The past year has seen the society making steady progress towards its medium term aim of getting medical professionals from all over the world to call for a comprehensive Review of the way in which Pernicious Anaemia is Diagnosed and Treated. The progress is slow, but steady. And you have to realise that this is an enormous learning curve for everyone involved – including those members who are medical professionals themselves.
Before describing the progress that we have made, I will turn my attention to
some of the other main events and achievements that we have made as a charity.
OFFICE. The first big change that has happened over the last year was the move from a small office where we paid £580 per month in rent to an enormous new office suite that comes free of all rent – although we do have to pay for electricity. The fact is that the landlord of the office has to pay quite considerable business rates to the local authority, even though the office is vacant. By allowing a registered charity to occupy the space free of charge the business rate is automatically reduced by 90% with a further 10% reduction at the discretion of the local authority. The large office space has provided us with an opportunity to host seminars and tutorials that would typically have meant us paying hundreds of pounds to hire suitably sized premises. The office comes complete with kitchen so that catering costs can be slashed as well.
Two meetings of the south Wales support group have already taken place and more are planned in the near future. It was hoped that the proposed Symposium that will take place on Thursday June 9th 2011 would take place in the office. However, early idications are that the number of attendees might well exceed the 200 mark which would stretch even our available space. More of this in the future.
VOLUNTEERS. The society is very lucky to have the support of a band of volunteers who help run the society by performing various administrative tasks, ensuring that all legal requirements of the UK Charity Commission are met, responding to requests for information, organising local support groups and a host of other duties that are carried out with enthusiasm and with a genuine desire to make the society work as well as it can. The relationship between the society and its volunteers is mutually beneficial. The charity receives welcome support for only the smallest outlay – we do pay travel expenses – whilst the volunteers get either valuable work experience or a pleasant environment where they can interact with others and use their experiences of past working lives to better the society. Sometimes it’s a combination of the both. The society has become well known for its ability to produce volunteers who have developed highly transferable and valuable skills that provide the stepping-stone into full time employment. Indeed, in the last newsletter of the Welsh Council for Voluntary Organisations, we were singled out as being an exceptional volunteer run body. In the last eighteen months, nine of our volunteers have found full-time work. Our volunteer turnover may be high, but it’s for the right reasons.
EMPLOYEES. This year we have been able to offer two volunteers six months full time employment under the Welsh Assembly Government’s Future Jobs Fund. Basically we have a Service Level Agreement with the Welsh Council for Voluntary Action whereby the WCVA provide us with the money to employ an unemployed 18-24yr old for six months. We are responsible for all supervisory actions and for paying the employee. Kirsty was the first employee who, following on from six months volunteering, was appointed in January of this year. Kirsty’s contract ended in June and we were delighted when she was successful in applying for an administrative position in the private sector. Kim was appointed in March and set to work to use her skills developed during her degree course to produce a documentary on the problems with the symptoms, diagnosis and treatment of Pernicious Anaemia. Kim’s contract ended in September but she continues to work on the documentary on a voluntary basis. We have a vacancy advertised for another employee but, so far, we have not found anyone suitable to fill the post. None of our current volunteers qualifies under the Future Jobs Fund criteria.
EVENTS. The year began with another Spring Conference at Bryngarw House near Bridgend, south Wales. The much loved Dr. Chandy gave another enthusiastic lecture on b12, along with Eddie Valente of Axis Sheild Diagnostics and Dr. Siddarth Banka who updated us on his research into the genetics of Pernicious Anaemia. The conference allowed members to speak to other members and also to contribute to the letter that was being prepared to alert the Department of Health to the problems with the diagnosis and treatment of Pernicious Anaemia.
The planned Symposium will be the focus for the society in 2011.
Another development was the formation of local support groups. While some groups have become quite successful others are struggling to recruit members even though some of these areas have large numbers of people who are members locally. This is an area that will continue to develop in 2011. If anyone would like to start a support group in their area please contact the office so that we can help.
INCORPORATION. The Trustees of the society, who continue to allow me to use executive powers in all matters relating to the society for which I am extremely grateful and acknowledge their trust, have taken the decision to incorporate the society into a limited company. This process is now underway and should be completed by early Spring. This will mean that we will have a new charity number and the liability of all trustees will be limited to £1. The Trustees met twice this year and continue to support all events that have taken place.
