WAMES is looking back and looking forward

2018 was a challenging year for WAMES due to an increase in campaigning opportunities and reduced funding.

To add to the challenge, our team of volunteers faced added responsibilities and setbacks, which reduced the number of hours they were able to give to WAMES.  Forget about problems coming in 3s. Sometimes it felt more like 33s!

In spite of that we are relieved to say we were able to achieve many of our goals including:

  • representing Welsh pwme at the NICE scoping meeting
  • getting the Health Minister’s understanding and support for improving GP training
  • representing pwme at the Welsh Government’s All Wales Implementation group (AWIG) for ME/CFS
  • telling AMs in the Senedd about their Health Boards’ delay in implementing the Task & Finish Group recommendations and the need for informed GPs to diagnose & advise patients

Going forward we will have to make some hard decisions i.e. reduce the range of our activities so we can continue to work effectively for ME in Wales.

Our 2019 priorities will be:

  1.  Health campaign – our focus will be on raising awareness in the NHS and looking for ways to improve GP understanding of ME & CFS including:
    • working with Health Board reps on the All Wales Implementation Group (AWIG) to develop pathways and patient information, and encourage services
    • producing awareness articles for the Royal College of General Practitioners (RCGP)Welsh newsletter and other professional organisations
    • exploring ways to improve GP education and training with the HEIW, the RCGP & Dr Nina Muirhead
    • assisting Cardiff University School of Medicine students to undertake research projects on ME
    • representing pwme on the NICE guideline consultation
    • enlisting the support of groups such as the Community Health Council and voluntary organisation councils

2. Helpline – we will continue to provide one to one peer support and information about many aspects of living with ME in Wales via email, telephone and our website

3. Blog, Facebook & Twitter – we want to continue to keep everybody informed about the key research developments, consultation & campaigning opportunities, events & services in Wales and news to inspire or educate pwme and their carers

Other activities – apologies if we are unable to:

  • produce the me voice magazine
  • play a large part in the International Alliance for ME (IAFME)
  • run a major public campaign for ME Awareness week
  • find time to apply for large sums of money to develop projects & employ workers
  • visit local support groups
  • campaign on more than health issues
  • complete the Photography project – the volunteer running it has reluctantly had to withdraw

Help us work to improve health care for ME in Wales:

  • after many years our treasurer really needs to step down for health and family I change the world in just my pyjamasreasons. Can you help us find a replacement treasurer?
  • our secretary could achieve more with someone to share admin tasks
  • encourage more people to raise easy money by shopping online through Amazon Smile and Easy fundraising. We need to fund the website hosting & maintenance, stay insured and cover campaigning costs (travel and communications)
  • be a social media volunteer to help us stay online even when ‘life’ intervenes!

WAMES’ vision is for a Wales where adults and children with ME and CFS and their carers are taken seriously and treated with respect, where diagnosis, treatment and services are accessible without a battle.   

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