society annual meeting took place in San Diego from 25th-27th October. Pudendal neuralgia patients in the USA raised the money for a display table with information about pelvic pain. Two volunteers, one from Los Angeles and one from San Diego represented the Pelvic Pain Support Network. The meeting went ahead and both attended despite the fires in California. There was considerable interest in the information available.
Medical advisory panel member Michael Hibner, his assistant Patti and volunteers in San Diego. Thank you for all your effort
IASP - year against Pain in Women
The International Association for the Study of Pain (IASP) global year against Pain in Women UK launch organized by the British Pain Society Patient Liaison Committee took place on 15th October 2007. Clare Rayner introduced the event. Speakers included Beverly Collett (on behalf of the IASP), Judy Birch (Pelvic Pain Support Network ), Ed Keogh (Bath University ), Anna Mandeville( National Hospital of Neurology and Neurosurgery). Representatives of several voluntary sector organizations and clinicians attended. There were several workshops on topics ranging from pelvic pain to musculoskeletal pain and migraine. Action points arising from the discussions highlighted the need for information and its effective distribution as well as education and training for health professionals.
For the global year factsheets on 18 topics, an audio clip from BBC radio on fibromyalgia and the latest issue of Pain :clinicial updates focusing on dysmenorrhea - Nov 2007 - Click here
7th German Endometriosis Congress 26-29th September Berlin
We were invited to do a presentation on the subject of Endometriosis and Pelvic Pain at the German Endometriosis Congress in Berlin. The presentation was in German explaining the results of the chronic pelvic pain survey data gathered from 3 countries in 2006 – the USA, France and the UK. The survey results include patients views on diagnosis, symptoms, effectiveness of treatments, access to interdisciplinary teams, difficulties relating to basic functions such as sitting, standing and walking, work, carrying out household tasks and other activities. One of the trustees of the Pelvic Pain Support Network also attended the event.
German and Austrian clinicians at a presentation about pudendal neuralgia and endometriosis of the sciatic nerve.
Pelvic Pain Support Network presentation of pelvic pain survey results: endometriosis, pudendal neuralgia, irritable bowel syndrome, bladder pain, vulvodynia, etc.
"A Journey through the Body"
House of Commons 18th July 2007
Trustees and volunteers manned a display stand at this event and spoke to several Members of Parliament about our work.
Norman Lamb MP Howard Stoate MP Annette Brooke MP
Chronic Pain Policy Coalition Launch New Pain Manifesto
House of Commons 20th June 2007
The Chronic Pain Policy Coalition was launched in June 2006. It brings together patients, professionals and parliamentarians who are committed to providing appropriate services for the prevention, management and treatment of chronic pain in the UK.
The coalition has identified approaches and simple actions that could make a real difference to the quality of life of people living with chronic pain. The following recommendations have been developed based on listening exercises and the sharing of good ideas and best practice. The Coalition’s five point manifesto launched in June 2007 requires patients, professionals and the Government to work more closely with one another to achieve the following goals.
The first pledge in the Manifesto is EDUCATION stating that patients should be listened to, treated with respect, and assessed by appropriately trained professionals. A comment of surprise at the need to include such a statement in a manifesto about chronic pain in a developed country in 2007 was made in the introductory speech. The call is for pain to be an integral part of all professional training. Many people may be surprised that it is not already a part of medical training. Undergraduate medical students currently receive about four hours training on pain and they spend even less time on the prescribing of drugs for pain. Evidence from UK medical schools indicates that this varies from no formal teaching at all to a six week voluntary “special study module”. The Manifesto argues that an understanding of pain mechanisms, why acute pain becomes chronic, and principles of good pain management should be part of the compulsory core curriculum for all medical school and professional training courses. During the last 15 years, understanding about changes in the brain and spinal cord in patients with chronic pain has increased. Currently only the Royal College of Anaesthetists has pain as part of its curriculum. Only 8% of Primary care organizations have any budget for training GP’s in pain. The divisions within the health service means that pain gets lost within specialities. There is a need for better liaison between primary/secondary care. The only country which currently embeds training in pain for health professionals is France.
The second pledge is EMPOWERMENT: to support people in making decisions about their condition. The Coalition calls for appropriate information and support to enable people with pain to understand their condition and to make informed decisions about the management of treatment options open to them.
COLLABORATION is the third pledge so that all stakeholders share in a joined-up patient strategy. The causes and effects of chronic pain are numerous and long term. In several parts of the UK there are no chronic pain services. There is a lack of understanding on the part of commissioners to appreciate the need for a highly experienced multidisciplinary approach to good chronic pain services. Care pathways are needed that match specialist therapy to the needs of individual patients.
The fourth pledge is EARLY ACCESS to prevent acute pain becoming chronic pain. Patients need to bring early symptoms of chronic pain to the attention of their GP or employer and should not fear being a burden. GP’s and employers need information about how to identify known risk factors and take action which may help prevent chronic pain symptoms developing in the longer term.
The fifth pledge is MEASUREMENT of pain as the fifth vital sign. Patients should have their pain assessed at the earliest opportunity, on a regular basis and with the same priority as the four vital signs. Professionals should use appropriate measurement tools and listen to patients’ personal experiences of pain. The only two countries where this is current standard practice are the USA and Portugal.
