Pernicious Anaemia Society Newsletter 10

We work closely with the Pernicious Anaemia Society and we're delighted to show a summary of their monthly newsletter.  Dr Chandy will speak at the conference in March.  If you would like to receive this by email, please cli

PA Soc. Hosts March Conference

The Pernicious Anaemia Society will be holding a conference at Bryngarw House, Brynmenyn, Bridgend, South Wales, UK on 13th March 2010 at 9:30am-3:30pm. Following on from the highly successful Spring seminar that was held last February the PA Society is hosting another event that will, this time, be more in the form of a conference. The conference will be about recent developments in the treatment and diagnosis of Pernicious Anaemia.

The event aims to bring together scientists, doctors, patients and other interested parties so that ideas, innovations and examples of best practice can be dissemi-nated. A list of speakers includes: Dr. Edward Valente, Marketing Manager of Axis-Shield, Dr. Siddharth Banka who is conducting research into the genetics of PA at Manchester University, and a Medical Negligence Solicitor who was a consultant Haematologist before becoming a lawyer. Dr. Chandy will also be there.

The event has been organised by volunteers of the society who were successful in obtaining a grant that has helped to pay for what will undoubtedly be a highly successful conference. There are a limited number of places available and the conference is free to members. Free Refreshments will be provided Lunch is available at a cost.

We will need to know if you plan to attend and if you would like the buffet lunch. If you would like to reserve a place please contact us as soon as possible as places will be allocated on a first come, first served basis. You can reserve your place or places by either telephoning the office on 01656 724163 or emailing Kim using the email address kim@pasoc.org.uk.

Download the Time Table Here 

Conference PDF [507kb]

When you contact us please inform us of any special dietary needs that you may have or if you have any other special requests

Methylcobalamin Infusions

The society has been receiving many requests for information about Methylcobalamin infusions. The society has now produced an information leaflet that gives details of the process along with a contact point that can provide a list of practitioners who offer infusions.

The Pernicious Anaemia Society does not recommend this particular treatment but believes that members should be made aware of this alternative treatment that is available only in the private sector in the UK. Many members report almost miraculous improvement in their well-being after receiving an infusion while other report no change in their condition.

Your doctor is the best person to advise you on any medical matters, including Methylcobalamin infusions, and you should always discuss this matter with him or her before proceeding. You should also ensure that the persons providing the infusions are qualified doctors and members of a professional medical organization, such as the G.M.C.

Petition and Government Responses

Readers may well remember the flurry of political lobbying that took place in Autumn last year. As well as a Number 10 e-Petition we also held a Parliamentary reception in the House of Commons and another reception at the Welsh Assembly. We also had an Early Day Motion tabled that attracted over 80 signatures from MPs and led to an adjournment debate by Made-line Moon MP.

The Number 10 petition led to the Department of Health issuing a reply that stated, quite categorically, that the National Health Service should treat each individual according to his or her needs. The reply suggested that the treatment patients receive should not be „narrow‟ and individuals shouldn‟t be made to fit into locally produced treatment regimes.

All of this political activity has helped raise awareness among politicians of the plight of many patients of Pernicious Anaemia. This awareness raising provides the society with credibility and has led to letters being written to the Secretary of State for Health and the Chief Medical Officers for England, Northern Ireland, Scotland and Wales pointing out the problems with the symptoms, diagnosis and treatment of PA.

Another Early Day Motion (number 49) is also currently available for MPs to sign. Please ask your MP to sign the petition if you haven‟t already done so. We will let you know the responses we receive to the letters that have been sent.