Last weekend the Trustees of the PA Society met in Birmingham and agreed the next set of Aims and Objectives that will provide a focus point for the operations of the society and will also set out my priorities for the next few years. Encouragingly some of these have now been met following developments that have taken place in recent weeks.
Our Aims are based on the Vision and seek to achieve the following:
1. Patients will receive a Quick and Accurate Diagnosis
Objective – Raise Awareness among Medical Professionals of the Problems Currently Faced by our Members
We will do this by
i. Conducting an Audit of Members’ Experiences in obtaining an Accurate Diagnosis
ii. We will publish the Audit
iii. We will work with Medical Professionals to Address this problem especially Current Guidelines by NICE.
2. Patients will receive Treatment Based on the Needs of the Individual
Objective – Identify the Scientific Explanation of why Some Patients need more Frequent Replacement Therapy Injections than Others.
We will do this by:
i. Working with Researchers to Encourage Clinical Research and Providing Researchers with Patients to undertake the research.
ii. Initiate and Encourage an Investigation into the Efficacy of Alternative Replacement Therapies (Nasal, Sub-Lingual, Self-Administered Sub-Cutaneous Injections etc.) ii Raise Funds to Support and/or Conduct Research to achieve this aim.
ACHIEVING THE AIMS:
The aims will be achieved by following the AIDA ‘funnel’ approach.
1. Stage one will focus on raising AWARENESS of the problems with the way in which Pernicious Anaemia is diagnosed and treated. Recent developments mean that we are now able to engage with decision makers because of the way in which we have raised Awareness (the paper being published and questions being asked in Parliament).
2. Stage two will concentrate on us gaining decision makers’ INTEREST. This will be done by concentrating on:
i. Unnecessary Suffering by patients waiting to get diagnosed and receiving adequate treatment according to their needs
ii. The cost implications of misdiagnosis to the NHS and under-performance to the UK Economy
3. Stage three will concentrate on decision makers DESIRING to make the change. At this stage we, as a society, will be concentrating on facilitating change and liaising with decision makers in order to bring about the desire for change
4. Stage four will occur when the decision makers initiate ACTION to enable the changes to take place. As in stage three we, as a society, will be acting as facilitators but also as Advisers during this stage.
TIMESCALE FOR CHANGE:
It is not possible to estimate the timescale for the implementation of the above with any accuracy as this is a unique series of events. It has not been possible to identify any similar projects involving patient support groups that might give an indicator of the timescales involved.
It is worth noting that it has taken the society eight years to see the beginnings of Stage one being reached. It might be that steps two three and four might take another eight years.