CHAIRMAN’S REVIEW OF THE YEAR
November 2007
If you have had an opportunity to read the Director’s report for the year to 28.2.07 which is part of the accounts you will have seen that a change to accounting standards has resulted in the narrative being more informative about what the Society was trying to do and what it has achieved. The report highlights four main areas of activity:
- Improving access to treatment
- Providing improved support and information
- Progressing research activity
- Raising awareness of the condition
- And improving the Society’s effectiveness.
One of the things highlighted under the caption of improving access to treatment was the appointment of Val Wells, our Service Development Manager in January. This appointment was particularly timely as there has been a clear increase in the number of members reporting difficulties in obtaining treatment at the required frequency and also in those recently diagnosed individuals who now face difficulties in finding a clinic with spare capacity. This has been a concern for some time and we are now able to make representations more effectively in areas where there have been particular problems.
As part of our efforts to improve support and information we have increased the telephone helpline service to five days a week. Unfortunately there have been hiccups with the Helpline service in recent times through unforeseen circumstances but our commitment to an enhanced service remains. In line with this a programme was launched in August 2006 to identify and train a small team of qualified and supported members who will extend the hours of the Helpline to include a weekday evening and a Saturday morning. This extension of Helpline hours will provide a vital service for those people with dystonia who are still at work and who need to contact the Helpline during out of work hours.
We are in the process of reviewing the way we help people through our local contacts network. This has served us well over the years and the Society is indebted to all the people who have helped in this connection. With changes to the communication methods available to us “local” may not be as necessary as it once was and moving to help that is more condition specific may be more useful.
A concern of members is that we are not always seen as being as active in supporting research as we should be. The last year has seen a very welcome increase in this area. I reported last year on the Oxford Blepharospasm project and we had hoped that progress on this may have been further forward. In addition to this The Society is also seeking to evaluate the potential benefits of physiotherapy to people with cervical dystonia (dystonia of the neck). Though anecdotal evidence has been positive, it is only with the results of a formal trial that a definitive conclusion can be reached as regards its effectiveness. This trial will be run from two centres in Scotland. Fundraising activity for the trial was started in 2006 and has been going well. A total of over £150,000 has already been received from generous charitable trusts and individuals and the project is now fully funded. And also Working with paediatric neurologists in Scotland and the South East of England, the Society has developed a potentially important pilot project to audit cases of childhood dystonia, a particularly distressing type of dystonia. The pilot project will run in Scotland and seek to identify all the instances of youngsters who have dystonia (both primary and secondary types) as well as start to identify optimum treatment regimes. Given the current lack of information on the epidemiology of dystonia in children, I am sure that you will agree with me that this is potentially an important project.
A review of the year must make mention of the financial position. We are very grateful to all those who have supported our activities, particularly Trust funds who get many requests for help but I would like to specially thank those Companies involved in the provision of services and support to members suffering from dystonia, who have given funds to the Society over this and prior years to help maintain and extend those services. It is in part thanks to that support that we can be here this weekend. I am very pleased that once again we have been able to ensue, by very careful control and stewardship, that our income and outgoings are in line with one another.
A problem with a successful year is that it creates a challenge for the next one. We have set out our aims and objectives and these are, as ever, quite challenging.
As ever raising awareness remains a priority for us and we have again run the Jackie Deakin essay competition open to 3rd, 4th and 5th year medcal students. We had 43 entries this year, more than ever before. This may be indicative of a growing interest in Dystonia in medical schools but the lure of the cash prizes may have been a factor. A very warm welcome to the prize winners who are here today.
We are continuing and expanding our efforts to understand more from our service users and healthcare professionals how we can best tailor what we do in the most effective manner. A very useful forum in this connection was held at Anfield under the chairmanship of Dr Peter Moore. I rather wanted to go, but in truth not because I wanted to contribute to the discussion but to get a chance to visit the stadium.
We are trying to target help specifically to young Dystonia sufferers and their carers and to this end we are contacting all those we know to undertand more about how we can meet their specific needs
We are working on developing a new range of support resources for our local support groups and we continue to develop our range of information literature. I am very impressed with the range of resources that are available on different aspects of Dystonia. I know how helpful these are particularly for people whose condition is newly diagnosed and all credit to those who continue to develop this range. We are currently working on
And we continue with our series of very well supported Living with Dystonia days.
None of this would be possible without the hard work and dedication of many people. Our Society has excellent staff and I applaud them all. It is invidious to name individuals so I won’t. Thanks also to the many people who volunteer in lots of ways. Together we make the Society what it is. Thanks too to the medics who have given us great support. One day there will be a cure and the Society can close its doors but meanwhile I am very pleased that it is in such good shape.