Would you like to help shape healthcare for people with ME?
Some Health Boards in Wales are now beginning to organise stakeholder meetings, where people with an interest in services for ME and CFS come together to discuss how to improve services. All will eventually be looking for patients and carers to contribute their stories of:
- what it is like to live with the illness
- the good and bad experiences you have had finding a diagnosis and accessing services in the health board area.
- which services would be most helpful
Some health boards will invite people to an open meeting to hear their views and stories.
Some are asking for written or video stories to be used by the planning group or later in training sessions.
NHS staff will be forming planning groups to develop pathways and services and it may be possible for a small number of patients or carers to be involved with this. Each HB stakeholder group will decide what information they need and how they will gather that.
How to take part
Please let Jan know how you would be willing to take part, by emailing, ringing or writing to her.
She will need your contact details but will keep your identity hidden from the HB, if you wish.
This is a great opportunity to influence services so pass the word around. We must however be realistic and accept that for the moment all Health Boards are struggling to staff services and balance their books, so changes will take place gradually.
The biggest impact we can have in the short term is to help improve the understanding of ME throughout the NHS.
Can you:
- Tell your story in person in a meeting of professionals, patients and carers?
- Take part in discussions about ME at a meeting?
- Write or record your story of ME and accessing health & social care?
- List some key points you wish the Health Board to know about?
- Work with others in a planning group to find the best way of delivering care using existing resources?
- Be part of an e-group to review documents such as action plans, pathways, reports?
When?
Powys and ABMU health boards expect to hold their first stakeholder meeting in early September so please send stories from Powys, Swansea, Bridgend and Neath Port Talbot as soon as possible.
Once you have told Jan how you wish to take part she will let you know as soon as she has more information about your Health Board’s plans.
Contact: Jan Russell enquiries@wames.org.uk 01970 636515
The Coach House, Frongog, Aberystwyth SY23 3HN
As soon as BCUHB show an indication they are wanting to meet up with local people with ME and there carers I want to be involved. As my recent complaint has resulted in training and awareness for ward sisters and outpatient staff into the condition I am hoping I can build on this within the trust.
When or if this happens in the Cwmbran area could you let me know as I as very interested in taking part. Sarah x
I am in touch with a lot of people who have ME and they have stories to tell. It is sometimes difficult to tell which Health Board people come under when they ask for support. One person is now crying out for help as she has waited 5 years for a diagnosis but the GP refused but has now said she has Fibromyalgia. However she got no points at all for PIP as the GP only came up with this diagnosis after she had filled in the PIP form and presumable, if they contacted him, he failed to confirm. The Medical Practice doesn’t diagnose M.E. (as it’s not a ‘real illness’) and Fibromyalgia, she was told by the GP, is also something that she can control and from which she can choose to get well. Her exhaustion is nothing more than the pain from the Fibro and that’s that! In the meantime her condition is deteriorating. This is so difficult when GPs are so uncooperative and ill informed.
MESiG wants to be fully involved with all aspects so that people in Wales can have a better deal.
Miriam