There is no specific mention of pelvic pain in the manifesto but the subject arose in the questions following the speeches from a member of the Royal College of Obstetricians and Gynecologists. The reply was a call for gynecologists to use pain specialists more, as more is being understood about pain in women and neuropathic pain. It was emphasized that the whole team of therapists may be needed: physiotherapists, occupational therapists and psychologists to maximize a return to functioning.
An early day motion (EDM) was tabled on 20th June 2007 entitled "Chronic Pain Policy Coalition Report and 5th Vital Sign Campaign".Any constituent can ask their MP to support EDM number 1741. The more signatures there are, the greater the impact these efforts will make. The wording of the EDM and a list of those who have signed it can be found at:
Second International Congress on Neuropathic Pain
Berlin, Germany June 7th-10th, 2007
The Special Interest Group on Neuropathic Pain(NeuPSIG) of the International Association for the Study of Pain (IASP) hosted its second international meeting in Berlin. The event was attended by 1,600 participants which is almost double the size of the first congress which took place three years ago in Madrid. The huge increase in the numbers attending this event is an indication of the rapidly increasing interest in the field. It has been decided to host the event biannually following the next meeting in Athens in 2010. The aims of the SIG are "to advance the understanding of mechanisms, assessment, prevention and treatment of neuropathic pain (NeP)".
The keynote address was made by A. Basbaum on the subject of "The history of neuropathic pain: so many targets, so few drugs". The term neuropathic pain was first used as recently as the late 1980's. Before this the term "causalgia" was used to describe burning pain from bullet wounds. Prof Basbaum pointed out that the majority of the medical treatments currently in use are over 50 years old and advantage has not been taken of the new information based on the research in developing drugs in this field. It was pointed out in several presentations that less than half of patients achieve significant benefit with any medical treatment, that these syndromes are common and seriously affect the quality of life of patients..
There were several presentations on the prevention of neuropathic pain including the possibilities of new management approaches for preventing the establishment of persisent pain, identifying high risk patients who need preventive therapy and the prevention of chronic post surgical pain. The latter is a major challenge for research and improvement. A study in Denmark of post hernia pain showed that 11% of post hernia patients had pain which interfered with their work and social lives and that 3% had pain related sexual dysfunction following groin/hernia repair. Nerve entrapment and sutures around the nerve have been found after hernia mesh repair. The main mechanisms include preoperative pain sensitivity which may be due to genetic or psychosocial factors, nerve damage during the procedure, and acute postoperative pain. Treatment strategies include effective use of multimodal analgesia, perhaps pre-emptive and prolonged analgesia and the use of nerve-sparing minimally invasive surgical techniques.There is a need for well designed clinicial trials including preoperative, intraoperative, postoperative and late postoperative assessment and description in well defined patient populations.
The importance of the patient/doctor relationship and the impact of words, empathy and hope on patient outcomes was highlighted.
In other presentations the various diagnostic tools for NeP were described and compared. However screening tools are not widely used by physicians and they do not find it easy to differentiate NeP from other types of pain. The Global Neuropathic Pain Survey 2007 showed that of the 7 participating countries (Finland, Germany, Italy, Korea, Mexico, Spain and the UK) , Germany had a fairly high use of screening tools with 43% of physicians using them with most or all of their patients and 58% are familiar with them. The survey indicated that physicians in the UK are relatively unlikely to ask specific questions about the pain a patient is experiencing. It also indicated that the average patient in the UK waits more than 3 years after the onset of pain for their pain to be identified as NeP.
The importance of the role of fMRI and other imaging techniques in the study of pain were presented. See research section of this website for further infromation about some of these studies.
A strong case was put forward for the use of topical treatments such as a lidocaine patch due to the lack of side effects which is very important in the elderly. It is not necessary to cover the whole area of pain and lidocaine is not absorbed into the system. After 7 years of use in the USA, the benefit of this has been rated highly by patients who have gained significant improvement in quality of life. This treatment is licensed in the UK for post herpetic neuralgia (PHN).
A faculty of European experts have developed a syllabus covering the therapeutic approaches to chronic neuropathic pain with a particular emphasis on interventional therapies focusing on treatment options for patients with chronic neuropathic pain in whom conventional management is no longer appropriate. The programme is designed to encourage knowledge sharing and dialogue between healthcare professionals and a series of local and regional educational meetings throughout Europe has been planned from Summer 2007.
Pain Exhibition, Museum of the Present & Charite Hospital, Berlin
5th April--5th August 2007
This exhibition by coincidence is taking place during the above congress. The photograph below is taken where the Berlin wall used to be. It is the site where the first person was killed trying to cross from East to West Berlin following the building of the wall. The first part of the exhibition is in the Museum of the Present which is located in the Hamburger Bahnhof in the former western part of Berlin. The second part of the exhibition is across the bridge in the former eastern part of the city and a short way along the canal in the orginal Charite Hospital Medical History Museum.
Note the logo for the exhibition at the base of the traffic lights on the bridge.
The exhibition points out that in addition to the description of pain as a chemical -electrical process, there is an an increasingly widespread understanding that social and cultural factors and especially the relationship between doctor and patient should not be ignored. It asks the question: is it possible to adequately describe one's pain to others ?
There are letters from patients describing their pain to their physicians dating back several hundred years. In these letters patients use vivid descriptions and images to explain the impact of pain on their lives. The trend towards the development of pain questionaires using selected adjectives has the effect that what can be expressed by the patient is limited. It is noted that it may be impossible to describe some pains with the vocabulary provided in questionaires.