MANAGEMENT COUNCIL. The management council continues to meet every six weeks online using Skype. The council is made up of the following personnel: Pat Kornic – Canada, Ian McClean – U.S.A., David Connell-Smith – U.K. (and a Trustee), Alex Black – U.K. (and a Trustee), Norman Thomas – U.K. (and a Trustee), Tuula Siljander – Finland, Corrine Day – U.S.A. Oh, and me.
NICE. The National Institute for Health and Clinical Excellence (which, in the UK is responsible for ensuring the introduction and monitoring of best practice in all things health) turned down three requests for different reviews into the efficacy of treatment, diagnosis and symptoms. When contacted by Kim to give an interview to camera (see ‘Documentary’ below) they instead issued a statement that said that the requests were taken seriously but when they had contacted the Royal College of Pathologists, they had been told that there were “no issues relating to the diagnosis or treatment of Pernicious Anaemia”. I have since written to the President of the Royal College who has passed my request for an interview to his colleague – the immediate past president.
THE VISITOR. I have to be careful here, because I know this person reads my blogs. In May of this year, I received an email from the personal assistant of the Deputy Chief Medical Officer for Wales who was also the Medical Director of the NHS in Wales asking for a meeting at the society’s office. I replied that, as the Doctor’s time was more valuable than mine that I might travel to Cardiff to meet with him at the Welsh Assembly Government Offices where he was based. The return email stated that Dr. Hunter would prefer to come to Bridgend. The time and date was set and, cometh the hour, into the office walked Dr. Hunter waving his arms around as he took in the vastness of the office. I began to explain why we had such a large office and he stopped me telling me he knew the background – he had been reading my blogs…… I then asked if he wanted to know some of the problems with the diagnosis and treatment of Pernicious Anaemia but he replied that he didn’t need to be briefed as he had been reading the forum posts and was astonished that such problems existed. He assured me that he would be bringing this to the attention of NICE in the future. We have yet to hear from NICE but the visit proved that what we are doing, as a society, is worthwhile. We have, at least, one seniour medical professional who is aware of our plight. The visit was a significant milestone in the society’s history.
THE DOCUMENTARY. Where do I start?
During the Summer one of our employees suggested that the society’s work would benefit enormously from having a documentary being made into all of the problems faced by our members. Before June I had barely heard of High Definition, and was blissfully ignorant of the role of a Sony Z1 High Definition Video Camera – that has now changed and for the last six months that camera has dominated my life as nothing has before. The work that Kim has done in writing the script, arranging interviews, conducting the interviews and capturing the film (don’t ask – it’s complicated) is quite inspiring. This has resulting in us, and other volunteers, travelling throughout the UK to interview and film senior, and world renown medical professionals and other scientists. The result is a balanced analysis of the problems faced by our members that, in most cases, illustrates that these issues are causing unecessary suffering and urgently need to be addressed. The film includes some very important and distinguished professionals seriously criticising the current tests used to diagnose B12 Deficiency and Pernicious Anaemia. And these professionals have stated these criticisms to film and in quite forthright language. However, just as important are the senior doctors, senior and internationally well-known doctors, stating that there is absolutely nothing wrong with the way in which Pernicious Anaemia and B12 Deficiency is diagnosed and treated. The original budget for producing the film was £1,200 that was funded by a ‘restricted grant’. In true Hollywood fashion, the film is four five times over budget but will be worth it. We have one more interview to conduct on January 4th in north Wales and then it will be the start of the editing. We have over thirty hours of film that has to be condensed into one hour and ten minutes. Kim is already exploring how the film will be distributed and it is hoped that it will be broadcast by one of the national broadcast channels. It will also be available to watch on YouTube but all of this will depend on the Distribution terms and conditions. It is hoped that it will be premiered in London, although we are still searching for a sponsor for the event that will cost around £5,000. It will certainly be shown at the Symposium in June.
SUMMARY. This year we have concentrated our efforts on raising awareness among medical professionals of the problems we face. In this we have had moderate success. My thanks to all our volunteers including the Management Council and Trustees who have helped make this possible. Next year sees the Welsh Assembly Elections which will provide an opportunity for us to be listened to by politicians. But it will be the documentary and the symposium that will be the main events. Finally, thank you to all our members who have continued to support the work of the society. I wish you all a happy new year.