Treatment for chronic pain has long been a fragmented segment of NHS services which often sees people with pain finding it difficult to access the treatment they need. It was therefore with considerable interest that Action on Pain was asked to bring our Mobile Information Unit down to South Wales to support the launch of "Designed for People with Chronic Conditions" document which provides the Service Development and Commissioning Directives for Chronic Non-Malignant Pain. The aim is to remodel services to improve the management of chronic conditions and the quality of life of peole living with those conditions.
It is a bold document developed by Ann Taylor and her team which will present considerable challenges to those charged with delivering its objectives. The potential to bring all the interested parties together to deliver a seamless service is very attractive which if achieved will have a major impact for people in Wales affected by chronic pain. Key to its success must be the ability to break down the barriers that exist between the various agencies and healthcare professions by moving to a "can do " culture. At the South Wales launch and in North Wales a week later it was clear that this is not going to be an easy ride requiring a considerable shift in "working culture" from those involved. Crucial to the succes of this document is the need to maintain momentum by not letting it gather dust as other similar documents designed to help people have pain have been.
NICE( the National Institute for Clinical Excellence) has being looking at the effectiveness of spinal cord stimulation in relation to the treatment of chronic pain. Along with several other organisations Action on Pain submitted detailed written evidence which gave a fair and balanced overview of the impact these devices had on people with chronic pain. NICE have now made their intial report prior to a final decison being made in November which does not make pleasant. Having read their intial report in some considerable detail it is hard to see how they came to their opinion as it is clear that due weight has not been given to the patient evidence. Action on Pain remains deeply disturbed by the process which from our exposure to it does place considerable hurdles to organisations submitting evidence. Unacceptably tight deadlines and requests which cannot possibly be achieved as well as very poor communication appear to be the trademarks of NICE- an e-mail sent over three weeks ago still not responded to is a good example. We shall be submiting further evidence as well as seeking support from MPs in an attempt to ensure NICE adopt a more reasonable stance on spinal cord stimulators.
It is perhaps wise to explain just what spinal cords stimulators actually are without being too technical! They come under the banner of " Neuromodulation in the treatment of chronic pain" which equates to medical devices which may include a Spinal Cord Stimulation(STS) or Intrathecal Drug Delivery(ITDD) that can deliver proven effective treatment alternatives when other treatments have failed. A SCS system or ITDD pump system works directly on the spinal cord which carries the pain signals and are thought to work by interfering with pain signals before they reach the brain. Whilst results vary from patient to patient they may offer good pain relief to appropriate patients which help with your quality of life.
SCS works by placing an implanted lead powered by an implanted battery or by a receiver near the spinal cord. These send electical impulses that block the pain messages to the brain. The implant can be felt as a small bulge under the skin but would not usually show through your clothing. An external programming device enables the doctor to adjust the strength and area of coverage.
ITDD is designed to work by delivering pain medication to the intrathecal space surrounding your spinal cord. With the ability to deliver medication directly to the receptors in the spinal cord the potential to reduce the levels of medication you need is enhanced. You would have a pump and a catheter placed surgically under the skin within the abdominal area near to your belt line. The catheter which is a small flexible tube connects to the pump and then tunneled under the skin to the site where the medication will be delivered. The pump releases the medication at a set rate through the catheter to the site of delivery in the intrathecal space.
Both these therapies can be used when perhaps more conservative treatment have failed. It can be quite a process to go through before agreement to go ahead is achieved however this process does help to improve the chances of success. Like all forms of pain management it does not work for everybody nor is it available across the NHS. That you need to be determined to face a tough challenge to get one of these devices should not be underestimated. That said Action on Pain has spoken to several people who have had these devices implanted with a drastic improvement in their quality of life after years of frustration and despair.
Action on Pain is also involved in a number of key projects aimed at either raising the profile of pain or with developing effective pain services. We are also involved within three different locations in the training of healthcare professionals in pain management. Their exposure (often for the first time) to the patient perspective is always an "eye opener" as they generally discover that they know very little about the impact of pain. It is a good experience which build many bridges and must surely help many people in the future.
The changes we made during May-July last year to our website have attracted positive feedback with the emphasis being that it is far easier to navigate now than after our changes earlier in 2007 which still left the sitedifficult to negotiate. That it is much more user-friendly is demonstrated by a large increase in the number of unique hits. We are looking at how we can bring more benefits to becoming a member of Action on Pain as well as expanding the information base on the site. You might like to vist www.buy.at/aop where you will be able to purchase goods from a select band of retailers from the comfort of your armchair. Each time you buy generates a donation to AOP-prices are highly competitive! If you have any ideas that you think would enhance the website then please call Action on Pain on 01760 725993
We are pleased to be able to announce the appointment of our first Patron. Andrew Hughes is a professional footballer with Leeds United and no stranger to pain. A strong and determined player Andrew displays many of the characteristics needed to overcome the challenges associated with chronic pain. We very much appreciate the support that Andrew brings which is enabling the charity to move forward in a number of different ways. With the season reaching its conclusion it is a challenging time for Andrew and we wish him well as the possibility of promotion back into the Championship has become more difficult following recent results.
One of the key roles of Action on Pain is to try to ensure that people affected by chronic pain have access to reliable information and support. As the shape of healthcare in the UK continues to change the role of the pharmacy is moving to greater prominence. Within this growth it is important for pharmacy staff to have a clear understanding of the needs of people with chronic pain. One particular area relates to giving the correct advice when selling a TENS machine as well as ensuring that they are aware of any contra-indications.
In order to achieve this objective AOP have been working closely with Lloydspharmacy- the major national pharmacy to produce a training DVD for all their retail staff. This is particularly timely as Lloydspharmacy have introduced a product range designed to help people with chronic pain including a attractively priced TENS machine. AOP warmly welcomes this initiative which demonstrates a positive move in the retail pharmacy market. It is good to report that the initiative has been well received with a considerable number of TENS machines being sold.
Some may say Norfolk is flat and boring but events in Swaffham(not far from the AOP office) have been anything but. Late in 2007 the market town was host to film crews shooting the latest series of "Kingdom" which was shown early in 2008 on ITV. Watching the crews in action along with the transformation of some of the local "haunts" was fascinating. Whilst the AOP Mobile Information Unit was at Waitrose in Swaffham we were lucky enough to be visited by Stephen Fry who stars in the series. He was very enthusiatic about what we were doing offering every encouragment. The name Celia Imrie will be well known to many who have seen her star in many major roles both in the cinema and television. Ian Semmons,our Chairman, had the opportunity to talk to her about the charity during the filming of "Kingdom". Celia was keen to endorse Action on Pain along with the valuable role it plays in helping people affected by chronic pain and encouraged people to support the organisation in any way they can. AOP deeply values such support and trust that people will respond to it in a positive and practical way.
The charity has been working to implement the findings of our Strategic Review with a current achievement rate of 96% of the objectives. As a result the charity is able to report that it is well managed whilst maintaining a sound financial position.
